(New York) – The latest revisions to China’s Criminal Law impose up to seven years in prison for “spreading rumors” about disasters, Human Rights Watch said today. The revised law, which took effect November 1, 2015, does not clarify what constitutes a “rumor,” heightening concerns that the provision will be used to curtail freedom of speech, particularly on the Internet.

“The revised Criminal Law adds a potent weapon to the Chinese government’s arsenal of punishments against netizens, including those who simply share information that departs from the official version of events,” said Sophie Richardson, China director at Human Rights Watch. “The authorities are once again criminalizing free speech on the Internet, which has been the Chinese people’s only relatively free avenue for expressing themselves.”

The National People’s Congress Standing Committee approved the addition of a provision to article 291(1) of the Criminal Law (Criminal Law Amendment Act (9)), which states that whoever “fabricates or deliberately spreads on media, including on the Internet, false information regarding dangerous situations, the spread of diseases, disasters and police information, and who seriously disturb social order” would face prison sentences – with a maximum of seven years for those whose rumors result in “serious consequences.” The vagueness of the provision means that individuals doing nothing more than asking questions or reposting information online about reported local disasters could be subject to prosecution.

In the past, the Chinese government has detained netizens who questioned official casualty figures or who had published alternative information about disasters ranging from SARS in 2003 to the Tianjin chemical blast in 2015, under the guise of preventing “rumors.”

The revision was made in the context of a wider effort to rein in online freedom since President Xi Jinping came to power in 2013:

  • In August 2013, the authorities waged a campaign against “online rumors” that included warning Internet users against breaching “seven bottom lines” in their Internet postings, taking into custody the well-known online commentator Charles Xue, and closing popular “public accounts” on the social media platform “WeChat” that report and comment on current affairs;
  • In September 2013, the Supreme People’s Court and the Supreme People’s Procuratorate (the state prosecution) issued a judicial interpretation making the crimes of defamation, creating disturbances, illegal business operations, and extortion applicable to expressions in cyberspace. The first netizen who was criminally prosecuted after this took effect was well-known blogger Qin Huohuo, who was sentenced to three years in prison in April 2014 for allegedly defaming the government and celebrities by questioning whether they were corrupt or engaged in other dishonest behavior;
  • In July and August 2014, authorities suspended popular foreign instant messaging services, including KakaoTalk, claiming the service was being used for “distributing terrorism-related information”;
  • In 2015, government agencies such as the State Internet Information Office issued multiple new directives, including tightening restrictions over the use of usernames and avatars, and requiring writers of online literature in particular to register with their real names;
  • In 2015, the government has also shut down or restricted access to Virtual Private Networks (VPNs), which many users depend on to access content blocked to users inside the country and also help shield user privacy;
  • In March 2015, authorities also deployed a new cyber weapon, the “Great Cannon,” to disrupt the services of GreatFire.org, an organization that works to document China’s censorship and facilitate access to information;
  • In July 2015, the government published a draft cybersecurity law that will requires domestic and foreign Internet companies to increase censorship on the government’s behalf, register users’ real names, localize data, and aid government surveillance; and
  • In August 2015, the government announced that it would station police in major Internet companies to more effectively prevent “spreading rumors” online.
     

Activists in China are regularly prosecuted for speech-related “crimes,” Human Rights Watch said. The best known of these crimes is “inciting subversion,” which carries a maximum of 15 years in prison. But authorities have also used other crimes such as “inciting ethnic hatred,” as in the case of human rights lawyer Pu Zhiqiang, who has been detained since May 2014 for a number of social media posts questioning the government’s policies towards Uighurs and Tibetans.

While providing the public with accurate information during disasters is important, the best way to counter inaccurate information would be to ensure that official information is reliable and transparent, Human Rights Watch said.

Above all, journalists should have unimpeded access to investigate and inform the public about these events, and the wider public should have the freedom to debate and discuss disaster response.

“The casualties of China’s new provision would not be limited to journalists, activists and netizens, but the right of ordinary people and the world to know about crucial developments in China,” Richardson said. “The best way to dispel false rumors would be to allow, not curtail, free expression.”

Posted: January 1, 1970, 12:00 am

The fight against global toxic pollution has reached a critical milestone: the 50th country has ratified the United Nations Minamata Convention on Mercury, triggering its entry into force in August.

A 12-year-old boy shows the mercury he carries in his trousers’ pockets for gold processing in Homase, Amansie Central district, Ashanti Region, Ghana.

© 2014 Juliane Kippenberg/Human Rights Watch

Mercury is a shiny liquid metal whose largest use globally is small-scale gold mining; other areas of use include manufacturing and industrial processes. But mercury is toxic. It attacks the nervous system, can result in life-long disability, and is very harmful to children. In higher doses, it can kill.

I have seen with my own eyes how children in Ghana, the Philippines, Tanzania, and Mali have been exposed to this toxic substance. Twelve-year-old “Kwame” in Ghana showed me a small bottle of mercury he always carried with him. He mixed mercury into the ore to create a gold-mercury amalgam, and then burnt this over a fire at home to retrieve the raw gold, breathing in its toxic fumes.

The Minamata Convention brings hope for people like Kwame. It obliges governments that ratify the convention to promote mercury-free gold processing methods; take special measures to protect children from exposure; improve health care; and put an end to particularly harmful practices in gold processing, including the burning of themercury-gold amalgam in residential areas. It also provides controls in many other areas, such as mercury use in products and manufacturing processes, and unintentional emissions stemming from coal-fired power plants.

Ghana has already ratified the convention, as have other important gold mining countries such as Peru, Ecuador, Mali, and Burkina Faso, as well as donors such as the United States and Japan. On May 18, the European Union and seven member states ratified the convention, bringing the total number of ratifications over 50, the number of ratifications required for the treaty’s entry into force.

The convention is named after the Japanese fishing town of Minamata, where mercury was discharged into the bay by a large chemical company from 1932 until 1968. Japan has recognized that more than 2,955 suffered mercury poisoning as a result, but subsequently compensated about 60,000 people. The real number of victims is thought to be even higher.

It is great news for Kwame and millions of others that the Minamata Convention is about to enter into force. Now comes the hardest part: Governments need to put it into practice. 

Author: Human Rights Watch
Posted: January 1, 1970, 12:00 am

A family from Afghanistan pushes their older mother in a wheelchair near Roszke, Hungary after crossing the border with Serbia. September 13, 2015.

© 2015 Zalmaï for Human Rights Watch
 

(Athens) – Unnecessary delays and arbitrary barriers are keeping older refugees and asylum seekers stranded in Greece, unable to reunite with family members who have legal status in the European Union, Human Rights Watch said today.

Family reunification often focuses on minors and their parents. But hundreds of older refugees and asylum seekers currently in Greece who have fled war zones and persecution are waiting to learn if they will be allowed to reunite with adult family members who have been granted residency in another EU country. Although EU law provides for family reunification for older people, lack of clarity or explicit provisions governing the process means that they can remain in limbo, far from their family for prolonged periods of time.

“These older people, already victims of conflict and persecution, hoped to find protection in the EU after treacherous journeys to Greece, and to be reunited with their family,” said Bethany Brown, researcher on older people’s rights at Human Rights Watch. “Now they don’t know if they will ever see their relatives again.”

Under international human rights law, everyone has a right to family life. For refugees, asylum seekers, and migrants, the possibility of family reunification is an aspect of that right, but barriers, including lack of information and clarity around eligibility for reunification, is causing anguish amongst older people, Human Rights Watch found.

A refugee squat in an abandoned factory on Lesbos, Greece, where dozens of asylum seekers are living in fear of being forcibly returned to Turkey under the EU-Turkey deal. 

© 2017 Arash Hampay for Human Rights Watch

In December 2016, Human Rights Watch interviewed 13 older refugees and asylum seekers in four camps and one refugee squat around Athens. Nearly all said they were seeking to be reunited with family in other parts of Europe. Human Rights Watch found, however, that these people often face seemingly insurmountable legal and practical barriers to reuniting with their families. Almost all had been waiting in Greece for more than eight months. The barriers included: a narrow interpretation of family under national laws, misinformation, and confusion about the process.

While several barriers are common to all asylum seekers, they can have a more significant impact on older people. Older people have been shown, in some contexts, to have significantly higher rates of psychological distress than the general refugee population, and often suffer from health issues, injuries and violence during displacement, and frailty that can be exacerbated by time and uncertainty. One asylum seeker interviewed in December 2016 passed away before officials reached a decision on whether she could reunite with her children in Germany.

Barriers include lack of information about family reunification procedures for older people. Many of those interviewed said they had no idea about the status of their application or how to obtain information about it. In some cases, Greek Asylum Service officials who met with them had told them not to apply for reunification.

An older woman sits outside caravans in a camp for asylum seekers, near Athens, Greece.

© 2016 Human Rights Watch

“Giselle,” a 63-year-old woman from Syria, told Human Rights Watch in December 2016: “I feel pain everywhere: in my head, in my stomach.... I wish to be established, to have the daughters of my sons around me.” She had been with her husband in a camp outside Athens since March 2016. “My granddaughter [in Germany] says ‘I want to break the phone to get through to you.’”

Greek authorities and other actors providing information to asylum seekers, including the United Nations High Commissioner for Refugees, and the International Organization on Migration, should inform anyone requesting asylum of their rights under the Dublin III regulation, the primary EU legal instrument establishing criteria and mechanisms for determining the member state responsible for examining an application for international protection. The information to be provided should explicitly include information about family reunification. Human Rights Watch and other organizations have documented serious gaps in access to information and legal assistance, particularly on the Greek Aegean islands, the main entry point to Greece for migrants and asylum seekers.

Human Rights Watch found an alarming lack of available data on older refugees. Despite repeated requests to the Greek Asylum Service, it has not provided data it says it has on the number of older refugees in Greece; the number of reunification requests; or the average length of time such procedures are taking.

In the short term, recognition and support for a relatively small caseload of older people stranded in Greece seeking to reunite with adult children and grandchildren would relieve suffering, Human Rights Watch said. In the longer term, better systems to address family reunification are urgently needed.

The Greek Asylum Service should identify and provide accurate and timely information to older refugees and asylum seekers on how they can reunite with family members. EU member states should ensure that procedures for family reunification are accessible and efficient for all eligible family members, as outlined by international law.

World Report 2017: European Union

World Report 2017: European Union

Faced with significant strategic challenges, EU governments and institutions responded in 2016 in ways that often undercut or set aside core values and rights protections rather than working consistently together to defend them. 

A number of organizations working for refugees in Greece, including the UN High Commissioner for Refugees, have called for the protection of the right to family and speedy reunification by EU member states. They have criticized EU and national laws for defining “family” to mean only spouses and minor children (under 18 years old).

In an Action Plan published in December 2016, the European Commission recommended tougher measures aimed at increasing the number of returns of those stranded on the Greek Islands to Turkey, under a deeply flawed EU deal signed with Turkey in March 2016. One of these measures ended exemptions for vulnerable groups – which include older people – and people eligible for family reunification. The exemptions were aimed at protecting them from return to Turkey under this agreement. The measures in this Action Plan could have a serious impact on older people’s rights and well-being, Human Rights Watch said.

“Older refugees and asylum seekers should be able to enjoy family life,” Brown said. “The delays and barriers for older asylum seekers undermine the well-being and integration of communities across Europe.”

Accounts by Older Asylum Seekers

Older refugees and asylum seekers in Greece have been forced to leave their homes, their family lives shattered by war. Many spoke of the desperation they felt to reestablish their family relationships after losing everything else.

“Nesrin” is an older Syrian-Kurdish woman who was living in an outdoor camp with her daughter outside Athens when Human Rights Watch interviewed her in December 2016. She and her daughter are unclear about where Nesrin’s application to be reunited with her sons in Germany stands. Nesrin said she did not know her age but has tattoos on her face that she said her mother gave her when she was a baby “to make me beautiful.” This tradition was common until 50 years ago, according to historians. She told us she has slipped discs in her back, and walked with difficulty.

As she talked about her adult children, scattered around Germany, a Greek island, and Iraq, she started to cry and could not continue to speak. Her daughter said: “She is sick, and has been left here. They [officials] said that she can see her sons [in Germany], and then ‘No.’”

Nesrin added: “All of my bones are in pain. I want to die, I really want to die. [But before I do,] I just want to see my sons.”

“Adnan,” 59, an asylum seeker from Syria, has an adult son, daughter-in-law, and two granddaughters in Germany. He has an adult son and daughter-in-law with him in Greece, where he arrived in March 2016. Adnan has applied to join them in Germany, but is unsure about what process they used. He expressed his anxiety about being separated from his family, highlighting the way his family lived together in Syria and what he stood to lose.

At the time of our interview, in December 2016, he lived in a camp just outside Athens. He said:

We came all this way as a family; we fled Syria as a family. [When my son and I were separated into different households with different files during registration here in Greece,] we said, ‘This is not human....’ I begged. ‘You cannot separate us into two families.’ I went to another interview and told them the same. That guy [Greek official] said that my son should give my case number, and maybe we can be together.... We are one family. Why would they want to separate us? Every one of us must serve the other. We have learned to live together. In Europe, everyone is on his own.

“Gisele,” 63, whose young granddaughters live in Germany, said that when it came time for her interview with the Greek authorities, “I told them my children are in Germany, and that I raised my granddaughters who are now there, and I wish to go to them.” She was living in a camp outside Athens when Human Rights Watch interviewed her in December 2016. She said that the officials told her that they could not promise that she will be reunited with them. She told us that when her granddaughter [in Germany] talks with her on the phone, her granddaughter says: ‘I want to break the phone to get through to you!’ Gisele had not seen her sons, her daughters-in law, or her granddaughters for over a year.

“Mussa,” 60, was born in Afghanistan. At the time of our interview in December 2016, he lived in a tent camp outside Athens. He told Human Rights Watch he has three adult children in Germany. He lives with his wife, a son, 18, and a daughter, 19, who has a disability. Mussa told Human Rights Watch that he fled the Mujahedeen in Afghanistan in the 1980s and went to Iran, only to be later threatened by a government official. He spoke quietly and intensely about his family’s journey and his anxiety over separation from his 18-year-old son:

We left [Iran] because I have a daughter who was engaged to marry.… [H]er fiancé became important in his government ministry. He was coming every day with a cool car from the ministry, asking her for a walk. He stopped her from going to school. She was unhappy. So, I called the father of that man, and sought to cancel the engagement. I paid everything. He broke the legs of my two sons. In the end, he was a politician and I had a normal life, [so we had no choice but to] sell the house and car, and flee.

Here in Greece, I have not told anyone this story. We were on a [Greek] island for six months, and we have been here [in the camp] for three or four months. Our first interview [with the Asylum Service] will be in one month. We applied for family reunification, but we are worried about our son because he is 18. They [officials] told our daughter that she could stay [with us] because of her special needs, but they didn’t say that about our son. We can’t leave behind our 18-year-old boy. [I know of] another family with such a case.

Right to Family Life

The right to family in international law is enshrined in the Universal Declaration of Human Rights (Article 16 (3)), and key human rights treaties including the International Covenant on Economic, Social and Cultural Rights (Article 10 (1)), the International Covenant on Civil and Political Rights (Article 23 (1)), the Charter of Fundamental Rights of the European Union, (Article 33 (1)), and the European Convention on Human Rights (article 8). Under international law the definition of “family” is not restricted only to spouses and minor children. The European Court of Human Rights refers to social, emotional, and biological factors when assessing whether a relationship should be considered part of “family life.”

Older people have the right to have their applications reviewed within a reasonable timeframe that considers their specific needs. They are recognized as a vulnerable group under EU law, and are entitled to appropriate support commensurate with that status, including information about how to apply for family reunification. Greece has incorporated EU minimum standards for the reception of asylum seekers into its domestic law, which include requirements to support vulnerable people, including those who are older.

The EU law that determines asylum processing, known as the Dublin regulation, says that in accordance with EU human rights law, “respect for family life should be a primary consideration for Member States when applying this Regulation.” It also states that “in order to ensure full respect for the principle of family unity and for the best interests of the child, the existence of a relationship of dependency between an applicant and his or her child, sibling or parent on account of the applicant’s pregnancy or maternity, state of health or old age, should become a binding responsibility criterion.”

However, the definition of “family member” in the Dublin regulation is limited to spouses, or partners and minor children, while the definition of “relative” refers explicitly only to aunts, uncles, and grandparents of adults. Parents of adults are not listed in this definition. This omission leaves an important gap in the protection of older people’s rights.

The Dublin regulation explicitly states that older asylum seekers in Europe who depend on the support of a family member in another part of Europe should be kept or brought together.

Dependency is not defined in the regulation, but developed by each member state’s case law, and it provides the main basis on which older parents in Greece seeking refugee status who may have adult children in other parts of Europe can seek reunification. Dependency on an adult child can entitle them to be kept or brought together. The European Commission encourages member states to use this option “in the most humanitarian way.”

Practical Barriers

EU asylum processes are failing to properly respect or protect the right to family life of older refugees in Greece. Many older refugees and asylum seekers find their lives are on hold as they wait to learn if they will be reunified with family, with little information and great uncertainty. This issue has long been ignored. The refugee crisis in Greece is just the latest place around the world where this reality is unfolding.

As reports about the deteriorating mental health of refugees and asylum seekers still waiting in limbo in Greece are becoming common, many organizations, including the UN High Commissioner for Refugees, have been advocating quicker family reunification.

The European Court of Justice has ruled that family reunification procedures should provide guarantees of flexibility and promptness to ensure the right to family life is respected. Multiple EU states, however, use a narrow definition of family in assessing family reunification requests.

The organization Action Aid, in its recent advocacy on family reunification, criticized such narrow definitions for effectively breaking up “key support networks that are not only important to the asylum seekers themselves, but to the societies in which they will eventually be integrated.”

The UN High Commissioner for Refugees too, has been vocal about European countries’ narrow interpretation of family to include only nuclear members. It has advocated that: “[T]he concept of family should be interpreted flexibly by States, which could reflect strong and continuous social, emotional or economic dependency between family members, though which does not require complete dependence (for example, as in the case of spouses or elderly parents).” For older people, the last surviving family relationships may not be nuclear family members.

But the Greek Asylum Service has said to Human Rights Watch via Twitter that: “Member States reject such requests when not obliged to accept fam[ily] members.” And that it “sends relocation request[s] to MS [Member States] where the family is if [reunification] not applicable under Dublin. Both too slow.” This pace may become even slower. On May 19, 2017, it was reported by the media that the German Interior Ministry is planning to accept only 70 asylum-seeker family members per month.

The Greek Asylum Service’s chief of the Dublin Unit, Isa Papiliou, also acknowledged to Human Rights Watch that asylum seekers have experienced misinformation, legal and administrative blockages, problems obtaining and verifying documentation, and difficulty communicating across borders. She also noted that refugees and asylum seekers “may believe that the procedure via the [EU] embassies may [take less time] … the embassies have a legal basis [to provide] family reunification directive separately from [the] Dublin [regulation].”

Recommendations

  • The EU, its member states, and, in particular, Greece should ensure that the right to family life for older beneficiaries of protection already in the EU is respected, including through family reunification, without onerous conditions or waiting periods;
  • Greece should resist EU pressure to weaken protections for vulnerable asylum seekers – including older people eligible for family reunification – under the EU-Turkey agreement of March 2016;
  • The European Commission should request the Greek government and its partner agencies to provide clear information from grantees about how the programs it funds in Greece benefit older people and other at-risk groups;
  • Greece should reform the intake system for asylum seekers in Greece, by providing information on family reunification and access to legal aid for at-risk groups, including older people;
  • The EU and member states, including Greece, should provide for speedier reunification for older people; and
  • EU member states should increase the use of dependency determinations for older refugees in Europe seeking family reunification.

Methodology

The research is based on interviews Human Rights Watch conducted between December 16 and December 23, 2016, with 13 older refugees and asylum seekers in four camps and one refugee squat around Athens. This relatively small number reflects the difficulty in accessing formal data about numbers and locations of older refugees and asylum seekers, and their decreased visibility within each setting. Human Rights Watch identified most of those interviewed by word-of-mouth. Despite small numbers, there was similarity in their stories around the anxiety and uncertainty of family reunification, creating reason to believe that other older people have had similar experiences.

Each interviewee consented voluntarily to be interviewed. None received remuneration, a personal service, or benefit in return for the interview. Names of the interviewees have been withheld to protect their privacy and security.

Human Rights Watch also interviewed officials from the UN High Commissioner for Refugees and representatives of nine aid organizations and the Greek Asylum Service’s Dublin Unit between November 2016 and April 2017.

Posted: January 1, 1970, 12:00 am

Mukuma Hamad, a volunteer health worker (L), and James Atai, a nurse, sit at a table displaying almost the total stock of basic medicines in the only health clinic in Hadara village, rebel-controlled Southern Kordofan. 

© 2016 Skye Wheeler/Human Rights Watch

When 14-year-old Hassina had still not given birth after more than two days of labor, her family started to worry. She was bleeding and had passed out more than once from exhaustion and pain. The nearest hospital was miles away. Ambulances had not been seen for years in the war-torn Nuba Mountains – the area of Sudan she called home – and nobody in her village owned a car.

Fearing for the mother-to-be and her baby’s life, the family opted for the only means of transport available: a motorcycle. Wedged between the driver and a relative seated behind her to hold her upright, Hassina was taken on a two-hour-drive along bumpy dirt roads to a larger village. There, the men and Hassina waited for a car. By the time Hassina reached the hospital, the baby had died.

Hassina, now 19, lives in rebel-held Southern Kordofan, a region in Sudan that, following the separation of South Sudan in 2011, has become the site of conflict between forces of the Sudanese government and the rebel Sudan People’s Liberation Movement-North (SPLM/A-North). Six years of on-and-off fighting and bombings by Sudanese government planes have led to hunger, widespread displacement, and destruction of schools, health clinics, and homes. The situation has also had a devastating effect on women’s and girls’ health.

A new Human Rights Watch report, “No Control, No Choice,” shows how both warring parties have obstructed humanitarian aid from reaching the region, leaving women living in rebel-held areas with virtually no access to contraceptives, trained health workers, or well-equipped clinics that could provide preventive or emergency health care for women of childbearing age.

As a result, young women like Hassina have little control over the number of children they bear or the spacing of their pregnancies. Instead they rely on local birth attendants, who often lack formal training or, like Hassina’s midwife, have lost their equipment in government attacks. As many local clinics do not even have stethoscopes or kits to measure blood pressure, the young mothers-to-be risk dying in childbirth or losing their newborns.

Most women and girls in the rebel-held Nuba Mountains of Sudan lack access to reproductive health care, including emergency obstetric care. Their plight is one of the little known yet far-reaching effects of years of obstruction of aid to the area by the Sudanese government and armed opposition. 

At 19, Hassina had already lost three.

Like many girls in the region, Hassina got married while still a child. With no end to the conflict in sight, her family had found it increasingly hard to feed her and her siblings and saw marriage as a way out. Although marrying that young can cause harm to a girl in many ways, including early childbearing, nobody talked to Hassina about sex or family planning. The lean, soft-spoken young woman had never seen a condom or heard about contraception.

Wrapped in a pink, flower-embroidered cloth called tobe, her voice a mere whisper, Hassina tells her story– a story of pain, loss, and lack of control over her body and life.  

When pregnant with her first child, the only prenatal care she received consisted of a local midwife touching her belly and telling her she would be fine. With only two hospitals left in the region to serve hundreds of thousands of people, the nearest full prenatal care is at least one full day’s walk away from Hassina’s village, Hadara. At the time, Hassina did not make the long journey for regular check-ups. Hence, she only learned that her cervix was too narrow to give birth vaginally after the emergency caesarean section that saved her life.

Mukuma Hamad, a volunteer health worker, holds a container of folic acid, the only assistance she can give pregnant women who visit the lone health clinic in Hadara village, in rebel-controlled Southern Kordofan. 

© 2016 Skye Wheeler/ Human Rights Watch

Without access to contraception or knowledge about family planning, she soon became pregnant again.

Knowing she might risk losing another baby during childbirth, Hassina did what many Nuba women with a history of birth complications do when close to term. When she was around seven months pregnant, she embarked on the long walk to the hospital, where she knew professional help would be available to deliver the child. For weeks, she camped in the shade of trees near the hospital, waiting for the contractions to start. Again, she had to have a caesarean, but this time the baby was born alive and healthy. Six months later, however, her little boy fell sick and died.

Many children in the region, health workers say, succumb to preventable childhood diseases before they learn to walk. Despite its bustling marketplace, Hadara, where all kinds of smuggled goods from cigarettes to tomato paste are traded, was already poor before the war began. Today, food is in short supply, and so are medicines. The village’s poorly equipped clinic has a patchy stock of antibiotics, deworming medication, and anti-malaria pills, which were dropped off by aid organizations that defy the ban on operating in the region. But vaccination campaigns for newborns have never reached the area. Even United Nations attempts have been stymied by the parties to the conflict.

Devastated, Hassina was well advanced in her third pregnancy, when, in 2015, Sudanese airplanes attacked, dropping bombs on Hadara. Then Sudanese ground troops moved in, torching most of the village, and forcing its inhabitants, including Hassina, to flee.

For weeks, Hassina and her family hid in a dried-up riverbed, while planes bombed the area and no cars were available to get to the hospital. She was still holed up in the riverbed when her labor began. After days of contractions and excruciating pain, the baby’s body cleared the birth canal. Its head, however, got stuck.  

Her fingers fiddling uneasily with the seams of the pink tobe wrapped around her head, Hassina casts her eyes to the ground, recalling those painful hours during which her family searched for transport to get her to the hospital and have the head taken out.

Not once does she raise her voice in anger. Yet, if the Sudanese government and SPLM/A-North allowed humanitarian aid to the area, she and other Nuba women would have a much better chance of protecting their own health and that of their children – and Hassina might after all be able to have a baby that is born alive and survives.

Author: Human Rights Watch
Posted: January 1, 1970, 12:00 am

Summary

Four years ago, after 14-year-old Hassina Soulyman spent two days in labor at home, weak from loss of blood and falling in and out of consciousness, her family knew something was terribly wrong. They set her on a motorcycle—the only transport in her village—with two men holding her between them for a two-hour ride to a larger village. There they waited hours for a car to take her to one of only two hospitals in the rebel-held areas of Sudan’s Southern Kordofan state. When they finally got her there, a doctor delivered her stillborn baby by cesarean section and told Hassina that her cervix was too narrow to give birth vaginally.

Without adequate health information or access to contraception, Hassina became pregnant two more times. Her second baby was delivered at the hospital but died before reaching six months. During the last weeks of her third pregnancy, when she was 18, Hassina and her family fled her village to escape aerial bombing by the Sudanese government. She went into labor in the riverbed where her family was sheltering and endured three days of obstructed labor, during which the body of the baby cleared the birth canal but the separated head was stuck in her womb before she could get transport to a hospital for medical assistance. She survived another operation, but as of December 2016, when Human Rights Watch met her, Hassina still did not have access to family planning assistance.

Most women and girls in the rebel-held Nuba Mountains of Sudan lack access to reproductive health care, including emergency obstetric care. Their plight is one of the little known yet far-reaching effects of years of obstruction of aid to the area by the Sudanese government and armed opposition. 

***

Women and girls living in rebel-held areas of the Nuba mountains of Southern Kordofan, Sudan have little or no access to contraception, adequate antenatal care, or emergency obstetric care—leaving them unable to control the number and spacing of their children, and exposing them to serious health complications and sometimes death.

Reduced access to health services is one of the many devastating consequences of six years of armed conflict between Sudanese government forces and the armed wing of the rebel Sudan People’s Liberation Movement/Army-North (SPLM/A-North), a spin-off of the former southern Sudanese liberation movement and now ruling party of independent South Sudan.

Healthcare access was low in the four areas currently under the control of rebels– and worse than in other parts of Sudan because of marginalization by Sudan’s government and earlier conflicts— even before the current war began in 2011. The poor humanitarian situation there cannot be entirely blamed on the conflict. However, unlawful government bombardment, destruction of clinics including by bombing, poor distribution of medicines, and hard-to-cross frontlines have all further reduced access.

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A United Nations-led humanitarian aid effort to improve the humanitarian situation has not been put in place. Both parties to the conflict have failed to agree on a joint modality for a sustained humanitarian effort, despite 15 rounds of African Union-moderated talks over six years, and many proposals and other efforts by UN officials and diplomats. Hundreds of thousands of people live in the rebel-controlled areas without the health services, food aid, and other basic assistance that a full UN-coordinated humanitarian response would attempt to provide. Humanitarian aid workers in the area are concerned that civilians in some areas may now be facing the worst food shortages since 2011 and 2012, when food shortages contributed to massive displacement and people reportedly died of hunger.

In December 2016, two Human Rights Watch researchers interviewed 90 people in rebel-held areas of Heiban, Delami and Um Dorein counties, including 25 in-depth interviews with women and girls about their access to reproductive healthcare. Researchers also spoke with witnesses and victims of abuse, local rebel authorities, and humanitarian aid workers. This research builds on findings from five earlier Human Rights Watch investigations in the Nuba Mountains region, hilly areas of Sudan’s Kordofan area where communities from different Nuba tribes live, between 2011 and 2015.

While civilians living in Southern Kordofan, especially in the rebel-held areas, face a myriad of human rights abuses, this report focuses on limited access for women and girls to sexual and reproductive healthcare in the hope that highlighting this will draw the attention of the Sudanese government, SPLM/A-North, and the international community to this particularly neglected aspect of humanitarian needs in the area. The report also describes how many years of negotiations and various efforts by diplomats, the African Union (AU) and the UN have all failed to provide humanitarians with unfettered access to communities in the rebel-held areas.

When the conflict began in June 2011, Sudan’s government banned international aid workers, including from UN agencies and international non-governmental organizations, from traveling to rebel-held areas of Southern Kordofan.  This travel ban remained in place as, year after year, the two parties failed to agree on arrangements for humanitarian access or implement agreements. Restrictive national regulations for humanitarian groups, closures of NGOs, and expulsions of staff from Khartoum, including senior UN staff, created a climate in which humanitarian groups chose not to push hard for access (in rebel-held areas of Southern Kordofan). These restrictions meant that few international aid workers were allowed to work even in government-held areas of Southern Kordofan, and their activities were limited. Sudan’s government has also consistently forbidden aid workers to cross international borders into rebel-held Sudan from neighboring South Sudan or Ethiopia.

The SPLM/A-North have— despite these restrictions—encouraged and allowed aid workers to cross these borders into areas they control to deliver assistance. These programs, unauthorized by the Sudanese government, offer life-saving medical care and humanitarian assistance to civilians, but they only reach part of the population and their supplies are limited. Recently, the SPLM/A-North have asked for further negotiations rather than accepting a late-2016 offer from the United States government to deliver medical assistance from government-controlled areas within Sudan. The rebels have continued to insist that they will only accept a proposal that allows for at least some cross-border aid, both so they can safely transport wounded fighters to medical assistance in neighboring countries, and because they have little trust that Khartoum will not interfere with any flow of assistance originating from within Sudan, as the government has in the past. Human Rights Watch found that civilians living in the rebel areas, many of whom have lived through two wars and faced terrible violations by government forces, also do not trust the Sudanese government not to interfere in delivery of aid.

According to the World Health Organization (WHO), Sudan’s maternal mortality rate has fallen from 744 per 100,000 live births in 1990 to 311 in 2015. However, women and girls in conflict-affected areas like rebel-held Southern Kordofan do not have access to the key government health services, supported by donor money, that have contributed to this decline. No recent data on maternal mortality is available for the region, but a joint research effort by the UN and the Sudanese government in 2006 put Southern Kordofan’s maternal mortality rate at 503 per 100,000 live births, compared to 91 per 100,000 births in Northern state and 213 in Southern Kordofan’s neighboring Northern Kordofan state.

In rebel-held Nuba areas of Heiban, Delami and Um Dorein, antenatal care from skilled and equipped health workers is available at two hospitals and their outreach clinics, both operating without government authorization. However, many women and girls live too far away to access emergency care or live on the other side of frontlines of the conflict, making it too hazardous to travel to the facilities. Most pregnant women must rely on local birth attendants who have no formal training, or trained midwives who have not been able to acquire new or sterile equipment since the conflict began. Women and girls experiencing complications during labor may have to travel for days, often on dangerous routes, including across frontlines, to get emergency obstetric care.

Family planning is not available except in rare instances. The rebel SPLM/A-North administration provides the bulk of health care through a network of some 175 clinics, but these do not distribute contraception, including condoms. One agency provides three-month injectable contraception but restrictions imposed on them by the local rebels require patients’ husbands to give permission before they can provide the contraception to women.

Most of the women we interviewed did not know what a condom was and had not heard about other options for contraception. NGO workers, health workers and authorities told Human Rights Watch that condoms are rarely available in markets despite an increase in gonorrhea and syphilis cases over the past two years and high percentages of pregnant women testing positive for hepatitis B. Women and girls are unable to protect themselves from sexually transmitted infections or control their fertility.

In January 2017, the United States government, through a presidential order, lifted its economic sanctions on Sudan, citing the government’s cooperation on counterterrorism, its role in addressing regional conflicts, reduced fighting in the conflict zones, and an easing of restrictions on humanitarian access. US policy makers are due to report on Sudan’s continued performance in these respects in July 2017, and to decide whether to make the sanctions suspension permanent. Human Rights Watch has urged US policy makers to adopt a clear set of human rights benchmarks in this assessment. These should include respect for international humanitarian law, and in particular an end to indiscriminate bombing; demonstrable and tangible improvements to humanitarian access in conflict zones; releasing individuals arbitrarily detained without charge by the National Intelligence and Security Services; ending use of lethal force to suppress protests; and reforms to key legislation.

Human Rights Watch urges the US to postpone its evaluation of Sudan’s progress from July 2017 to a later date, as meaningful progress will take longer than the six months prescribed in the executive order. Also, more time is needed to assess Sudan’s commitment to making broader human rights improvements.

Since the government declared a unilateral ceasefire in June 2016, large-scale fighting has not been reported in Southern Kordofan, but shelling has been reported in some of Sudan’s conflict zones. In 2017, aerial bombardment, which has marked much of the conflicts in Southern Kordofan, Blue Nile state and the Darfur region, appears to have been paused, or at least greatly reduced. This year Sudan has allowed humanitarian agencies to conduct an assessment and deliver some aid in a previously inaccessible part of government-held Darfur, and allowed more UN staff in the government-held areas of Southern Kordofan and Blue Nile. Humanitarian organizations have welcomed improvements but government travel restrictions remain, especially in conflict-affected areas like Southern Kordofan.

Unimpeded humanitarian aid across all conflict areas is critical. Unless the Sudanese government, the SPLM/A-North, and the international community act to ensure humanitarian aid reaches rebel-held areas, the ability of hundreds of thousands of civilians to secure food and access healthcare—including comprehensive reproductive healthcare—may continue to deteriorate.

Even with limited available resources, all governments have obligations to provide access to essential medicines as defined by WHO, and to make reproductive and maternal healthcare available and accessible.

Obstructing the delivery of desperately-needed healthcare by impartial humanitarian aid groups in rebel-held areas, as the Sudanese government has done in the past, is a violation of Sudan’s obligations under international humanitarian law, a violation of the right to health, and discriminates against the Nuba people who are the population directly impacted. The SPLM/A-North also has violated its obligations as a party to the conflict by arbitrarily refusing to accept international aid to be delivered impartially from within Sudan.

The policies and actions of authorities on both sides— Sudan’s government and the SPLM/A-North – in preventing the delivery of life saving humanitarian assistance to communities in need, should be investigated by the UN's Independent Expert on Sudan and other special rapporteurs, including experts on the right to health and the rights of internally displaced persons, to determine whether they constitute prosecutable offenses of war crimes or crimes against humanity. In conducting such investigation, consideration should be given to the context in which the actions to obstruct humanitarian assistance have taken place, such as the Sudanese government’s aerial bombardment of populated areas, in order to determine the potential scope of crimes that may have been committed.

The UN Security Council should impose individual sanctions against commanders or leaders determined to be responsible for clear obstruction of aid or any serious violations of international humanitarian law and human rights law in Southern Kordofan and Blue Nile, and it should extend the arms embargo that currently exists on Darfur to Southern Kordofan and Blue Nile states. It should authorize a panel of experts to continue to monitor the situation in both areas. Currently, the Security Council maintains a sanctions regime on Sudan, which only covers violations that occur in Darfur.

Sudan should allow the UN and other international agencies to operate unobstructed in conflict areas, including Southern Kordofan and Blue Nile states. The SPLM/A-North should agree to access by impartial aid providers, and not withhold agreement for delivery of humanitarian assistance arbitrarily.

International law protects women’s right to healthcare, including access to family planning services.  Along with provision of food and other essential health services, humanitarian programming in rebel-held Southern Kordofan should include improving women’s access to reproductive health services that allows them to exercise autonomy and control over their bodies and lives.

Recommendations

To the Government of Sudan

  • Immediately stop all indiscriminate attacks on civilians and civilian objects, including the use of unguided fragmentation bombs and cluster bombs.
  • Immediately pledge to cease use of cluster munitions, in line with the international ban on cluster munitions.
  • In accordance with obligations under international law, urgently facilitate unimpeded access by UN agencies and national and international humanitarian aid groups to deliver impartial assistance, including sexual and reproductive healthcare, to civilians in need in all parts of Sudan, including areas under rebel control; expedite entry visas and travel authorization for humanitarian aid organizations and workers, and fully cooperate with such organizations.
  • Cancel arbitrary regulations on the operations of national and international nongovernmental organizations that place unnecessary obstacles and constraints on humanitarian assistance, and stop all bureaucratic and other obstruction of such operations. 
  • Agree on modalities for impartial humanitarian aid to be delivered into rebel-held parts of Southern Kordofan and Blue Nile states, both cross-line and cross-border. Allow international monitoring of the aid delivery. 
  • Investigate, charge and prosecute commanders responsible for unlawful attacks on civilians and civilian objects, including schools, hospitals and places of worship;
  • Invite investigators from the African Union and the United Nations and their respective human rights bodies, and allow them to carry out impartial investigations into human rights abuses in Sudan, including in Southern Kordofan, by both parties to the conflict.
  • Ratify and implement the UN Convention on the Elimination of All Discrimination Against Women and the Protocol to the African Charter on Human and Peoples' Rights on the Rights of Women in Africa (the Maputo protocol).

To the Sudan People’s Liberation Army-North

  • In accordance with obligations under international law, urgently facilitate unimpeded access by UN agencies and national and international humanitarian aid groups to deliver impartial assistance, including sexual and reproductive healthcare, to civilians in need in all parts of areas under SPLA-North control; allow international monitoring, expedite travel authorization for all humanitarian aid organizations and workers, and fully cooperate with such organizations.
  • Working with international humanitarian partners, provide, in all clinics, comprehensive sexual and reproductive healthcare, including information about family planning and sexually transmitted infections, as well as contraception methods that protect against HIV/AIDS and other sexually transmitted infections.
  • Cancel any local regulations, whether formal or informal, requiring women to obtain permission from their husbands to access contraception, make a public announcement of the change, and conduct information campaigns about family planning.
  • Conduct public awareness campaigns about family planning, female genital mutilation, child marriage, and maternal mortality.
  • Promote and ensure participation of women in peace talks and in senior positions in the civilian administration of rebel-held areas.
  • Adopt strategies to end child marriage and female genital mutilation and ensure perpetrators of domestic violence are punished within the law.
  • Publicly commit to respect the Convention on the Elimination of All Discrimination Against Women and the Maputo protocol.

To Humanitarian Organizations and Donors, including the European Union, the United States, the United Kingdom and Norway

  • Advocate with parties of the conflict and the United Nations Security Council to ensure that civilians affected by conflict in Sudan, including those living in rebel-held areas, can access humanitarian aid services that meet international standards and press for access to these areas with both parties.
  • Conduct a full, independent humanitarian needs assessment once access to rebel-held Southern Kordofan and Blue Nile is possible, and address the urgent sexual and reproductive healthcare needs of women and girls.
  • Ensure that all health services provided in the rebel-held areas adequately address the sexual and reproductive health needs of women and girls.

To the United Nations Security Council

  • Demand that the parties to the conflict ensure safe and unhindered access for impartial humanitarian aid to rebel-held areas of Southern Kordofan and Blue Nile states, across both conflict lines and borders.  Follow through with additional measures under Article 41 of the UN Charter, in the case of non-compliance, as outlined in Security Council resolution 2046.
  • Impose targeted sanctions such as asset freezes and travel bans against Sudanese government and SPLM/A-North or SPLA-North officials deemed to be responsible for serious crimes, including indiscriminate bombing and other violations, and for willful obstruction of impartial humanitarian assistance to Southern Kordofan and Blue Nile states in violation of international law;
  • In view of the significant evidence of serious violations of international humanitarian law against civilians by the Sudanese armed forces since 2011, expand the existing arms embargo on Darfur to apply to Southern Kordofan and Blue Nile.
  • Authorize an independent inquiry into serious breaches of the laws of war by both sides in Southern Kordofan and Blue Nile.

To the Independent Expert on Sudan

  • Travel to rebel-held areas of Southern Kordofan and Blue Nile states to monitor limitations on women's right to health. If access is not possible due to obstruction by the government of Sudan or the SPLM/A-N, conduct interviews in refugee camps in South Sudan and Ethiopia to collect this information.
  • Include a review of women's health in next report.

To the Special Rapporteur on the Right of Everyone to the Enjoyment of the Highest Attainable Standard of Physical and Mental Health

  • Travel to rebel-held areas of Southern Kordofan and Blue Nile states to monitor limitations on women's right to health. If access is not possible due to obstruction by the government of Sudan or the SPLM/A-N, conduct interviews in refugee camps in South Sudan to collect this information.

To the United States Government

  • Monitor progress made by the Sudanese government against a concrete set of human rights benchmarks to evaluate its eligibility for continued sanctions relief. Key among these benchmarks is whether Sudan allows unimpeded access by humanitarian aid groups to all conflict affected areas, including rebel-held Southern Kordofan and Blue Nile. Include access to maternal health care and family planning as a key indicator of access to humanitarian assistance;
  • Delay formal evaluation of Sudan regarding the US sanctions to allow sufficient time for real progress to occur. The US should also re-evaluate the sanctions regime with an eye to imposing “smart” sanctions and designate new individuals against whom there is credible evidence, for targeted sanctions.

Methodology

This report is based on an 11-day fact-finding mission to Sudan and South Sudan in December 2016. Two Human Rights Watch researchers visited villages and displaced communities in Heiban, Delami, Buram and Um Dorein counties in Sudan’s SPLM/A-North controlled areas of Southern Kordofan, as well as the Yida refugee camp in Unity state, South Sudan. Through interviews with local communities, humanitarian aid workers, and authorities, as well as site visits, Human Rights Watch assessed the impact of Sudan’s humanitarian blockade on the civilian population, and documented other human rights violations committed during the armed conflict, including the impact of the conflict on women’s reproductive rights.

Human Rights Watch interviewed more than 90 people in Southern Kordofan and South Sudan, including displaced people, refugees, victims, witnesses, local authorities, and humanitarian and health workers. We interviewed 25 women to understand obstacles to reproductive healthcare and the other human rights challenges confronting women. All but one of the women interviewed had children or had given birth, and most had done so recently. We interviewed 25 humanitarian aid workers and civil society members, including ten doctors and other health workers. Human Rights Watch also spoke to five people of authority in SPLM/A-N. Interviews were conducted mainly in English or in Arabic (and in once case in the local Turo Nuba language), through translators. Human Rights Watch researchers conducted most interviews individually, but sometimes, because of the preference of the interviewee or with their permission, in groups. Interviews took place in towns, villages, settlements, and in the Yida refugee camp.

We informed all interviewees of the purpose of the interview, its voluntary nature, and the ways in which data would be collected and used. We have withheld the names and other identifying information of some of those interviewed, and in some cases replaced them with pseudonyms due to their preference for anonymity. Interviewees were also told that they could end the interview at any time, and choose to answer only the questions they wanted to.

Human Rights Watch was unable to access many SPLM/A-North controlled areas that are harder-to-reach or lie across frontlines. Access to healthcare is, by all accounts, far worse in these other areas.

While civilians living in Southern Kordofan, especially in the rebel-held areas, face a myriad of human rights abuses, this report focuses on sexual and reproductive healthcare in the hope that highlighting this will draw attention of the Sudanese government and the international community to this particularly neglected aspect of the humanitarian needs in the area.

Human Rights Watch was unable to verify allegations of human rights and international humanitarian law violations by the SPLM/A-North in areas controlled by the Sudanese government, due to lack of access.

I. Background

The Protracted Conflict in Southern Kordofan

Civilians in rebel-held Southern Kordofan, estimated to be one million people, have spent most of their lives in conflict.[1] Much of Southern Kordofan is the “Nuba Mountains,” areas characterized by rocky hills where dozens of Nuba tribes live. In 1985, Nuba fighters began supporting the mostly southern Sudanese rebel movement, the Sudan People’s Liberation Movement/Army (SPLM/A), in its long war against the government of Sudan. The conflict was characterized by ethnic cleansing of the Nuba; abusive ground attacks; forced relocation from ancestral lands; widespread arrests, detentions and killings of Nuba individuals; and aerial bombardment.[2] A 2002 ceasefire, followed by the 2005 Comprehensive Peace Agreement between the SPLM and the government of Sudan, brought civilians a temporary respite.[3]

On June 5, 2011, Sudanese government forces and Nuba SPLA forces clashed again in Southern Kordofan’s capital, Kadugli.[4] The fighting followed escalating tensions over security arrangements in the state and the narrow re-election of the governor, Ahmed Haroun, wanted by the International Criminal Court (ICC) for serious crimes in Darfur.[5] The Sudanese government resumed aerial bombardment on populated rebel-held areas within days.

South Sudan officially seceded from Sudan in July 2011. The South’s independence did not address the desire for meaningful political change in the Nuba Mountains and neighboring Blue Nile state. The SPLA forces based there renamed themselves SPLM/A-North.[6] Fighting between the SPLM/A-North and Sudanese government forces spread to Blue Nile state in September 2011.  During the first year of the renewed conflict, scores of SPLM/A-North members and perceived sympathizers were arrested and detained.[7] 

The “new” war, now almost six years old, has had a devastating impact on civilians. Those living in rebel-held areas have been subjected to heavy bombing from planes and jets, and shelling, including on populated areas by the Sudanese government. These attacks killed at least 292 civilians and injured 749 between June 2011 and November 2016 in Southern Kordofan and Blue Nile states.[8] Civilians repeatedly described to Human Rights Watch researchers the intense terror and distress they experienced as a result of the bombardment. In December 2016, Diana Angelo, an aunt to six children killed in a bombing incident on May 1, 2016, described what she witnessed that day after the children, on hearing the sound of the planes, jumped into one of the large foxholes or ditches dotted all over villages and towns for people to crouch in during bombings:

One of the bombs fell straight into the foxhole and threw the boys outside and cut them to pieces. We found one of their heads past the fence, and the others were burned beyond recognition. There were pieces of brain, lungs and intestine everywhere. When I got there, the wife of Abdurahman (the mother of the children) kept on shouting: ‘Where are the children? Where are the children?’ She was injured too by the debris and had to be taken to the hospital. Abdurahman wanted to kill himself after the attack.[9]

Nearly 250,000 people have fled both states to refugee camps in South Sudan between June 2011 and November 2016, including about 100,000 from Nuba.[10] While some information about deaths, injuries and displacement is available, there is little detailed information about the effects on education, health, and livelihoods for those who have remained.

The African Union High-level Implementation Panel (AUHIP), a body created to deal with African Union (AU) recommendations on Darfur, as well as implementation of the 2005 Comprehensive Peace Agreement as the South’s secession approached, initiated negotiations between the government of Sudan and the SPLM/A-North a few weeks after the start of the conflict. The AUHIP drafted a framework agreement for political partnership and security arrangements, signed by both sides in August 2011, but later rejected by President Omar Hassan al Bashir. In November 2011, the SPLM/A-North joined two other Sudanese rebel groups and agreed to a unified political and military approach to regime change under the Sudan Revolutionary Front umbrella. This complicated the peace negotiations considerably, as did poor relations between Sudan and South Sudan, especially during and immediately following a short 2012 border war at the Heglig oil fields, and the civil war in South Sudan that began in December 2013.[11]

Fifteen sets of talks between the government and the SPLM/A-North in Addis Ababa, Ethiopia, have failed to produce a permanent, joint cessation of hostilities (both sides have issued temporary unilateral ceasefires), unfettered access for humanitarian agencies, or a hint of lasting peace.[12] UN Security Council resolution 2046 of May 2012, following the border violence, stated that both parties in Southern Kordofan and Blue Nile should allow unhindered humanitarian access or face punitive measures; but both sides have ignored the resolution and the Security Council has not taken any further action.[13] Diplomats from the US, the European Union, Germany, the United Kingdom, and Norway, as well as AU officials, have supported the peace process and urged both sides to end fighting and allow for unhindered delivery of humanitarian assistance.

 The government signed the AUHIP’s ‘roadmap for peace’ on March 16, 2016, promising to urgently resume negotiation on humanitarian access, and a cessation of hostilities, followed by a permanent ceasefire; however, the SPLM/A-North refused to sign until August.[14] Within days of their unilateral signing of the roadmap, the government launched several large-scale land offensives, preceded by aerial bombing and shelling, to capture important SPLM/A-North controlled agricultural areas, Al-Mardes in Delami county, Al-Azraq in Heiban county and Karkaraya in Um Dorein.[15] Two of those areas were successfully captured by government forces, but Karkaraya was later reclaimed by the rebels. When these areas were under their effective control, government forces and allied militias killed civilians and destroyed civilian property.[16] The attacks continued in April and May 2016 and displaced some 50,000 people from fertile areas according to one estimate by a humanitarian agency. President al-Bashir announced an initial four-month unilateral ceasefire in June 2016, which he subsequently extended until the end of June 2017.

There have been very few reports of aerial bombardment since the June 2016 ceasefire and, in comparison to earlier years, the dry season has arrived without government attacks. However, Human Rights Watch has received reports of some indiscriminate shelling on civilian areas by Sudanese armed forces.[17]

US Sanctions Relief in 2017

In January 2017, then-US President Barack Obama issued an executive order lifting longstanding US sanctions on Sudan.[18] According to a statement released by the US Treasury, the decision was “the result of sustained progress by the Government of Sudan on several fronts, including a marked reduction in offensive military activity, a pledge to maintain a cessation of hostilities in conflict areas in Sudan, steps toward improving humanitarian access throughout Sudan, and cooperation with the United States on counterterrorism and addressing regional conflicts.”[19]

Within six months or by July 2017, the Secretary of State, in consultation with the US Agency for International Development (USAID) and government intelligence community members, will issue a report with recommendations to current US president Donald Trump on whether the sanctions revocation should become permanent. The order did not identify clear benchmarks for progress or explicitly require improvements to the human rights situation — a remarkable oversight considering Sudan’s long, violent and extensively documented record of abuses against civilians.

Some progress on the ground, described later in this report, in terms of humanitarian access, has been made since the US and the Sudanese government began new negotiations over the US sanctions in 2016. Sudan’s Humanitarian Aid Commission (HAC) issued new regulations on December 15, 2015, which promised that humanitarian work would be facilitated and expedited.[20] However, it is not yet clear how far this access will extend or for how long. At the time of writing, there has not yet been any new access to rebel-held Southern Kordofan or Blue Nile, although Sudanese officials have told at least one senior UN official that she may travel to Kauda, the main town in the rebel-held areas.[21]     

Human Rights Watch has urged the US to adopt a set of human rights benchmarks to guide its assessment of Sudan, and to delay the final assessment to provide meaningful opportunity to determine if there has been real, lasting progress.[22] Six months is not sufficient time for meaningful progress in the areas mentioned in the executive order, or for improvements in the human rights situation. The benchmarks to measure Sudan’s progress should include an end to indiscriminate bombing and shelling, tangible improvements in humanitarian access, release of arbitrarily-held prisoners by the National Intelligence and Security Services, an end to use of lethal force to suppress protests and various law reforms. Regardless of decisions on broad economic sanctions, US relations should not be normalized without significant progress on human rights. 

US government officials should also carefully review the sanctions policy, with an eye on more effective measures over the long term, continuing to enforce existing individual targeted sanctions against those deemed responsible for serious abuses and consider additional designations, particularly in light of the overwhelming evidence of abuses by the Rapid Support Forces and National Intelligence and Security Service.[23]

Obstruction of Humanitarian Aid

The food situation here is terrible, sometimes we have nothing to eat; if there is, we eat once a day, even the children.

— Khaltouma Bashir, a 20-year-old woman currently nursing a breastfeeding baby, December 2016.[24]

In protracted conflicts all over the region, civilians depend on humanitarian assistance to ensure they can secure sufficient food and access health care, and rely on assistance to provide basic schooling.

All the women interviewed for this report, as well as NGO workers, other humanitarians and authorities in the rebel-held areas were especially concerned about current food shortages, a result of poor rains, conflict in high food-production areas, increasing restrictions on traders from government-held areas and South Sudan’s massive currency inflation, which has led to much-increased prices for basic commodities in markets in South Sudan. There is general agreement that food shortages by mid-2017 may be as bad as those in late 2011 and 2012, when people reportedly died of hunger.[25] A report issued in early 2017 has warned that crop production in 2017 may be even lower than in 2016, when poor rains led to small harvests.[26]

Independent monitors projected 2017’s harvest to only provide enough food in some areas to last through March in South Kordofan and through May in Blue Nile.[27] The USAID-funded Famine Early Warning Systems Network has predicted that areas currently in “crisis” status, including rebel-held Southern Kordofan, will deteriorate to “emergency,” one level above famine, between June and September 2017.[28] Hard-to-reach areas that are controlled by the SPLM/A-North may be particularly impacted. A news release issued by the humanitarian wing of the rebel movement in March 2017 said that people in the Kau-Nyaru area only have roots and leaves to eat.[29]

Some interviewees said that they were already running low on food and unable to afford the little food available in markets. “We had planted and harvested but when we fled attacks [including bombing], we did not bring any of it with us. We used to produce surplus but now we have almost nothing,” Nur Amin, 40 years old and displaced from the high-production area of Mardais, said.[30]

Volunteer teachers have kept schools open but most have few or no supplies.[31] Civilians have continued to flee bombardment and move to escape hunger. For example, in the first half of 2016, 7,500 people left Southern Kordofan for overcrowded refugee camps in South Sudan.[32] Within the area, tens of thousands of people are living in displacement.

The government repeatedly denied access to rebel-held areas to United Nations and international non-governmental organizations (INGOs) requesting permission to assess needs and provide aid from within Sudan (“cross line,” i.e. across front lines, assistance), despite multiple requests by the UN, especially in the first six months of the conflict. In August 2011, after two months of UN requests for better access, President al-Bashir said that no international agencies would be allowed to work in rebel-held areas.[33] The government has also insisted, citing sovereignty, that aid agencies cannot enter rebel-held Sudan bordering South Sudan and Ethiopia in the form of “cross-border” aid.

These restrictions created a de facto blockade of international humanitarian aid to rebel-held areas of both Southern Kordofan and Blue Nile. The government has also made travel to rebel-held areas difficult and stopped flights and cars from traveling to those areas. It bombed two key airstrips in rebel-held towns in the first month of the conflict.[34]

Staff from UN agencies also struggled to get the required permits to travel to government-held areas of the state and only a few UN international staff could work there, and sometimes no international staff from international NGOs were allowed to visit or live there.[35] In May 2016, the government issued a new set of directives putting further onerous restrictions on aid agencies seeking access to government-held areas. These include establishing three layers of permission for travel to government-held areas of Darfur and requiring that humanitarian NGOs “shall commit not to disseminate information, data and statistics relating to humanitarian work reports and surveys without returning to the government Humanitarian Aid Commission (HAC).”[36]

The Sudanese government under President al-Bashir’s National Congress Party has a long history of obstruction and hostility toward independent humanitarian agencies seeking to provide impartial and life-saving humanitarian assistance in Sudan. The government repeatedly used an array of strategies to delay, limit and deny access by humanitarian agencies to civilians in need of assistance during the long civil war from the 1980s to 2005. Flight bans, denials or massive delays in the processing of travel permits, limitations on the numbers of staff and unnecessarily bureaucratic or arbitrary procedures for importing and transporting relief materials have all been common Sudanese government tactics to restrict aid to civilian populations.

These policies contributed to the deaths of hundreds of thousands of people from famine and diseases, and led to international pressure on the Sudanese government to cooperate with Operation Lifeline Sudan (OLS), a cross-border UN-led relief operation that accessed much of southern Sudan in the 1990s.[37] The Nuba Mountains was, however, excluded from the OLS operation; even during the OLS years, agencies were only able to operate clandestinely.  In the 1990s, a famine there killed thousands of people.[38] In May 2006, Human Rights Watch reported on widespread intimidation, arbitrary obstruction and denials of access by the Sudanese government, including its Humanitarian Aid Commission, during the conflict in Darfur.[39] In March 2009, the government of Sudan expelled 13 international agencies and revoked the permits for three national NGOs working in Darfur.[40] In June 2012, the Sudanese government expelled another four agencies from eastern Sudan.[41] The government expelled four senior UN workers between 2014 and 2016, including the head of the Office for the Coordination of Humanitarian Affairs (OCHA).[42] These examples represent only some of a broader pattern of expulsions. International and national NGOs, including humanitarian providers, have also been shut down.

Although this tense environment was a disincentive for individual aid agencies to seek improved access to rebel-held Southern Kordofan, significant efforts were made by international actors collectively. On February 9, 2012, the United Nations, the African Union, and the Arab League jointly proposed a “Tripartite Agreement” for the provision of international humanitarian assistance to the civilian populations in South Kordofan and Blue Nile. Both sides finally agreed to the deal in August 2012 with their own conditions, but no serious progress on implementing the accord was ever made. UN and US government officials blamed the Sudanese government for this failure.[43] In November 2012, the agreement expired without facilitating any assistance. In the same month, a senior Sudan government official stated: “there is no humanitarian crisis in war-torn South Kordofan and Blue Nile.”[44] 

In 2013, OCHA, the UN Fund for Children (UNICEF) and the World Health Organization initiated a new effort to vaccinate children in the rebel-held areas.[45] The agencies estimate that some 162,000 children under five years of age live in the rebel-held areas of Southern Kordofan and Blue Nile and have not had access to routine vaccinations since the conflict began in 2011. The UN Security Council backed the plan.[46] The parties initially agreed in theory to a two-week cessation of hostilities in November 2013, but ultimately failed to agree on modalities for the transport of vaccines. “I think it is fair to say both sides have made a lot of effort, but neither side took the last mile in order for it all to happen”, a senior UN official told Human Rights Watch in 2014.[47] Negotiations have continued, but no further progress has been made.

Sudan has offered some humanitarian aid to the rebel-held areas of Southern Kordofan, but, at least in the first years of negotiations, only via government assistance or NGOs closely affiliated to the government, such as the Sudan Red Crescent.[48] The SPLM/A-North has rejected this form of assistance saying it is not impartial.[49] The government indicated some willingness to allow international agencies into the areas in recent years, on the condition of controlling all service delivery.[50]  However, none of these negotiating positions were ever tested.

The SPLM/A-North has however encouraged international NGOs and Nuba NGOs to operate in the rebel-held areas. These groups have brought critical medical assistance in from across international borders. Although patchy, these services—operating outside of officially sanctioned channels—represent the only services civilians and injured rebel fighters can access without leaving their homes for a refugee camp or becoming displaced in government-controlled Sudan. 

In early to mid-2015, the head of the AUHIP, former South African president Thabo Mbeki, proposed another way to break the deadlock. He suggested that both parties agree that a proportion of aid would enter the rebel-held areas from within Sudan, and a proportion from Ethiopia, cross-border. The SPLM/A-North agreed to as much as 80 percent of humanitarian aid entering the area cross-line, i.e. from within Sudan, and 20 percent from Ethiopia. The SPLM/A-North told Human Rights Watch that they considered this to be a major concession.[51] The Sudan government rejected the deal, and said again that no aid could enter from other countries into rebel-held areas.[52] 

In late 2016, in response to this deadlock, the US government offered to provide humanitarian assistance from within Sudan, consisting of only US government aid, delivered by US government-funded international humanitarian groups.[53] However, the SPLM/A-North did not accept this offer, instead asking for further negotiations and again demanding cross border aid.[54] Rebel leaders say cross border aid is important because, firstly, they want to be able to safely transport wounded fighters to medical assistance in neighboring countries. Rebel leaders said, secondly, that Sudan’s history of aid obstruction and human rights violations against Nuba has meant that both the rebel leadership and civilians have lost trust that aid controlled by Khartoum will be safe—one doctor told Human Rights Watch that he believes many Nuba civilians would, for example, refuse vaccinations from Sudan— or reliable, i.e. not subject to further obstruction and interference. Following the US decision to provide sanctions relief, the Sudanese government also said that it would allow UN staff to travel to rebel-held areas and it appears that at the time of this report’s publication that the major impediment to UN access to rebel-held areas is the SPLM/A-North.

Regarding access to government-held areas, Sudan has made nominal progress. Sudan’s HAC issued new regulations on December 15, 2016. These promised that humanitarian work would be facilitated and expedited.[55] However, government-approved travel permits are still necessary for conflict-affected areas and humanitarians must notify government authorities before traveling to any location outside of the capital.

 International humanitarians have subsequently been able to assess needs and deliver assistance in parts of Darfur’s Jebel Mara area now controlled by the government. At the time of writing, there has been not yet been any change to actual access to rebel-held Southern Kordofan or Blue Nile. 

Women’s Rights in Rebel-Held Areas of Southern Kordofan

You are told to hush, not to talk.

— Zeinab Mohammed displaced and living in Lula village, Heiban County, December 2016.[56]

Women have no voice. We have no voice here. You could get into politics, maybe, but only if you are educated.

— Afaf Saeed, displaced and living in Lula village, Heiban County, December 2016.[57]

As described below, women and girls in rebel-held Southern Kordofan face discrimination and violence, and have limited avenues for redress. All the women interviewed for this report felt that women’s rights were either at a standstill, or were going backward. Often women said they felt undervalued, including in their lack of voice or influence in their family lives, communities or in the SPLM/A-North administration. Women face multiple barriers to full participation in public life, including in the peace processes.

The people we interviewed said that in rebel-held Southern Kordofan child marriage is common and families often value educating their sons over their daughters. In some areas, many families still practice female genital mutilation (FGM). Women experiencing domestic violence lack legal protections, including against rape in marriage.

A 2016 NGO report on women’s rights and gender in the rebel-held areas of Southern Kordofan concluded that “the SPLM/A-N remains a traditional male-dominated and militarized movement with no clear agenda for delivering on their rhetorical commitments to gender equality and the empowerment of women and girls … (they are) to a large extent gender-blind and with strong patriarchal tendencies.”[58]

Political Participation

There are three women represented at the intermittent peace talks.[59] Only one of the women interviewed in the rebel-held areas had information about what was happening with the peace process, and all said they felt there was no way for women’s voices to influence the talks.

Nuba women fight in the rebel army and occupy some positions in local government, including leading two of the secretariats in the civilian administration; however, none of the seven commissioners or top leadership are women, and the SPLM/A-North’s 25 percent quota for administrative positions for women has not been met. Some women said they felt many men now consider 25 percent as a ceiling rather than a floor for female participation. “We are so far behind, there are no women’s rights here. Women have no respect, the [SPLM/A-North] promises are all just talk,” a Nuba female social worker working with an NGO said.[60]

There have not been any elections in the area since the war began and there are unlikely to be any soon. The SPLM/A-North women’s association is large and widespread but there are no independent women’s rights organizations or networks.[61]

Early Marriage

In the rebel-held areas families often marry off their daughters early, especially if the family cannot afford to send some or all of their children to school. Some interviewees said that sometimes, especially when they were displaced from villages, there was no nearby school available. “Early marriage is common. No one is trying to stop it. About 14 or 15 is normal, much worse since the war because there’s no money,” Hanasi Mohsin, who works for the social development secretariat in Heiban town, said.[62] Of the 25 women interviewed, 14 of them had married before they were 18 years of age, most guessed or said they were around 15 years of age, and two of them were married as soon as they had started menstruating. All over the world, child marriage often leads to early childbearing with attendant health risks and disrupts or ends a girl’s formal schooling.[63] Sudan’s law allows marriage at 14 years for both boys and girls.

Access to Education

Interviewees said that when resources are limited, they prioritize education of boys over girls. “I’ve had 11 children, five girls are surviving and three are married, they are 15, 16 and 17 years old. They were not able to go to school because we have no money. The boys are going to school,” 41-year-old Aisha Hussein said.[64] “Boys are treated better, because when he grows up he will provide for the family through a job while the girl will marry into another family,” Afaf Saeed, a mother of two children, said.[65] Khaltouma Bashir, who was uncertain of her age but looked around 15 or 16 years of age, married a soldier in part because there was no money for her to go to school. “My brothers did go, but there was not enough for me. I was just idle so decided to go for marriage,” she said.[66]

Several of the women interviewed identified education as the most important path for women to get authority and influence. “Education is the one thing that has to change for us to get our rights,” Amal Tutu, mother of five children, said.[67] A 30-year-old NGO worker, well-known in the Nuba humanitarian community, and newly-married, said, “I wanted to be able to finish my schooling and then get a job which is why I didn’t get married. No other way.”

Female Genital Mutilation

The civilian administration has done some work to end female genital mutilation (FGM), which is common in some areas closer to government-controlled parts of Southern Kordofan. 

All women and girls interviewed in Hadara village, Delami county, said that they, their sisters, and all the women and girls they knew, had clitorodectomies as young children.[68] (FGM was not reported in any of the other sites of research.) Sudan has a startlingly high national prevalence of FGM, just under 87 percent according to joint UN and government research.[69] Restrictions on access to aid have meant that women and girls in the rebel-held area have been unable to benefit from efforts by the government and the UN Population Fund (UNFPA) and partners to end the practice.

Domestic Violence

The SPLM/A-North Secretariat of Social Development and Women’s Rights, together with the women’s association, has worked to tackle domestic violence in at least Heiban and Delami counties, including through holding meetings with the community and asking senior people from the civilian administration to address the issue in public.[70] “There was a gathering and we were all warned by the chief,” Rabha Yabus, a 30-year-old from the area, said, “I was beaten but now my husband has stopped.”[71]

However, domestic violence cases are still reported to local organization staff and civil servants. One woman who worked for the local civilian administration said that she had to find transport to hospital up to six times a month for women who had been seriously beaten by their husbands.[72] “Recently a woman was cut badly on her skull, another one the skull was dented,” she said. Six of the 25 interviewees, from different counties, said that their husbands beat them. One of them, Amal Tutu, said:

Women’s rights are going backwards. Even when you want to express yourself you are not listened to. Even when you’re very tired your husband can make you get up and do your work. I have been beaten when I resist many times.[73]

Five others said that their neighbors, relatives or women they knew well were also beaten.

Lack of Legal Protections

The SPLM/A-North areas use the “New Sudan” laws and penal code, which punishes rape with up to 14 years of imprisonment and a fine. There are no other provisions in force that specifically protect women against gender-based violence.[74]

The justice system in rebel-held areas is mostly staffed by volunteers with little or no training. There are about 1,500 volunteer police working in the rebel-held Nuba mountains—only a small proportion of whom are women—and they have had no specific training or protocols on handling or investigating gender-based violence.[75] The rebel-held region has 21 volunteer judges who have not had any recent training, but no prosecutors or lawyers.[76] The head of the judiciary, Kodi Abd Rahman Harik, said that as far as he was aware, there had been no trials of perpetrators of domestic violence since 2011 and only one case of rape.[77]

International doctors working in the area said that they had treated a few rape cases over the years. Women’s rights advocates said they believe rape in marriage is fairly common, and six of the 25 women interviewed said that they had no choice but to have sex when their husbands wanted to. “You can say no if you’re menstruating, otherwise you have to do it,” a 35-year-old woman, Amal Ali, said.[78] “You have to have sex when he wants, if you refuse you might be caned. This has happened to my neighbors. For me, whether you like it or not, you do it,” another woman explained.[79]

Under the “New Sudan” laws, non-consensual sex, or sex against a woman’s will, is not rape if the man is married to the woman.[80] Only one health NGO provides post-rape care that includes the provision of emergency contraception if requested as outlined by World Health Organization standards.[81] None of the women interviewed knew that seeking medical attention is important after rape. There is no counselling or long-term psychological support available in rebel-held areas, including for survivors of sexual violence.

II. A Weak Health System

Decades of conflict and marginalization by Sudan’s government left Southern Kordofan state’s health system underdeveloped even before the current war began. Subsequent obstruction of humanitarian aid has meant that there has been no coordinated humanitarian relief effort to ameliorate the negative impact of an abusive conflict on the healthcare services available to the population there. Humanitarian organizations estimate that there are some 900,000 people living in rebel-held areas of Southern Kordofan (and a small area of neighboring Western Kordofan state).[82] Only roughly 650,000 of them are accessible to aid workers.[83] Largely volunteer-run clinics in the rebel-held area often lack supplies, and health workers, including midwives, have little formal training or capacity. Hospitals and clinics, which appear to have been specifically targeted, have also been damaged by aerial bombardment by Sudanese government planes.

Weak Health Infrastructure in Rebel-Held Southern Kordofan

In many clinics, there’s not even Tylenol.

—Hospital Director, Mother of Mercy Hospital, Heiban county, December 2016.[84]

Women, men and children living in rebel-held Nuba mountains have not had access to Sudanese government health services or unhindered humanitarian aid since the conflict began in 2011.

The availability of health care facilities and skilled health care providers in rebel-held South Kordofan falls far short of the need. In 2006, the World Health Organization set the standard for delivery of essential maternal and child health services at a minimum of 23 doctors, nurses and midwives per 10,000 people, while the International Labour Organization (ILO) sets the standard at 34.5 skilled health professionals per 10,000.[85] In 2013, research by WHO and the US Agency for International Development said 59.4 skilled health professionals per 10,000 were needed to end preventable maternal deaths.[86] For an estimated population of about a 900,000 people, the rebel-held areas of Southern Kordofan has only five doctors. There is no gynecologist or obstetrician in the rebel-held area.[87]

There are only two working hospitals, the Mother of Mercy Hospital run by the Diocese of El Obeid, also known as “Gidel,” (435 beds) and the smaller Cap Anamur - German Emergency Doctors’ (GED) hospital in Loweri (70 beds).[88] Both hospitals are in Heiban county, which can be a long journey—several hours or even two days—even by car from other parts of the rebel-held areas. Sometimes, because of active frontlines, the hospitals are entirely inaccessible.[89] These hospitals are the only facilities with the staff and equipment for surgery, treatment of serious wounds, and medical testing. Doctors working in these hospitals told Human Rights Watch that they regularly treat civilians or combatants who had reached the hospital only after lengthy journeys.

There are no ambulances in the rebel-held areas and very few civilian cars. As discussed later in this report, this is a major problem for women trying to access healthcare, including in emergencies such as complications during labor.

The SPLM/A-North secretariat of health runs around 175 clinics across the area that provide basic health care. None of the secretariat staff receive a salary. While this network of clinics means that, in theory, most communities are served by one, the clinics are typically staffed by volunteer nurses or community health workers, who often have no or only basic training.[90] The clinics lack basic equipment like weighing scales or test kits. Rapid tests for malaria are the exception.

Chronic shortages of medicines and difficulties in transporting them mean that basic medicines to treat malaria, worm infections and respiratory diseases are often not available. “In 2015 for a period we ran out of malaria drugs, seven people died, they came to the clinic but we had nothing to give them,” Gadam Ali, who runs the health secretariat in Delami county as a volunteer, said. “We never have any drugs for TB or leprosy.” All the community clinics that Human Rights Watch researchers visited in December 2016 were experiencing shortages of essential medicines or key equipment.[91] “The amoxicillin [an important antibiotic] is finished and we have no more medicines for urinary tract infections, which are very common here,” James Atai, a trained nurse in charge of the Hadara clinic, in Delami county, little more than a room with medicines on a table, said.[92]

The inadequacy of health services extends to key preventive care. Only a few facilities provide vaccinations, and child vaccination coverage is extremely low in part because of a lack of refrigerators.[93] In Hadara village, for example, health workers and local women leaders said almost none of the children have been vaccinated because the village is located far away from clinics with vaccinations. A major outbreak of measles in 2014 and 2015 involved at least two thousand suspected cases, and killed at least 30 children.[94]

The Sudanese government, UNICEF, and WHO conduct mass vaccination campaigns in non-conflict areas of Sudan. No such campaign has been conducted in rebel-held Southern Kordofan since 2010.[95]

Attacks Targeting Health Services 

Human Rights Watch documented six attacks on hospitals and clinics, including all the major health providers in the SPLM/A-North controlled area, between April and June 2014.[96]  The pattern of the attacks on healthcare facilities and the presence of drones over the facilities ahead of the attacks on three occasions, suggests that the hospitals may have been deliberately targeted, which would constitute a war crime. In these strikes, two patients were killed.

These attacks also had an impact on available health services. Soon after attacks on their hospital in Buram county in 2014, the medical NGO Médecins Sans Frontières (MSF) (Doctors Without Borders) pulled out staff, eventually forcing their Buram hospital to close.

Another major clinic, one of the few providing obstetric care, also closed in 2014 following the attacks.

In total, around 20 medical facilities have been damaged or destroyed in bombing raids over towns since 2011, according to the SPLM/A-North health secretariat. Johannes Plate, a health worker at the Loweri hospital, said that airplanes attacked the hospital area in 2014, 2015 and 2016. He said that these incidents scared people away from seeking health services: “There would be an immediate drop in outpatients, from about 200 a day to none, for about a week and then forty to fifty people a day in the following weeks. Even inpatients leave,” he said.[97]

III. Lack of Access to Reproductive Healthcare

I had a miscarriage at five months, of twins. They came out and then there was a lot of bleeding, a lot of pain. There was no car, no painkillers. I had to walk to the hospital because the bleeding would not stop.

Amal Tutu, who lives in a village in Heiban County, said her home is about a day’s walk from the nearest hospital, December 2016.[98]

The conflict has resulted in a further weakening of already sparse women’s healthcare services in the area, with tragic consequences for girls and women.

The women and girls that Human Rights Watch interviewed have few options for controlling their fertility, and many go through multiple pregnancies beginning at a young age, including as a result of child marriage. These factors raise the risk of pregnancy-related complications, as do overall poor health, including poor nutrition and Infibulation, a form of FGM common in Sudan, where the vagina is stitched or otherwise narrowed. This form of FGM can cause obstructed labor and is a main cause of obstetric fistula and maternal mortality in Sudan.

Pregnant women have extremely limited access to skilled health providers, vitamins and essential medicines, quality antenatal care, and emergency obstetric care. These factors increase the risk of being injured or dying from complications due to pregnancy and childbirth.[99]

Using population estimates from humanitarian groups working in the area and WHO estimates for Sudan’s birth rates (not disaggregated by region), we can estimate that perhaps around 33,500 births are taking place every year.[100] Bombing raids have stopped women from accessing care, including making antenatal visits. Four women interviewed by Human Rights Watch also said that they believed they had had miscarriages late in their pregnancies due to the stress and hardships they underwent when they experienced aerial bombardment. However, we were unable to confirm the medical causes of their miscarriages.

Human Rights Watch also found that women and girls had almost no access to contraception to prevent pregnancies and sexually transmitted infections.

Sexual and Reproductive Health in Protracted Crises

Hunger: this is the thing people worry about most, this and the bombing deaths and injuries they say is the ‘emergency.’ But women are dying in childbirth and there is very little healthcare, the schools are getting worse; six years of bad education is a crisis for this generation. Much more is needed to alleviate serious suffering.

— Nuba humanitarian aid worker.[101]

For situations of both acute and protracted crises such as armed conflicts or natural disasters, when regular health services may be compromised or ineffective and assistance is required to ensure access to health care, humanitarian groups have developed minimum standards of care to seek to ensure an appropriate and quality humanitarian response. The standards for sexual and reproductive healthcare are outlined below.[102]

The Minimum Initial Service Package for Reproductive Health (MISP) is “a priority set of lifesaving activities to be implemented at the onset of every emergency” recognized as a Sphere standard in 2004.[103] MISP provides that a reproductive health officer should be in place to coordinate efforts and help collect information; that reproductive health kits (containing medicines and equipment) should be available and used; that clinical care is available for rape victims; and that visibly pregnant women should be given clean delivery equipment. Referral systems for emergencies for women in labor and for newborns should be established and blood transfusions made available. Condoms should also be freely available. (See appendix for more).

While the standards foresee that these minimum services should be implemented within the first weeks of a humanitarian response, six years into Southern Kordofan’s conflict, these services do not exist.

The Sphere minimum standards in health action set out five benchmarks to assess whether minimum standards are being met:

  1. Whether all heath facilities have trained staff, sufficient supplies and equipment for clinical management of rape survivor services based on national or WHO protocols.
  2. Whether all pregnant women in their third trimester have received clean delivery kits.  
  3. Whether there are at least four health facilities per 500,000 people with basic emergency obstetric care and newborn care that women can be referred and transported to.[104]
  4. Whether there is at least one health facility with comprehensive emergency obstetric care and newborn care per 500,000 population. Comprehensive emergency obstetric care includes surgery under general anesthesia and safe blood transfusions.
  5. Whether the proportion of deliveries by caesarean section is not less than 5 percent or more than 15 percent.

In the rebel-held areas of Southern Kordofan, only one of these indicators is being met, and only partially. The Mother of Mercy (in Gidel) and the GED (in Loweri) hospitals both provide comprehensive emergency care, but neither are easily accessible, or sometimes at all accessible, for most of the population. As shown below in more detail, the other minimum indicators are not being met. There are no delivery kits in the area. Aside from clinics run by either the Diocese of El Obeid or GED, few facilities have basic obstetric medicines or equipment. Authorities and doctors told Human Rights Watch that probably over 99 percent of births take place at home, without skilled or equipped providers. Only two health providers perform caesarean surgeries in their facilities. Between them, the two facilities perform about 100 caesarean sections a year, about 0.2 percent of our roughly estimated number of births in the rebel-held areas, significantly below the Sphere minimum standard benchmark of 5 percent.[105]

Humanitarian organizations should – and increasingly do -work to provide not only emergency services but also help restore or create working healthcare systems.[106] Sexual and reproductive healthcare should be included in these efforts.[107]

Maternal Mortality and Morbidity

My aunt died in childbirth, they took her to the hospital and she died on the way with the baby in her womb, it was an hour by car.

— Aisha Hussein, Tongoli village, Delami county, December 2016.[108]

Low women’s status and poor access to health care has a devastating effect on maternal health. This is accentuated in conflicts: maternal mortality in humanitarian crises and in fragile settings is 1.9 times the world average, and represents 61 percent of the total number of maternal deaths worldwide.[109] 

Access to antenatal care, skilled healthcare during labor, and emergency obstetric care are critical for preventing maternal deaths and injuries. In the Nuba region, unless pregnant women live within reach of one of the two hospitals or the clinics these two institutions support with staff visits, supplies, and training, these services are out of reach.

There are no reliable recent estimates of the number of women and girls dying in childbirth (maternal mortality), or experiencing long-term infections, pregnancy or childbirth-related injuries or disabilities (maternal morbidity), for the rebel-held areas of Southern Kordofan.[110] However, previous estimates show elevated rates in the state. A joint research effort by the UN and the Sudanese government in 2006 put Southern Kordofan’s maternal mortality rate at 503 per 100,000 live births, compared to 91 per 100,000 births in Northern state and 213 in Southern Kordofan’s neighboring Northern Kordofan state.[111] Maternal mortality decreased nationally in Sudan from 744 per 100,000 live births in 1990 to 311 in 2015, but there is little reason to believe that the figure would have declined to the same extent in war torn, rebel-held Southern Kordofan.[112]

The little information that is available suggests that maternal mortality remains high. The Mother of Mercy Hospital documented two maternal deaths at their hospital in 2016 and three in 2015, out of about 260 to 280 births a year.[113] GED recorded two maternal deaths at their hospital in 2016, out of 193 deliveries and six maternal deaths that took place at women’s homes in areas near their outreach clinics.[114] Johannes Plate from GED wrote to Human Rights Watch that, “to get confirmed numbers is quite a challenge. But I had a meeting with the SoH [the SPLM/A-North Secretariat of Health] recently, and they showed me a statistic. There [sic] have confirmed, that around 350 women died in 2016, and were guessing that most of them were pregnant.”[115]

Most maternal deaths are preventable. Johannes Plate from GED said:

Unfortunately, most cases are arriving in the hospital too late; an unknown number is dying at home or on the road...  We figured out, that the main complication is prolonged delivery. That is caused by many reasons, but most of them would be treatable, if the woman previously had been examined by a midwife or would come to deliver at the hospital.

To sort out high-risk pregnancies, like twin pregnancies, suspected eclampsia, narrow pelvic, teen pregnancies or multipara, regular ANC’s [antenatal care] are needed. But most of the women are only visiting the ANC, once they are feeling sick. The undiscovered cases will deliver at home, in case of a complication the next health unit is too far and the means of transport are rare. [116]

Lack of Access to Adequate Antenatal Care

Pregnant women in rebel-held Nuba Mountains who live within access of either the GED hospital or Mother of Mercy Hospital, or one of their outreach clinics, can access antenatal care from trained and equipped providers.[117] Others must make do with little or no care at all.

Between a third to half of all maternal deaths are due to causes, such as hypertension (pre-eclampsia and eclampsia) and hemorrhage, directly related to inadequate care during pregnancy.[118] The World Health Organization recommends that during each pregnancy women make a minimum of four antenatal care visits that provide them with essential evidence-based interventions.[119]

Essential medical assistance includes identification and management of obstetric complications such as pre-eclampsia, tetanus toxoid immunizations, treatment for malaria and sexually transmitted infection identification and management (for example, syphilis). A visit at the end of the pregnancy is important to help find and manage complications such as multiple births and abnormal positions of the baby. Antenatal care is also important to connect the pregnant woman to healthcare providers and to provide her with information on where contraception is available, the importance of skilled attendance at birth, breastfeeding, early care for the baby, and birth spacing.  In Nuba, most village clinics (run by the rebel administration) in the rebel-held area lack the staff, the vitamins and medicines (at least in consistent supply), and the equipment to provide full antenatal care.

Almost half of the interviewed women that had given birth in the last four years said they had relied on village midwives for antenatal care, or did not have any antenatal care at all during their pregnancies. Most of the midwives in the area are traditional birth attendants, rather than trained midwives.[120]

None of the midwives or traditional birth attendants who treated the women interviewed in their home villages had equipment such as stethoscopes. “[The midwife] has no equipment, only her hands. She did not listen to the baby. I had no medicines or vitamins and she did not have anything to give me either,” Samia said.[121] In some cases, midwives had advised women interviewed that they should go to the hospital to give birth, either because of the patient’s history or because the midwife was able to determine that she might face problems. “Sometimes [midwives or traditional birth attendants] can feel that the baby is not in the right place and then can send mother to Gidel [Mother of Mercy Hospital],” Hadara village clinic manager, James Atai, said. “But normally when they decide to go to Gidel, the mother already has problems.”

Health officials said that folic acid, a vitamin supplement in pill form, is the only supplement delivered regularly to the secretariat of health clinics; iron and other vitamins are provided irregularly. Anemia from a lack of iron, often a cause of maternal mortality, may be very common, one doctor said, based on high rates of anemia amongst his patients.[122] Clinics are also usually supplied with quinine, which can be given to women in their first trimester for malaria. However, the main doctor in Loweri hospital said that malaria was still suspected to be the main cause of stillbirths at his facility.

Hypertension, pre-eclampsia or eclampsia is another major cause of illness and death during pregnancy (as well as delivery).[123] But very few clinics have instruments to measure blood pressure; for example, in Delami county, none of the secretariats of health clinics have a sphygmomanometer, which uses an inflatable cuff wrapped around the patient’s upper arm.[124] None of the clinics have received basic instruments such as weighing scales, stethoscopes, or fetoscopes since the war began.

Most women we interviewed said they experienced hunger at least at some point during their pregnancy. A lack of food and nutrition during pregnancy can cause illnesses in pregnant women, including anemia, and lead to low birth weights and poor early development for their babies.[125] There are no supplemental feeding programs in the rebel-held areas.[126] “Because of the fighting, we had to flee. I was often hungry in the last three months [of my pregnancy],” Afaf Saeed, a 25-year-old former cleaner said, “many days there was only a handful of food.”[127]  

Women who live close to one of the two hospitals or their outreach clinics, or who can find transport or walk to visit the facilities, said they received antenatal care. GED recorded 14,371 antenatal visits to its hospital and outreach clinics in 2016.[128] The Mother of Mercy Hospital said they had 777 admissions to their maternity ward in 2016, mostly commonly for miscarriage, prolonged labor, antepartum bleeding, malaria and neonatal sepsis.[129]

Several of the women interviewed ensured they got checkups, despite considerable distances to hospitals. Ten of the women interviewed went to about four checkups during their pregnancies, and had waited for cars or walked to Mother of Mercy Hospital or the Cap Anamur - German Emergency Doctors (GED), – which is usually around a day there and a day back walking.

“Gidel [Mother of Mercy] is about one or two hours if you can get a car from Heiban to there. I was hungry a lot at the time [when walking and staying there],” Afaf Saeed, a 25-year-old woman with two children said, but added it turned out to have been crucial, perhaps life-saving, that she made this strenuous effort. She found out during the checkups that she should give birth in the hospital because her blood was “too weak” to safely deliver at home.[130]

Of all the 25 women interviewed, only those who had used the Mother of Mercy’s antenatal care had slept under a mosquito net, given to them at their first visit, while pregnant. No other organization provides subsidized or free nets, in large part because of the high cost of transporting these bulkier items.[131]

Sonograms are available in both hospitals. Khadija el Hajj told Human Rights Watch that visiting the Mother of Mercy Hospital for a sonogram might have saved her life. The doctor was able to see that her baby had a swollen head. Under his advice, she went to the hospital for a cesarean section where she had a safe delivery. At the time of the interview, the baby was still in treatment.

Babies born in the GED Loweri hospital receive a Hepatitis B vaccine when they are born – as well as the usual early childhood vaccines – because health workers found after testing that 12.5 percent of women using the facility over nine months in 2016 have the disease.[132] The Mother of Mercy Hospital in Gidel recently began testing all pregnant women for hepatitis B in their antenatal clinic and found about 20 percent of these women were positive.[133] “We immunize those babies immediately after birth and are encouraging their mothers to deliver at the hospital,” said , the senior doctor working there.[134] 

Pregnant women or girls who visit Diocese of el Obeid facilities, including six outreach clinics, have checkups that include measuring the mother’s weight and blood pressure, testing (and if necessary, treatment) for HIV and hepatitis B, and provision of medicines to prevent malaria and tetanus immunization.[135] Six GED outreach clinics also provide consultations that include blood pressure and weight measurements and most also provide tetanus vaccines and anti-malarials.[136] Vaccinations are not available in most places as few clinics have refrigerators to store them.

Human Rights Watch spoke to four women who attributed their miscarriages and early births to the hardships and stress they underwent while experiencing aerial bombardment. The causes of miscarriage are complex and Human Rights Watch does not have the information or medical expertise to assess what happened in these cases. However, many people in the community said they felt there was a link.

A medical organization working in areas in Syria where aerial bombardment is common told Human Rights Watch “our field teams have documented both miscarriages and pre-term births as a result of ongoing bombing.”[137] A doctor from another medical organization was more circumspect, saying “traumatic events like bombings and attacks are creating stressful situations leading to early births, that occasionally can result in miscarriages.”[138] A 2013 news release from Médecins Sans Frontières said that “amongst pregnant women, miscarriages and pre-term births are on the rise because of the stress caused by the conflict,” but did not directly attribute the increase in miscarriages to bombardment, although this stressor was mentioned.[139] 

“It happened to me, in 2013, I was seven months pregnant. I ran to the foxhole when the plane came, came out and two days later I gave birth,” 41-year-old Aisha Hussein said, “the baby died.”[140] Another woman, Mujuma Hamad, working as a medicine dispenser in Hadara village in Delami county, said she miscarried immediately after an Antonov attack when she was eight months pregnant.[141] She said that she knew six other women in the village who miscarried at or around the time when aerial bombardments had taken place.

A social development administration worker in charge of women’s affairs in Heiban town said that since the war began in 2011, she knew at least seven women who had miscarried soon after aerial bombardment. The information manager for the secretariat of health said that she recorded three miscarriages in Kauda town in 2014 that had taken place when planes flew over threatening an attack, and that she also received a report that four women miscarried during aerial bombardment attacks in Mendi in 2015.[142]

Emergency Obstetric Care: The Three Delays

Hundreds of thousands of women live too far from the GED hospital or Mother of Mercy Hospital to be able to access emergency obstetric care. But even for those who do live within reach of the two hospitals, delays stop them from accessing these services.

Health experts highlight the importance of having a skilled health care provider during and after childbirth, and typically explain the contributing factors to maternal deaths and morbidity using the “three delays model.”[143]

The first delay follows the failure to recognize the need for emergency obstetric care, or when a decision is made, to not access emergency services. Undertrained midwives, or family members in the absence of health workers, can be slower than fully trained personnel to notice danger signs and ensure timely referral. In the rebel-held areas of Southern Kordofan, the extreme difficulties of finding and organizing transport and at times bombing raids, may stop women and their families from quickly choosing to get the patient to a hospital or clinic as soon as possible.

The second delay is when women arrive late to the referral facility, including when the facility is too far away to access quickly or when transportation is unavailable. A woman experiencing postpartum hemorrhage, which accounts for around 25 percent of maternal deaths globally, is at high risk of dying within two hours of onset without immediate intervention.[144] Women experiencing other problems, such as hypertension or obstructed labor, may have a longer window, of up to two days, to reach lifesaving care, in most cases.[145]

In the rebel-held areas, if women and girls face emergency complications during childbirth, they may be many hours or days away from lifesaving assistance. “In many cases women come from far to give birth, sometimes two days walking, sometimes the baby died on the way,” a GED midwife, Dahabaya Khamis, said.[146]

There are no ambulances in the region and mobile phone networks only work on some of the fringes of rebel-held areas. Since the war began, the number of cars has declined and authorities in places Human Rights Watch visited said there are typically only one or two cars even in the main towns and usually no cars in villages. “If I have an emergency when I give birth, if I find a car I am about an hour from the hospital,” Aisha Hussein, one of the women interviewed, said. “There were a lot of cars before the war. Now it’s hard to find one.”[147]

Families often end up carrying women in obstructed labor on a bed, local officials told Human Rights Watch. Four women told researchers that this would be their only option if they faced complications in labor. The head of the health secretariat in the county of Delami said this is a fairly common practice. “We can do nothing here … there is a car usually in Tujur to then go to Gidel, about three hours by foot, by bed, with a group of not less than 10 men. And sometimes the cars are not there, or one is broken down,” he said.

The executive director of Heiban county said:

It is very common that women can’t reach in time and die in childbirth at home. To get to Gidel is about six to seven hours if you climb across the hills, a one-day walk if you go through Kauda way. The child often dies. We use a bed to carry the woman to the hospital, a group of men carry her. Sometimes from the villages to here like this, and then they try and find a car. They go to the commissioner, but he’s not always here and sometimes he has no fuel. This happens between 5 and 10 times a month. Then we face a lack of blood when they give birth.[148]

“Sometimes we see a woman who has been in labor for three days and she’s just arrived,” a foreign doctor told Human Rights Watch.[149] One woman, Amal Tutu, miscarried twins and then had to walk a day to the hospital when the bleeding did not stop even though she was weak.[150] “There was no car, no painkillers. I was in pain but I knew that the local clinic would not be able to deal with it,” she said. She was treated at the hospital. Hawa Zeitoun, who is about 14 or 15 years old, spent the last two months of her pregnancy at the Mother of Mercy Hospital because she had complications, and she feared if she waited at home, she would not be able to manage the one-day walk to reach the facility.[151]  

The third delay is caused when the facility does not have sufficiently trained staff or is inadequately equipped. In rebel-held areas of Southern Kordofan, the only facilities fully equipped to handle obstetric emergencies are Loweri or the Mother of Mercy hospitals. The Mother of Mercy Hospital has a blood bank and a team of experts including anesthesiologists, and both hospitals can provide women with transfusions. Both the Mother of Mercy and GED Loweri can perform cesarean sections as well as provide all basic emergency care, including specialized antibiotics, oxytocin and anticonvulsants, manual removal of the placenta and assisted vaginal delivery.

GED provides support to six outreach clinics and only one does not have a midwife on staff who is trained to manage manual removal of the placenta, umbilical cord prolapse (when the umbilical cord emerges in birth before the fetus), breech delivery and other complications; in two clinics, staff can remove material from inside the uterus.[152]  Six other clinics are supported by the Diocese of El Obeid, who also run the Mother of Mercy Hospital in Gidel, where midwives on staff provide manual placenta removal, although they do not perform assisted (i.e. vacuum or forceps assisted) deliveries. Oxytocin and antibiotics are available, including via a drip in one clinic.[153] 

Otherwise, few health facilities are equipped to manage emergencies even if women can reach them. For example, misoprostol, which can be a life-saving medicine in cases of post-partum hemorrhage or miscarriage, is generally not available except in the two hospitals and a few clinics.[154]  Midwives are often inadequately equipped and trained.

Most women in Nuba give birth at home. All but four of all the women interviewed by Human Rights Watch gave birth where they were living, either permanently or while displaced by fighting, usually on the ground but sometimes on a bed. “There was dust blowing all over me,” Afaf Saeed, who was living in displacement near a riverbed a few hours’ walk from Heiban town because of aerial bombardment at the time, remembered.[155] Often women said in their interviews that they delivered with the assistance of family members, but in about half the cases a midwife was present. “I gave birth at home, I was afraid I would die I was in so much pain, but it was not for too long. The baby was the wrong way around, but the midwife could adjust the baby before the birth,” Samia Mohammed said.[156]

Even when a trained midwife can attend a birth, she often does not have access to equipment, like forceps, sometimes lost or destroyed in the war. For example, the midwife in Hadara village in Delami county said her kit burned with all her possessions when much of the town was burned in May 2015 by government forces.[157] There has been no large-scale training or re-training of midwives in the area, or in neighboring South Sudan, and no large effort to resupply them with equipment since the war began.[158]

In humanitarian crises where women tend to give birth at home rather than in facilities, humanitarian organizations try to provide women who are visibly pregnant with clean delivery kits (containing soap, a razor blade and cloth among other items). There has been no large-scale distribution of delivery kits for pregnant women in the rebel-held areas since the war began.[159] Simple UN-supplied midwife kits that each cover 50 deliveries and contain basic lifesaving equipment and medicines, are also not available in the rebel-held area.

Access to Contraception and Protection against Sexually Transmitted Infections

No, no condoms here. We’ve never had them. … Yes! We know what they are, but we’ve never seen them here, no family planning since the war.

— Staff members of Heiban town’s main clinic, Heiban county, December   2016.[160]

Every year we women get really tired of being pregnant and giving birth and there’s not enough food either, not enough vegetables to feed all the children. So, they are hungry and we’re worried about the situation all the time, there’s no option for a change.

— Raja Ibrahim, women’s rights and civil society leader, December 2016.[161]

What is a ‘condom’?

— Khadija al Haj, mother of one, Lula village, Heiban county, December 2016.[162]

Family planning, including access to condoms, is largely unavailable in rebel-held Southern Kordofan state, largely due to the overall gaps in health infrastructure and services, and in part because the major healthcare provider does not provide contraception. This has meant that women are unable to control the number and spacing of their pregnancies or plan their families either individually, or together with partners, to the detriment to their well-being and health.[163] The area’s apparently high number of early marriages makes the lack of access to contraception even more dangerous; for girls between 15 and 19 years old, complications due to pregnancy and childbirth is the second leading cause of death globally.[164] Multiple births can endanger the mother’s health and women who have more than four children are at increased risk of maternal mortality.[165]

The low levels of condom availability in the areas also means men and women are less able to protect themselves from sexually-transmitted infections.

Access to Contraception in the Rebel-Held Area

There is nothing you can do if you don’t want to get pregnant.

— Khadija al Haj, Lula village, Heiban County, December 2016.

Human Rights Watch interviewed all the main health providers and found that women and girls have few or no options for controlling their fertility. Overall access to reproductive health information and services is weak. The largest hospital and main health center is run by Catholic providers who do not provide contraception. To the extent that limited quantities of contraception are available, a local rule and cultural norms dictate that women must first get the permission of their husbands.[166] There is also a social stigma around using contraception, according to NGO workers and some of the women interviewed.

In many settings, women prefer long-acting contraceptives, especially if it is difficult to access health services and supplies easily. Only one provider, GED, provides such services –a three-month injectable contraception.[167] GED also regularly distributes a limited amount of condoms from its small hospital in Loweri, and six outreach clinics.[168] GED recorded 519 visits related to family planning in 2016 in its hospital and outreach clinics.[169] Johannes Plate, who works in the GED hospital, said that women often prefer long-lasting contraception to using condoms but that GED does not provide other options such as intrauterine devices (IUDs) or oral contraceptives as women may be displaced or unable to return to the clinic for other reasons. He also said they do not provide contraceptives in pill form as women often do not use it correctly.[170]

The Mother of Mercy, the region’s main hospital, does not provide any contraception because the organization is Catholic.  None of the rebel secretariats of health clinics provide family planning information or services, and only very occasionally stock condoms, which are not included in regular distributions.[171] One SPLM/A-North clinic visited by Human Rights Watch did have some condoms but the manager said that he only gives them away one at a time because he is uncertain when or if he will get more. MSF, which provided family planning services, closed its clinics after they were bombed in 2014 (see above). 

Local informal rules stipulate that women cannot access family planning without first getting permission from their husbands, and GED doctors are only able to provide three-month contraception, when women bring their husbands. Men sometimes beat their wives for using contraception, NGO workers in the region said. “This is because women are supposed to take permission from their husbands to get family planning and men don’t want them to. We need awareness to change this,” Leila Karim, the head of the SPLM/A-North women’s association, said.[172]

Condoms are not widely available in the markets, health workers and authorities said, but two women interviewed by Human Rights Watch also reported that they felt ashamed of buying them as, they said, it is widely perceived that only a “bad” woman would need one. “I want family planning. I don’t want to give birth all the time … (but) condoms are just for women who have affairs with other people,”19-year-old Rania Haidar, already a mother of two, said.[173]  A lack of knowledge and understanding about contraception is also a barrier. “Women are afraid of infertility, that it will be permanent. The other problem is that men are worried about other men, that their wives will go and have sex with other people, especially when he is away,” Umjuma Al Sheikh, one of the midwives working at the Loweri hospital said.

None of the women Human Rights Watch interviewed were currently using or had access to contraception where they lived and only one woman had accessed the GED hospital in Loweri, a day’s walk away for her. None of the other women knew that family planning was available there. Twelve of the 25 women interviewed did not know what a condom was and another three knew what they were but had never seen one.

“There is no way to control, no choice, you just have babies,” Afaf Saeed said.[174] Magda Dorjwaat, also interviewed in the same displaced community, echoed her: “There is no way to control births, you just have to give birth.”[175] Most had given up on trying to control pregnancy but two of the women interviewed were using the “calendar” method.[176]

A few women said that they were uninterested personally in using contraception because they felt they needed to, as one woman put it “replace the people lost in the war.”[177] But all saw the advantages of having family planning available. “Women want fewer children now, four is ideal so that you can feed and educate them,” a former worker at an NGO, said.[178] Fatima Abdelrahman, a 27-year-old woman displaced after government forces attacked and mostly destroyed her village, and struggling to feed her children, said:

Our clinic was looted and destroyed. In Kau there is a clinic, but it is one hour walking from here. But even before they were destroyed there are no condoms here, no family planning. Almost every year I give birth, it would be better if I could space it, it’s tiresome trying to feed all my children already.[179]

More widely available contraception, together with comprehensive sexuality education, could also help prevent early pregnancy leading to marriage or a loss of education for girls and young women.

Women interviewed in December 2016 said that, even though they were already married, they could perhaps complete more of their education if they could space pregnancies. “I would like family planning. I dropped out from school, I would like it so I could go back,” Samia Ramadan, 20 years old and a pregnant mother of two, said sadly.[180] Knowledge of family planning methods was low, and some interviewees did not know that it is possible to space births.

Difficulties Preventing Sexually-Transmitted Infections

The lack of condoms has made fighting sexually transmitted infections (STI), such as syphilis and gonorrhea, more difficult in Nuba. Local authorities have distributed some condoms as protection for both women and men against transmission of some STIs, including HIV, but even at the time of the distribution, supplies were limited. “We gather people and do awareness on HIV. But [because there are so few condoms] all we can recommend is abstinence and monogamy,” the rebel secretariat of health head, Tutu Mustapha Turkash, said.[181]

Testing for HIV is available in a few locations but only one place, the Mother of Mercy Hospital, can check white blood cell counts and then provide antiretroviral medicines in the right doses.

The number of syphilis and gonorrhea cases have increased in recent years, according to all the medical and NGO officials interviewed for this report.[182] No information is available about the overall incidence of the diseases, but, for example, the Mother of Mercy Hospital and clinics saw 64 cases in 2012, 74 in 2013, 107 in 2014, 142 in 2015 and 178 in 2016. Gonorrhea cases also increased, even more sharply, from 39 in 2013, 139 in 2014, 296 cases in 2015 and 896 cases in 2016.[183]  A health worker at the GED Loweri hospital said that they had seen an increase in both diseases in 2016 compared to the year before, and that they regularly treat newborns with congenital syphilis and conjunctivitis caused by gonorrhea.

In the 40 clinics supported by a local NGO, 3,199 cases of STIs were reported in 2014 and 3,462 cases in 2015. Health officials said they saw a much lower number of cases before 2014. Since none of these clinics have labs, these numbers of syphilis and gonorrhea cases, and patients’ treatment, are based on symptoms alone.

In a small town, Hadara, the local nurse said that he sees about two cases a week of suspected gonorrhea or suspected syphilis, and that last year there were more cases for these two diseases than anything else except for malaria.[184]

IV. National and International Legal Obligations

At all times during the conflicts in Sudan, both international human rights law as well as international humanitarian law – as a lex specialis - apply. In this context, Sudan is a party to both the International Covenants – the Covenant on Civil and Political Rights (ICCPR), and the Covenant on Economic, Social and Cultural Rights (ICESCR) – as well as the Convention on the Rights of the Child (CRC), and is a party to the Geneva Conventions and Additional Protocols I and II.[185] Nevertheless, civilians living in rebel-held parts of Nuba mountains have not had access to adequate life-saving humanitarian supplies since the conflict began 6 years ago.

The Sudanese government’s obstruction of humanitarian access flouts its obligations under both national and international law. The SPLM/A-North’s rejection of impartial humanitarian assistance also contravenes its obligations as a party to the conflict.

Obligations to Allow Unhindered Humanitarian Aid

The conflicts between the government and rebel forces in South Kordofan, Blue Nile and Darfur are non-international armed conflicts under international law, and governed by the body of international humanitarian law applicable to internal conflicts.  Sudan is a party to Additional Protocol II, relating to the Protection of Victims of Non-International Armed Conflict, and is also bound by customary international humanitarian law.[186] Under international humanitarian law, a civilian population suffering undue hardship is entitled to receive impartial humanitarian relief essential to its survival, and consent for provision of such relief may not be arbitrarily withheld. [187] All parties to an internal armed conflict, government forces and non-armed groups alike, must allow and facilitate rapid and unimpeded passage of impartial humanitarian assistance for civilians in need. While international humanitarian law permits parties to a conflict to take certain measures to control the content and delivery of humanitarian assistance, they cannot deliberately or willfully impede its delivery.[188]

Parties to an armed conflict must also ensure that humanitarian workers have the freedom of movement to conduct humanitarian operations.  Only in the case of “imperative military necessity” may their movements be restricted; these restrictions should be limited and temporary, such as when relief operations interfere with military operations and could endanger humanitarian workers.[189] The UN Security Council adopted a resolution in 2000 on the protection of civilians in armed conflicts in which it called upon governments and opposition armed groups to “ensure the safety, security and freedom of movement” of humanitarian relief workers.[190]

The rebel SPLM/A-North group’s leadership has the same obligations to allow humanitarian assistance as the government.

Serious violations of the laws of war are war crimes, and in both international and non-international conflicts, attacks deliberately targeted on aid workers or their property are prosecutable as war crimes under the International Criminal Court (ICC) statute.[191] Starvation as a method of warfare, including by willfully impeding relief supplies to deprive civilians of objects indispensable to their survival, is prohibited in all conflicts, although only prosecutable as a war crime before the ICC in an international conflict.[192] Nevertheless, “the intentional infliction of conditions of life, inter alia, the deprivation of access to food and medicine, calculated to bring about the destruction of part of a population,” constitutes the crime against humanity of extermination, when committed as part of a widespread or systematic attack directed against any civilian population, with knowledge of the attack, also in a non-international armed conflict. [193]

Actions by the Sudanese government and SPLM/A-North to block independent and impartial aid agencies to civilians in need in the Nuba mountains violate their obligations under international humanitarian law.

Sexual and Reproductive Health Rights

International and regional laws and treaties ratified by Sudan protect the right to health for all in Sudan, including the rights of women and girls to reproductive healthcare. These include the ICESCR, the African Charter on Human and People’s Rights and the CRC.[194]

The ICESCR articulates the right to health as “the right to the enjoyment of the highest attainable standard of physical and mental health.”[195] The 1981 African Charter on Human and People’s Rights also recognizes this right.[196] Governments have an obligation to take concrete and targeted steps to realize this right using available resources, including international assistance, as expeditiously and effectively as possible.[197] Governments should also ensure a minimum level of access to the essential material components of the right to health, such as the provision of essential medicines and maternal and child health services.[198]

The UN Committee on Economic, Social and Cultural Rights (CESCR) has identified the provision of maternal health services as a core obligation which cannot be derogated from under any circumstances, and which governments should take immediate steps towards fulfilling in the context of pregnancy and childbirth.[199] Such steps include safeguarding the freedom to decide if and when to reproduce, having access to safe and affordable methods of family planning and the healthcare services that will enable women to go safely through pregnancy and childbirth.

The CESCR has also articulated to governments the importance of the availability, accessibility, affordability, and acceptability of sexual and reproductive health care. It has outlined the importance of an adequate number of functioning health care facilities, and ensuring availability of trained and skilled health providers, noting that:

…essential medicines should be available, including a wide range of contraceptive methods, such as condoms and emergency contraception, medicines for abortion and for post-abortion care, and medicines, including generic medicines, for the prevention and treatment of sexually transmitted infections and HIV.[200]

And:

Unavailability of goods and services due to ideologically based policies or practices, such as the refusal to provide services based on conscience, must not be a barrier to accessing services; an adequate number of health care providers willing and able to provide such services should be available at all times in both public and private facilities and within reasonable geographical reach.[201]

International humanitarian law also highlights that expectant and nursing mothers, together with children, are “particularly vulnerable” and should be provided with specific protection.[202]

Women and girls enjoy a right to access health-related information under the ICCPR and IESCR, while the Convention on the Rights of the Child also has a right to health education that includes access to information on preventing early pregnancy.[203]

The Convention for the Eradication of Discrimination Against Women (CEDAW) protects the right of women and girls to decide the number and spacing of their children.[204] Sudan is not a party to CEDAW and despite advocacy by national and international human rights groups and UN agencies, President al-Bashir has said that Sudan will never join it.[205] Nevertheless, as one of the most widely ratified treaties (one hundred and sixty-five states parties, with only 22 countries including Sudan opting out), parts of the law may be considered to reflect standards of customary international human rights law. 

International law stipulates that states should ensure that all can access healthcare without discrimination, for example because of their race or sex.[206]  The civilian population in the Nuba mountains are facing discrimination based on their ethnic identity.

Acknowledgments

This report is written by Skye Wheeler, emergencies researcher in the Women’s Rights Division of Human Rights Watch, based on research conducted in Sudan and South Sudan in December 2016 together with Jonathan Pedneault, researcher in the Africa division.  Alexandra Kotowski, associate with the Women’s Rights Division assisted with logistical support, and Savannah Tryens-Fernandes, associate with the Africa division, provided editorial assistance.

This report was reviewed and edited by Nisha Varia, advocacy director of the Women’s Rights division; Leslie Lefkow, deputy director of the Africa division; Jehanne Henry, senior researcher in the Africa Division; and Diederik Lohman, acting director of the health and human rights division. Babatunde Olugboji, deputy program director, and Aisling Reidy, senior legal advisor, provided program and legal reviews.

Youssef Zbib, the Arabic language website and translation coordinator, arranged for translation of this report into Arabic. Olivia Hunter, publications and photography associate, Fitzroy Hepkins, and Jose Martinez prepared the report for publication. Multimedia production was coordinated by Pierre Bairin, multimedia director at HRW, and Sakae Ishikawa, senior video editor, with additional footage from Anthony Fouchard, freelance journalist and videographer.

Human Rights Watch wishes to thank the scores of women, victims and witnesses in Sudan, and their relatives, who talked to us, despite stigma surrounding sexual and reproductive health, and the courageous Sudanese activists who continue to document and report on abuses.

 

[1] Official population numbers are not available and the conflict has led to mass displacement since a 2010 census took place. Humanitarians working for INGOs in the area estimate that there are 998,780 people living in rebel-held areas. Only roughly 650,000 of them are accessible to aid workers.

[2] Human Rights Watch, Sudan: Eradicating the Nuba, Africa Watch Calls for the United Nations to Investigate Killings, Destruction of Villages and Forced Removals, vol.4, issue 10, September 1992. In this report, Human Rights Watch argued that a systematic campaign by the Sudanese government to remove the Nuba ethnicity from the Kordofan area was in place, and that forced movement of Nuba civilians from their home areas to government-controlled camps, killings and detentions as well as other abuses together amounted to ethnic cleansing. See also Human Rights Watch, Human Rights in Africa and US Policy, July 1994. Human Rights Watch, In the Name of God: Repression Continues in Northern Sudan, vol. 6, no. 9, November 1994.  

[3] The Nuba Mountains Ceasefire Agreement (2002), available at  http://www.sudantribune.com/spip.php?article41880 (accessed February 8, 2017). Southern Kordofan, distinguished by its numerous rocky hills, is one of Sudan’s 18 states and had seen on-off conflict for decades. The SPLA-North currently hold four areas in Southern Kordofan and in next door Western Kordofan, all traditional home areas of Nuba tribes, the “Nuba mountains.” The main town of the rebel-held area is Kauda, which lies in the largest rebel-held area, that includes much of Heiban, Um Dorein and Buram counties. Other rebel held areas lie to the north east and north west of this area and a fourth to the south east, bordering South Sudan. The area is poorly developed, even by Sudanese standards. 

[4] Human Rights Watch, Under Siege: Indiscriminate Bombing in Sudan’s Southern Kordofan and Blue Nile States, December 2012, https://www.hrw.org/report/2012/12/11/under-siege/indiscriminate-bombing-and-abuses-sudans-southern-kordofan-and-blue. For more on the causes of the conflict, see International Crisis Group, “Sudan’s Spreading Conflict (I): War in South Kordofan,” https://www.crisisgroup.org/africa/horn-africa/sudan/sudan-s-spreading-conflict-i-war-south-kordofan (accessed February 8, 2017).

[5] International Criminal Court, Warrant of Arrest for Ahmad Harun, May 1, 2007, https://www.icc-cpi.int/pages/record.aspx?uri=279813 (accessed February 8, 2017).

[6] Comprehensive Peace Agreement between Government of Sudan and the SPLM/SPLA, available at http://peacemaker.un.org/node/1369 (accessed February 8, 2017). The Comprehensive Peace Agreement between the SPLA/M and the government of Sudan included a protocol on the resolution of the Southern Kordofan/Nuba and Blue Nile conflicts, signed in 2004. The protocol promised elections, a popular consultation process and mechanisms to deal with wealth sharing, governance and land tenure problems. Both parties failed to fulfil security commitments and the consultative process was indefinitely postponed in 2011. 

[7] Human Rights Watch, Under Siege. See also, United Nations Office of the High Commissioner for Human Rights, “Thirteenth periodic report of the United Nations High Commissioner for Human Rights on the situation of human rights in the Sudan, Preliminary report on violations of international human rights and humanitarian law in Southern Kordofan from 5 to 30 June 2011,” August 2011, http://www.ohchr.org/Documents/Countries/13thSouth_Kordofan_report.doc (accessed February 8, 2017).

[8] Compiled from Sudan Consortium reports. See for example, http://sudanconsortium.org/darfur_consortium_actions/
reports.html
(accessed February 8, 2017).  

[9] Human Rights Watch interview with Diana Angelo, Heiban town, Heiban county, December 12, 2016.

[10] Rocco Nurri, “Five Years Into Conflict, Refugees Still Flee into South Sudan,” United Nations High Commissioner for Refugees news story, http://www.unhcr.org/news/latest/2016/6/575176254/five-years-southern-sudan-conflict-refugees-still-flee.html (accessed February 8, 2017).

[11] Human Rights Watch, “Sudan: Repression Intensifies After Border Violence,” media release, May 17, 2012, https://www.hrw.org/news/2012/05/17/sudan-repression-intensifies-after-border-violence.

[12] Mohammed Amin, “Sudanese Peace Talks Suspended for the 10th Time,” Africa Review, November 24, 2016.  http://www.africareview.com/news/Sudanese-peace-talks-suspended/979180-2970262-14i5knfz/index.html (accessed February 8, 2017)

[13] United Nations Security Council Resolution 2046 (2012), S/RES/2046 (2012), http://unscr.com/en/resolutions/2046 (accessed February 8, 2017).  The resolution mostly concerned relations between Sudan and South Sudan but also called for peace negotiations between Sudan and the SPLM/A-North and “to permit humanitarian access to the affected population in the two areas, ensuring in accordance with applicable international law, including applicable international humanitarian law, and guiding principles of emergency humanitarian assistance, the safe, unhindered and immediate access of United Nations and other humanitarian personnel, as well as the delivery of supplies and equipment, in order to allow such personnel to efficiently perform their task of assisting the conflict-affected civilian population.”

[14] African Union Higher Implementation Panel, Roadmap, March 21, 2016, http://www.peaceau.org/uploads/auhip-roadmap-signed-080816.pdf (accessed February 15, 2017). The roadmap, which was also eventually signed by Darfur rebel groups, restates the parties’ intentions to end the conflicts in Southern Kordofan, Blue Nile and Darfur, and sign a cessation of hostility agreement leading to a permanent cessation. The parties agreed to negotiate immediate access for humanitarians at the same time as the cessation of hostilities.  

[15] Human Rights Watch interviews with witnesses, displaced people, SPLM/A-North army and administrative officials, December 2016.

[16] For example, government forces stayed in Karkaraya village, Um Dorein county, for seven days after an attack in March 2016 and killed elderly residents who were unable to flee, broke into the town’s small clinic then looted and partly destroyed the premises. The forces also destroyed Karkaraya’s secondary school by driving over it with tanks, and looting the town’s primary school. In nearby Um Serdiba, the primary school was reportedly destroyed by government forces around the same time. Human Rights Watch interviews with civilians, including witnesses and victims, and local authorities in Heiban, Um Dorein, Buram and Delami counties, December 7-14, 2016.

[17] Human Rights Watch interviews, December 2016. For example, in July, SAF-aligned militias attacked the Lima village, west of Kadugli town, on two occasions. In late November, at least two bombs were dropped by Sudanese air force planes near civilian houses in Hajar Bako, and shelling took place in the Ard’Kanan and Nyakima villages, reportedly in retaliation for a SPLA-North attack on government positions in Al-Azraq. During HRW’s visit in December, Antonov aircrafts could be heard circling above Heiban and Delami counties and ongoing shelling was reported in Um Dorein county.

[18] The United States first imposed “comprehensive economic, trade and financial sanctions against Sudan due to its support for international terrorism, ongoing efforts to destabilize neighboring governments, and the prevalence of human rights violations.”  Further sanctions against individuals who were allegedly complicit in violence in Darfur and on government owned or managed companies were then imposed in 2007. See: US Department of State, US Relations with Sudan, https://www.state.gov/r/pa/ei/bgn/5424.htm (accessed February 8, 2017).

[19] “Treasury to Issue General License to Authorize Transactions With Sudan,” US Treasury Department Office of Public Affairs news release, https://www.treasury.gov/resource-center/sanctions/Programs/Documents/sudan_fact_sheet.pdf (accessed February 8, 2017).

[20] Amended Directives and Procedures, Humanitarian Aid Commission, December 15, 2016, On file with Human Rights Watch.

[21] Human Rights Watch interview with senior UN official based in Khartoum, name withheld, February 27, 2017. The visit, connected with UN efforts to prevent the use of child soldiers in conflicts, had still not taken place by mid-May 2015, apparently because negotiations with the SPLM/A-North were still ongoing.

[22] Human Rights Watch, Human Rights Benchmarks for Sudan: Eight Ways to Measure Progress, April 2017, https://www.hrw.org/news/2017/05/03/human-rights-benchmarks-sudan

[23] Human Rights Watch, ‘Sudan’s Human Rights Record and US Sanctions, Testimony of Jehanne Henry at the Tom Lantos Human Rights Commission’, April 4, 2017, https://www.hrw.org/news/2017/04/04/sudans-human-rights-record-and-us-sanctions.

[24] Human Rights Watch interview with H.S., Lula village, Heiban County, December 9, 2016.

[25] Human Rights Watch, Under Siege.

[26] Southern Kordofan, Blue Nile Coordination Unit, Flash Update #14 – February 11, 2017, “Deteriorating Food Security Outlook Following Poor Harvest Assessment.” On file with Human Rights Watch. “Sixteen percent of the population of Blue Nile and 6% of the population of the central region of South Kordofan were identified as severely food insecure during the traditional early harvest season.”

[27] Ibid.

[28] Famine Early Warning Systems Network, “Emergency (IPC phase 4) likely in parts of Southern Kordofan, Jebel Mara,” February 2017, http://www.fews.net/east-africa/sudan/food-security-outlook/february-2017 (accessed April 26, 2017).

[29] Sudan Relief and Rehabilitation Agency (SRRA) SPLM/A-North controlled areas, “Food Shortage in Kau and Warne”, March 11, 2017 (on file with Human Rights Watch). The news release also called “upon United Nation and to the people of good heart and all humanitarian agencies to get and intervene to rescue the needy people in Kau and Warne, and indeed to put more pressure on both parties in Sudan to give humanitarian access to the affected people in SPLM-A/N held areas, in Nuba Mountains, Southern Kordofan and Blue Nile states.”   

[30] Human Rights Watch interview with S.O.B, (name withheld), Tongoli town, Delami county, December 10, 2016.

[31] “Sudan: Bombing Campaign’s Heavy Impact on Children,” Human Rights Watch news release, May 6, 2015. Government bombing has damaged or destroyed at least 22 schools since the conflict began. Only 400 students were in secondary education in the entire region, because of a lack of secondary schools. Human Rights Watch did not research the impact of the conflict, abusive tactics such as aerial bombardment by the government of Sudan and obstruction of humanitarian aid on education but Nuba civil society, authorities and interviewees repeatedly expressed concern that a generation of children were missing out on education. One humanitarian estimated, using figures from a 2010 census, that some 400,000 children in Southern Kordofan and Blue Nile state are out of education or are unable to access quality education. 

[32] Rocco Nurri, “Five Years into southern Sudan conflict, refugees still flee.”

[33] “Sudan: Southern Kordofan Civilians Tell of Air Strike Horror,” Human Rights Watch news release, August 30, 2011, https://www.hrw.org/news/2011/08/30/sudan-southern-kordofan-civilians-tell-air-strike-horror; see also “Sudan Announces Truce in Southern Kordofan,” Al Jazeera, August 23, 2011 http://www.aljazeera.com/news/africa/2011/08/2011823151035653492.html (accessed February 8, 2017).

[34] Ibid, Human Rights Watch. After fighting subsided in the government-controlled Southern Kordofan state capital Kadugli, the government did not permit international humanitarian groups, including UN agencies, to conduct assessments of displaced people even within the town. International humanitarian workers were forbidden from traveling out of government towns to assess humanitarian needs.

[35] Human Rights Watch telephone and Skype interviews with humanitarians (names withheld), November 2016 to February 2017.

[36] Humanitarian Aid Commission (HAC), “Directives of Humanitarian Action 2016,” May 5, 2016, on file with Human Rights Watch. 

[37] Human Rights Watch, Famine in Sudan, 1998: The Human Rights Causes, (New York: Human Rights Watch, 1999), and “Darfur: Humanitarian Aid Under Siege” (Human Rights Watch, May 2006) at https://www.hrw.org/report/2006/05/08/darfur-humanitarian-aid-under-siege; Mark Duffield, Susanne Jaspers et al, Operation Lifeline Sudan: A Review (July 1996). Operation Lifeline Sudan was established following the 1988 famine and was viewed as a groundbreaking model for cross-border humanitarian assistance during ongoing conflict.

[38] Alex de Waal, “Food and Power in Sudan, A Critique of Humanitarianism,” (Africa Rights, 1997), p183-193. Civilians who fled hunger and bombardment into other areas of Sudan were forced to live in ‘peace villages’ where they were starved, tortured, indoctrinated and forced to work on large farms. See also, Human Rights Watch, Human Rights in Africa and US Policy. ‘Despite the residents' desperate need for assistance, the Nuba Mountains have been placed off limits to all but those allied with the government's counterinsurgency scheme.’

[39] Human Rights Watch, Darfur: Humanitarian Aid Under Siege.

[40] “Sudan: Expelling Aid Agencies Harms Victims,” Human Rights Watch news release, March 5, 2009, https://www.hrw.org/news/2009/03/05/sudan-expelling-aid-agencies-harms-victims The government made the announcement shortly after the ICC issued arrest warrants for President al-Bashir for war crimes and crimes against humanity. 

[41]“Khartoum expels Foreign Aid Agencies from Eastern Sudan,” BBC, June 1, 2010, http://www.bbc.com/news/world-africa-18296430 (accessed February 21, 2017). The agencies were allowed to continue to operate in other areas of Sudan.

[42] “Statement attributable to the Humanitarian Country Team in Sudan on the de facto expulsion of UN senior official and OCHA Head of Office Mr. Ivo Freijse,” United Nations Office for the Coordination of Humanitarian Affairs news release, May 22, 1016, https://docs.unocha.org/sites/dms/Sudan/Press_Releases/2016/Sudan_HCT_Statement_on_the_de_facto_expulsion_of_UN_senior_official_and_OCHA_Head_of_Office_Mr._Ivo_Freijsen_22_May_2016_EN.pdf (accessed February 21, 2017).

[43] “Ambassador Rice at U.N. on Sudan, Syria and Russia: Remarks by Ambassador Susan E. Rice, U.S. Permanent Representative to the United Nations, at the Security Council Stakeout on Sudan,” United States at the UN press release, January 17, 2012. https://geneva.usmission.gov/2012/01/18/ambassador-rice-at-u-n-on-sudan-syria-and-russia/ (accessed February 8, 2017). See also, “UN relief chief voices concern over worsening humanitarian situation in Sudan”, UN news release, http://www.un.org/apps/news/story.asp?NewsID=42355#.WJuHmDsrKUk (accessed February 8, 2017). During this press briefing the then-head of OCHA, Valerie Amos, said: “the Government has laid out operational conditions that do not allow for the delivery of assistance by neutral parties in SPLM/A-North-controlled areas.”

[44] “No Crisis in South Kordofan, Sudan Says as Aid Deal Lapses,” French Press Agency, November 6, 2012, http://www.dailynewsegypt.com/2012/11/06/no-crisis-in-south-kordofan-sudan-says-as-aid-deal-lapses/ (accessed February 8, 2017).

[45] The main aim was to provide polio vaccinations, but humanitarians hoped they would get a window of opportunity to also vaccinate against measles. In 2015, more than 4 million children under five years of age were vaccinated against polio in other parts of Sudan. See OCHA, Humanitarian Bulletin Sudan, Issue 47, 16-22 November 2015. http://reliefweb.int/sites/reliefweb.int/files/resources/OCHA_Sudan_Weekly_Humanitarian_Bulletin_Issue_47_(16_-_24_November_2015).pdf (accessed February 8, 2017). Children in Sudan are at risk of the polio virus which remains active in the area in recent years; 196 polio cases were reported in the horn of Africa region in 2013, for example. 

[46] “Security Council Press Statement on Polio Vaccination in Sudan,” UN news release, October 11, 2013, http://www.un.org/press/en/2013/sc11145.doc.htm  (accessed on February 8, 2017).

[47] Human Rights Watch telephone interview with senior UN official (name withheld), December 18, 2014.

[48] Human Rights Watch telephone and in person interviews with UN and NGO workers, January – April 2017, all names withheld.

[49] Under international humanitarian law, consent for delivery of assistance that is exclusively humanitarian, impartial in character and conducted without any adverse distinction, cannot be arbitrarily withheld. However, consent is not arbitrarily withheld if a party to the conflict can prove that the assistance offered is neither exclusively humanitarian or is partial.

[50] For example, “One step forward, two steps back: understanding Sudan’s collapsed peace talks”, Nuba Reports, August 18, 2016 https://nubareports.org/one-step-forward-two-steps-back-understanding-sudans-collapsed-peace-talks/ (accessed April 27, 2017).

[51] Human Rights Watch interview with SPLM/A-North head, Yassir Arman, Whatsapp conversation, March 8, 2017.

[52] Nuba Reports, “Hopes of Possible Peace Dashed as Latest Negotiations Collapse,” August 15, 2016, https://nubareports.org/hopes-of-peace-dashed-as-latest-negotiations-collapse/ (accessed February 19, 2017).

[53] For more on the proposed deal, see Steven Koutsis, Charge d’Affaires, U.S. Embassy, Khartoum, “We urge the SPLM-North to allow humanitarian assistance”, editorial, Sudan Tribune, March 3, 2017, http://www.sudantribune.com/spip.php?article61783 (accessed April 27, 2017),

[54] Human Rights Watch interview with Yassir Arman. See also “Sudan Envoys fail to convince SPLM/A-North to accept U.S. humanitarian proposition,” Sudan Tribune, January 16, 2017. http://www.sudantribune.com/spip.php?article61419 (accessed February 19, 2017),

[55] Amended Directives and Procedures, Humanitarian Aid Commission, December 15, 2016, on file with Human Rights Watch; “USA welcomes Sudan’s new humanitarian directives,” Dabanga, https://www.dabangasudan.org/en/all-news/article/usa-welcomes-sudan-s-new-humanitarian-directives

[56] Human Rights Watch interview with S.M. (name withheld), Lula village, Heiban County, December 9, 2016.

[57] Human Rights Watch interview with N.S., Lula village, Heiban County, December 9, 2016.

[58] The Sudan Consortium, African and International Civil Society Action for Sudan “Gender Under Bombardment: Gender Disparities in SPLA/M-N Controlled Areas of Nuba Mountains, Southern Kordofan,” 2016, p17, http://sudanconsortium.org/darfur_consortium_actions/reports/2016/GenderUnderBombardmentPR.pdf  (accessed April 27, 2017). The authors of the report also found that despite women taking on additional work in the home and as farmers because many men were on the frontline, added responsibilities have not led to any social recognition or additional power in decision-making at home or in the public sphere.

[59] Human Rights Watch interview with Yassir Arman. See also, UN Security Council, Resolution 1325 (2000), S/RES/1325 (2000) http://www.un.org/womenwatch/osagi/wps/ (accessed February 8, 2017). The resolution called for all parties to conflicts to ensure “women’s meaningful inclusion at all levels in further peace negotiations and state-building initiatives.”

[60] Human Rights Watch interview with NGO worker (name withheld), Kauda, Heiban county, December 13, 2016.

[61] This association has worked on domestic violence, advocated against child marriage, and supported women farmers. See also “Gender Under Bombardment,” p38-9. 

[62] Human Rights Watch interview with Hanasi Mohsin, Social Development secretariat, Heiban town, Heiban county, December 12, 2016.

[63] Girls not Brides, “An information sheet: child marriage around the world,” November 2016, http://www.girlsnotbrides.org/wp-content/uploads/2017/01/Child-marriage-around-the-world-Nov-2016.pdf (last accessed March 30, 2017).

[64] Human Rights Watch interview B.B. (name withheld), Tongoli village, Delami county, December 10, 2016.

[65] Human Rights Watch interview N.S. (name withheld), Lula village, Heiban county, December 9, 2016.

[66] Human Rights Watch interview H.S. (name withheld), Lula village, Heiban county, December 9, 2016.

[67] Human Rights Watch interview S.A. (name withheld), Heiban town, Heiban county, December 12, 2016.

[68] Individuals interviewed in other locations did not talk about female genital mutilation, and when asked said that they did not know of any recent cases of FGM in their communities.

[69] Sudan Central Bureau of Statistics/Ministry of Health, “Sudan: Multiple Indicator Cluster Survey 2014, Key Findings,” April 2015, http://reliefweb.int/report/sudan/sudan-multiple-indicator-cluster-survey-2014-key-findings (accessed February 15, 2017). According to the UN Fund for Population (UNFPA), most women and girls undergo FGM before their twelfth birthday. Infibulation, the most severe form of FGM, was banned in 1946 through a change in the penal code. Other forms of FGM are not addressed in Sudan’s laws.

[70] Human Rights Watch interview with Ali Nour, acting head, Social Development and Women’s Rights Secretariat, Kauda, December 8, 2016

[71] Human Rights Watch interview with G.I. (name withheld), Hadara village, Delami county, December 11, 2016.

[72] Human Rights Watch interview with Hanasi Mohsin.

[73] Human Rights Watch interview with S.A. (name withheld), Heiban town, Heiban county, December 12, 2016.

[74] Laws of the New Sudan, The Penal Code, 2003, section 317, https://www.unodc.org/tldb/pdf/Sudan/Penal_Code_2003.pdf (accessed February 15, 2017). The “New Sudan” laws were used during Sudan’s long north-south civil war in areas controlled by the Sudan People’s Liberation Army/Movement (SPLA/M) in defiance of Sudanese Islamic law, before the south Sudanese rebel SPLM/A-North and the government of Sudan signed a peace deal in 2005, which eventually led to South Sudan’s secession. The SPLM/A-North have continued to use these laws in areas they control.

[75] Human Rights Watch interview with Col. Hassan Idris, head of police, Dec 8, 2016

[76] Human Rights Watch interview with Kodi Abd Rahman Harik, head of judiciary, Dec 8, 2016.

[77] In general, women facing domestic violence first turn to other family members and then to community chiefs. Police get involved only when men seriously injure their wives. Some men have been jailed, sometimes for the period the victim is in the hospital.

[78] Human Rights Watch interview with Z.M. (name withheld), Tongoli village, Delami county, December 10, 2016.

[79] Human Rights Watch interview with N.S. (name withheld), Lula village, Heiban county, December 9, 2016.

[80] Laws of the New Sudan, The Penal Code, 2003, section 316, https://www.unodc.org/tldb/pdf/Sudan/Penal_Code_
2003.pdf
(accessed February 15, 2017).

[81] World Health Organization, Guidelines for Medico-Legal care for Victims of Sexual Violence, (Geneva: World Health Organization, 2003), http://apps.who.int/iris/bitstream/10665/42788/1/924154628X.pdf (accessed February 15, 2017), p64.

[82] Population figures in the two areas, estimates from local authorities and service providers in the area, September 2015. On file with Human Rights Watch.

[83] Ibid.

[84] Human Rights Watch interview with a medical doctor (name withheld), Heiban county, December 8, 2016.

[85] World Health Organization, “Universal Truth: No Health Without a Workforce”, 2014, p. 17, http://www.who.int/workforcealliance/knowledge/resources/GHWA-a_universal_truth_report.pdf?ua=1 (accessed March 31, 2017).

[86] Ibid

[87] Human Rights Watch interview with Tutu Mustapha Turkash, head of Health Secretariat, Kauda, Heiban county, December 9, 2016.

[88] Ibid.

[89] The rebel-held areas are not contiguous, there are four ‘islands’ of control. Some areas have even fewer clinics and schools than areas visited by Human Rights Watch and no on-ground international support at all. The deputy governor of the rebel-held area, Sulieman Jabon, said that perhaps as many as 300,000 people live in the ‘Western Jebels’ area, a small area controlled by the SPLM/A-North to the north-west of Kauda, and perhaps 30,000 people live in the Rashad/Abasia/Tagali area and some 35,000 in the Abu Jubeiha area, to the north of Kauda. The Western Jebel area is accessible in the dry season by car but the other two areas are extremely hard to access. Tutu Mustapha Turkash, the rebel civilian administration’s secretariat of health head told Human Rights Watch that medicines are only delivered to some of these two areas once or twice a year and are often carried in on volunteers’ backs, including over front lines. In December 2016, he said that some 50 clinics in the Western Jebels areas have all run out of medicines after the last delivery in June 2016 and that he expects that clinics in Abu Jubeiha area have also run out as no deliveries there have been possible since January 2016.

[90] Human Rights Watch interviews with health staff from SPLM/A-North administration and NGOs, December 2016.

[91] For example, a clinic near Lula village only had amoxicillin and some vitamins for children. The main clinic in Heiban town had run out of all drips and injections. Staff there said they often ran out of key medicines such as antibiotics or antimalarial medicines.

[92] Human Rights Watch interview with James Atai, nurse and head of clinic, Hadara town, Delami county, December 11, 2016.

[93] Human Rights Watch interviews with health staff from SPLM/A-North administration and NGOs, December 2016.

[94] These cases were only those collected by the Mother of Mercy Hospital, and in two of the clinics the hospital supports. “Sudan: Bombing Campaign’s Heavy Impact on Children”, Human Rights Watch news release, May 6, 2015.

[95] “Security Council Press Statement on Polio Vaccination in Sudan,” UN news release, October 11, 2013, http://www.un.org/press/en/2013/sc11145.doc.htm  (accessed on February 8, 2017).

[96] Ibid. In a series of aerial attacks in April and June 2014 on eight separate locations of health facilities and humanitarian supply storages, the circumstances suggest deliberate targeting.

[97] Human Rights Watch interview with Johannes Plate, health worker Cap Anamur - German Emergency Doctors, Loweri, Heiban county, December 13, 2016.

[98] Human Rights Watch interview with S.A. (name withheld), Heiban town, Heiban county, December 12, 2016.

[99] World Health Organization, Maternal Mortality factsheet, updated November 2016, http://www.who.int/mediacentre/factsheets/fs348/en/ (accessed April 26, 2017).

[100] Figure calculated using estimated fertility rates from Sudan, and rough estimates of population of rebel-held areas. World Health Organization, Global Health Observatory data repository, last updated June 17, 2015, http://apps.who.int/gho/data/node.main.CBDR107?lang=en (accessed April 3, 2017). 

[101] Human Rights Watch interview with Nuba humanitarian aid worker, Juba, South Sudan, December 6, 2016

[102] These are standards for humanitarians to determine the extent and quality of any response, not as assessment of government obligations.

[103] UNFPA, “What is the Minimum Initial Services Plan?” undated, http://www.unfpa.org/resources/what-minimum-initial-service-package (accessed February 19, 2017); The SPHERE Charter and Minimum Standards, have global “soft law” status according to the International Federation of the Red Cross, Code of Conduct, 1994, http://www.ifrc.org/en/publications-and-reports/code-of-conduct/ (accessed February 19, 2017). The Sphere Project, Humanitarian Charter and Minimum Standards in Humanitarian Response, 2017, http://www.spherehandbook.org/en/what-is-sphere/ (accessed December 19, 2017).

[104] All primary healthcare facilities should have basic emergency obstetric care – including parenteral antibiotics, parenteral (uterotonic drugs oxytocin), parenteral anticonvulsant drugs (magnesium sulfate), manual removal of retained products of conception, manual removal of placenta, assisted vaginal delivery (vacuum or forceps delivery).

[105] Figure for number of births calculated using estimated fertility rates from Sudan, and rough estimates of population of rebel-held areas, numbers of caesearean sections from Mother of Mercy Hospital and Cap Anamur- German Emergency Doctors. See World Health Organization, Global Health Observatory data repository, last updated June 17, 2015, http://apps.who.int/gho/data/node.main.CBDR107?lang=en (accessed April 3, 2017). 

[106] The “Granada consensus” emerged after a meeting of the World Health Organization (WHO), the UN Population Fund (UNFPA) and the Andalusian School of Public Health. Four priority areas were developed to improve long-neglected sexual and reproductive healthcare in protracted crisis and recovery. See World Health Organization, “Sexual and Reproductive Health During Protracted Crises and Recovery”, Geneva, 2011, http://www.who.int/reproductivehealth/publications/emergencies/hac_bro_2011/en/ (accessed February 19, 2017).

[107] World Health Organization, Sexual and Reproductive Healthcare during Protracted Crises and Recovery, Granada Report, 2011, http://apps.who.int/iris/bitstream/10665/70762/1/WHO_HAC_BRO_2011.2_eng.pdf (accessed March 1, 2017). 

[108] Human Rights Watch interview with B.B, name withheld, Tongoli village, Delami county, December 10, 2016

[109] United Nations Population Fund (UNFPA), Maternal Mortality in Humanitarian Crises and in Fragile Settings, factsheet, November 12, 2015, https://www.unfpa.org/sites/default/files/resource-pdf/MMR_in_humanitarian_settings-final4_0.pdf (accessed February 16, 2017). In conflict or other crisis situations, healthcare infrastructure breaks down and often continues to corrode even after the worst violence in over; communities are forced into displacement away from services, states often are unable (because of access problems or resource shortages), or are unwilling, to provide comprehensive services.  A woman’s lifetime risk of maternal death is 1 in 4900 in developed countries, versus 1 in 180 in developing countries. In countries designated as fragile states, the risk is 1 in 54; showing the consequences from breakdowns in health systems. See World Health Organization, Maternal Mortality factsheet, November 2016.

[110] Globally, most maternal deaths are caused by direct obstetric causes including hemorrhage, sepsis (severe infection spreading through the bloodstream), eclampsia (a pregnancy complication characterized by seizures or coma), unsafe abortions, and prolonged or obstructed labor. Other indirect causes include malaria, tuberculosis, and HIV/AIDS. See World Health Organization, Maternal Mortality factsheet, November 2016, http://www.who.int/mediacentre/factsheets/fs348/en/ (accessed February 15, 2016).

[111] Government of National Unity and Government of South Sudan, “Sudan Household Health Survey,” December 2007, file:///C:/Users/wheeles/Downloads/SHHS%202006-%20Final%20Report%20(English).pdf (accessed April 26, 2017).

[112] “Maternal Mortality Ratio,” The World Bank Group, Maternal Mortality Ratio, 2016 http://data.worldbank.org/indicator/SH.STA.MMRT?locations=SD (accessed 16 February 2017). Research in 2006 suggested that in two parts of Southern Kordofan state MMR, during peacetime, was about 680 per 100,00o births. See A. Bayoumi, “Maternal and childhood mortality in the Nuba mountains, Sudan: A pilot study”, January 2006, http://www.popline.org/node/197013 (accessed February 20, 2017).

[113] The causes of death included “eclampsia, sepsis/shock following prolonged labor at home, shock following ruptured uterus after prolonged labor at home in a multigravida mother.” Email from the director of the hospital, Diocese of El Obeid, Mother of Mercy Hospital, Gidel, to Human Rights Watch, April 1, 2017.

[114] Most of the maternal deaths were attributed to infection and hemorrhage. Email from Johannes Plate, Cap Anamur - German Emergency Doctors, to Human Rights Watch, April 14, 2017.

[115] Email from Johannes Plate, Cap Anamur - German Emergency Doctors, to Human Rights Watch, April 14, 2017.

[116] Email from Plate, April 14, 2017.

[117] The Diocese of El Obeid (who also run the Mother of Mercy Hospital) and Cap Anamur – German Emergency Doctors (GED), each support six outreach clinics. The GED outreach clinics are located in Debbi, Nyukur, Ard Kanan, Korongo, Cambarra and Kororak.

[118] Khan KS, Wojdyla D, Say L, Gulmezoglu AM, Van Look PF, “WHO analysis of causes of maternal death: a systematic review,” Lancet 2006; 367:1066-1074.

[119] Women who are unwell or need specialist care should have more antenatal visits. See also World Health Organization and others, “Opportunities for Africa’s Newborns”, Geneva,  http://www.who.int/pmnch/media/publications/oanfullreport.pdf (accessed February 20, 2017).

[120] Human Rights Watch interview with Tutu Mustapha Turkash, December 9, 2016.

[121] Human Rights Watch interview with S.M. (name withheld), Lula village, Heiban county, December 9, 2016.

[122] Human Rights Watch interview with health staff from Cap Anamur - German Emergency Doctors, Loweri, Heiban county, December 13, 2016.

[123] World Health Organization, “WHO Recommendations for Prevention and Treatment of Pre-eclampsia and Eclampsia,” Geneva, 2011, http://apps.who.int/iris/bitstream/10665/44703/1/9789241548335_eng.pdf (accessed February 20, 2017).

[124] Human Rights Watch interview with Gadam Ali, head of health secretariat for Delami county, Delami county, December 10, 2016.

[125] World Health Organization, “Essential Nutritional Actions: Improving Maternal, Newborn, Infant and Young Child Health and Nutrition,” 2013, http://apps.who.int/iris/bitstream/10665/84409/1/9789241505550_eng.pdf (accessed February 20, 2017). In emergencies, supplementary feeding with vitamin-fortified foods are often offered to women and children where possible.

[126] Human Rights Watch interview with Tutu Mustapha Turkash, December 9, 2016.

[127] The John Hopkins and the International Federation of the Red Cross and Red Crescent Societies, “Public Health Guide for Emergencies,” chapter 4, reproductive healthcare, 2007, http://reliefweb.int/sites/reliefweb.int/files/resources/Forward.pdf (accessed February 20, 2017).

[128] Email from Plate, April 14, 2017.

[129] Email from hospital director, April 1, 2017.

[130] Human Rights Watch interview with N.S. (name withheld), El Dorein, December 14, 2016.

[131]  Human Rights Watch interviewed all the medical providers working in the area.

[132] Email from Plate, April 14, 2017.

[133] Email from hospital director, April 1, 2017.

[134] Ibid.

[135] Ibid.

[136] Email from Plate, April 14, 2017.

[137] Email to Human Rights Watch interview (name withheld), medical NGO working in Syria, April 18, 2017.

[138] Email to Human Rights Watch interview (name withheld), medical NGO working in Syria, April 25, 2017.

[139]  “Syria: Women and children paying a high price in conflict” Medicins Sans Frontiers press release, January 28, 2013, https://www.msf.ie/article/syria-women-and-children-paying-high-price-conflict (accessed April 27, 2017).

[140] Human Rights Watch interview with B.B. (name withheld), Tongoli town, Delami county, December 10, 2016.

[141] Human Rights Watch interview with Mujuma Hamad, Hadara town, Delami, December 11, 2016.

[142] Human Rights Watch interview with Fatna Al Nur, head of information gathering in secretariat of health, Kauda, Heiban county, December 13, 2016.

[143] The John Hopkins and the International Federation of the Red Cross and Red Crescent Societies, “Public Health Guide for Emergencies,” chapter 4, reproductive healthcare, 2007, http://reliefweb.int/sites/reliefweb.int/files/resources/Forward.pdf (accessed February 20, 2017).

[144] Ibid.

[145] Ibid.

[146] Human Rights Watch interview with midwife Dahabaya Khamis, Cap Anamur - German Emergency Doctors, Loweri, Heiban county, December 13, 2016.

[147] Human Rights Watch interview with B.B. (name withheld), Tongoli village, Delami county, December 10, 2016.

[148] Human Rights Watch interview with the executive director of Heiban county, Heiban town, Heiban county, December 9, 2016.

[149] Human Rights Watch interview (name withheld), Heiban county, December 8, 2016.

[150] Human Rights Watch interview with S.A. (name withheld), Heiban town, December 12, 2016.

[151] Human Rights Watch interview with K.A.H (name withheld), Lula village, Heiban County, December 9, 2016.

[152] Email from Plate, April 14, 2017.

[153] Email from hospital director, April 1, 2017.

[154] Human Rights Watch interview with Tutu Mustapha Turkash, December 9, 2016.

[155] Human Rights Watch interview with N.S. (name withheld), Lula village, Heiban county, December 9, 2016.

[156] Human Rights Watch interview with S.M. (name withheld), Lula village, Heiban county, December 9, 2016.

[157] Human Rights Watch interview with James Atai, December 11, 2016.

[158] Human Rights Watch interview with Tutu Mustapha Turkash, December 9, 2016. 

[159] Cap Anamur – Germany Emergency Doctors (GED), have provided 1, 776 delivery kits to women using their outreach clinics.

[160] Human Rights Watch interviews with staff members of Heiban town’s main clinic, Heiban county, December 9, 2016.

[161] Human Rights Watch interview with Raja Ibrahim, KODI organization, Kauda, Heiban county, December 13, 2016.

[162] Human Rights Watch interview with K.A.H (name withheld), Lula village, Heiban County, December 9, 2016.

[163] Being unable to plan families and experiencing multiple pregnancies can negatively impact women’s wellbeing in many ways. Becoming pregnant again soon after giving birth, before the body has had a chance to recuperate and build up stores of iron again, can negatively impact a woman’s health and make it more likely that a woman dies in childbirth. The World Health Organization recommends a 24-month interval between the birth of one child and the conception of the next “to reduce the risk of adverse maternal, perinatal and infant outcomes. WHO recommends that after a miscarriage or induced abortion, women wait six months before getting pregnant again. Multiple births are dangerous, women who have already had many births are advised to prevent further pregnancies. Evidence suggests that women who have more than 4 children are at increased risk of maternal mortality; World Health Organization, Contraception and family planning, fact sheet, December 2016, http://www.who.int/mediacentre/factsheets/fs351/en/ (accessed December 19, 2017); World Health Organization, “Report of a WHO Technical Consultation on Birth Spacing,” June 2005, http://apps.who.int/iris/bitstream/10665/69855/1/WHO_RHR_07.1_eng.pdf (accessed February 19, 2017).

[164] World Health Organization, “Adolescent Pregnancy,” fact sheet, September 2014, http://www.who.int/mediacentre/factsheets/fs364/en/ (accessed February 19, 2017). WHO campaigns to “create understanding and support to reduce pregnancy before the age of 20.”

[165] World Health Organization, “Report of a WHO Technical Consultation on Birth Spacing.” ;World Health Organization, “Adolescent Pregnancy.

[166] Cap Anamur - German Emergency Doctors told Human Rights Watch that because of this rule, they only give injectable contraception to women when their husbands come with them to the clinic and agree. The humanitarian wing of the SPLM/A-North, the Sudan Relief and Rehabilitation Agency, said that this rule is in effect, but Human Rights Watch could not confirm it was formalized into a law or written regulations.

[167] Human Rights Watch interview with health staff from Cap Anamur - German Emergency Doctors, December 13, 2016.

[168] About 5,000 every 6 months.

[169] Email from Plate, April 14, 2017.

[170] Ibid.

[171] Human Rights Watch interview with Tutu Mustapha Turkash, December 9, 2016.

[172] Human Rights Watch interview, Leila Karim, head of women’s association, Kauda, Heiban county, December 13, 2016.

[173] Human Rights Watch interview with M.S., Um Dorein county, December 14, 2016.

[174] Human Rights Watch interview with N.S., Lula village, Heiban county, December 9, 2016.

[175]Human Rights Watch interview with S.M., Lula village, Heiban county, December 9, 2016.

[176] The calendar method, also called the rhythm method or the calendar rhythm method, is a form of natural family planning. To use the rhythm method, women track their menstrual history to predict when they will ovulate to determine when they are most likely to conceive.

[177] Human Rights Watch interview with S.W. (name withheld), Heiban town, Heiban county, December 12, 2016. 

[178] Human Rights Watch interview with N.S., Lula village, Heiban county, December 9, 2016.

[179] Human Rights Watch interview with S.J. (name withheld), Karkarai, Um Dorein county, December 14, 2016.

[180] Human Rights Watch interview with R.H. (name withheld), Gidel, Heiban county, December 12, 2016.

[181] Human Rights Watch interview with Tutu Mustapha Turkash Kauda, December 8, 2016.

[182] Human Rights Watch interview, (name withheld), Heiban county, December 8, 2016.

[183] Email from hospital director, April 1, 2017.

[184] Human Rights Watch interview with James Atai, December 11, 2016,

[185] Sudan became a party to the ICCPR and ICESR in 1986 and the CRC in 1990. Sudan became a party to the Geneva Conventions and their Additional Protocols in 1957 and 2006 respectively.

[186] Sudan became a party to the Additional Protocol (II) to the Geneva Conventions of 1977, on July 13, 2006.

[187] Article 18(2) of Protocol II, applicable in non-international armed conflicts, states: “If the civilian population is suffering undue hardship owing to a lack of the supplies essential for its survival, such as food-stuffs and medical supplies, relief actions for the civilian population, which are of an exclusively humanitarian and impartial nature and which are conducted without any adverse distinction, shall be undertaken subject to the consent of the High Contracting Party concerned.”

[188] ICRC, Customary International Humanitarian Law, rule 55.

[189] ICRC, Customary International Humanitarian Law, rule 56.

[190] U.N. Security Council Resolution 1296 (2000).

[191] Rome Statute of the International Criminal Court articles 8(2)(b)(iii) and 8(2)(e) (iii).

[192] Rome Statute of the International Criminal Court article 8(2)(b)(xxv).

[193] Rome Statute of the International Criminal Court (1998), articles 7(1)(b) and (2)(b).

[194] Sudan acceded to the International Covenant on Economic, Social and Cultural Rights (ICESCR) on March 18, 1986. See United Nations Treaty Collection, International Covenant on Economic, Social and Cultural Rights page, https://treaties.un.org/Pages/ViewDetails.aspx?src=TREATY&mtdsg_no=IV-3&chapter=4&clang=_en (accessed February 14, 2017); Sudan signed the African Charter on September 3, 1982 and ratified the charter on February 18, 1986. See African Commission on Human and People’s Rights, Ratification Table: African Charter on Human and People’s Rights,  http://www.achpr.org/instruments/achpr/ratification/ (accessed February 14, 2017); Convention on the Rights of the Child, art. 28. Sudan signed the convention on July 24, 1990 and ratified it the following month, on August 3, 1990. See United Nations Treaty Collection, Convention on the Rights of the Child page, https://treaties.un.org/pages/ViewDetails.aspx?src=TREATY&mtdsg_no=IV-11&chapter=4&clang=_en (accessed February 14, 2017). 

[195] International Covenant on Economic, Social and Cultural Rights (ICESR), article 12 (1), adopted December 16, 1966, G.A. Res. 2200A (XXI), 21 U.N. GAOR Supp. (No. 16) at 49, U.N. Doc. A/6316 (1966), 993 U.N.T.S. 3, entered into force January 3, 1976.

[196] African [Banjul] Charter on Human and People’s Rights, article 16 (1), adopted June 27, 1981, OAU Doc. CAB/LEG/67/3 rev. 5, 21 I.L.M. 58 (1982), entered into force October 21, 1986.

[197] ICESCR, art. 2 (1), and see General Comment No. 3, The nature of States parties’ obligations (art. 2, para. 1, of the Covenant), January 1, 1991.

[198] ICESCR, art. 12.

[199] UN Committee on Economic, Social and Cultural Rights, “CESCR General Comment No. 14: The Right to the Highest Attainable Standard of Health (Art 12), http://www.ohchr.org/EN/Issues/Education/Training/Compilation/Pages/e)
GeneralCommentNo14Therighttothehighestattainablestandardofhealth(article12)(2000).aspx
, paragraph 14, (accessed March 1, 2017).

[200] UN Committee on Economic, Social and Cultural Rights, “General Comment No. 22 (2016) on the Right to sexual and reproductive health (article 12 of the International Covenant on Economic, Social and Cultural Rights)” http://docstore.ohchr.org/SelfServices/FilesHandler.ashx?enc=4slQ6QSmlBEDzFEovLCuW1a0Szab0oXTdImnsJZZVQfQejF41Tob4CvIjeTiAP6sGFQktiae1vlbbOAekmaOwDOWsUe7N8TLm%2BP3HJPzxjHySkUoHMavD%2Fpyfcp3Ylzg, para.13, (accessed March 1, 2017).

[201] Ibid. para 14.

[202] Article 23 GC IV and Article 70 (1) AP1

[203] CRC, art. 28.

[204] CEDAW, art.16 (1)(e)

[205] “Sudan: Bashir says Sudan will not sign CEDAW Convention”, Panafrican News Agency, Dakar, January 14, 2001, http://allafrica.com/stories/200101140001.html (accessed February 16, 2017).

[206] Report of the special rapporteur on the right of everyone to the enjoyment of the highest attainable standard of physical and mental health, February 2004, E/CN.4/2004/49, para. 41; See also CEDAW, ‘States parties shall take all appropriate measures to eliminate discrimination against women in the field of health care in order to ensure, on a basis of equality of men and women, access to health care services including those related to family planning’.

Author: Human Rights Watch
Posted: January 1, 1970, 12:00 am
Posted: January 1, 1970, 12:00 am

The Osanas and Falak’s family visit the Acropolis on their last day together in Athens.

© 2017 Anna Pantelia
 
This is the first of a two-part commentary on family reunification by Bethany Brown of Human Rights Watch and photojournalist Anna Pantelia that documents a Syrian family’s final days in Greece before heading to Germany to reunite with their father after nearly two years apart. Originally published at News Deeply.
 
It’s 4:30 a.m in the international airport on the outskirts of Athens, Greece – a cool early morning in February. Children are laughing as they run around the airport seating, waiting to check in.
 
A group of about 30 refugees, mainly women with children, are arranging their documents with the help of the Greek asylum service staff. They will soon be leaving for Germany, where many have husbands waiting just as anxiously to be reunited with their families.

Dominique Osana waits in Athens airport with Falak and her children before the departure of Falak’s family to Dusseldorf, where they will be united with Falak’s husband and the children’s father through a family reunification programme.

© 2017 Anna Pantelia

For the families, this moment is a milestone marking the end of a year-long journey. Family separation – with all its risks, inherent or magnified by the circumstances that surround it – is finally close to being over.

Separation under the best circumstances means being cut off from the emotional support and protection of your family. For families who have fled war and are in an unfamiliar place with limited access to safety and meager economic resources, it can mean fighting for survival.

On Boxing Day in the Osanas’ house in Greece, Dominique called Falak’s husband, Mohammed, on Skype and introduced his family.

© 2017 Anna Pantelia

Falak, a 38-year-old Syrian mother of five children under 13, did not sleep last night.

This is the day she has been waiting for. She and her children are finally flying to Dusseldorf, where she will reunite with her husband, Mohammed, who is already living in Germany. He obtained refugee status there in 2015. After nearly two years apart, only three-and-a-half more hours separate the family.

Alexandros plays with Evin, Rudi and Mohammed in Falak’s temporary accommodation in Aigaleo, Greece.

© 2017 Anna Pantelia

They had fled persecution and war in their home city of Aleppo, a name that has become synonymous with “battleground” in the Syrian conflict.

“Syria was a great country to live in before the war,” Mohammed said. Before the war, he was a textile worker with a steady monthly salary. They did not take the decision to leave lightly. “Obviously, this was the most difficult period of our lives.”

Initially, the family relocated to another town inside Syria, where they hoped they would be safe. Then Mohammed struck out to find a possible place for his family in Europe.

Falak and the children remained in the new town for the first year of Mohammed’s journey, hoping to obtain passports and make a carefully planned journey. But their new home was becoming “less secure by the day,” Mohammed said.

They gave up hope that the fighting would pass or that they could get their passports, and the family fled in February 2016.

Lava and her siblings carry food donated by the local Catholic parish in Aigaleo, Greece.

© 2017 Anna Pantelia

Falak, her three daughters and two sons made a perilous passage to Europe, traveling from Syria to Greece. “I never thought I could do something like this,” she sad. “I wasn’t a strong person before – I was very cowardly.”

As thousands of others made the journey at that time, Falak said, “I was alone, I didn’t have anyone to help me.

“When we got into the boat we were very scared and cold. We stayed three-and-a-half hours in the middle of the sea inside a dinghy [which had started to fill] with water and with a broken engine,” she said. “The Greek coast guard saw us and escorted us to the shore.”

A typical Sunday in the temporary accommodation offered to Falak and her children by the local Catholic parish in Aigaleo, Greece, with the contribution of each member of the church.

© 2017 Anna Pantelia

Falak and the children arrived on the Greek island of Lesbos in early March 2016. They were transferred to Athens, where they rented a house with a few women who were traveling together.

“We were 30 people in a one-bedroom house. The person who provided us the house charged every mother 200 euros for nine days,” Falak said. “This was my last money and my last hope … [but] after nine days the person who was responsible for the house told me I had to leave.”

Sunday in the kitchen of the temporary accommodation provided for Falak and her children in Aigaleo.

© 2017 Anna Pantelia

With just eight euros left in her pocket, she went to the Caritas charity, which found accommodation for her and her children in a neighborhood Catholic church in the western suburbs of Athens. Father Martin, the parish priest, took them in.

She remembered the first night at the apartment Father Martin found for them: “I was so scared that I closed all the doors and I was constantly holding my children together. I was afraid that someone would come and take them away. Throughout the journey no one helped us so I couldn’t trust anyone.”

Falak’s family say goodbye to the Osanas as they leave the church accommodation in Aigaleo, Greece.

© 2017 Anna Pantelia

In addition to providing housing, the church community also started to support them in other ways.

Sperantza and Dominique Osana, the mother and father of an Iraqi-Greek family who belong to the local Catholic community, started visiting Falak’s family regularly.

Dominique, who came to Greece 25 years ago as a refugee himself, was touched by the family’s situation. “They became a part of our family. Every Sunday we would meet, go for a walk or for food together,” he said. “It’s been 11 months that we have had them near us. The whole community loved them and they contributed to their support.”

Alexandros plays with Lava, Rudi and Mohammed, while Sperantza helps Elin and Evin to try the new shoes she has given to them.

© 2017 Anna Pantelia

Once they were settled with help from Caritas, Dominique and Father Martin, Falak submitted an application for family reunification to the German embassy in Athens. German officials contacted Mohammed and confirmed that he would accept them.

The last day in Athens was emotional. The two families took a stroll around Athens city center. That evening, Falak packed their belongings from the apartment with the help of her eldest daughter, Lava. Later, the Osana family came for one last visit before taking them to the airport.

Author: Human Rights Watch
Posted: January 1, 1970, 12:00 am

Mohammed finally spends time with his children and wife in their new home in Germany. 

© 2017 Anna Pantelia
 
This is the second of a two-part commentary on family reunification by Bethany Brown of Human Rights Watch and photojournalist Anna Pantelia that documents a Syrian family’s final days in Greece before heading to Germany to reunite with their father after nearly two years apart. Originally published at News Deeply.
 
“My heart is about to break,” said Falak, as she walked to the exit of the plane with her children in tow on an morning in early February.
 
The 38-year-old Syrian mother and her five children had flown from Athens to Dusseldorf, after spending nearly two years separated from her husband and their father Mohammed. He had since been granted refugee status in Germany and the family had been accepted for family reunification.
 
“Baba! Baba!” the oldest boy, also named Mohammed, shouted when he saw his father in the airport. He began to run and the rest of the family quickly followed.
 
Everyone’s eyes welled with tears. As they held each other tightly in long-awaited embraces, Falak wondered aloud, “Is it a dream or is it actually happening?”
 
Falak and Mohammed’s story has the dream-come-true ending that anyone would hope for after surviving persecution, war, open seas, vulnerability and waiting. Everything went right.

Mohammed meets his children and his wife in Dusseldorf airport, Germany, almost two years after he decided to come to Europe as a refugee.

© 2017 Anna Pantelia

Many other asylum-seekers hoping to reunite with their families have not been so fortunate. Nearly 5,000 people, including 700 lone children, made family reunification requests in Greece in 2016, but only 1,107 of them have joined their families, according to the U.N.children’s fund.

Iza Papailiou, head of the Greek asylum service’s “Dublin Unit”, which implements the E.U.’s Dublin regulation on processing asylum seekers, describes numerous difficulties for family reunification.

She told Human Rights Watch that other asylum seekers have been misinformed, encountered legal and administrative blockages and had problems obtaining and verifying documentation or communicating across borders.

Falak from Syria – with her family Elin (2), Evin (4), Rudi (10), Mohamed (11) and Lava (13) – and Sperantza from Greece with her son Alexandros pose for a family photo in the temporary accommodation provided by the local Catholic parish in Aigaleo, Athens.

© 2017 Anna Pantelia

“It isn’t just about our administration or that of our counterparts – sometimes it’s difficult for applicants to submit documentation or we need documents from a relative in another state,” Papailiou said. “There are many legal issues. Sometimes they lose track of the relative. The authorities can’t find that person so we have to contact the applicants here in Greece, advising them to try to find them and go to the Asylum Service.

“And poor documentation of identity – a surname somehow written differently by the interpreter – can cause problems,” she added.

Rudi, Lava, Elin and Evin play in the backyard of the apartment in which they were staying in Aigaleo.

© 2017 Anna Pantelia
 
Every condition – timing, applications and charitable assistance – had to align perfectly for Falak and her children to get to this point.
 
Their family’s story would have been very different if it were not for two things.
 
First, Mohammed arrived in Germany in 2015, before a change in policy that has increased the assignment of subsidiary protectionrather than refugee protection to Syrians. Fewer than 1 percent of Syrians were given subsidiary protection in 2015, compared with 42 percent the following year.
 
Because Mohammed received full refugee status, the family was relatively easily reunified and they were all granted refugee status and permission to remain in Germany for three years after Mohammed arrived in 2015. After that, their residency permit can be reviewed.
 
Subsidiary protection is based on the European Commission’s Qualification Directive of 2011, which says that a person is entitled to subsidiary protection if they cannot return to a home country because they “would face a real risk of suffering serious harm” and are “unable or, owing to such risk, unwilling to avail himself or herself of the protection of that country.”
 
Subsidiary protection gives provisional protection but does not give beneficiaries full rights as refugees. It comes with a residence permit of one year instead of the three years given to people with refugee status and, from March 2016, those with subsidiary protection have no right to family reunification for two years.
 

Falak and her five children arrive in Dusseldorf airport, where she is going to meet her husband after two years.

© 2017 Anna Pantelia
 
The second way that time was on the family’s side was that Falak and the children arrived in Greece just days before the onset of the E.U.-Turkey deal, an arrangement intended to stem the migration flow to Europe. Under the agreement, Greece should return all new arrivals on the Greek islands after March 20, 2016, to Turkey, including Syrians, on the questionable presumption that Turkey is what is known as a “safe” third country.
 
Although few of those who arrived since March 20, 2016 have actually been returned to Turkey, the fact that Falak and her children arrived just before the deal went into effect made it possible for them to leave Lesbos for the Greek mainland. It also gave a green light to the Greek Asylum Service and others to process their asylum claim and facilitate their departure to Germany.
 

Mohammed and Falak prepare the beds for their children in their new house in Bonn, Germany. 

© 2017 Anna Pantelia
 
Those who have arrived on the Greek islands since the deal went into effect are subject to different rules. More than a year later, thousands are still held on the islands, in harsh conditions, living in fear of being forcibly sent to Turkey. Most have been denied meaningful access to asylum procedures and to the rights that would follow from being recognized as refugees.
 
At least 1,187 people have been forcibly returned from the Greek islands to Turkey since the deal went into effect. Some did not apply for asylum. Others withdrew their asylum application after a negative decision at their first hearing. And others were rejected after an examination of their cases on their merits – in procedures that many independent observers, including the U.N. refugee agency UNHCR, have found to have irregularities.
 
So far, however, no one has been forcibly returned to Turkey on the grounds that their asylum application was inadmissible because they could obtain effective protection in Turkey – the cornerstone of the deal.
 

Mohammed, two of his daughters Evin and Lava and his son Mohammed chat on Skype with the Osana family in Greece.

© 2017 Anna Pantelia
 
In Falak and Mohammed’s case, it also helped that their children were all young. If they had had adult children, they would not have been able to reunite in this way.
 
National laws and the E.U.’s Dublin regulation use a narrow definition of family for the purposes of reunification: a husband, wife and children under 18 years old. Human Rights Watch, Action Aid and other organizations working for the rights of refugees strongly support broadening the definitions of family for the family reunification process beyond the nuclear family with minor children.
 
Falak and Mohammed still worry about the family they left behind. Mohammed has not heard any word of his older brother, who was trapped in Syria behind the sealed border to Turkey.
 
Falak has a sister, a brother, an uncle and grandparents in Germany. Her parents and another brother fled to Turkey about a year ago. They applied for resettlement in Germany. Her brother, who has a disability, lived with his parents before the war. They are still waiting to hear about their case.
 
The relationship between older parents and adult children is not normally recognized by national laws on family reunification. Member states of the European Union are failing to protect older mothers and fathers, grandmothers and grandfathers, who want to live out their days with their family. Under such a narrow definition of family, Falak’s parents have no right to be reunited with her or her adult siblings.
 

Falak unpacks her family’s luggage in their new house in Germany.

Family reunification is a reasonable aim for all refugees – one they ought to be able to aspire to and realize. On a basic human level, it relieves suffering, and all basic civil and political human rights standards – whether European or universal – have recognized a need to protect the family. It is time for the E.U. and its member states to address the gaps in protection for refugee families torn apart by their desperate struggle to reach safety.

Author: Human Rights Watch
Posted: January 1, 1970, 12:00 am

Dr. Eva Duarte and a colleague, Dr. Castro, at the National Cancer Institute

© Private

Dr. Eva Duarte has spent more than a decade helping people with advanced cancer through their final months. Even now she cries as she recalls how some of her patients spent their last days.

“There was a man, Carlos, I will never forget him,” she says. “His wife was pregnant all through his treatment. He had advanced colon cancer. In his last months, he taught her how to run the business, how to look after the money. He knew he would never see his son grow up. We cried a lot together. At the end, he looked at her and said, ‘Hug me I’m going.’ He just said goodbye and left. He was so brave.”

Carlos was one of her luckier patients. Although he was poor and could not afford pain medicine – the government only covers the costs for patients staying in government-funded hospitals – Duarte found a donor to pay for his opioids. This allowed him to function during those last few months, giving both his knowledge and his attention to his family.

Thousands of patients with advanced illnesses in Guatemala suffer unnecessarily from severe pain because they cannot get appropriate pain medications.

Many of Duarte’s cancer patients aren’t so lucky. They pass their last weeks in terrible pain, unable to spend quality time with those they love most, forced to choose between being able to get pain relief in a hospital, often many miles from home, or staying with their families.

In a new report, “Punishing the Patient: Ensuring Access to Pain Treatment in Guatemala,” Human Rights Watch looks at the struggles doctors in Guatemala face to give patients with life-threatening illnesses access to pain killers like morphine. Each year, an estimated 22,000 Guatemalans experience advanced, chronic illnesses including cancer, heart, lung, or renal disease, and HIV/AIDS – all of which can come with significant pain.

Illicit drugs have long flowed through Guatemala. The government’s measures to counter drug trafficking, however, have made it extremely hard for patients with advanced illnesses to get relief from their suffering. Morphine and other opioids are difficult for doctors to prescribe.

Dr. Eva Duarte writing prescriptions for her patients

© Private

“In any war, you have unintended victims and in the war on drugs the collateral damage is the people with pain that needs to be treated,” Duarte said.

Duarte founded the Palliative Care Unit of Guatemala’s National Cancer Institute, a health service that includes pain treatment and focuses on improving the quality of life for people with serious illnesses. For her, the emotionally draining work of palliative care is even harder because the unit struggles to provide its patients with morphine and other necessary pain relief.

One patient facing this problem told Human Rights Watch researchers that she thought the pain would kill her before her illness did.

The red tape doctors and patients face is daunting. Doctors have to fill out the prescription in triplicate and on a special pad, which they say is not easy to get. Patients have to get the prescription authorized with a seal and signature from an office in the capital.

In any war, you have unintended victims and in the war on drugs the collateral damage is the people with pain that needs to be treated.

Dr. Eva Duarte

Palliative Care Specialist

And since some pharmacies in Guatemala City are the only ones that stock opioids, people in rural areas have to get to a hospital or pharmacy that stocks them. Some patients brave bumpy bus journeys of up to seven hours one way through the mountainous country to get there.

Often patients are too ill to travel, so their caregivers have to make the trip – meaning they also have to take time off work. That makes it more difficult to afford the medicines, which aren’t subsidized by the government if the patient isn’t staying in a public hospital.

Duarte says that doctors can shy away from even issuing the prescriptions. The Ministry of Health keeps records of these prescriptions in its narcotics office, and doctors can find themselves and their practices under scrutiny if they are thought to be issuing too many.

“When I started in the hospital, the pharmacist didn’t allow me to prescribe more than a certain number of ampules [containers of injectable medicine] a month,” Duarte says. “This number was ridiculous. The pharmacist told me if she reported more consumption she would have troubles with the Ministry of Health.”

The ministry did get involved. It made Duarte sign a “commitment letter” that meant the morphine she was administering was carefully monitored.

Dr. Eva Duarte founded the Palliative Care Unit of Guatemala’s National Cancer Institute

© Private

Guatemala’s palliative care providers, dedicated to giving their patients the best possible care, struggle to do this while working within the law. But they have figured out some work-arounds.

Because the rules against administering pain medication are less harsh for patients staying in a hospital, doctors would classify some as inpatients, even if they were not staying overnight.

For people living far away, many doctors carry their own supply and lend patients enough morphine to ease the burden of chronic pain through the weekend, when they can’t get medication from pharmacies, hoping to cut down on midnight phone calls from pain-wracked patients.

After her first year of house calls, Duarte knew to always keep a small supply of morphine with her, even though this wasn’t allowed.

 

She would then leave a few days’ supply for a patient in pain, on the understanding that they would give her back the same number of ampules when they managed to fill the prescription she gave them.

Some doctors even resorted to taking leftover prescriptions after a patient died and using them to help the living.

“I never sold medicines to patients, because it is not allowed here, but many physicians do it, and I don’t judge them, because when you have a patient in pain what can you do?” she said. “The system pushes us to do things like that.”

For Duarte, working in palliative care in a county that does not understand its importance has taken an emotional toll. She recently left to join a private hospital, where she founded a Palliative Care Unit that had much better resources, allowing her to see her children and to work set hours.

“I was recovering my life,” she said.

Duarte spent years explaining to other doctors why they should refer patients with advanced illnesses to her center, and the need for psychological intervention. She also met daily with families and patients. Her work was draining, yet ultimately rewarding.

When people have serious illnesses, she said, they “have to deal with every possible suffering all at the same time – physical, mental, economical, spiritual. Everything, and you are just a doctor.”

Ultimately, she wants her patients to have the necessary pain medicine so they have a better chance of passing away as Carlos did – at peace and with his family. 

Author: Human Rights Watch
Posted: January 1, 1970, 12:00 am

Thousands of patients with advanced illnesses in Guatemala suffer unnecessarily from severe pain because they cannot get appropriate pain medications. Guatemala’s drug control regulations – meant to prevent drug abuse – make it almost impossible for many patients with cancer and other advanced illnesses to get strong pain medicines like morphine. Patients described their extreme pain and other symptoms and how they struggled to cope with a dim prognosis. They said they had to make visits to multiple doctors because many were unable to adequately treat pain, and many said they faced lengthy travel on crowded buses to reach hospitals that offer pain treatment.

Posted: January 1, 1970, 12:00 am

The palliative care services at the National Cancer Institute of Guatemala. Guatemala City, August 2015. 

© 2015 Human Rights Watch

(Guatemala City) – Thousands of patients with advanced illnesses in Guatemala suffer unnecessarily from severe pain because they cannot get appropriate pain medications, Human Rights Watch said in a report released today.

The 62-page report, “‘Punishing the Patient’: Ensuring Access to Pain Treatment in Guatemala,” documents how Guatemala’s drug control regulations – meant to prevent drug abuse – make it almost impossible for many patients with cancer and other advanced illnesses to get strong pain medicines like morphine. Patients described their extreme pain and other symptoms and how they struggled to cope with a dim prognosis. They said they had to make visits to multiple doctors because many were unable to adequately treat pain, and many said they faced lengthy travel on crowded buses to reach hospitals that offer pain treatment.

“Many patients in Guatemala face unbearable suffering at the end of life, but it doesn’t have to be that way,” said Diederik Lohman, acting health director at Human Rights Watch. “With a few simple, inexpensive steps, the government can drastically improve the plight of these patients.”

Thousands of patients with advanced illnesses in Guatemala suffer unnecessarily from severe pain because they cannot get appropriate pain medications.

 
The report is based on in-depth interviews with 79 people – including 37 people with cancer, or their relatives – and 38 healthcare workers. Human Rights Watch also identified the lack of palliative care policies and the fact that none of Guatemala’s medical schools include instruction on palliative care for medical students as barriers to proper medical care at the end of life.
 
Human Rights Watch estimates that at least 5,000 Guatemalans with cancer and HIV/AIDS live and die in pain per year because they cannot get morphine or other opioid analgesics. It said that about 28,500 Guatemalans – including around 1,500 children – require palliative care each year. These numbers are likely to increase with gains in life expectancy in Guatemala.
 
The World Health Organization considers morphine an essential medicine for treatment of moderate to severe pain.
 
As morphine is made from the poppy plant, international law requires governments to regulate who can get the medication and how. Such regulations should strike a balance between ensuring that patients can get morphine when they need it and preventing misuse, Human Rights Watch said.
 
Witness: A Doctor’s Struggle to Bring Relief to Dying Patients

Witness: A Doctor’s Struggle to Bring Relief to Dying Patients

Guatemala’s red tape stops physicians from prescribing pain medication

 
But Human Rights Watch concluded that Guatemala’s regulations did not strike that balance. Instead, the regulations are almost myopically concerned with controlling opioid pain medicines, with little consideration for patients. Its regulations are far more restrictive than mandated by international law and are out of step with those of other countries in the region, such as Costa Rica, Mexico, and Panama.
 
Gabriel Morales, a cancer patient, told Human Rights Watch that he had to travel more than seven hours every 10 to 15 days on public buses to get pain medications for abdominal cancer in Guatemala City: “I would wake up at 1 a.m., walk about half a kilometer, and catch the 2:30 a.m. bus. I would get to the boundary of Guatemala City around 8 a.m., where I would take a second bus to the center of the city.”
 
A doctor said: “I mourn for all the patients I can’t see. There are so many people who don’t have access to a doctor who can prescribe opioids or even someone to refer them to a doctor who can.” Only 50 to 60 doctors out of about 14,000 doctors in the country, all of them in Guatemala City, can prescribe morphine. This is because under Guatemala’s regulations, a physician must use a special prescription pad to prescribe morphine and other opioid analgesics, but the procedure for getting the pad is needlessly complicated, Human Rights Watch found.
 
Doctors should not have to push the boundaries of the law to provide proper care to their patients.

Diederik Lohman

Acting director, Health and Human Rights Division

Patients or their families must then obtain a stamp from a Health Ministry office in Guatemala City to validate the prescription before a pharmacy can dispense the medications. Human Rights Watch is unaware of any other country that requires this kind of validation, which makes it practically impossible for many patients to get the medication.
 
Human Rights Watch found that Guatemala’s restrictive regulations pose an acute ethical dilemma for physicians. Often, they cannot offer proper care to patients, as required by their professional oath, without stretching or breaking the law and thus exposing themselves to potential disciplinary or criminal penalties.
 
Some hospitals in Guatemala City have found creative solutions to circumvent the complex procedure by allowing hospital pharmacies, which normally provide medicines only to hospitalized patients, to dispense morphine to patients who are not hospitalized. This practice, which several consecutive governments have tolerated, has alleviated the situation for some patients, but a permanent and country-wide solution is urgently required, Human Rights Watch said.
 
Several doctors also said that they accepted and reused opioid analgesics that families have left over when a loved one dies – a practice that is not legal in Guatemala but has also been tolerated. A few healthcare workers said that they told their patients to try buying pain medicines on the black market since obtaining them legally was not feasible.
 
“Doctors should not have to push the boundaries of the law to provide proper care to their patients,” Lohman said, “This government has an opportunity to solve this longstanding problem once and for all.”
Posted: January 1, 1970, 12:00 am

Summary

I thought I was going to die, not from the cancer, but from the pain.

— Marianna Hernandez, 58-year-old woman with liver and abdominal cancer, Guatemala City, December 2014

They are punishing the patient…. Life is difficult. Having cancer is even more difficult. Why do they have to make things harder?

—Dr. Eva Duarte, palliative care physician, Guatemala City, December 2014

Each year, an estimated 28,500 Guatemalans experience advanced, chronic illnesses, such as cancer; heart, lung, or renal disease; and HIV/AIDS. Many thousands of them will suffer significant pain related to their illness.

This pain can generally be treated well with inexpensive medications and eased with palliative care: a health service that includes treatment of pain but focuses on improving the overall quality of life of people with life-limiting illnesses.

Thousands of patients with advanced illnesses in Guatemala suffer unnecessarily from severe pain because they cannot get appropriate pain medications.

However, a Human Rights Watch analysis has found that Guatemala’s lack of effort to ensure access to palliative care, regulatory barriers, and needlessly restrictive and complex regulations on controlled substances condemn many patients with pain to needless suffering, with devastating consequences for them and their families.

The 79 individuals interviewed—including 37 people with cancer or their relatives, and 38 health care workers—described extreme pain and other symptoms; struggles coping with a dim prognosis; visits to multiple doctors unable to adequately treat pain; and often lengthy travel on crowded buses to reach hospitals that offer pain treatment.

Gabriel Morales, for example, endured a journey for more than seven hours every 10 to 15 days on public buses to get pain medications for abdominal cancer in Guatemala City. He said:

I would wake up at 1 a.m., walk about half a kilometer, and catch the 2:30 a.m. bus. I would get to the boundary of Guatemala City around 8 a.m., where I would take a second bus to the center of the city.

Opioid analgesics, such as morphine, are essential for treating moderate to severe pain that cancer and other diseases cause. Yet because they are derived from the poppy plant—the source of opium—they are considered to be controlled substances. National and international law requires that countries strike a balance between ensuring that people with legitimate medical need can access opioids and preventing their misuse.

However, our review of Guatemala’s drug control system and interviews with health care workers reveal a system almost myopically concerned with controlling these medicines with little consideration for patients. Among our findings:

  • Only four public or government-supported hospitals offer palliative care: all are in Guatemala City, although nearly 80 percent of the population lives elsewhere;
  • Only 50 to 60 out of around 14,000 doctors in Guatemala have special prescription pads needed to prescribe morphine, all of whom work in Guatemala City;
  • Only three pharmacies in the country, all in Guatemala City, consistently carry opioid analgesics.

Patients who ultimately manage to find a physician to treat their pain are the lucky ones: many more die under excruciating circumstances with no access to such treatment. Indeed, at least 5,500 Guatemalans with cancer and HIV/AIDS suffer annually due to barriers accessing low-cost opioid medications. With life expectancy and the percentage of the population over 65 both projected to rise, the burden of chronic illness looks likely to only grow. According to World Health Organization (WHO) data, an estimated 57 percent of all deaths in 2015 in Guatemala were due to non-communicable diseases.

“I mourn for all the patients I can’t see,” one doctor who provides palliative care said. “There are so many people who don’t have access to a doctor who can prescribe opioids or even someone to refer them to a doctor who can.”[1]

Restrictive Regulations

The 1961 Single Convention on Narcotic Drugs, the international treaty that forms the basis for the global response to drugs, states that the medical use of opiates continues to be “indispensable for the relief of pain and suffering” and that “adequate provision must be made to ensure the availability of narcotic drugs for such purposes.”

WHO includes morphine and several other opioid analgesics in its Model List of Essential Medicines, a roster of the minimum essential medications that should be available to all persons who need them.

As noted, countries are obligated to regulate the use of these medicines. The 1961 Single Convention sets out four basic requirements that national regulatory systems must fulfill:

  • Only licensed individuals may handle and dispense these medications;
  • The medications may only be transferred between authorized institutions or persons;
  • Dispensing may only happen based on a medical prescription;
  • Relevant records must be kept for at least two years.

The convention allows countries to impose further requirements if they feel these are needed, but, as WHO states, countries must take care that any additional requirements do not unnecessarily impede medical access.

Guatemala’s drug regulations are needlessly restrictive, inconsistent with both WHO and International Narcotics Control Board (INCB) recommendations and out of line with regulations in other countries in the region.

One internal medicine physician said: “I get mad at the system. I know what to do and how to do it, but they [the regulations] tie my hands….” Some health care workers told us that they knowingly violate regulations to help patients, risking disciplinary and criminal sanctions. For example, one physician said: “For us, there’s no choice [but to circumvent the regulations]. We’re in front of the patients. What else can we do but help?”

A number of hospitals have taken the unusual step of providing medicines for outpatients from their internal pharmacies, recognizing they will not have access to them if they do not.

Obstacles

The system also creates multiple, often insurmountable obstacles for physicians, pharmacists, and patients, including the requirement that:

  • A physician use a special prescription pad that is needlessly difficult to obtain;
  • Physicians must write a second prescription form for many patients;
  • Patients must obtain a stamp to validate the prescription before a pharmacy can dispense the medications.

“None of the doctors outside Guatemala City have special prescription forms,” a palliative care physician in Guatemala City said. “It’s a lot of work to get it. They would have to come to Guatemala City and would lose a full day of work.” Referring to the requirement to validate prescriptions, a pharmacist said: “The patients are literally dying and in pain. I can’t send them to the [validation office] on a bus. I feel responsible to continue [dispensing] to them.”

These regulatory barriers mean that the use of opioid analgesics in Guatemala is very low: the amount of morphine used per year would be sufficient to treat some 3,000 (35 percent) patients with terminal cancer or AIDS per year if used exclusively to treat them. In reality, morphine is also used for acute pain in trauma cases, post-surgery, and other situations.

Failure to Reform

Palliative care physicians have repeatedly brought these challenges to the attention of the Guatemalan government. WHO, INCB, and other United Nations bodies have also repeatedly called on countries to remove regulatory barriers to the use of opioid analgesics. Most recently, in April 2016, the UN General Assembly Special Session on the World Drug Problem called on countries to consider reviewing “unduly restrictive” regulations and impediments “to ensure access to controlled substances for medical and scientific purposes, including for the relief of pain and suffering….”

WHO has urged countries to ensure that palliative care is integrated into all health care levels; to implement health and health financing policies to promote it; to ensure that health professionals are adequately trained; and to ensure the availability of palliative care medicines, such as opioid analgesics.

However, successive administrations in Guatemala have failed to carry out reforms needed to improve access of patients with life-limiting illnesses to opioid analgesics.

Although the Ministry of Health formally created a palliative care commission in December 2011, Guatemala still does not have a policy or strategy to develop palliative care and ensure it is available outside Guatemala City. The country’s only public medical school does not teach palliative care and pain management as part of its undergraduate curriculum; only one of the three private medical schools does.

Moreover, physicians specializing in oncology, internal medicine, and other areas of medicine that frequently care for patients with life-limiting illnesses do not receive any academic or clinical training in palliative care. Physicians specializing in anesthesiology have a two-month rotation in palliative care.

***

International human rights law requires the Guatemalan government to ensure that patients with life-limiting illnesses have adequate access to pain treatment and palliative care. Its failure to do so violates the right to the highest attainable standard of health and may violate the obligation to protect people from cruel, inhuman, and degrading treatment.

The government of Guatemala faces many complex health care challenges due to resource problems, inadequate infrastructure, shortages of medicines, and weak public health care services. Ensuring adequate access to palliative care for all Guatemalans who need it will be no easy feat. But the government has a real opportunity to make a significant difference in the lives of thousands of people by taking a number of low-cost, straight-forward steps to remove barriers to the provision of palliative care. A number of key steps, such as increasing the number of forms per prescription pad, can be taken immediately without any regulatory reform and would significantly improve access to palliative care for patients. Other changes would require regulatory reform.

In April 2016, at the UN General Assembly Special Session on the World Drug Problem, Guatemala’s President Jimmy Morales strongly emphasized the importance of ensuring that the health and well-being of humankind becomes the cornerstone of global drug control efforts.

Human Rights Watch believes that as part of its efforts to place health at the center of the domestic response to controlled substances, the Guatemalan government should reform its drug regulations and health policies to ensure patients who suffer from severe pain due to various life-limiting illnesses have adequate access to opioid analgesics and palliative care.

Key Recommendations

To the Government of Guatemala:

  • Reform drug control regulations. Drug control regulations are needlessly restrictive; deter doctors and pharmacists from prescribing and dispensing opioids; and lead to unnecessary suffering for thousands of Guatemalans. Some of these issues can be addressed immediately and without regulatory changes; others require regulatory reform. The government can immediately increase the number of prescription forms per pad and allow physicians to have two prescription pads at once. It should amend its regulations to remove the dictamen requirement and abolish or at least modify authorization procedures. The Ministry of Health should hold an inclusive meeting of relevant stakeholders to inform them of these regulatory reforms.
  • Ensure immediate-release oral morphine becomes available in every departmento of Guatemala. Ensure that there is at least one pharmacy in each departmento that stocks immediate-release oral morphine. Where no private pharmacies stock oral morphine, ensure that a hospital pharmacy dispenses oral morphine to outpatients.
  • Develop a mandatory undergraduate curriculum in palliative care and mandatory clinical training in palliative care for doctors of certain postgraduate programs. San Carlos University, the largest and only public medical school in Guatemala, should develop a mandatory undergraduate curriculum in palliative care to ensure basic training in the discipline. Doctors of certain postgraduate programs who frequently treat patients with chronic illnesses—including oncology, pediatrics, and internal medicine—should be required to undertake rotations in palliative care units.
  • Take steps to create pain and palliative care units in key departmentos. Identify key facilities countrywide to develop pain treatment and palliative care units. These could act as regional hubs for palliative care and expand palliative care services beyond Guatemala City. The facilities would allow for clinical rotations in palliative care, expanding the number of physicians trained in this health service.

Methodology

This report is based on research conducted between December 2014 and August 2015, including visits to Guatemala in December 2014 and July and August 2015. Field investigation was conducted primarily in Guatemala City. Additional research was conducted in Quetzaltenango. We also conducted extensive desk research regarding palliative care treatment availability in various other parts of the country.

Over a cumulative total of three weeks in Guatemala, a Human Rights Watch researcher conducted 79 interviews with a wide variety of stakeholders, including 37 people with cancer or their relatives; 38 health care workers, including oncologists, anesthesiologists, palliative care doctors, and pharmacists; and representatives of the Department of Regulation and Control of Pharmaceutical Products and Related Products.

Interviews with patients and their relatives were conducted at a variety of hospitals. They were conducted in private whenever possible. Interviews were semi-structured and covered a range of topics related to pain treatment and palliative care. Before each interview, we informed interviewees of its purpose; of the kinds of issues that would be covered; and asked whether they wanted to participate. We informed them that they could discontinue the interview at any time or decline to answer any specific questions, without consequence. No incentives were offered or provided to persons interviewed.

The identities of all patients, relatives, and health care workers interviewed have been disguised to protect their privacy, except when they specifically agreed that their real name could be used.

Most interviews were conducted in Spanish with the assistance of an interpreter. Some interviews were done in English.

All documents cited in the report are either publicly available or on file with Human Rights Watch.

I. Background

Importance of Palliative Care and Pain Relief

With life expectancy increasing worldwide, the prevalence of non-communicable diseases (NCDs) and chronic illnesses is rising rapidly.[2] NCDs—such as cancer, heart disease, diabetes, and respiratory illnesses—are by far the leading cause of mortality in the world.[3] They and other chronic illnesses are often accompanied by pain and other distressing symptoms, such as breathlessness, nausea, anxiety, and depression (see Table 1).[4]

This epidemiological shift is happening in Guatemala as well.[5] Indeed, according to WHO, in the last 25 years, mortality due to NCDs in the country increased by 61 percent, while mortality due to communicable diseases decreased by 63 percent during the same period.[6] Based on WHO’s global burden of disease data, NCDs accounted for around 57 percent of all deaths in Guatemala in 2015.[7] With life expectancy and the percentage of the population over 65 projected to increase, the burden of chronic illness is likely to grow.[8]

Palliative care, an emerging field of medicine, focuses on relieving these symptoms and ensuring that people with life-limiting illnesses and their loved-ones can enjoy the best possible quality of life throughout the course of their disease up until their last moments.

An important aspect of palliative care is addressing chronic, severe pain. Persistent pain profoundly impacts life quality and can have physical, psychological, and social consequences. These include: less mobility and consequent loss of strength; a compromised immune system; and interference with a person’s ability to eat, concentrate, sleep, or interact with others.[9] The physical effect of chronic pain and the psychological strain it causes can even influence the course of disease: as WHO notes in its cancer control guidelines, “pain can kill.”[10] Social consequences include the inability to work; to care for oneself, children, or family members; to participate in social activities; and to find closure at the end of life.[11]

According to WHO, “Most, if not all, pain due to cancer could be relieved if we implemented existing medical knowledge and treatments” (original emphasis).[12] The mainstay medication for treating moderate to severe cancer pain is morphine, an inexpensive opioid made of poppy plant extract. Morphine is a controlled medication; its manufacture and distribution is strictly regulated internationally and nationally.

Medical experts have recognized the importance of opioid pain relievers for decades. The 1961 Single Convention on Narcotic Drugs, the international treaty that governs the use of narcotic drugs, explicitly states that “the medical use of narcotic drugs continues to be indispensable for the relief of pain and suffering,” and WHO has recognized that strong opioids, such as morphine, are “absolutely necessary.”[13]

While pain is often a key symptom in people with life-limiting illnesses, palliative care is broader than just relief of physical pain. For example, many people with chronic illness experience shortness of breath—or dyspnea—a distressing symptom that makes the patient feel they can never get enough air.[14] The physical and psychological effects of dyspnea can cause depression, anxiety, and insomnia.[15] The psychological effects of dyspnea are particularly pronounced, as even mild alterations in breathing patterns may be “cognitively and emotionally interpreted as serious threats to health and life….”[16]

Treatment protocols, such as breathing techniques, oxygen, and relaxation, have been shown to provide significant relief for some patients with dyspnea.[17] Increasingly, morphine has also been recommended to reduce the symptoms of dyspnea.[18]

People with life-limiting illness and their relatives also frequently confront profound psychosocial and spiritual questions as they face life-threatening, incurable, and often debilitating illness. Anxiety and depression are common symptoms.[19] Palliative care interventions like psychosocial counseling and spiritual support have been shown to considerably diminish the incidence and severity of such symptoms and to improve the quality of life of patients and their families.[20]

WHO has urged countries, including those with limited resources, to make palliative care services available. WHO recommends that countries prioritize implementing palliative care services in medical institutions that deal with large numbers of patients requiring palliative care and in the community where it can be provided at low cost to people with limited access to medical facilities.[21]

WHO has observed that these measures cost very little but can have a significant effect.[22] Indeed, as many countries face difficulty accommodating the increased demand for NCD services, some studies have found that offering palliative care leads to overall cost savings for health systems by reducing the pressure on medical systems.[23] 

Despite the importance of this essential health care service, access to palliative care has lagged behind the development of other health services due to well-documented barriers in the areas of health care policy, health care education, and medication availability.[24] Indeed, a joint report by the WHO and the Worldwide Hospice Palliative Care Alliance states that 98 countries have no known palliative care services.[25] As Human Rights Watch has found, the gap between the need for pain treatment and palliative care and its availability is the result of a vicious cycle of under-treatment: because these health interventions are not priorities for governments, health care workers do not receive appropriate training, which leads to under-treatment and low demand for the service.[26]

According to the International Narcotics Control Board (INCB), the body charged with monitoring the 1961 Single Convention on Narcotic Drugs, “[a]pproximately 5.5 billion people, or three quarters of the world’s population … have inadequate access to treatment for moderate to severe pain….”[27]

Due to limited access to essential medications, WHO estimates that tens of millions of people around the world, including around 5.5 million end-stage cancer patients and 1 million people with AIDS, suffer from moderate to severe pain each year without treatment.[28]

II.Experience of People Needing Pain Treatment

In Guatemala, the voice of the patient is not heard. They are not organized. They can’t express their needs to the government…. [So the government] does not see the problem. If they spent one week here with us, it would change their minds.

— Dr. Victor Samayoa, chief palliative care physician at the Cancer Institute of Guatemala, Guatemala City, July 2015[29]

An estimated 11,000 Guatemalans die each year from cancer and HIV.[30] Almost 8,500 of them are likely to develop moderate to severe pain that may require treatment with opioid analgesics.[31] In total, some 28,500 Guatemalans—including around 1,500 children—require palliative care each year.[32]

Yet, only four public or government-supported hospitals—the Cancer Institute of Guatemala (Instituto de Cancerología, INCAN Hospital); the National Pediatric Oncology Center (Unidad Nacional de Oncología Pediátrica); the Specialty Social Security Hospital (Hospital de Especialidades del Instituto Guatemalteco de Seguridad Social); and Roosevelt Hospital—currently offer palliative care, mostly the result of initiatives of individual staff members.[33]

All of these hospitals are located in Guatemala City, while 80 percent of the population lives outside the capital.[34] Moreover, three of the hospitals only attend to cancer patients (the two cancer hospitals and the social security hospital), and one of these three only treats children. An estimated 61 percent of people in need of palliative care have a chronic illness other than cancer.[35] Guatemala has two private palliative care providers, a not-for-profit hospice and a private hospital, each in Guatemala City. A few private physicians also offer palliative care and offer limited services outside the capital.

A common narrative emerged among the 37 patients and their families we interviewed: extreme pain and other symptoms; struggles coping with a dim prognosis; visits to multiple doctors who cannot adequately treat their pain; and often lengthy travel on crowded buses to reach a hospital that offers pain treatment.

Suffering Due to Untreated Pain

Emmanuel Garcia was diagnosed with a brain tumor in 2012 when he was a 17-year-old high school student in Guatemala City. His mother took him to a hospital for diagnostic tests after he developed severe headaches, nausea, vomiting, and temporary loss of vision. After his diagnosis, Garcia underwent surgery at General Hospital San Juan de Dios, a tertiary care public hospital in Guatemala City.

Despite the surgery, Garcia continued to experience severe pain, forcing him to drop out of school a few months before he was expected to graduate. His mother broke down in tears when interviewed by Human Rights Watch: “The pain was so intense [at some points] that he would grab his hair screaming and run through the streets calling for help.”[36]

Despite Garcia’s pain, the doctors did not prescribe him strong pain medicines. Indeed, his mother felt that the doctors paid little attention to his symptoms once they decided that curative measures were not feasible. Eventually, his mother learned of a not-for-profit hospice outside Guatemala City, Hospice Estuardo Mini, and took her son there in September 2014. At the hospice, she said that staff put him on morphine and oxycodone and “controlled his pain instantaneously.”[37] He passed away there about five months later.

Gabriel Morales was 60 years old when he felt a sudden pain in his abdomen while lifting a heavy object at work. The pain did not subside, so he went to a hospital. He was diagnosed with abdominal cancer and admitted for treatment. Over the next two and a half months, Morales’ pain went from bad to worse to the point where his relatives thought his death was imminent. He said:

The pain was very high…. I received injections of [an anti-inflammatory pain medicine] that … would relieve the pain for a few hours, but it would come back. It was very difficult…. My family started mourning me when they saw the pain I was in.[38]

Mariel Torres, a 58-year-old women with a facial tumor, said:

I started having symptoms about four months ago…. My only symptom was pain on the left side of my face. The pain was [the worst I could have imagined]. I cried so much with the pain. I couldn’t sleep. I couldn’t eat. I couldn’t talk.[39]

Delayed Access to Palliative Care

Sometimes patients consult with other doctors before they come. They only prescribe them ibuprofen or other low-grade pain medications…. So many of the patients [rate their] pain as 10 out of 10 [on a scale from 0 to 10] when they arrive. So many times they are taking two to three times the [maximum] dose of low-grade pain killers. It’s very difficult.

—Palliative care physician, Guatemala City, December 2014[40] 

Many people interviewed described significant delays accessing pain treatment and palliative care. As it is available in only a few hospitals in Guatemala, many of them, including Gabriel Morales and Mariel Torres, initially sought care at hospitals around the country that did not properly assess or treat their symptoms. They described severe suffering and intense anguish as doctors struggled to address their urgent health needs.

Catalina Gutierrez, a 40-year-old baker from Guatemala City, first developed symptoms in early 2014. Tests at a public hospital revealed colon cancer. Gutierrez underwent two surgeries followed by rounds of chemotherapy, but by April 2014 she developed intense pain. Her doctors prescribed her a non-opioid pain medications, but she told Human Rights Watch they were insufficient to control her pain:

This relieved the pain, but a very short time later it would come back…. Since I began the second surgery, from this point until now, I’ve been suffering from pain.… I couldn’t stand the pain. I couldn’t sleep anymore.[41]

Gutierrez was eventually referred to Guatemala’s cancer institute where physicians put her on an opioid analgesic that helped bring her pain under control.

Elena Garcia, a 61-year-old women with ovarian cancer, also spent months in pain before receiving proper care. Her daughter told Human Rights Watch:

It started with pain on her side…. My mom couldn’t sleep…. Every time she tried to walk, she felt like there were needles sticking into her foot…. The first time we went to a public hospital near our house … the only thing they gave her was [ibuprofen] and set another meeting for two months later to re-check the pain.[42]

Fifteen days later, when the pain would not subside, Garcia and her daughter traveled to Guatemala’s cancer institute where she was assessed for pain and treated. Garcia’s daughter said: “Some days are better, some days are worse, but the pain has been relieved a lot.” [43]

Long Distances to Palliative Care Providers

I take about four buses to get here. I wake up at 4 a.m. to get here for a morning appointment. It’s very difficult. I manage an internet café, and I must close all day to come here. I have a two-and-a-half-year-old child that I must leave. I come twice a month, but, since the medication is increasing, I sometimes come three to four times a month.

—Luciana Garcia, daughter of patient with ovarian cancer, December 16, 2014[44]

Since all hospitals that offer palliative care are in Guatemala City, many patients must travel long distances to access it, frequently on public transport. The cost and inconvenience of such travel may be unavoidable for curative care, as primary and many secondary care facilities do not have the specialists, diagnostic equipment, and laboratory capacity to properly manage patients with complex illnesses. This is not true, however, for palliative care, which does not involve complex interventions for most and can be easily and cheaply provided at lower levels of care, closer to patients’ homes.

For many people with advanced illness travel can be very difficult, if not impossible. They often end up having to choose between three unenviable options:

  • Enduring hardships of traveling, even in a fragile condition, to receive optimal care;
  • Sending relatives—often their only caregivers—to get medications. In such cases, they do not see the physician themselves, compromising the ability of the palliative care team to provide proper care; or
  • Staying home and getting no care at all.

The cost of travel is a second dilemma. Patients and their families have often already incurred extensive costs, frequently accumulating considerable debt, paying for diagnostic tests and curative care. Even when palliative care services and medications are offered free of charge, travel often drives them deeper into poverty.

Various people whom Human Rights Watch interviewed described the hardships of having to travel long distances to get access to palliative care. Morales, the man with abdominal cancer described above, said he faced enormous difficulty traveling to Guatemala City on public transport to receive pain medications:

Before being an in-patient at the cancer institute, I would come every 10 to 15 days for a consult. I would take two buses. I would wake up at 1 a.m., walk about half a kilometer, and catch the 2:30 a.m. bus. I would get to the boundary of Guatemala City around 8 a.m., where I would take a second bus to the center of the city.

Since it was difficult for me to walk, it would take me 45 minutes to get from the second bus stop to the hospital. And then it was the same process to get back. It was very uncomfortable to travel because of all the pain. The last time I came, the incision from an operation bled while I was traveling. Because of this, I wasn’t able to go home, and I spent the night at a homeless shelter.[45]

Antonia Castillo, a 68-year-old woman with abdominal cancer, described similar difficulties:

Right now, I come every month to the cancer institute. Because I can’t take the pain on the bus, my son must drive to where I live and then drive me back. Both the time and the money are very difficult. My son usually rests on Sundays from work. That day, he comes to my house and stays over. The next day we leave early for the hospital. We left around 5:30 a.m. to get here this morning.[46]

Because of the long distances traveled to access palliative care services, many patients miss appointments. This creates significant challenges for palliative care providers and may result in lower quality care for the patient. As one palliative care physician noted:

We frequently see patients from five to six hours away…. Because of the travel, they don’t come as often as they should. It makes it difficult to properly manage patients and see what secondary effects the medications are causing.[47]

Public Transportation in Guatemala

For many low-income Guatemalans, the only option to travel to and within Guatemala City is a fleet of low-cost, government-subsidized buses.[48] The brightly-painted, recycled American school buses crisscrossing through Guatemalan City traffic are hard to miss; notoriously difficult to navigate; dangerously overcrowded; poorly maintained; treacherously driven; and frequently the targets of armed robberies and gang violence.[49] Indeed, according the Guatemala’s human rights ombudsman, 418 people were killed and 434 injured using public transport in Guatemala in 2014.[50]

Although riding these buses is a part of millions of Guatemalans’ daily commute, it poses a unique challenge to people with life-limiting illnesses who are forced to travel long distances to receive care.

The mother of Raul Mendoza, a 16-year-old boy with kidney cancer, told Human Rights Watch that she and her son had to stop taking public transport because people on the crowded buses would press on his nephrostomy bag, which collects urine diverted from the kidneys. She said:

[W]e used to take a bus to the hospital. We would leave around 4 a.m. and take three buses to get here around 7 a.m. After the surgery, they had to put a drainage tube in. Because the buses are so full, they would press on his bag. Now I have to take a taxi, which usually cost 150 Guatemala Quetzales (GTQ) (US$19) each way…. It’s very difficult. We have to save up to money for the trips.[51]

Positive Effect of Palliative Care on Patients’ Lives

As noted above, palliative care providers can generally control symptoms from life-limiting illnesses well, often with basic medications and interventions. Morphine and other opioid analgesics are highly effective in relieving cancer pain. Several people told us how dramatically their quality of life had improved once they received access to proper treatment.

Marianna Hernandez, a 58-year-old women with metastatic cancer of the abdomen, described her symptoms before and after going to a palliative care unit:

The pain was very intense. On a scale from 1 to 10, it was an 11. I couldn’t sleep anymore, and I lost my appetite. The pain lasted for three months until I came here to the palliative care unit and they prescribed oxycodone. Now my pain is a three or a four. I can sleep well, I can go to the bathroom, and I can eat.[52]

Filipe Soto described his father’s transformation after receiving pain treatment as follows:

Before coming here, they couldn’t control his pain. The pain was too strong. It was a 10 [on a scale of 0 to 10]. He couldn’t sleep when the symptoms started. He could do a little work, but he couldn’t finish it. He always had to stop and lay down. Since [coming to the cancer institute], the pain has been managed well. It makes him feel comfortable.… We actually feel satisfied with how he’s being taken care of.[53]

When Human Rights Watch first met Blanca Coslo, a 24-year-old woman with cervical cancer with metastasis in her lungs, she was waiting to be seen by a palliative care physician at the National Cancer Institute in Guatemala City. She was in a lot of pain and was experiencing trouble breathing. “I was very agitated and had a lot of pain in my chest,” she said.[54] After the palliative care doctor gave her pain medicines, she visibly improved. In an interview with Human Rights Watch she commented: “After [the morphine] was administered, I felt better, more calm, thank God. The coughing, the agitation, and the pain got better.”[55]

Laura Marina Muares Guzman, a patient with thyroid cancer, described a similar experience:

It has been difficult because when the pain comes, it’s on this part [of my neck] here, and if I strain myself a little then I feel that my neck becomes stiff. But an hour or half hour after I’ve taken [oxycodone], I feel relieved, and the pain lessens and it goes away slowly. I take it [my medication] every six hours.[56]

III. Exploring Barriers to Palliative Care in Guatemala

I get mad at the system. I know what to do and how to do it, but they [the regulations] tie my hands. I get even more frustrated because when the patients are in the hospital, I can relieve their pain. But in two to three days, when the patient leaves the hospital, they will have nothing.

Internal medicine physician at a public hospital three hours from Guatemala City, December 2014[57]

Barriers to Accessing Opioid Analgesics

WHO and INCB have repeatedly called on countries to ensure the adequate availability of opioid analgesics for patients who need them. To improve access, WHO recommends that countries adopt a “medicines policy” to ensure the “availability of essential medicines for the management of symptoms … and, in particular, opioid analgesics for relief of pain and respiratory distress.”[58]

International human rights standards to which Guatemala is a party have been interpreted as requiring that countries ensure the availability and accessibility of opioid analgesics included in the WHO Model List of Essential Medicines. The UN Committee on Economic, Social and Cultural Rights maintains that providing essential medicines as determined by WHO is a core obligation that cannot be limited by claims of limited resources.[59]

Because opioid analgesics are controlled substances, countries are obligated to regulate how they can be produced, distributed, prescribed, and dispensed. The 1961 Single Convention on Narcotic Drugs (1961 Convention), the international agreement that provides the framework for national drug control efforts, contains four basic requirements for national regulations of controlled medicines:

  • Individuals dispensing the medication must be licensed, either by virtue of their professional license or through a special licensing procedure;
  • Medications may only be transferred between authorized institutions or persons;
  • Medications can only be dispensed to a patient upon a medical prescription; and
  • Records on the movement of the medications are kept for no less than two years.[60]

The 1961 Convention specifically allows countries to put in place additional requirements, including a special prescription form for controlled medications. Countries, however, have a dual obligation with respects to these medicines: they must ensure their adequate availability for medical and scientific use while preventing their misuse and diversion.[61]

Countries should take care that any requirements beyond those specified in the 1961 Convention do not unnecessarily impede medical access.[62] As WHO notes:

[I]t is important to analyze the effects of any stricter rules…. If a rule provides a barrier for availability and accessibility, but does not contribute to the prevention of abuse … [it should be] eliminated or changed. In the case where a rule both contributes to prevention and constitutes a barrier for medical use…, alternative ways of providing the same level of prevention without posing a barrier to rational medical use should be explored.[63]

Guatemala’s Regulatory Framework

Data on the use of opioid analgesics show that a major gap in the treatment of moderate to severe pain in Guatemala. The INCB classifies Guatemala as having “very inadequate” opioid availability.[64]

The latest available data indicates that Guatemala consumes an annual amount of morphine sufficient to treat approximately 3,000 patients with terminal cancer or AIDS per year—around 35 percent of people with those illnesses who need it.[65] This estimate does not take into account the morphine needs of people with pain that is due to illnesses such as heart and lung disease or diabetes. Given that morphine is also used to treat pain caused by trauma and surgery, a considerable proportion of the morphine Guatemala consumes is not actually used in palliative care.

Human Rights Watch’s analysis of Guatemala’s drug control regulations and practices shows that they go far beyond the requirements of the 1961 Convention and create significant barriers to prescribing and dispensing opioids to outpatients. The most problematic aspects of the regulatory system are the requirements that:

  • Doctors need a special prescription pad to prescribe an opioid analgesic. These contain just 25 scripts; can only be purchased at one location in the country, one pad at a time; and physicians must pay for them and produce a receipt from a specific bank showing payment. A new pad can only be issued once the previous one has been returned. The logistic burden these requirements create is a barrier to the use of these medicines.
  • Patients who need an opioid analgesic for more than eight days—most patients with advanced life-limiting illness—require a second prescription form, referred to as a dictamen. The physician must provide additional details on this, including the amount of medication the patient needs on a daily, weekly, and monthly basis. This requirement is of no real use and impedes physicians’ ability to adjust dosage when a patient’s pain worsens, which is common. The dictamen also requires a special stamp—timbre medico—that physicians have to buy at the College of Surgeons and Medical Doctors in Guatemala City, another logistical barrier.
  • Patients must usually get the Ministry of Health to authorize a prescription before a pharmacy can dispense medications. This can be done at only one location in the country, in Guatemala City, and in person. Theoretically, pharmacies outside Guatemala City have an exemption from this procedure, although none currently use it.

Guatemala’s Regulations on Opioid Analgesics

Guatemala’s regulatory regime is complex, containing numerous rules and exceptions. These rules are outlined in the following regulatory documents:

  • Government Agreement No. 712-99: outlines basic structure of regulatory process.
  • Ministry of Health Regulation 16-2002: regulates process for obtaining a special prescription pad and circumstances under which a dictamen is required.
  • Ministry of Health Regulation 17-2002: regulates process for government authorization of patient’s prescriptions.
  • Ministry of Health Regulation 22-2001: regulates process for dispensing opioids, among other things.

Special Prescription Pads

None of the doctors outside Guatemala City have special prescription forms. It’s a lot of work to get it. They would have to come to Guatemala City and would lose a full day of work.

—Dr. Maria Elena Alcantara, private palliative care physician, Guatemala City, July 2015[66]

Under Guatemalan regulation, doctors must prescribe opioids on special prescription forms.[67] While the 1961 Convention specifically allows countries to require their use, WHO has noted that requiring special prescription forms increases the administrative burden for health care workers and drug control authorities.[68] It has stated that this problem is “compounded if forms are not readily available, or if health professionals need to pay for them.”[69] It recommends that countries “ensure that this system does not impede the availability and accessibility of controlled medicines.”[70]

In Guatemala, obtaining a special prescription pad is complex and time-consuming. First, prescription pads can only be obtained at a single office in the entire country: the office of the Department of Regulation and Control of Pharmaceutical Products and Related Products, located in Guatemala City (Department of Regulation). The doctor, or their representative, must come to the office in person. It is not possible to request or receive the prescription pad by mail or electronically.

Furthermore, doctors must pay for the prescription pads, which cannot be done at the office that issues them. Instead, physicians must make a payment—of GTQ30 (US$3.89)—at the Rural Development Bank into the Department of Regulation’s account, a requirement that adds additional time and expense to the process.[71] The physician, or their representative, must provide a deposit receipt as proof of payment. Finally, the physician must provide a sheet of paper with four signatures and four imprints of their professional seal, which is apparently used to verify the applicant’s identity.[72]

Compounding the burdensome nature of this process, special prescription pads contain only 25 scripts. Thus, physicians who see large numbers of palliative care patients have to go through this process frequently. In Guatemala City, some pharmaceutical companies and pharmacies help physicians with the logistical process, such as submitting paperwork and collecting the prescription pads.

Problematically, a physician can have only one special prescription pad at a time. Authorities may only issue a new booklet when all the scripts of the previous pad have been used and returned to it. As a result, physicians are left without prescriptions while arranging to get a new pad.

The prescription pad requirement is a major obstacle to patient access to opioid analgesics. According to the Department of Regulation, which is charged with issuing prescription pads, only 50 to 60 doctors out of 14,287 doctors in Guatemala have them.[73] No doctor living outside Guatemala City has a special prescription pad.[74] Similarly, few pharmacies carry opioid analgesics: Human Rights Watch could only identify three in Guatemala City. Given that no doctors have prescription privileges outside Guatemala City, it is likely that access to pharmacies that dispense opioids is even more limited in other departments.[75]

Morocco: Reducing Regulatory Barriers to Obtaining a Special Prescription Pad

Moroccan law also requires that prescriptions for opioids are written on special prescription pads. However, unlike in Guatemala, the government has taken a number of key steps to minimize the burden on physicians of this requirement.[76] Physicians and hospital administrators can apply for the special prescription pad by mail rather than having to go in person. The Ministry of Health can issue two prescription pads at a time, each containing 50 scrips, which significantly reduces the risk of a physician being left without prescription forms during the application process.[77] Finally, physicians in public hospitals in Morocco do not have to pay for the special prescription forms.

Dictamen: Additional Prescription Form

By regulation, certain prescriptions of opioid analgesics require an additional form: the so-called dictamen.[78] This form is mandated when opioid analgesics are prescribed for longer than eight days or when the patient is considered to be “habituated to the use of narcotic drugs.”[79] As palliative care patients often need opioid analgesics for more than eight days, the additional form is required frequently.

This requirement is highly unusual, especially given that Guatemala already requires a special prescription form. The dictamen, downloadable from the website of the Ministry of Health’s drug control office, requires the physician to provide information on the patient in addition to that which is required on the special prescription form, including the commercial name and presentation of the medication and its daily, weekly, and monthly dosage.

As pain levels often change rapidly in palliative care patients, the requirement to indicate dosage on a weekly and monthly basis makes little clinical or practical sense.[80] A physician told us it forces doctors to write fictional dosages on the dictamen in order to maintain flexibility to make adjustments as needed.[81]

A system that forces physicians to write prescriptions that do not correspond to the actual dosage needed for the patient is problematic, especially as it can lead to confusion among patients and their families regarding the instructed dosage. It may also lead to larger amounts of opioid analgesics left over in people’s homes after patients pass away.

The dictamen also requires a so-called timbre medico, a kind of postage stamp that is used to confirm that an official document, such as a death certificate, is issued by a physician. Physicians must buy the timbre medico at the College of Medical Doctors and Surgeons in Guatemala City or in one of the provinces where it has an office at a cost of GTQ5 (US$0.65) each.

The dictamen requirement creates extra work for physicians, which may further deter them from prescribing these medicines. Physicians and officials in Guatemala told Human Rights Watch that dictamenes are simply filed away and that they were not aware of any way in which they have been used to improve clinical practice or reduce the risk of misuse of opioid analgesics.

Government officials told Human Rights Watch that the dictamen was part of Guatemala’s regulations aimed at prevention abuse of opioid medications but could not explain exactly how the dictamen helped achieve that goal.[82] In its research on palliative care, which spans dozens of countries, Human Rights Watch has never encountered this kind of requirement.

Government Authorization of Prescriptions

The patients are literally dying and in pain. I can’t send them to the [Department of Regulation] on a bus. I feel responsible to continue [dispensing] to them.

— Pharmacist who dispenses opioid analgesics without validation of the prescription form, Guatemala City, December 2014[83]

Guatemala’s regulations also require that prescriptions for opioid medications receive government authorization from the Department of Regulation before they are dispensed.[84] In practice, this means that before purchasing medications from a private pharmacy in Guatemala City, patients, or their representatives, must have the prescription authorized in-person at an office of the department.[85] This can only be done at one office in the country. At this office, patients must present their prescription, which is then reviewed and authorized. The regulation provides no guidance or limitations as to when the department staff may decline to authorize a prescription.[86] Officials told us that there are no internal documents that instruct staff on criteria to authorize or reject prescriptions.[87]

For prescriptions not requiring a dictamen, patients’ prescriptions are simply stamped and signed.[88] If a dictamen is required, patients receive a card with a patient identification number.[89] This must be written on all subsequent prescriptions in order for them to be authorized.

This system creates an obstacle for patients and families, many of whom have already traveled for hours to visit a doctor. They must travel to the Department of Regulation’s office after receiving the prescription, a trip that frequently involves long rides on public transport. For patients who do not know Guatemala City, additional expense and time are not the only challenges. As one palliative care physician noted:

Many of the people who come here, they don’t know the area. They can’t navigate to the office and then back to the hospital. Sometimes they are afraid. They don’t know how to take the bus; they don’t have a car. Sometimes the patients can’t even speak Spanish [but only indigenous languages]. [90] 

When authorization is refused, patients or family members have to obtain a new prescription from their physician and attempt to receive authorization again. Officials insisted to Human Rights Watch that they refuse authorizations infrequently and mostly due to clerical errors, such as forgetting to apply the professional stamp to a dictamen.[91]

Palliative care physicians, however, told Human Rights Watch that it is not uncommon for prescriptions to be rejected and that some are rejected because of the high dose or medication prescribed.[92] Officials insisted they do not second-guess doctors’ clinical decision.[93] Human Rights Watch was unable to determine how frequently authorization is refused as the government does not track refusals. We were also unable to review any rejected prescriptions to determine whether any were rejected based on clinical criteria.

Guatemala’s regulations contain an exception to the above rule: private pharmacies outside Guatemala City may fill prescriptions without government authorization and submit monthly reports to the Department of Regulation for approval in lieu of authorization of individual prescriptions.[94]In theory, this means patients who live outside the capital can avoid the authorization process. But officials told Human Rights Watch that no pharmacies outside Guatemala City stock opioid analgesics and that this exception has never been used.[95]

Analysis of the regulations shows that details of how this exception would work in practice are ill-defined. For example, it is not clear exactly what would happen if a prescription was rejected after it was dispensed. A Department of Regulation representative said the department would take disciplinary action against the pharmacy in such case.[96] Lacking clear guidance, pharmacies might be justifiably concerned about undertaking this responsibility: a pharmacist could face up to 20 years in prison for illegally supplying opioid analgesics.[97]

A new July 2015 instruction from the Ministry of Health’s Office of Food and Medicines further complicates the process. While in the past a representative of a patient—such as family member or pharmaceutical representative—could simply take the prescription form to the Ministry of Health to be authorized, prescriptions can now only be authorized if the individual has a letter that designates them as the patient’s representative. The letter must contain the full name of the patient, a copy of the ID card and its number. If the representative works for a pharmaceutical company, the letter must be printed on letterhead paper and stamped and signed by an authorized official.[98]

Guatemala’s authorization requirement is highly unusual and creates an enormous obstacle for patient access to opioid analgesics. In the vast majority of countries around the world, including Central American countries like Costa Rica, Mexico, and Panama, a doctor’s prescription for an opioid medication can generally be filled at the pharmacy without further authorization.[99]

Since records on prescribing and dispensing must be kept for at least two years, authorities already have the opportunity to inspect physicians’ prescribing practices and dispensing. Authorities are therefore already in a position to take corrective steps against physicians or pharmacists who are found to violate prescribing and dispensing rules.

Regulatory Reform in Mexico

In June 2015, Mexico’s Ministry of Health launched an electronic platform that allows physicians to download special prescription forms online. The system was designed to reduce the regulatory burden of prescribing opioids.[100] Mexico’s regulation require physicians to obtain a special license, special prescription forms, and barcoded stickers in order to prescribe opioids.

Prior to the launch, the process for obtaining barcoded stickers, which required physicians to travel to state capitals in person to collect them, was a major barrier to accessing opioids.[101]

The new electronic system lets physicians can obtain their special license—as well as special prescription forms with barcoded stickers—from a secure website and print them from any computer. Pharmacists will keep electronic record books, which are expected to reduce the bureaucratic burden. Finally, prescriptions are canceled once a pharmacist scans them, preventing patients from re-using a prescription.

The new system has a number of benefits:

  • It reduces the regulatory burden on physicians. Physicians no longer have to travel to their state capital to obtain a prescription license and barcoded stickers, removing major disincentives to prescribing opioid analgesics;
  • It improves the ability of authorities to monitor the use of opioid analgesics and identify potential cases of misuse. The regulatory authority has instant access to key information about prescriptions dispensed. The information is stored electronically, making it easier to mine for irregularities. Prior to the reforms, regulators had to audit physical records of prescriptions kept by pharmacies to investigate irregularities; and
  • It decreases regulatory costs. Overseeing a complex regulatory system, which requires the physical distribution of licenses, prescriptions pads, and barcodes, is costly. While reducing the regulatory burden and increasing control, the new system is projected to significantly reduce regulatory costs.[102]

Prescription Requirements for Hospitalized Patients

The above regulations only apply to outpatients. For patients who are hospitalized, hospital pharmacies can develop their own internal policies that guide prescribing and dispensing opioid analgesics.[103]

Physicians told Human Rights Watch that these internal policies can vary greatly from hospital to hospital, with some preventing and others facilitating use of these medications.

Examples of problematic internal procedures include the requirement that health care workers return empty ampoules of morphine to the pharmacy before they can get more (which can delay the initiation of treatment for patients in severe pain), or the requirement for multiple signatures on an internal prescription for opioid analgesics before the medication can be issued.[104]

These requirements go beyond what is required under international drug control treaties and may deter the proper medical use of opioid analgesics. Some hospital pharmacies also impose arbitrary limitations on the number of ampoules the hospital pharmacy will dispense for a hospitalized patient per day, regardless of their condition or need.[105]

While internal hospital pharmacies generally do not supply medications to patients who are not hospitalized, the internal regulations of four public or government-supported hospitals currently allow them to dispense opioid analgesics to outpatients, an arrangement that palliative care physicians at these hospital use extensively. This allows them to circumvent the above-mentioned prescribing and dispensing regulations for opioid analgesics, as the medications can be given to patients without a special prescription form, dictamen, or government authorization.[106]

For example, in 2014 Roosevelt Hospital’s pharmacy adapted its internal policies to permit the dispensing of oral opioids analgesics to out-patients. Prescriptions must be written on an internal controlled substance prescription pads, which is readily available to a select group of physicians whom the hospital approves to prescribe these medications.[107] With these prescriptions, patients can get their medications from the internal hospital pharmacy without needing a dictamen or government authorization.

The National Cancer Institute (NCI) uses a similar procedure. Dr. Victor Samayoa, head of the palliative care unit at the NCI, explained what a difference it makes for patients:

When I first came to NCI, it was a shock. In 10 minutes, the patient receives his medication. [If we had to follow the regulations] it would be chaos…. Most of the patients who come here live far away. I just had a patient who traveled nine hours to get here. It is not possible to adequately treat these patients if we had to follow the regulations.[108]

However, as providing outpatients with medications from hospital pharmacies is very unusual, most hospitals in Guatemala do not allow their internal pharmacies to dispense opioid analgesics for outpatients. These hospitals, including San Juan de Dios General Hospital, a major tertiary level hospital in Guatemala City, stick to the established practice that outpatients must purchase their medications from private pharmacies.[109]

Colombia: More Pharmacies Carry Oral Opioids

A dearth of pharmacies stocking oral morphine is a major challenge in many countries. Administrative requirements, low demand, concerns about potential misuse or diversion, and the potential for scrutiny from law enforcement deter many pharmacy owners from stocking it.

Several have actively tried to address this issue. In Colombia, for example, intensive engagement between the government, NGOs, and academics led to a revised regulation for regional medicines procurement in 2008. Under that regulation, all 32 Colombian states have to have at least one private or public pharmacy where opioids are guaranteed to be in stock at all times.[110] This commitment to opioid availability was solidified in article 8 of Colombia’s recently passed palliative care law.[111] Following these and other efforts to increase access to palliative care in Colombia, opioid consumption has increased dramatically. Between 2006 and 2012, the government reported a 270 percent rise in opioid consumption.[112]

***

Should I Follow the Regulations? An Ethical Dilemma for Doctors and Pharmacists

For us, there’s no choice [but to circumvent the regulations]. We’re in front of the patients. What else can we do but help.

—Palliative care physician, Guatemala City, December 2014[113]

Guatemala’s excessively restrictive opioid regulations create an acute ethical dilemma for some physicians who prescribe these medicines and for pharmacists: they cannot offer proper care to patients, as required by their professional oath, without stretching or breaking the law, exposing themselves to potential disciplinary or criminal penalties.

We learned of a number of different ways in which physicians and pharmacists push the boundaries of the law to make sure their patients can get the pain treatment they need:[114]

  • Pharmacists dispensing opioids prior to authorization. We found that some pharmacists agree to fill prescriptions for opioid medications without the authorization stamp.[115] In such cases, they send a courier afterwards to the authorization office. This practice is not consistent with Guatemala’s regulations and a pharmacist could potentially face disciplinary sanctions if authorization is refused for a prescription that has already been filled.
  • Reusing returned opioid analgesics. Families often have opioid analgesics left over when their loved ones die. Some physicians will accept these medications and provide them to other patients, bypassing the official prescription process and sparing families the need to get the prescription authorized. This practice is not legal under current regulations.
  • Buying opioid analgesics on the black market. Some patients and physicians said it was easier to buy opioid analgesics on the black market than to get and fill a prescription. One doctor from a town far from Guatemala City told us that obtaining opioid medications legally is practically impossible for patients from their town. This doctor recommends patients to get them on the black market.

Regulations that force health care workers to choose between providing proper care—fulfilling their ethical duty—and breaking the law are obviously problematic. No health care worker should have to risk jail time in order to prescribe essential medications. Moreover, the above-mentioned ways in which health care workers, pharmacists, and patients get around official requirements undermine the very purpose of the regulations: to establish a clear procedure for prescribing these medicines that prevents their diversion and misuse and allows the government to investigate such incidents.

Legal Sanction for Violations of Prescribing Regulations

Guatemala’s regulations and criminal law provide for potentially harsh legal sanction for physicians and pharmacists who violate regulatory requirements. In fact, the country’s drug regulations are so complex that they make it difficult for even the most attentive doctor or pharmacist to be able to comply with them. Regulations frequently mention potential criminal penalties that may result from regulatory violations.

Violations of drug regulations would likely fall under articles 38 and 44 of Guatemala’s drug trafficking law, which states:

Article 38: Anyone who without lawful authorization acquires, disposes of in whatsoever manner, imports, exports, stores, transports, distributes, supplies, sells, retails or carries on any other activity connected with the trafficking in seeds, leaves, plants, flowers or substances or products classified as narcotic or psychotropic substances or drugs or precursors shall be punished by a term of imprisonment of between 12 and 20 years and a fine of between GTQ50,000 (roughly US$6,642) and GTQ1,000,000 (roughly $132,846). Anyone who provides the means, or who facilitates or permits the landing of aircraft used for illicit trafficking, shall be liable to the same punishment.

Article 44: Any physician who, in breach of the relevant laws or regulations, prescribes or supplies drugs that require a prescription when they are not indicated for treatment purposes shall be punished by a term of imprisonment of between three and five years, a fine of between GTQ200 (roughly $27) and GTQ10,000 (roughly $1328) and disqualification from carrying on his profession, which additional punishment may not exceed the duration of the custodial punishment.[116]

Violations of this article are punishable by three to five-year prison sentence.[117] The penalty for illegally supplying narcotic drugs is 12 to 20 years in prison and a GTQ50,000 to GTQ1,000,000 ($6,642 to $132,846) fine.[118]

Guatemala’s regulations may leave physicians and pharmacists potentially exposed to legal sanctions. For example, the regulations state:

Establishments that sell narcotic drugs … shall release these drugs only when the prescriptions forms are from the official prescription form book and authorized by the Department [of Regulation]. Otherwise, the release of these drugs will be regarded as illegally supplying narcotic drugs and will be penalized as such.[119]

This article suggests that filling prescriptions before government authorization—whether in Guatemala City or outside—could trigger drug trafficking charges.

The regulations also suggest that clinical decisions about the dosage or types of medications prescribed could lead to criminal punishment even in the absence of evidence that a physician deliberately wrote a prescription for an opioid analgesic to someone who did not have a medical need for one:

In the event that there is not sufficient scientific evidence for use and the dose used, the prescriber must answer to the Department [of Regulation], without prejudice to the penalties that may apply as a result of the crime or offense.[120]

While we did not identify any physicians who had faced investigations or punishment under this provision, WHO identifies fear of potential legal sanction as a key reason for the low consumption of opioid medications in some countries.[121] To combat this, it recommends that countries have clear regulations and proportional sanctions so that doctors do not fear punishments for unintended or technical violations of the law.[122]

Availability of Different Formulations of Opioid Analgesics

The WHO Model List of Essential Medicines contains a section on pain and palliative care that includes a total of 20 medications in three categories: non-opioids and non-steroidal anti-inflammatory medicines; opioid analgesics; and medicines for other common symptoms in palliative care patients.

The list includes morphine in five formulations—granules, injection, oral liquid, tablet (slow release), and tablet (immediate release)—often with multiple dosages at each formulation. WHO recommends that these medicines be available to all who need them in the formulations and dosages indicated on the list.[123]

The most basic form of morphine WHO recommends is instant release oral morphine in 10mg tablets. Yet, the only form of immediate release morphine available in Guatemala are 30mg capsules, a dosage that creates clinical challenges that would not arise if 10mg tablets were available, including:[124]

  • Difficulty breaking capsules into smaller doses for patients requiring 5 mg or 10 mg;
  • Physicians normally instruct patients to treat breakthrough pain—peaks in pain that are not adequately controlled with the normal dose prescribed—to take a small extra dose, which is difficult with 30 mg capsules.[125]

Moreover, health care workers are not supposed to prepare new formulations from morphine tablets, such as morphine syrup.[126] However, for patients who cannot swallow, that may be the only option to give them their medication.

WHO recommends that countries having multiple formulations and dosages of morphine available to physicians to give them flexibility to tailor their treatment. Oral liquid morphine, for example, is critical for patients who have trouble swallowing or have uncontrollable nausea, both common in palliative care patients. Oral solutions are also essential for many young children.

Guatemala has two medicines’ lists—one for Ministry of Health hospitals, one for social security hospitals—from which their facilities can choose to procure medications.[127] There are several important differences between these lists:

  • Immediate release morphine—the most basic and lowest cost formulation— is not included on either list;
  • Granules and oral liquid morphine, both important for patients who have trouble swallowing and for pediatric patients, are not included on the lists; and
  • On the social security list, slow-release morphine and injectable morphine are exclusively available for hematology, oncology, intensive care, and emergencies. Yet, over 60 percent of people in need of pain treatment in Guatemala have a chronic illness other than cancer.[128]

In 2012, the National Commission on Palliative Care presented the Ministry of Health’s narcotics division with a proposal to modify regulation 16-2002, under which prescription forms would be pre-authorized so that patients would be able to fill them without having to validate them. However, the ministry never responded to the proposal.

Barriers to Developing Palliative Care

WHO and its decision-making body, the World Health Assembly (WHA), recommend that national health systems integrate palliative care. To achieve this, WHO recommends that governments formulate and implement a number of specific policies that it considers essential for expanding palliative care, in addition to a policy to ensure availability of palliative care medicines. These include:

  • Health system policies to ensure palliative care is integrated into the structure and financing of national health care systems at all levels of care;
  • Policies for strengthening and expanding human resources, including education and training of health care professionals to ensure adequate responses to palliative care needs, together with training volunteers and educating the public.[129]

WHO has noted that such measures, fundamental for developing palliative care, “cost very little but can have a significant effect.”[130] A WHA resolution on palliative care, a document that sets out the global consensus and policy goals, unanimously adopted by UN member states on May 23, 2014, closely mirrors these recommendations.[131]

Adherence to these recommendations is important to governments’ efforts to realize the right to health as guaranteed under international human rights law. The Committee on Economic, Social and Cultural Rights—the body that monitors and guides states’ efforts to realize and protect the right to health as articulated in the International Covenant on Economic, Social and Cultural Rights (ICESCR)—maintains that countries should adopt and implement a national public health strategy and plan of action and ensure access to essential medicines as defined by WHO.[132] It has identified providing appropriate training for health personnel as an obligation “of comparable priority.”[133] Human Rights Watch believes that failure to take steps in these areas results in violating the right to health.

Integrating Palliative Care into the Health Care System

According to WHO, national health system policies should promote the integration of palliative care into the structure of health care systems at all levels of care. In these policies, the emphasis should be on primary, community, and home-based care.[134]

Guatemala does not have a national palliative care strategy although it has incorporated palliative care into several key health policy documents (see below). While the non-communicable diseases (NCD) strategy for 2010-2015 does not mention palliative care, the government’s NCD treatment guide states: “palliative treatment is a most important parameter in the treatment of cancer and can be provided in health services of the first and second level.”[135] The national HIV/AIDS strategy allocates 1 percent of the HIV budget to palliative care.[136] A 2014 Ministry of Health guide on prevention and integral care for cervical cancer contains a chapter on palliative care.[137]

In December 16, 2011, the Ministry of Health issued an order to create a National Commission on Palliative Care to advise the national program on the prevention of non-communicable diseases and cancer on improving health care provision to patients with advanced cancer.

The commission was supposed to meet at least monthly to, among other things, promote the availability of opioid analgesics; develop public policies aimed at implementing palliative care services; develop epidemiological surveillance tools; and coordinate training activities for health care providers and families. However, the commission’s work was fraught with difficulties. After a few months, Ministry of Health officials stopped calling monthly meetings and the commission died.[138]

Panama: Integrating Palliative Care into the Health Care System

Panamanian law grants patients a right to receive palliative care, requires that all hospitals have palliative care units, and places responsibility on primary health centers for providing palliative care to patients who require it over extended periods.[139] In 2011, Panama’s Health Ministry adopted a national palliative care strategy to help implement the law.[140]

The philosophy behind the strategy is that patients should always receive care as close to home as possible. It sets out a model that links different levels of the health care system so that patients can move easily between them depending on their situation.

A key role in this model is assigned to Panama’s regional hospitals, all of which must have multidisciplinary palliative care teams. These teams not only offer clinical care but are also responsible for training health care workers at the primary level of care; offering them ongoing support in patient care; and working with NGOs, churches and others, to develop community support for palliative care. The multidisciplinary teams are also the link between the different levels of care, facilitating referrals up and down the chain.

Panama has made significant progress in implementing this strategy. Each of the country’s 10 provinces has a palliative care coordinator, more than half of the regions have active palliative care programs, and the number of patients receiving palliative care has risen steadily from 1,000 in 2010 to more than 2,600 in 2015. Even so, challenges remain, especially in remote regions, within the social security system, and in providing palliative care to children.[141]

Palliative Care Education for Health Care Workers

Adequate training and education for health care workers are essential for providing palliative care.[142] Indeed, in many countries a lack of such training is the single greatest barrier to its provision.

The Committee on Economic, Social and Cultural Rights considers appropriate training of health care workers a matter of key importance in government efforts to ensure the right to health.[143] WHO recommends that “education about palliative care (including ethical aspects) is offered to students in undergraduate medical and nursing schools and to health care providers at all levels….”[144]

The May 2014 WHA resolution calls on countries to include palliative care as an “integral component of the ongoing education and training offered to care providers” and specifies that:

  • All doctors should receive basic training and continuing education on palliative care;
  • Health care workers who routinely work with patients with life-threatening illnesses should receive intermediate training; and
  • Specialty training should be available for doctors who provide complex palliative care interventions.[145]

This layered approach to palliative care education is essential to integrating palliative care across all levels of the health care system, as the WHA resolution recommends. A health care system in which all health care workers have training in palliative care appropriate for their role allows patients to receive care as close to home as possible, sparing them arduous, expensive, and time-consuming trips to specialists. It also allows specialists to focus on the most complex cases while general practitioners can attend to routine ones, thus improving the efficiency of the system.[146]

Guatemala has four universities with medical schools.[147] Only one, Mariano Galvez University, has a mandatory undergraduate curriculum in palliative care.[148] San Carlos University, the country’s largest and only public medical school, does not have palliative care as part of its curriculum.[149] As a result, most physicians graduating from medical school in Guatemala have no or limited knowledge of palliative care and lack clinical exposure to this health service, greatly complicating efforts to integrate it into the health care system.

Similarly, most medical students and doctors are not exposed to palliative care during residencies and in the specialization phase of their training. With the exception of anesthesiologists, physicians in fields of medicine that frequently care for patients with life-limiting illnesses—such as oncology, internal medicine, and cardiology—do not receive any mandatory academic or clinical training in palliative care. Anesthesiology residents from San Juan de Dios Hospital, Roosevelt Hospital, and the Central Military Hospital all must take part in a one to two-month clinical rotation in palliative care at the Cancer Institute of Guatemala’s palliative care unit. Physicians doing their anesthesiology specialization in hospitals outside Guatemala City do not do a palliative care rotation.

In the absence of these rotations, many doctors in Guatemala begin their careers with very limited exposure to palliative care. As one physician who was taking part in a palliative care rotation noted:

[T]he program is essential. In my hospital we don’t use opioids to manage pain. We just use them during surgery [for anesthesia]. We don’t know what happens to patients afterwards. When you come here, you learn how to manage pain.[150]

Palliative care is also not a medical specialty in Guatemala, meaning young physicians who aspire to practice it must look outside the country for training. Between 2012 and 2014, San Carlos University offered the educational opportunity closest to a medical specialty in palliative care available in Guatemala: a post-graduate diploma. The program consisted of 350 hours of theoretical training in palliative care and graduated 70 students during the two years it was offered.[151] However, a new university administrator decided not to renew the program in 2015 because she did not consider it a priority.[152]

IV. Guatemala’s Obligation to Improve Pain Treatment

National Law

Guatemala’s constitution guarantees the right to health in article 93, declaring it a fundamental right afforded to all Guatemalans, without discrimination.[153] Article 94 elaborates:

The State will see to the health and the social assistance of all the inhabitants. It will develop, through its institutions, actions of prevention, promotion, recovery, [and] rehabilitation … in order to procure [for them] the most complete physical, mental, and social wellbeing.[154]

The constitution also explicitly recognizes a state responsibility to protect the “physical, mental, and moral health of older people.[155]

Interpreting the right to health, Guatemala’s Constitutional Court stated:

[The right] implies that all persons have access to those services that allow for the maintenance or the restoration of physical … well-being [and] that the State must take adequate measures in order to … make the necessary services … to satisfy basic needs accessible to all persons. It also implies that adequate legislation be adopted so that the nation’s inhabitants are able to exercise this right.

The protection of the public health is meant to be undertaken through the direct and decisive action of the State.[156]

As part of the Guatemala Peace Agreement, which formally ended 36 years of internal armed conflict in 1996, the government promised to undertake a number of reforms aimed at ensuring the effective exercise of the right to health.[157] The agreement states:

[It is a responsibility] of the Ministry of Health … to formulate policies to provide the entire Guatemalan population with integrated health services…. The system would create the conditions for ensuring that the low-income population has effective access to quality health services…. The decentralized organization of the various levels of health care should ensure that health programmes and services are offered at the community, regional and national levels.

The Right to Health

The International Covenant on Economic Social and Cultural Rights (ICESCR), to which Guatemala acceded in 1988, specifies in article 12 that everyone has a right “to the enjoyment of the highest attainable standard of physical and mental health.”[158] The Committee on Economic, Social and Cultural Rights, the body charged with monitoring compliance with the ICESCR, maintains that states must make available in sufficient quantity “functioning public health and health-care facilities, goods and services, as well as programmes,” and that these services must be accessible.[159]

International law recognizes that the capacity of states to deliver quality health care services differs depending on the resources at their disposal. The right to health is considered a right of “progressive realization.” By becoming party to the international agreements, a state agrees “to take steps … to the maximum of its available resources” to achieve the full realization of the right to health.[160]

In other words, high-income countries will generally have to provide health care services at a higher level than those with more limited resources, because they have the capacity to do so. But all state parties to the ICESCR are expected to prioritize progress in this area and to take concrete steps toward the increased provision of services. Deliberate, retrogressive measures that erode enjoyment of the right to health are often a violation of the right to health—one that the state in question bears the burden of justifying.[161]

Notably, the United Nations Committee on Economic, Social and Cultural Rights maintains that there are certain core obligations intrinsic to the right to health that are so fundamental that all state parties to the ICESR must meet them immediately rather than progressively realizing them over time. While resource constraints may justify only partial fulfillment of some aspects of the right to health, the committee has observed vis-à-vis the core obligations that “a State party cannot, under any circumstances whatsoever, justify its non-compliance with the core obligations…, which are non-derogable.”[162] The committee has identified, among others, the following core obligations:

  • To ensure the right of access to health facilities, goods and services on a non-discriminatory basis, especially for vulnerable or marginalized groups;
  • To provide essential drugs, as from time to time defined under the WHO Action Programme on Essential Drugs;
  • To ensure equitable distribution of all health facilities, goods and services; and
  • To adopt and implement a national public health strategy and plan of action,  based on epidemiological evidence, addressing the health concerns of the whole population.[163]

The committee lists the obligation to provide appropriate training to health personnel as an “obligation of comparable priority.”[164]

Palliative Care and the Right to Health

Given that palliative care is an essential part of health care, the right to health requires that countries take steps to the maximum of their available resources to ensure that it is available. Indeed, the Committee on Economic, Social and Cultural Rights has called for “attention and care for chronically and terminally ill persons, sparing them avoidable pain and enabling them to die with dignity.”[165] In Human Rights Watch’s view, the practical application of this principle requires that states:

  • Refrain from enacting policies or undertaking actions that arbitrarily interfere with providing or developing palliative care; and
  • Take reasonable steps to ensure the integration of palliative care into existing health services, both public and private, through regulatory and other powers, as well as funding streams.

No Interference with Palliative Care

The Committee on Economic, Social and Cultural Rights has stipulated that the right to health requires that states “refrain from interfering directly or indirectly with the enjoyment of the right to health.”[166] States may not deny or limit equal access for all persons, enforce discriminatory health policies, arbitrarily impede existing health services, or limit access to information about health.[167]

Applied to palliative care, this interpretation means that ICESCR state parties should not put in place medicine control regulations that arbitrarily impede the availability and accessibility of essential palliative care medications, such as morphine and other opioid analgesics.

Ensuring Integration of Palliative Care into Health Services

The ICESCR requires state parties to take the steps necessary for the “creation of conditions which would assure to all medical service and medical attention in the event of sickness.”[168] The Committee on Economic, Social and Cultural Rights maintains that people are entitled to a “system of health protection which provides equality of opportunity for people to enjoy the highest attainable level of health,” including patients with chronic or terminal illnesses.[169]

The committee has called for an integrated approach to the provision of different types of health services that includes elements of “preventive, curative and rehabilitative health treatment.”[170] It has also said that investments should not disproportionately favor expensive curative health services, which are often accessible only to a small, privileged fraction of the population, rather than primary and preventive health care benefiting a far larger part of the population.[171]

The same principle applies to palliative care services. Given the large percentage of cancer and other patients who require palliative care services, particularly in low and middle income countries, there is considerable urgency in developing palliative care services to these patients.

Pain Treatment Medication and the Right to Health

Countries should provide injectable and oral morphine since they are on the WHO List of Essential Medicines for adults and for children.[172] States should make sure these medicines are both available in adequate quantities, and physically and financially accessible to those who need them.

In order to ensure availability and accessibility, states should, among others things:

  • Put in place regulations to ensure an effective procurement and distribution system and create a legal and regulatory framework that enables health care providers in both the public and private sector to obtain, prescribe, and dispense these medications. Any regulations that arbitrarily impede the procurement and dispensing of these medications may lead to a violation of the right to health;
  • Adopt and implement a strategy and plan of action for the roll out of pain treatment and palliative care services. Such strategy and plan of action should identify obstacles to improved services as well as steps to eliminate them;
  • Regularly measure progress in ensuring availability and accessibility of pain relief medications; and
  • Ensure that, per the requirement of physical accessibility, these medications are “within safe physical reach for all sections of the population, especially vulnerable or marginalized groups.”[173] States must ensure that enough health care providers or pharmacies stock and dispense morphine and that an adequate number of health care workers are trained and authorized to prescribe these medications.

Although the right to health does not require that states offer medications for free, financial accessibility means that medications should be “affordable for all.” In the words of the committee:

Payment for health-care services … has to be based on the principle of equity, ensuing that these services, whether privately or publicly provided, are affordable to all, including socially disadvantaged groups. Equity demands that poorer households should not be disproportionately burdened with health expenses as compared to richer households.[174]

Pain Treatment and the Right to Be Free from Cruel, Inhuman, or Degrading Treatment

The right to be free from torture, cruel, inhuman, or degrading treatment or punishment is a fundamental human right that numerous international human rights instruments recognize.[175] The right also creates a positive obligation for states to protect persons in their jurisdiction from such treatment.[176]

This obligation has been interpreted to include protecting people from unnecessary pain related to a health condition. As Manfred Nowak, then-UN special rapporteur on torture, cruel, inhuman or degrading treatment or punishment wrote in a joint letter with the UN special rapporteur on the right to health to the Commission on Narcotic Drugs in December 2008:

Governments also have an obligation to take measures to protect people under their jurisdiction from inhuman and degrading treatment. Failure of governments to take reasonable measures to ensure accessibility of pain treatment, which leaves millions of people to suffer needlessly from severe and often prolonged pain, raises questions whether they have adequately discharged this obligation.[177]

In a report to the Human Rights Council, Nowak later specified that, in his expert opinion, “the de facto denial of access to pain relief, if it causes severe pain and suffering, constitutes cruel, inhuman or degrading treatment or punishment.”[178]

Even under this reading, not every case where a person suffers from severe pain but has no access to appropriate treatment would constitute cruel, inhuman, or degrading treatment or punishment. In a 2013 report to the Human Rights Council, UN Special Rapporteur on Torture Juan Mendez stated this will only be the case when the following conditions apply:

  • The suffering is severe and meets the minimum threshold required under the prohibition against torture, cruel, inhuman, or degrading treatment or punishment;
  • The state is, or should be, aware of the level and extent of the suffering;
  • Treatment is available to remove or lessen the suffering but no appropriate treatment was offered; and
  • The state has no reasonable justification for the lack of availability and accessibility of pain treatment.[179]

V.Full Recommendations

The government of Guatemala needs to take urgent steps to remove barriers to the availability and accessibility of opioid analgesics—and palliative care services more generally—for patients suffering from moderate to severe pain due to life-limiting illnesses. The government has an obligation to ensure that it citizens have access to affordable pain treatment services and medications.

Availability of Opioid Analgesics

Actions Not Requiring Regulatory Reform

The government can take a number of key steps without amending the country’s regulations on opioid analgesics. These steps should be taken without delay.

  • At least double the number of scripts in the special prescription pad from 25 to 50. The limit of 25 scripts per prescription pad is not required by regulation. Moreover, the limit does not meaningfully reduce the risk of opioid misuse and increases the frequency that doctors must endure the time-consuming process of obtaining a new prescription pad.
  • Allow doctors to obtain at least two special prescription pads at a time. The one prescription pad limit increases the frequency that doctors must obtain new pads and the likelihood they will be without a pad during the application process.
  • Remove the requirement for the timbre medico from the dictamen. This requirement creates an unnecessary logistical burden for physicians to prescribe opioid analgesics.
  • Abolish the July 31, 2015 requirement that representatives have a signed letter to authorize prescription forms. This newly introduced requirement complicates the ability of relatives or pharmaceutical companies to authorize prescription forms for opioid analgesics.
  • Create internal, publicly available guidelines for authorizing prescriptions. These should outline the circumstances under which authorization will be denied and clarify that the Department of Regulation’s staff should not reject prescriptions due to dosage.
  • Create and distribute publicly available guidelines for private pharmacies dispensing opioids in outside departments. As noted above, private pharmacies outside Guatemala City can submit monthly reports to the department for approval in lieu of having patients authorize each prescription individually. As of March 2017, no pharmacies were using this exception. The Department of Regulation should create guidelines on how this monthly authorization process will function and distribute them to pharmacies to ensure they are aware of this option and how to use it.
  • Develop and implement a program to increase the number of physicians with prescription privileges. The government should develop outreach programs to ensure that multiple doctors in each hospital have a special prescription pad and training in pain management interventions.
  • Ensure oral morphine is available in at least one pharmacy in every departmento. The government should ensure that at least one pharmacy in each departmento stocks oral morphine and utilizes the monthly authorization process.  Where there are no private pharmacies stocking oral morphine, the government should ensure that a hospital pharmacy dispenses oral morphine to outpatients.
  • Ensure that oral morphine is available at San Juan de Dios hospital’s pharmacy. San Juan de Dios is one of the largest hospitals in the country and attends to many patients with chronic illnesses who require pain treatment and palliative care.
  • Include on the MSPAS and IGGS lists of medications all formulations and dosages of opioids on the WHO’s Model Lists of Essential Medications. Neither list should limit these medications to specific fields of medicine, such as oncology. Immediate-release morphine should be made available in smaller dosages.

Actions Requiring Regulatory Reform

  • Reform the opioid control regulations. The opioid regulations are needlessly restrictive; deter doctors and pharmacists from prescribing and dispensing opioids; and lead to unnecessary suffering for thousands of Guatemalans. These problems cannot be adequately addressed within the current regulatory regime. The Ministry of Health should hold an inclusive meeting of relevant stakeholders to inform a regulatory reform process. This process should not just consider removing existing regulatory barriers, it should also develop regulations that promote opioid access. 
  • Allow doctors to apply for a new prescription pad by mail or electronically. The current in-person procedure created by regulation 16-2002 for obtaining a prescription pad deters doctors from prescribing and dispersing opioids, particularly rural doctors. The Department of Regulation should establish a procedure for doing these activities by mail or electronically.
  • Remove the dictamen requirement from the Government Agreement and regulations 16-2002 and 17-2002. The addition of the dictamen does not meaningfully reduce the risk of opioid misuse. It also complicates the prescription process and increases the risk that prescriptions will be denied due to clerical errors.
  • Abolish or at least modify the unusual and burdensome authorization procedure. It creates major barriers for patients who require opioid analgesics and has resulted in physicians and hospitals seeking shortcuts to avoid it, undermining its original purpose. If, in the short term, abolishing the procedure is not feasible, steps should be taken to reduce the regulatory burden. Options include:
    • Modify regulation 17-2002 to allow for phone or electronic authorization. The Government Agreement only notes that opioid prescriptions “must first be authorized by the department before it is released.” A process could be created where pharmacies receive authorization by phone or electronically;
    • Modify regulation 17-2002 to allow for pre-approved prescriptions. A process could be established whereby certain physicians are given prescriptions that are pre-approved by the department; and
    • Modify the Government Agreement and regulation 17-2002 to allow pharmacies within Guatemala City to submit monthly reports to the Department of Regulation for approval in lieu of having patients authorize each prescription individually. This is already allowed for pharmacies outside Guatemala City.
  • Reduce fear of legal sanction. The new regulations should be written clearly and accompanied by detailed guidelines to ensure that doctors and pharmacists acting with appropriate diligence do not fear accidental violations of the regulations.

Integrating Palliative Care into the Health Care System

  • Create a pain treatment and palliative care strategy. The government should convene an inclusive meeting of relevant stakeholders to help it develop a national pain treatment and palliative care policy and strategy. The policy should address existing barriers to developing pain treatment and palliative care, including policy, regulatory, educational, and other obstacles. It should set clearly defined benchmarks and timelines for overcoming these barriers and introducing pain treatment palliative care in institutional and community settings. It should set up a system for periodically reviewing progress and adjustments of benchmarks.
  • Work with key hospitals to provide pain treatment and palliative care. The government and health care system should identify key health facilities around the country to provide pain treatment and palliative care. They should train health care workers and ensure relevant medicines are available and accessible. 

Integrating Palliative Care into Health Care Financing

  • The Ministry of Health should review implementation of referral arrangements to INCAN Hospital. The government currently agrees to provide free care at INCAN Hospital for patients referred from public hospitals. However, referral practices are inconsistent and can take a month—too long for patients with life-limiting illnesses.
  • Review MSPAS’ coverage of essential medications. MSPAS should be reformed with a view to ensuring that outpatient medication costs do not constitute an undue barrier to obtaining essential palliative care medications.

Education

  • Develop a mandatory undergraduate curriculum in palliative care. The Ministry of Health in partnership with San Carlos University, Guatemala’s only public medical school, and private medical schools, should develop a mandatory undergraduate curriculum in palliative care to ensure that all medical students receive at least basic training in the discipline.
  • Develop mandatory clinical training in palliative care. The Ministry of Health should develop a plan together with relevant hospitals to mandate rotations in palliative care units for doctors of certain postgraduate programs, including oncology, internal medicine, and anesthesiology to ensure clinical exposure to palliative care.
  • Recognize palliative care as a medical specialty.The Ministry of Education in partnership with San Carlos University and private universities should begin developing a curriculum for palliative care to be a specialty, which is essential for its long-term development.

Acknowledgments

Research for this report was conducted by Matthew Simon, New York University School of Law fellow in the Health and Human Rights Division of Human Rights Watch, and Diederik Lohman, acting director of the Health and Human Rights Division. Matthew Simon wrote the report. The report was reviewed by Diederik Lohman; Chris Albin-Lackey, legal advisor; Daniel Wilkinson, managing director of the Americas Division, and Danielle Haas, senior editor in the Program Office.

Jennifer Pierre, senior associate, and Matthew Parsons, associate, in the Health and Human Rights Division; Stephanie Martinez and Teresa Kennedy, interns in the Health and Human Rights Division; and Alejandra Aguilar de Hernandez, mission-coordinator and translator, provided invaluable assistance. Translation into Spanish was provided by Gabriela Haymes. Production assistance was provided by Oliva Hunter, Rafael Jimenez, Jessie Graham, Pierre Bairin, Jenny Catherall, Fitzroy Hepkins, and José Martinez.

We are deeply grateful to the many palliative care patients in Guatemala who, despite being gravely ill, agreed to be interviewed for this report. Without them and their relatives, this manuscript would not have been possible. We are committed to using this report to try to make sure that others who develop life-threatening illness—and pain and other symptoms associated with it—will not have to endure the suffering many of these patients faced.

We are also greatly indebted to the many palliative care advocates, doctors, nurses, pharmacists, social workers, and volunteers in Guatemala and elsewhere who helped us conduct our research, understand our findings, and write this report. Their commitment to serving people at the most vulnerable time of their lives is both humbling and inspiring. We are particularly grateful for the assistance of Dr. Eva Duarte, Dr. Victor Samayoa, Dr. Maria Elena Alcantara, Dr. Silvia Rivas, Dr. Marisol Bustamante, and Dr. William Santizo whose advocacy and clinical work has improved the lives of thousands of Guatemalans.

 

[1] Human Rights Watch interview with Dr. Eva Duarte, Guatemala City, December 14, 2014.

[2]United Nations Department of Economic and Social Affairs (UNDESA) Population Division, “World Population Prospects: The 2012 Revision,” 2013, http://esa.un.org/wpp/Documentation/pdf/WPP2012_%20KEY%20FINDINGS.pdf (accessed May 15, 2015) p. 4.

[3]UNDESA Population Division, “Changing Levels and Trends in Mortality: The Role of Patterns of Death by Cause,” 2012, http://www.un.org/esa/population/publications/levelsandtrendsinmortality/Changing%20levels%20and%20trends%20in%20mortality.pdf (accessed March 31, 2015) p.7.

[4] Katrien Moens, et al., “Are There Differences in the Prevalence of Palliative Care-Related Problems in People Living with Advanced Cancer and Eight Non-Cancer Conditions? A Systematic Review,” Journal of Pain and Symptom Management, vol. 48, no. 4 (2014), pp. 667-669. Ranges reflect the minimum and maximum prevalence found in academic literature. Article includes important details on the academic literature from which the percentages are drawn.

[5] Ministerio de Salud Pública y Asistencia Social (MSPAS), et al., “Programa Nacional De Enfermedades Crónicas No Transmisibles,” 2010, http://www.mindbank.info/item/4845 (accessed June 4, 2010), p. 9.

[6] World Health Organization (WHO), “Country Cooperation Strategy, at a Glance,” 2015, http://apps.who.int/iris/bitstream/10665/136864/1/ccsbrief_gtm_en.pdf (accessed March 2, 2017).

[7] Calculated using 2015 WHO estimates, see WHO, Department of Information, Evidence, and Research, “Estimated deaths (‘000) by cause, sex and WHO Member State, 2015” March 2017 http://www.who.int/healthinfo/global_burden_disease/estimates/en/index1.html (accessed April 26, 2017).

[8] UN demographic data can be found here: http://esa.un.org/unpd/wpp/unpp/panel_indicators.htm/.

[9]F. Brennan, et al., “Pain Management: A Fundamental Human Right,” Anesthesia & Analgesia, vol. 105, no. 1 (2007), pp. 205-221.

[10] WHO, “National Cancer Control Programmes,” http://www.who.int/cancer/media/en/408.pdf (accessed March 2, 2017) p. 83.

[11] R.L. Daut, et al., “Development of the Wisconsin Brief Pain Questionnaire to Assess Pain in Cancer and Other Diseases,” Pain, vol. 17, no. 2 (1993), pp. 197-210.

[12] WHO, “Achieving Balance in Opioid Control Policy: Guidelines for Assessment,” 2000, http://apps.who.int/medicinedocs/pdf/whozip39e/whozip39e.pdf (accessed March 2, 2017) p. 1.

[13] United Nations Economic and Social Council (ECOSOC), "Single Convention on Narcotic Drugs of 1961, as amended by the 1972 Protocol amending the Single Convention on Narcotic Drugs, 1961,"  https://www.unodc.org/pdf/convention_1961_en.pdf (accessed March 2, 2017), preamble; WHO, “Achieving Balance in Opioid Control Policy: Guidelines for Assessment,” 2000, http://apps.who.int/medicinedocs/pdf/whozip39e/whozip39e.pdf p. 1.

[14] A-L Jennings, et al., “A Systematic Review of the Use of Opioids in the Management of Dyspnoea,” Thorax, vol. 57 (2002), p. 939, http://thorax.bmj.com/content/57/11/939.full.pdf+html (accessed March 31, 2015).

[15] Amy P. Abernethy, et al., “Randomized, Double Blind, Placebo Controlled Crossover Trial of Sustained Release Morphine for the Management of Refractory Dyspnoea,” BMJ, vol. 327 (2003), http://www.bmj.com/content/327/7414/523.full.pdf+html (accessed March 31, 2015) p. 1.

[16] James Hallenbeck, M.D., “Pathophysiologies of Dyspnea Explained: Why Might Opioids Relieve Dyspnea and Not Hasten Death?” Journal of Palliative Medicine, vol. 15, no. 8 (2012), p. 849.

[17] American College of Chest Physicians, “Consensus Statement on the Management of Dyspnea in Patients with Advanced Lung and Heart Disease,” CHEST Journal, vol. 137, no. 3 (2010), http://journal.publications.chestnet.org/data/Journals/CHEST/22082/chest.09-1543.pdf (accessed March 31, 2015) pp. 675-76; British Columbia Medical Association, et al., “Guidelines & Protocols, Palliative Care for the Patient with Incurable Cancer of Advanced Disease Part 2: Pain and Symptom Management Dyspnea,” 2011, pp. 1-3, http://www.bcguidelines.ca/guideline_palliative2.html (accessed March 31, 2015).

[18] American College of Chest Physicians, “Consensus Statement on the Management of Dyspnea in Patients with Advanced Lung and Heart Disease,” CHEST Journal, pp. 675-76; Darcy D Marciniuk, et al., “Managing Dyspnea in Patients with Advanced Chronic Obstructive Pulmonary Disease: A Canadian Thoracic Society Clinical Practice Guideline,” Canadian Respiratory Journal, vol. 18 (2011), http://www.respiratoryguidelines.ca/sites/all/files/2011_CTS_guideline_COPD_dyspnea.pdf (accessed May 15, 2015) p. 4; Jennings, “A Systematic Review of the Use of Opioids in the Management of Dyspnoea,” Thorax, p. 941; Abernethy, “Randomized, Double Blind, Placebo Controlled Crossover Trial of Sustained Release Morphine for the Management of Refractory Dyspnoea,” BMJ,  p. 3.

[19] J.P. Solano, et al., “A Comparison of Symptom Prevalence in Far Advanced Cancer, AIDS, Heart Disease, Chronic Obstructive Pulmonary Disease and Renal Disease,” Journal of Pain and Symptom Management, vol. 31, no. 1 (2006).

[20] See, for example, WHO, “National Cancer Control Programmes,” http://www.who.int/cancer/media/en/408.pdf pp. 83-91.

[21]WHO, “Strengthening of Palliative Care as a Component of Integrated Treatment Throughout the Life Course,” December 2013, http://apps.who.int/gb/ebwha/pdf_files/EB134/B134_28-en.pdf (accessed March 2, 2017) paras. 19-20; WHO, “National Cancer Control Programmes,” http://www.who.int/cancer/media/en/408.pdf pp. 91-92.

[22] WHO, “Cancer Pain Relief, with a Guide to Opioid Availability, Second Edition,” 1996, http://whqlibdoc.who.int/publications/9241544821.pdf (accessed May 14. 2015) p. 43.

[23] Ministry of Health of the Kingdom of Morocco, “Stratégie Sectorielle de Santé 2012-2016,” March 2012, http://www.sante.gov.ma/Docs/Documents/secteur%20sant%C3%A9.pdf (accessed July 29, 2015) p. 17; Rolfe Sean Morrison, et al., “Cost Savings Associated with US Hospital Palliative Care Consultation Programs,” Arch Intern Med, vol. 168 (2008), http://archinte.jamanetwork.com/article.aspx?articleid=414449 (accessed June 27, 2014).

[24] See, for example, WHO and Worldwide Hospice Palliative Care Alliance (WHPCA) (previously known as World Palliative Care Alliance), Global Atlas of Palliative Care at the End of Life, (Geneva: WHPCA, 2014), http://www.who.int/nmh/Global_Atlas_of_Palliative_Care.pdf pp. 27-29.

[25] Ibid., p. 36. Findings are based on a study published in the Journal of Pain and Symptom Management. See Thomas Lynch, et al., “Mapping Levels of palliative Care Development: A Global Update,” Journal of Pain and Symptom Management, vol. 45, no. 6 (2013).

[26] Human Rights Watch, “Please, do not make us suffer anymore…”: Access to Pain Treatment as a Human Right, March 2009, https://www.hrw.org/report/2009/03/03/please-do-not-make-us-suffer-any-more/access-pain-treatment-human-right, pp. 2, 3.

[27] International Narcotics Control Board (INCB), Report 2014, (New York: United Nations, 2015), https://www.incb.org/documents/Publications/AnnualReports/AR2014/English/AR_2014.pdf (accessed March 23, 2015) p. 3.

[28] WHO Briefing Note, “Access to Controlled Medications Programme,” April 2012, http://www.who.int/medicines/areas/quality_safety/ACMP_BrNote_Genrl_EN_Apr2012.pdf?ua=1 (accessed March 31, 2015).

[29] Human Rights Watch Interview with Dr. Victor Samayoa, Guatemala City, July 20, 2015.

[30] WHO mortality estimates 1,200 Guatemalans die each year due to HIV/AIDS, and Treat the Pain, a project of the American Cancer Society, estimates that 9,871 Guatemalans die of cancer. WHO, Department of Information, Evidence, and Research, “Estimated deaths (‘000) by cause, sex and WHO Member State, 2015” March 2017 http://www.who.int/healthinfo/global_burden_disease/estimates/en/index1.html; Treat the Pain, “Treat the Pain: A Country Snapshot—Guatemala,” April 29, 2016, http://www.treatthepain.org/Assets/CountryReports/Guatemala.pdf (accessed April 14, 2017).

[31] Ibid. Eighty percent of end-stage cancer patients and 50 percent of people dying of AIDS are estimated to experience moderate to severe pain and require treatment with opioid analgesics.

[32] This figure was calculated using the WHO and WHPCA formula, see WHO and WHPCA, Global Atlas of Palliative Care at the End of Life, p. 96-98; population data for Guatemala from UN Population Division, see UN Department of Economic and Social Affairs, Population Division, “World Population Prospects: The 2015 Revision, Total population (both sexes combined) by five-year age group, major area, region and country,” July 2015, https://esa.un.org/unpd/wpp/Download/Standard/Population/ (accessed April 26, 2017).

[33] A few private for-profit and non-profit facilities also offer palliative care including Sanatorio Nuestra Señora del Pilar, a for-profit hospital in Guatemala City (http://www.sanatorioelpilar.com/servicios-y-especialidades/unidad-de-medicina-paliativa/) and Hospice Estuardo Mini, a non-profit hospice near Guatemala City that offers free hospice care to terminally-ill children (http://www.fundacionammarayudando.org/index.php?option=com_content&view=article&id=47&Itemid=54).

[34] Dr. Eva Rossina Duarte Juárez, et al., “Propuesta De Una Política Nacional De Cuidados Paliativos Para Pacientes Con Cancer,” November 2013, http://digi.usac.edu.gt/bvirtual/informes/puiis/INF-2013-03.pdf (accessed May 7, 2015) p. 26. 

[35] This figure was calculated using the WHO and WHPCA formula. WHO and WHPCA, Global Atlas of Palliative Care at the End of Life, p. 96-98; WHO, Department of Information, Evidence, and Research, “Estimated deaths (‘000) by cause, sex and WHO Member State, 2015” March 2017 http://www.who.int/healthinfo/global_burden_disease/estimates/en/index1.html.

[36] Human Rights Watch interview with Sofia Garcia (Pseudonym), Guatemala City, December 17, 2014.

[37] Ibid.

[38] Human Rights Watch interview with Gabriel Morales (Pseudonym), Guatemala City, December 19, 2014. Gabriel is a 60-year-old man with cancer that had metastasized in his abdomen. Roosevelt Hospital now carries oral opioids for patients like Gabriel.

[39] Human Rights Watch interview with Mariel Torres (Pseudonym), 58-year-old woman with a facial tumor, Guatemala City, December 17, 2014.

[40] Human Rights Watch interview with a palliative care physician (name withheld), Guatemala City, December 17, 2014.

[41] Human Rights Watch interview with Catalina Gutierrez, Guatemala City, December 18, 2014.

[42] Human Rights Watch interview with Luciana Garcia (pseudonym), daughter of patient with ovarian cancer, Guatemala City, December 16, 2014.

[43] Ibid.

[44] Human Rights Watch interview with Luciana Garcia (pseudonym), Guatemala City, December 16, 2014.

[45] Human Rights Watch interview with Gabriel Morales (Pseudonym), Guatemala City, December 29, 2014.

[46] Human Rights Watch interview with Antonia Castillo, a 68-year-old woman with abdominal cancer, Guatemala City, December 16, 2014.

[47] Human Rights Watch interview with palliative care physician (name withheld), Guatemala City, December 15, 2014.

[48] Anna-Claire Bevan, “Driving Gangs Off Guatemala City’s Buses,” Latin Correspondent, October 23, 2014, http://latincorrespondent.com/guatemala/driving-gangs-guatemala-citys-buses/ (accessed May 19, 2015).

[49] Information for the US State Department’s travel guidance can be found here:  http://travel.state.gov/content/passports/english/country/guatemala.html (accessed May 19, 2015); Saul Elbein, “The Most Dangerous Job in the World: How did 900 Bus Drivers End Up Dead in Guatemala City,” New Republic, June 4, 2013, http://www.newrepublic.com/article/113293/900-bus-drivers-dead-guatemala-city-worlds-most-dangerous-job/ (accessed March 2, 2017).

[50] Jorge Eduardo de León Duque, et al., “Informe Anual Circunstanciado Situación de los Derechos Humanos Y Memoria Labores,” 2014, http://www.pdh.org.gt/archivos/descargas/Biblioteca/Informes%20Anuales/inf_2014.pdf (accessed May 19, 2014) p.5.

[51] Human Rights Watch interview with Christina Mendoza (pseudonym), mother of a 16-year-old patient with kidney cancer, Guatemala City, December 17, 2014.

[52] Human Rights Watch interview with Mariana Hernandez (pseudonym), 58-year-old women with liver and abdominal cancer, Guatemala City, December 18, 2014.

[53] Human Right Watch interview with Felipe Soto (pseudonym), son of a 76-year-old man with prostate cancer, Guatemala City, December 16, 2014.

[54] Human Rights Watch interview with Blanca Coslo (pseudonym), 24-year-old woman with cervical cancer with metastasis in her lungs, Guatemala City, August 20, 2015.

[55] Ibid.

[56] Human Rights Watch interview with Laura Marina Muares Guzman, Guatemala City, August 19, 2015.

[57] Human Rights Watch interview with an internal medicine physician (name withheld), December 20, 2014.

[58] WHO, “Strengthening of Palliative Care as a Component of Integrated Treatment throughout the Life Course,” December 2013 http://apps.who.int/gb/ebwha/pdf_files/EB134/B134_28-en.pdf para. 19.

[59] UN Committee on Economic, Social and Cultural Rights, “Substantive Issues Arising in the Implementation of the International Covenant on Economic, Social and Cultural Rights,” General Comment No. 14, The Right to the Highest Attainable Standard of Health, E/C.12/2000/4 (2000), http://www.refworld.org/pdfid/4538838d0.pdf (accessed March 2, 2017) para. 43(d).

[60]ECOSOC, “Single Convention on Narcotic Drugs of 1961, as amended by the 1972 Protocol amending the Single Convention on Narcotic Drugs, 1961,” http://www.unodc.org/pdf/convention_1961_en.pdf arts. 30(1)(b)(i), 30(1)(b)(ii), 30(2)(b)(i), 34 (b). Guatemala ratified the Convention in 1975.

[61] INCB, “Report of the International Narcotics Control Board on the Availability of Internationally Controlled Drugs: Ensuring Adequate Access for Medical and Scientific Purposes,” 2011, http://www.incb.org/documents/Publications/AnnualReports/AR2010/Supplement-AR10_availability_English.pdf (accessed May 19, 2015).

[62] WHO, “Cancer Pain Relief, Second Edition, with a Guide to Opioid Availability,” 1996,  http://whqlibdoc.who.int/publications/9241544821.pdf (accessed May 19, 2015) p. 9.

[63] WHO, “Ensuring Balance in National Policies on Controlled Substances,” 2011, http://apps.who.int/iris/bitstream/10665/44519/1/9789241564175_eng.pdf (accessed March 2, 2017) p. 27.

[64] INCB, “Availability of Opioids for Pain Management (2010-2012 average),” 2012, https://www.incb.org/documents/Narcotic-Drugs/Availability/total_2010_2012_final.pdf (accessed May 14, 2015).

[65] There were an estimated 9,871 cancer deaths in Guatemala in 2012, see “Globocan 2012,” International Agency for Research on Cancer, WHO, http://globocan.iarc.fr/ia/World/atlas.html (accessed March 3, 2017). According to WHO, there were an estimated 1,200 deaths due to HIV/AIDS, see WHO, Department of Information, Evidence, and Research, “Estimated deaths (‘000) by cause, sex and WHO Member State, 2015” March 2017 http://www.who.int/healthinfo/global_burden_disease/estimates/en/index1.html. Research suggest that approximately 80 percent of terminal cancer patients and 50 percent of terminal HIV/AIDS patients will suffer from moderate to severe pain, see Kathleen M. Foley, et al., “Pain Control for People with Cancer and AIDS,” in Disease Control Priorities in Developing Countries, ed. Dean T Jamison, et al., vol. 2 (Washington, DC: World Bank, 2006). Foley and others estimate that the average terminal cancer or AIDS patient who suffers from moderate to severe pain will need 60 to 75 mg of morphine per day for an average of about 90 days. From this information, it is estimated that 8,497 individuals with cancer or AIDS in Guatemala are in need of pain treatment annually, see Treat the Pain, “Guatemala—Treat the Pain: A Country Snapshot,” http://www.treatthepain.org/Assets/CountryReports/Guatemala.pdf. Amounts calculated using morphine equivalent, excluding Pethidine, as Pethidine is not appropriate for chronic pain.

[66] Human Rights Watch interview with Dr. Maria Elena Alcantara, private palliative care physician, Guatemala City, July 22, 2015.

[67] Reglamento Para El Control Sanitario De Los Medicamentos Y Productos Afines, no. 712-99 of 1999, art. 63; MSPAS, Regulation 16-2002, art. 3. There is one exception to the special prescription form. According to representatives of the department, doctors can write the first opioid prescription to a patient on a normal prescription pad. However, some palliative care physicians we spoke with were not aware of this exception—perhaps not surprising as this exception is not mentioned in the regulations.

[68] ECOSOC, “Single Convention on Narcotic Drugs of 1961, as amended by the 1972 Protocol amending the Single Convention on Narcotic Drugs, 1961,” http://www.unodc.org/pdf/convention_1961_en.pdf art. 30(2)(b)(ii).

[69] WHO, “Ensuring Balance in National Policies on Controlled Substances: Guidance for Availability and Accessibility of Controlled Medicines,” 2011, http://whqlibdoc.who.int/publications/2011/9789241564175_eng.pdf?ua=1 p. 28.

[70] Ibid.

[71] The process to obtain a special prescription pad is explained on the Department of Regulation’s website, see “Pasos para autorización de recetas de estupefacientes,” MSPAS, http://www.medicamentos.com.gt/index.php/servicios/sustancias-controladas/autorizacion-de-recetas (accessed March 3, 2017).

[72] MSPAS, Regulation 16-2002, art. 6. Information is also available at Department of Regulation’s website, see “Pasos para autorización de recetas de estupefacientes,” MSPAS, http://www.medicamentos.com.gt/index.php/servicios/sustancias-controladas/autorizacion-de-recetas.

[73] Human Rights Watch interview with Ileana Ruiz, Department of Regulation and Control of Pharmaceutical Products and Related Products, coordinator of the Section of Psychotropics, Narcotics, Imports, and Exports, Guatemala City, December 16, 2015; WHO, “World Health Statistics 2013,” 2013, http://apps.who.int/iris/bitstream/10665/81965/1/9789241564588_eng.pdf?ua=1 (accessed May 21, 2015) p. 122. Number of physicians calculated scaling the number of physicians per 10,000 people to the whole population.

[74] Ibid.

[75] Dr. Eva Rossina Duarte Juárez, et al., “Propuesta De Una Política Nacional De Cuidados Paliativos Para Pacientes Con Cáncer,” 2013, http://digi.usac.edu.gt/bvirtual/informes/puiis/INF-2013-03.pdf (accessed May 7, 2015) p. 24

[76] Arrête pris en application de l'article 34 du dahir du 2 décembre 1922 portant règlement sur l'importation, le commerce, la détention et l'usage des substances vénéneuses, June 21, 1955.

[77] Ibid.; Human Rights Watch interview with Dr. Hamza Slimani, anesthesiology resident, Rabat, January 10, 2015.

[78] Reglamento Para El Control Sanitario De Los Medicamentos Y Productos Afines, art. 63; MSPAS, Regulation 16-2002, arts. 3.3-3.4.

[79] Reglamento Para El Control Sanitario De Los Medicamentos Y Productos Afines, art. 64; MSPAS, Regulation 16-2002, art. 3.4.

[80] Human Rights Watch interview with Dr. Eva Duarte, Guatemala City, December 14, 2014.

[81] Ibid.

[82] Human Right Watch interview with two representatives of the Department of Regulation (spoke on condition of anonymity), Guatemala City, December 16, 2014.

[83] Human Rights Watch interview with pharmacist who dispenses opioids (name withheld), Guatemala City, December 15, 2014.

[84] Reglamento Para El Control Sanitario De Los Medicamentos Y Productos Afines, art. 61; MSPAS, Regulation 17-2002, arts. 4-5.

[85] MSPAS, Regulation 17-2002, art. 5.

[86] Reglamento Para El Control Sanitario De Los Medicamentos Y Productos Afines art. 61; MSPAS, Regulation 17-2002.

[87] Human Rights Watch interview with two representatives of the Department of Regulation (spoke on the condition of anonymity), Guatemala City, December 16, 2014.

[88] MSPAS, Regulation 17-2002, art. 5.31.

[89] Ibid.

[90] Human Rights Watch interview with a palliative care physician (name withheld), Guatemala City, December 17, 2014.

[91] Human Rights Watch interview with two representatives of the Department of Regulation (spoke on the condition of anonymity), Guatemala City, December 16, 2014; Human Rights Watch interview with Ileana Ruiz, July 23, 2015.

[92] Human Rights Watch interview with palliative care physician (name withheld), Guatemala City, December 15, 2014.

[93] Human Rights Watch interview with two representatives of the Department of Regulation (spoke on condition of anonymity), Guatemala City, December 16, 2014.

[94] MSPAS, Regulation 17-2002, art. 6.2.

[95] Human Rights Watch interview with Ileana Ruiz, July 23, 2015.

[96] Ibid.

[97] Ley Contra la Narcoactividad, El Congreso de la República de Guatemala, no. 49-92, art. 38, https://www.oas.org/juridico/mla/sp/gtm/sp_gtm-mla-leg-narco.pdf.

[98] Office of Food and Medicines, Ministry of Health of Guatemala, “Memorandum No. 5 of July 31, 2015,” July 2015. On file with Human Rights Watch.

[99] Human Rights Watch has conducted in-depth research in a dozen countries as well as conducted key information interviews with palliative care physicians in more than 30 other countries on regulatory systems for controlled medicines. None of these countries required additional authorization of a prescription for an opioid medication. See Human Rights Watch, Global State of Pain Treatment, Access to Medicines and Palliative Care, June 2011, https://www.hrw.org/report/2011/06/02/global-state-pain-treatment/access-medicines-and-palliative-care.

[100] Department of Health of Mexico, The Federal Commission for the Protection against Sanitary Risk (COFEPRRIS), “Acciones de la Secretaría de Salud en Materia De Cuidados Paliativos,” October 2014, http://www.tomateloapecho.org.mx/Pdfs/Sem_Paliativos2014/Clausura%20Mikel%20Arriola.pdf (accessed July 1, 2015).

[101] Human Rights Watch, Care When There is No Cure: Ensuring the Right to Palliative Care in Mexico, October 2014, https://www.hrw.org/report/2014/10/28/care-when-there-no-cure/ensuring-right-palliative-care-mexico, pp. 70-75.

[102]  See Department of Health, COFEPRRIS, “Acciones de la Secretaria de Salud en Materia De Cuidados Paliativos.”

[103] Human Rights Watch interview with Ileana Ruiz, July 23, 2015.

[104] Human Rights Watch email correspondence with Dr. Eva Duarte, September 9, 2016.

[105] Ibid.

[106] La Unidad Nacional de Oncología Pediátrica (UNOP); Hospital de Especialidades del Instituto Guatemalteco de Seguridad Social; Instituto de Cancerología (INCAN); and Roosevelt Hospital. Based on interviews with staff at these hospitals.

[107] Human Rights Watch interview with Dr. Ana Morales, internal medicine physician at Roosevelt Hospital, Guatemala City, July 24, 2015; Human Rights Watch interview with Anabella de Wyss, chief of Roosevelt Hospital internal pharmacy, July 24, 2015; Human Rights Watch interview with Dr. Judith Pineda, hematologist at Roosevelt Hospital, July 24, 2015.

[108] Human Rights Watch interview with Dr. Victor Samayoa, Guatemala City, July 20, 2015.

[109] Human Rights Watch interview with Dr. Karla Lopez, oncologist at San Juan de Dios General Hospital, Guatemala City, July 23, 2015.

[110] Marta Leon, et al., “Integrating palliative care in public health: The Colombian experience following an International Pain Policy Fellowship,” Palliative Medicine  (2011), http://www.painpolicy.wisc.edu/sites/www.painpolicy.wisc.edu/files/
Leon_2011_Integrating%20palliative%20care_0.pdf
(accessed May 19, 2015) p.3; Marta Leon, et al., “Improving the Availability of and Access to Opioids in Columbia: Description and Preliminary Results of an Action Plan for the Country,” Journal of Pain and Symptom Management, vol. 28, no. 5 (2009), http://www.jpsmjournal.com/article/S0885-3924(09)00705-2/pdf (accessed May 19, 2015).

[111] Pain Policy & Palliative Care, “Celebrating Success: A Palliative Care Law for Colombia,” post to “painpolicy,” October 23, 2014, https://painpolicy.wordpress.com/2014/10/23/celebrating-success-a-palliative-care-law-for-colombia/ (accessed May 19, 2015).

[112] INCB, Narcotic Drugs: Estimated World Requirements for 2009, Statistics for 2007, (New York: United Nations, 2009), https://www.incb.org/documents/Narcotic-Drugs/Technical-Publications/2008/Narcotics_drugs_publication2008.pdf (accessed March 6, 2017), p. 236; Treat the Pain, “Colombia—Treat the Pain: A Country Snapshot,” 2016, http://treatthepain.org/Assets/CountryReports/Colombia.pdf (accessed March 6, 2017). 

[113] Human Rights Watch interview with a palliative care physician (name withheld), Guatemala City, December 15, 2014.

[114] We also found that private physicians or pharmacies routinely engage courier services to get authorization for prescriptions for their patients. Thus, the regulatory barriers mainly affect Guatemala’s poor, who cannot afford such services.

[115] As noted above, there are some circumstances where this is allowed. These pharmacists, in some cases, were going beyond the exceptions in the regulation.

[116] Ley Contra la Narcoactividad, art. 44.

[117] Ibid.

[118] Ibid., art. 38.

[119] MSPAS, Regulation 17-2002, art. 6.1.

[120] MSPAS, Regulation 16-2002, art. 3.1.

[121] WHO, “Achieving Balance in National Opioids Control Policy: Guidelines for Assessment,” 2000, http://apps.who.int/medicinedocs/pdf/whozip39e/whozip39e.pdf (accessed March 6, 2017) p. 18.

[122] Ibid.

[123] WHO, “WHO Model List of Essential Medicines,” 2013, http://apps.who.int/iris/bitstream/10665/93142/1/EML_18_eng.pdf?ua=1 (accessed March 7, 2017).

[124] Human Rights Watch interview with Dr. Eva Duarte, Guatemala City, December 14, 2015.

[125] WHO recommends that a rescue dose should be “50-100% of the regular four-hourly dose.” See WHO, “Cancer Pain Relief, Second Edition, With a Guide to Opioid Availability,” 1996, http://apps.who.int/iris/bitstream/10665/37896/1/9241544821.pdf (accessed March 6, 2017), p. 14.

[126] Human Rights Watch email correspondence with Dr. Eva Duarte, September 9, 2016.

[127] See IGSS list at http://www.igssgt.org/images/medicamentos/LM%20Julio%202014.pdf/ (accessed May 28, 2015). See MSPAS list at http://www.mspas.gob.gt/index.php/en/contrato-abierto.html (accessed May 28, 2015).

[128] WHO and WHPCA, Global Atlas of Palliative Care at the End of Life, p. 16.

[129] WHO, “Strengthening of Palliative Care as a Component of Integrated Treatment throughout the Life Course,” December 2013, http://apps.who.int/gb/ebwha/pdf_files/EB134/B134_28-en.pdf para. 19.

[130] WHO, “Cancer Pain Relief,” http://whqlibdoc.who.int/publications/9241544821.pdf p. 3.

[131] “Strengthening of Palliative Care as a Component of Comprehensive Care throughout the Life Course,” World Health Assembly, WHA67.19, May 14, 2014, http://apps.who.int/gb/ebwha/pdf_files/WHA67/A67_R19-en.pdf (accessed June 26, 2014).

[132] International Covenant on Economic, Social and Cultural Rights (ICESCR), adopted December 16, 1966, G.A. Res. 2200A (XXI), 21 U.N. GAOR Supp. (No. 16) at 49, U.N. Doc. A/6316 (1966), 993 U.N.T.S. 3, entered into force January 3, 1976, art. 12; Convention on the Rights of the Child (CRC), adopted November 20, 1989, G.A. Res. 44/25, annex, 44 U.N. GAOR Supp. (No. 49) at 167, U.N. Doc. A/44/49 (1989), entered into force September 2, 1990, art. 12; UN Committee on Economic, Social and Cultural Rights, General Comment No. 14, The Right to the Highest Attainable Standard of Health, para. 43.

[133] UN Committee on Economic, Social and Cultural Rights, General Comment No. 14, The Right to the Highest Attainable Standard of Health, para. 44(f).               

[134] WHO, “Strengthening of Palliative Care as a Component of Integrated Treatment throughout the Life Course,” December 2013, http://apps.who.int/gb/ebwha/pdf_files/EB134/B134_28-en.pdf para. 20(i).

[135] See the NCD plan 2010-2015, National Program for Non-Communicable Diseases, MSPAS, “Plan Estratégico 2010-2015, Guatemala, 2010,” 2010, https://www.mindbank.info/item/4845 (accessed March 7, 2017). The NCD treatment guide can be found at http://www.mspas.gob.gt/files/Descargas/ProtecciondelaSalud/Enfermedades%20cronicas%20no%20transmisibles/guias_atencion_enfermedades_cronicas_2011.pdf.

[136] MSPAS, “Plan Estratégico Nacional para la Prevención, Atención y Control de ITS, VIH y Sida, Guatemala 2011-2015,” June 2011, http://www.pasca.org/sites/default/files/PEN_2011_2015_GUA_FINAL.pdf (accessed March 7, 2017).

[137] MSPAS, WHO, and Organización Pan American Health Organization, “Plan Nacional de Prevención, Control y Manejo de Cáncer Cervicouterino 2014-2024,” May 2014, http://www.paho.org/gut/index.php?option=com_docman&view=download&alias=640-plan-nacional-de-precencion-control-y-manejo-de-cancer-cervicouterino-2014-2024&category_slug=sfc-salud-reproductiva-materna-y-neonatal-global-y-regional&Itemid=518 (accessed March 7, 2017).

[138] Human Rights Watch email correspondence with Dr. Eva Duarte, September 9, 2016.

[139] See Que Regula los Derechos y Obligaciones de los Pacientes, en Materia de Información y de Decisión Libre e Informada, Asamblea Legislativa de la República de Panamá, no. 68 of 2003, http://www.gorgas.gob.pa/wp-content/uploads/2013/11/Ley-68-2003-Regula-los-derechos-y-obligaciones-de-los-pacientes.pdf (accessed May 19, 2015) art. 23.

[140] Ministerio de Salud de Panamá, “Programa Nacional de Cuidados Paliativos,” 2011, http://190.34.154.93/rncp/sites/all/files/Cuidados%20paliativos%20(2).pdf (accessed May 19, 2015).

[141] Human Rights Watch email correspondence with Dr. Gaspar Da Costa, Panama’s national palliative care coordinator, September 10, 2014.

[142] European Association for Palliative Care (EAPC), “Specialization in Palliative Medicine for Physicians in Europe 2014: A Supplement to the EAPC Atlas of Palliative Care in Europe,” 2014, preface, http://www.eapcnet.eu/Portals/0/Organization/Development%20in%20Europe%20TF/Specialisation/2014_SpecialisationPMPhysicianInEurope.pdf (accessed May 15, 2015); David Clark, “International Progress in Creating Palliative Medicine as a Specialized Discipline,” in Oxford Textbook of Palliative Medicine, Fourth Ed., ed. Geoffrey Hanks, et al., (London: Oxford University Press, 2010), p. 10.

[143] UN Committee on Economic, Social and Cultural Rights, General Comment No. 14, The Right to the Highest Attainable Standard of Health, para. 44.

[144] WHO, “Strengthening of Palliative Care as a Component of Integrated Treatment throughout the Life Course,” December 2013, http://apps.who.int/gb/ebwha/pdf_files/EB134/B134_28-en.pdf para. 20.

[145] “Strengthening of Palliative Care as a Component of Comprehensive Care throughout the Life Course,” World Health Assembly, May 14, 2014, http://apps.who.int/gb/ebwha/pdf_files/WHA67/A67_R19-en.pdf.

[146] Timothy E. Quill, M.D. and Amy P. Abernethy, M.D., “Generalist Plus Specialist Palliative Care—Creating a More Sustainable Model,” New England Journal of Medicine, vol. 368, no. 13 (2013), pp. 1173-74,  http://www3.med.unipmn.it/papers/2013/NEJM/2013-03-28_nejm/nejmp1215620.pdf (accessed May 15, 2015).

[147] Universidad de San Carlos de Guatemala; Universidad Francisco Marroquín; Universidad Mariano Gálvez de Guatemala; and Universidad Rafael Landívar.

[148] For Universidad de San Carlos’ curriculum, see http://medicina.usac.edu.gt/cienciasclinicas.html#acc1; For Universidad Francisco Marroquín curriculum, see http://medicina.ufm.edu/images/6/6d/Pensum_Ciencias_Cl%C3%ADnicas_2015.pdf; For Universidad Rafael Landívar’s curriculum, see http://www.url.edu.gt/WebPensumCarrera/Default.aspx?id=206&sm=c8&sm=c9. Mariano Gálvez University is the only medical school that has a mandatory course in palliative care. At Mariano Gálvez, students are required to do 75 hours of palliative care training, including 25 hours of clinical training in the palliative care unit at INCAN. Dr. Eva Rossina Duarte Juárez, et al., “Propuesta De Una Política Nacional De Cuidados Paliativos Para Pacientes Con Cancer,” 2013, http://digi.usac.edu.gt/bvirtual/informes/puiis/INF-2013-03.pdf (accessed May 7, 2015) p.30.

[149] For Universidad de San Carlos’ curriculum, see http://medicina.usac.edu.gt/cienciasclinicas.html#acc1.

[150] Human Rights Watch interview with anesthesiology resident (name withheld), INCAN, Guatemala City, August 20, 2015.

[151] Duarte, et al., “Propuesta De Una Política Nacional De Cuidados Paliativos Para Pacientes Con Cancer,” 2013, http://digi.usac.edu.gt/bvirtual/informes/puiis/INF-2013-03.pdf p. 30. 

[152] Human Rights Watch interview with Dr. Eva Duarte, Guatemala City, August 20, 2015.

[153] Constitución Política de la República de Guatemala, Corte de Constitucionalidad, 1985, http://www.ine.gob.gt/archivos/informacionpublica/ConstitucionPoliticadelaRepublicadeGuatemala.pdf (accessed June 9, 2015) art. 93. For an English language version, see https://www.constituteproject.org/constitution/Guatemala_1993.pdf.

[154] Ibid., art. 94.

[155] Ibid., art. 51.

[156] Corte de Constitucionalidad, “Inconstitucionalidad Directa, Expedientes Acumulados Nos. 355-92 y 359-92,” May 1993,  http://www.globalhealthrights.org/wp-content/uploads/2014/09/Guatemala-355-92-y-359-92-_Spanish_.pdf (accessed June 9, 2015) considerando II and III. For an English language eversion, see http://www.globalhealthrights.org/wp-content/uploads/2014/09/Guatemala-355-92-y-359-92.pdf (accessed June 9, 2015).

[157] UN Secretary-General, “The Situation in Central America: Procedures for the Establishment of a Firm and Lasting Peace and Progress in Fashioning a Region of Peace, Freedom, Democracy and Development,” Letter to the President of the General Assembly,  A/50/956, June 6, 1996, http://www.guatemalaun.org/bin/documents/Socio-economic%20and%20agrarian%20situation.pdf  (accessed June 9, 2015) annex, art. 23.

[158]ICESCR, art. 12.

[159] UN Committee on Economic, Social and Cultural Rights, General Comment No. 14, The Right to the Highest Attainable Standard of Health, para. 12.

[160] ICESCR, art. 2(1).

[161] UN Committee on Economic, Social and Cultural Rights, General Comment No. 14, The Right to the Highest Attainable Standard of Health, para. 32.

[162] Ibid., para. 47.

[163] Ibid., para. 43.

[164] Ibid., para. 44.

[165] Ibid., para. 25.

[166] Ibid., para. 33.

[167] Ibid.

[168] ICESCR, art. 12(2).

[169] UN Committee on Economic, Social and Cultural Rights, General Comment No. 14, The Right to the Highest Attainable Standard of Health, para. 8.

[170] Ibid., para. 25.

[171]Ibid., para. 19.

[172] WHO, “WHO Model List of Essential Medicines,” April 2013, http://apps.who.int/iris/bitstream/10665/93142/1/EML_18_eng.pdf?ua=1. The list includes the following opioid analgesics: codeine tablet: 30mg (phosphate); morphine injection: 10mg (morphine hydrochloride or morphine sulfate) in 1ml ampoule; oral liquid morphine: 10mg (morphine hydrochloride or morphine sulfate)/5 ml; morphine tablet: 10mg (morphine sulfate); morphine tablet (prolonged release): 10mg, 30mg, 6 mg (morphine sulfate).

[173]UN Committee on Economic, Social and Cultural Rights, General Comment 14, para. 12.

[174] Ibid., para. 12.

[175]International Covenant on Civil and Political Rights (ICCPR), adopted December 16, 1966, G.A. Res. 2200A (XXI), 21 U.N. GAOR Supp. (No. 16) at 52, U.N. Doc. A/6316 (1966), 999 U.N.T.S. 171, entered into force March 23, 1976, art. 7; Universal Declaration of Human Rights (UDHR), adopted December 10, 1948, G.A. Res. 217A(III), U.N. Doc. A/810 at 71 (1948); Convention against Torture and Other Cruel, Inhuman or Degrading Treatment or Punishment (Convention against Torture), adopted December 10, 1984, G.A. res. 39/46, annex, 39 U.N. GAOR Supp. (No. 51) at 197, U.N. Doc. A/39/51 (1984), entered into force June 26, 1987, art. 16.

[176] See, for example, European Court of Human Rights, Z and Others v. United Kingdom, no. 29392/95, judgment of May 10, 2001, available at www.echr.coe.int, para. 73.

[177] See, Letter from Manfred Nowak, special rapporteur on torture, and Anand Grover, special rapporteur on the right to the highest attainable standard of health, to Commission on Narcotic Drugs Chairperson Selma Ashipala-Musavyi, December 10, 2008, http://www.hrw.org/sites/default/files/related_material/12.10.2008%20Letter%20to%20CND%20fromSpecial%20Rapporteurs.pdf (accessed March 7, 2017).

[178] Human Rights Council, Report of the Special Rapporteur on torture and other cruel, inhuman or degrading treatment or punishment, Manfred Nowak, A/HRC/10/44, January 14, 2009, http://www2.ohchr.org/english/bodies/hrcouncil/docs/10session/A.HRC.10.44AEV.pdf (accessed May 15, 2015) para. 72.

[179] Human Rights Council, Report of the Special Rapporteur on torture and other cruel, inhuman or degrading treatment or punishment, Juan E. Méndez, A/HRC/22/53, February 1, 2013, para. 54, http://www.ohchr.org/Documents/HRBodies/HRCouncil/RegularSession/Session22/A.HRC.22.53_English.pdf (accessed March 8, 2017).

Posted: January 1, 1970, 12:00 am

The Detention and Deportation of Californian Parents

On the morning of February 28, 2017 Romulo Avelica-Gonzalez pulled up to Academia Avance, a mall charter academy in Highland Park, CA, to drop off two of his daughters at school. After dropping off one daughter, Romulo was pulled over by Immigration and Customs Enforcement (ICE) agents, who were unaware that 13-year-old Fatima was still in the backseat. Over uncontrollable sobs, Fatima filmed the arrest of her father with her cellphone.

Romulo Avelica Gonzalez with his daughters. 

Image courtesy of the National Day Laborer Organizing Network.

Avelica-Gonzalez had a DUI charge from eight years ago and he was once charged with driving without a license. He also purchased a used car nearly 20 years ago, without knowing it bore a registration sticker that had been stolen from another car, The Intercept reported.[1] He has lived in the United States for 25 years, and is the father of four US citizen children.

He is one of thousands of Californian parents of US citizens who are now much more vulnerable to detention and deportation under President Trump’s vastly expanded “priorities” for deportation. Those priorities potentially make nearly all 11 million undocumented immigrants “priority” targets for deportation—setting the stage for what could well be a nationwide dragnet that would harm millions of people.[2]

The California legislature is currently considering several initiatives that could help to mitigate the harms of immigration detention and protect Californian families. These initiatives would strive to make detention conditions more humane and would ensure that detained immigrants receive assistance from state-appointed attorneys. Some policymakers are seeking to limit such legal assistance based on assumptions about who these immigrant detainees are, particularly those with some kind of criminal history.

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Immigration authorities detain noncitizens in 10 main California immigration detention facilities, which housed a total average daily population of 4,594, according to government data through December 5, 2015. In addition to these main facilities, detainees may be placed under ICE detainers and held in other facilities before being transferred to a main immigration detention facility. Between October 1, 2014 and June 30, 2015, ICE detainees were held, at least temporarily, in more than 50 facilities throughout the state.

The purpose of the analysis set forth in this paper is to provide more detailed information on immigration detention in the state, with the goal of helping prompt better, more rights-respecting reforms. A key finding is our estimate that more than 10,000 parents of US citizens are detained in California each year. Another is that nearly half of the detainees had no criminal histories and that, among those with criminal records, those convicted of relatively minor non-violent offenses (such as immigration offenses, drug use or possession, or DUI) outnumbered those convicted of violent felonies by nearly three to one.

The analysis here draws from data on immigration detainees held in California for the four-and-a-half year period from January 1, 2011 to June 30, 2015 (equivalent data on more recent periods was not available at time of the assessment), with a particularly detailed look at data from October 1, 2014 to June 30, 2015, the only portion of the period for which records generally included information as to whether the detainees had US citizen children. Our analysis reveals that California’s sprawling system held 15 percent of the immigrants detained nationwide during the period, and, as noted above, it suggests that tens of thousands of those detained in recent years were parents of US citizen children and that most detainees with criminal histories were convicted of relatively minor offenses. Given the Trump administration’s stated intention to ramp up enforcement efforts, this data provides a grim baseline, demonstrating the imperative of efforts to ensure fair deportation procedures and humane and dignified conditions for people held in immigration detention in California.[3]

“We’re not supposed to be separated from our parents,” Brenda Avelica, Romulo Avelica-Gonzalez’s 24-year old daughter told The Intercept. “Now it’s, like, where you at. I still need you.”[4]

 

Who is being detained?

Between January 1, 2011 and June 30, 2015, 292,221 adults entered ICE detention facilities in California, an average of about 65,000 a year. This represents about 15 percent of the population of people detained by ICE nationally during that time period.[5] In November of last year, DHS officials said they were holding more than 41,000 people at that time in immigration detention facilities nationally, a record number.[6] The current national or statewide population is not publicly available.

Immigrants detained in California are people who for the most part are arrested inside the state or apprehended at the border.[7] No matter where someone is arrested they may have long-term ties to the state or face persecution in their country of origin, which under international standards should be carefully considered before deportation.[8]

The majority of detainees in our dataset entered detention in the San Diego and Los Angeles areas. About 40 percent enter detention in San Diego or nearby El Centro suggesting that many are being detained af ter crossing the border. Another 20 percent enter detention in Los Angeles. Other Southern California detention centers, for example in San Bernardino or Santa Ana, also account for a large proportion of the initial facilities in which people are detained.

The majority (55 percent) of ICE detentions in California during the time our dataset covers ended in deportation.[9] Another 7 percent leave through a “voluntary return or departure.”[10] A recent study found that 68 percent of detained immigrants in California are unrepresented by counsel and that detained immigrants who had counsel prevailed in their cases more than five times as often as did their unrepresented counterparts.[11]

The time that detainees spend in detention varies greatly. While 84 percent of people in our dataset spent less than one month in detention, 8,298 spent more than 6 months and 1,787 spent more than a year. Most—64 percent—of the people who are held for under a month are released or removed within one day. Only one out of ten detainees in our dataset bonded out of detention. Though our data does not show who is or is not represented by counsel, a recent study of immigration bond hearings in California found that the odds of being granted bond are more than 3.5 times higher for detainees represented by attorneys than those who appeared pro se, net of other relevant factors.[12]

Human Rights Watch estimated whether California immigration detainees were parents of US citizen children by examining data for all immigration detainees held in California between October 1, 2014 and June 30, 2015, the only part of the period in question for which the records generally included such information. Where information on US citizen children was not included, we used statistical methods to address the gaps.[13] In total, we estimate that slightly less than half (42 percent) of all non-citizens detained by ICE during that period in the state had at least one US citizen child. In the nine months analyzed, this amounts to more than 8,600 parents of US citizen children detained in California. At this rate—and assuming that the detainees held during this period were similar to detainees held during any other period—it is likely that more than 10,000 parents of US citizens are detained in California each year.

Our analysis also shows that parents of US citizen children were more likely than others to be deported from detention. We estimate that nearly 47 percent of the California detainees removed from the country had a US citizen child, while only 35 percent of people who were released from detention, rather than removed, had US citizen children.[14]

Immigrant Detainees and Crime

Polls show that a supermajority of Americans—90 percent according to a recent CNN survey—support legalizing and providing a path to citizenship for unauthorized migrants in the US.[15] President Trump’s deportation rhetoric sidesteps this constituency by promising to deport immigrants “that are criminal and have criminal records, gang members, drug dealers”—to which few are opposed.[16] However, data show that only a small minority of the “criminals” the US has detained and deported were convicted of serious crimes: most deportees with criminal histories had been charged or convicted of relatively minor crimes such as offenses involving immigration, drug use or possession, or DUI. Instead of focusing on violent criminals, US immigration policy has ripped apart American families and communities through the deportation of large numbers of lawful residents and undocumented immigrants with less serious criminal histories. The profiles of people deported from California reflect these national trends.

Immigrants, especially those with criminal convictions, often have US citizen and permanent resident family members. These family members can be devastated by detention and separation from their loved ones.[17] The people with criminal histories in California’s immigration detention centers are often people with non-violent criminal histories or with unclear histories that can be better understood only with the help of an attorney. Furthermore, many of these people are Californians with long histories of presence in the state, with strong ties to California families and communities, and with US citizen family members. As an immigrant’s ties to the state grow, so does their tendency to look like other Californians, including the many US citizen residents of California who have criminal records.

In our data, criminal history information was included for people detained between October 1, 2014 and June 30, 2015. Nearly half—47 percent—of the people detained during this period had no criminal history. Based on the broad categorizations provided by ICE, we estimate that 9 percent of detainees could be identified as convicted of a violent felony as defined in California law.[18] Most of the rest—27 percent—had criminal histories that were relatively minor, with offenses involving immigration, drug use or possession, or DUI as their most serious crime. (The remaining 17 percent had criminal histories that were unclear.) Those convicted of relatively minor offenses thus outnumbered those convicted of felonies by nearly three to one.

Most of those with criminal histories, moreover, had committed no crimes in recent years. On average, the most recent conviction had occurred nearly seven years prior to being detained by immigration. The most recent criminal conviction for over half (51 percent) of all detainees with a criminal history was over five years old. Nearly a quarter (24 percent) of detainees with criminal records had a conviction over 10 years old.

In the 2011-2015 California data on immigration detainees, having a criminal history also correlated with having US citizen children, likely a reflection of how long people had lived in the US: the longer people live in the country, the more likely they will become parents of US citizen children and will have some type of criminal record, however minor. In fact, 11 percent of people with no criminal history in our data had a US citizen child, while 77 percent of people with criminal convictions had a US citizen child.

Simon Rodriguez, 2, waves U.S. flags during a protest march to demand immigration reform in Los Angeles, California on October 5, 2013. 

© 2013 Lucy Nicholson/Reuters

While this data suggests that people in immigration detention who have spent the longest time in the US are more likely to have criminal convictions, it is important to note that a long series of studies have found that immigrants in the United States are less prone to commit crime than people born here.[19] People with criminal convictions in immigration detention have served their sentences and paid their debt to society. They are also likely to be people who came to the country as children, or who have lived in the state for many years. They are likely to be people with the strongest ties to California’s communities and families, and the most likely to have serious concerns about the harm that they and their loved ones are likely to suffer from immigration detention and deportation.

 

[1] Leighton Akio Woodhouse, Video: 13-Year-Old Who Filmed Father’s Arrest by ICE Struggles With His Absence, The Intercept, https://theintercept.com/2017/03/08/video-13-year-old-who-filmed-fathers-arrest-by-ice-struggles-with-his-absence/ (accessed May 1, 2017).

[2] For analysis of Trump’s immigration and border enforcement executive actions and Department of Homeland Security memos, see Human Rights Watch, Questions and Answers: The Trump Administration’s Immigration Enforcement Memos, March 2, 2017, https://www.hrw.org/news/2017/03/02/questions-and-answers-trump-administrations-immigration-enforcement-memos.

[3] Senate Bill 29 would prohibit California cities and counties from renewing or entering into new contracts with for-profit detention companies and require local jails to meet specific civil detention standards when holding immigrants, including standards on access to legal services, medical care, freedom from harm or harassment, and privacy. It would also prohibit an immigration detention facility from involuntarily placing a detainee in segregated housing because of his or her actual or perceived gender, gender identity, gender expression, or sexual orientation. A budget allocation being discussed in the California state assembly would allocate state funds to providing lawyers for people in immigration detention in California.

[4] Leighton Akio Woodhouse, Video: 13-Year-Old Who Filmed Father’s Arrest by ICE Struggles With His Absence, The Intercept, March 8, 2017.

[5] This report analyzes datasets obtained from US Immigration and Customs Enforcement pursuant to Freedom of Information Act requests that track both transfers within immigration detention and releases from detention. They function as a record of who was detained in each ICE facility on any given day. From 2011-2014, the data provides dates of admission, transfer and release, along with facility information. From October 2014 to June 2015, the data includes information about whether detainees were the parents of US citizen children. These datasets provide a snapshot of the detention and deportation system at a macroscopic and microscopic level. We can track where and when people enter the system, flow through the system and finally leave the system through removal or other type of release. We can track which detainees were held in which facilities and for how long they were held in each facility, as well as the length of their entire detention.

[6] Lauren Etter, “Record Numbers of Undocumented Immigrants Being Detained in U.S.,” Bloomberg News, November 10, 2016, https://www.bloomberg.com/news/articles/2016-11-10/record-numbers-of-undocumented-immigrants-being-detained-in-u-s (accessed May 1, 2017).

[7] A small number of detainees were transferred into detention in California after being apprehended or detained in other states.

[8] Human Rights Watch has previously found that in 2011 and 2012, 101,900 migrants apprehended at the border – about 15 percent – were a parent of a US citizen child. Human Rights Watch, Border Enforcement Policies Ensnare Parents of US Citizen Children,” January 8, 2015, https://www.hrw.org/news/2015/01/08/border-enforcement-policies-ensnare-parents-us-citizen-children.

[9] A number of people were still in custody on the last date of each dataset. These detainees were not included when computing percentages.

[10] The remaining detainees were released from detention in other ways such as on bond or the own recognizance. The data does not allow for tracking these detainees to determine which ones were eventually returned to detention and/or deported.

[11] The California Coalition for Universal Representation, “California’s Due Process Crisis: Access to Legal Counsel for Detained Immigrants, June 2016, http://www.publiccounsel.org/tools/assets/files/0783.pdf (accessed May 1, 2017).

[12] Emily Ryo, “Detained: A Study of Immigration Bond Hearings,” 50 Law and Society Review 117, 119 (2016).

[13] The variable for number and citizenship of children is not a mandatory field within ICE data and therefore much of the data is missing. It is unknown how many of the entries are missing because the detainee did not have children or whether ICE staff never entered data. There are many detentions where staff entered “None” in the child variable, so some staff do enter the data even when there are no children. To compound concern, the ambiguity around the data, the level of completeness of the variable, varies greatly by ICE area of responsibility (AOR) and facility. The St. Paul-Minneapolis AOR included the child variable in 39 percent of entries, while the Newark AOR only included it in 14 percent of entries. In California, the data was present in 20 percent of cases. Nonetheless, it is the only data available to begin to estimate the number of US citizen children of detainees. Human Rights Watch first had to normalize or “canonicalize” the child variable. It is an open-entry variable where ICE officials type in the entry. Therefore, the child variable contains numerous misspellings and varieties of ways agents entered the same information. For 64,900 detainees, there were 7,198 unique values of this variable that were reduced to determine whether the entry stated the detainee had a US citizen child. After canonicalization, Human Rights Watch used missing data imputation with a logistic regression method to estimate the probability that those entries without data may have had children. Detentions in each ICE area of responsibility were imputed separately. In other words, detainees were modeled only against others detained in the same area. Gender, age, nationality, marital status, initial intake date, whether a final order had been issued, and release reason were the variables used in the model. First, the variables were used to estimate a predicted probability of whether data was missing at all. This value was then used as the weight in the regression model predicting US citizen children. The results were then compared to the only public data on the subject, ICE’s report to Congress on deportations of US citizen children, and the model was adjusted accordingly. The model was allowed to mark a detainee as having a US citizen child if the predicted probability was .794, which produced figures comparable to ICE’s report on final orders issued and total number of parents removed.

Detention stays for 3,482 people were removed from FY 2015 data because ICE did not provide rows for the initial detention stays for these individuals.

[14] Conversely, 63 percent of detained parents of US citizen children were deported compared with 50 percent of those who did not have US citizen children.

[15] CNN/ORC International Poll released March 17, 2017, http://i2.cdn.turner.com/cnn/2017/images/03/17/rel4g.-.immigration.pdf (accessed May 10, 2017).

[16] Amy B. Wang, “Donald Trump plans to immediately deport 2 million to 3 million undocumented immigrants,” Washington Post, November 14, 2016, https://www.washingtonpost.com/news/the-fix/wp/2016/11/13/donald-trump-plans-to-immediately-deport-2-to-3-million-undocumented-immigrants/?utm_term=.5d5f7078cd4a (accessed, May 1, 2017).

[17] See Human Rights Watch, Torn Apart, January 2015, http://features.hrw.org/features/Torn_Apart_US_immigration_reform_2014/.

[18] ICE provided crime data as a description of the conviction offense rather than as a reference to penal or criminal code provision. Human Rights Watch coded each of these descriptions as included, potentially included, or not included within the ambit of California Penal Code section 667.5(c), which covers violent felonies. We also coded offenses into general offense categories including violent or potentially violent drug sale, drug use or possession, and immigration. Because ICE crime categorizations are broad, it was impossible to rule out the possibility that particular convictions fell within the ambit of section 667.5(c). Those whose convictions were potentially but not definitely within section 667.5(c) made up 16 percent of the population over the 9 months for which we have data.

[19] Kristin F. Butcher, Anne Morrison Piehl, “Why are Immigrants Incarceration Rates so Low? Evidence on Selective Immigration, Deterrence and Deportation,” National Bureau of Economic Research, July 2007, http://www.nber.org/papers/w13229.pdf (accessed, May 1, 2017).

Author: Human Rights Watch, Human Rights Watch
Posted: January 1, 1970, 12:00 am

Wastewater and garbage are dumped straight into the river Capibaribe in a slum in the Coelhos neighborhood of Recife, Brazil. October 15, 2016.

© 2016 César Muñoz Acebes/Human Rights Watch

Brazil’s public health emergency related to the Zika virus is over, the country’s health ministry said yesterday.

But we should not declare victory over the mosquito-borne virus.

The announcement came 18 months after the government first declared Zika a national emergency, as increasing numbers of infants were born with microcephaly – a condition when the head and brain are underdeveloped – and other complications, together now known as Zika syndrome.

This year the number of Zika cases, and the number of infants born with disabilities linked to the virus, have dropped dramatically. No one is entirely sure why. There may be growing immunity in the population; the weather was drier; and efforts by federal, state, and local authorities to eradicate the Aedes species mosquito, which transmits the virus, may have also helped.

But the Zika threat is not gone. In fact, the underlying conditions that allowed the outbreak to escalate in Brazil remain unaddressed. 

Lindacema Maria de Lima lives in a shack without any sanitation services and can only access water from one tap in a slum in Recife, Brazil. October 18, 2016. 

© 2016 César Muñoz Acebes/Human Rights Watch

The Aedes species mosquito is still present in Brazil, and still carries Zika and other serious viruses. Dengue and chikungunya, also spread by the Aedes mosquito, have flared up over the past few years and remain a constant threat. To understand how bad this could get, look no further than Brazil’s terrifying outbreak of yellow fever, which can be spread by the same mosquito and has already killed at least 240 people since December.

Longstanding problems with water and sanitation infrastructure leave communities vulnerable to Zika outbreaks and other mosquito-borne diseases. Brazilian authorities have not invested enough in water and wastewater systems, leaving many communities at risk. Droughts in the northeast are exacerbating the situation, as whole communities lose access to reliable running water, and have no choice but to store water in containers, inadvertently creating potential mosquito breeding grounds.

We also shouldn’t forget the thousands of children with Zika syndrome and their caregivers who will need long-term support and care. Many families raising children affected by the virus face difficulties buying expensive medicine, and find it impossible to hold down jobs while spending hours each week traveling to urban centers so their children can get services.

There is a danger that, because of yesterday’s announcement, Brazilians and the international community will breathe a sigh of relief and forget about the issue. Instead, they should address the structural failures that helped create the Zika crisis in the first place. 

 

 

Author: Human Rights Watch
Posted: January 1, 1970, 12:00 am

Immigration authorities detain noncitizens in 10 main California immigration detention facilities, which housed a total average daily population of 4,594, according to government data through December 5, 2015. In addition to these main facilities, detainees may be placed under ICE detainers and held in other facilities before being transferred to a main immigration detention facility. Between October 1, 2014 and June 30, 2015, ICE detainees were held, at least temporarily, in more than 50 facilities throughout the state.

Posted: January 1, 1970, 12:00 am