(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

French President Emmanuel Macron waits for a guest outside the Elysee Palace in Paris, France, September 15, 2017. 

© 2017 Reuters

Today, in front of the United Nations General Assembly, French President Emmanuel Macron is set to launch the Global Pact for the Environment. Its primary aim is to bolster international efforts to protect the environment from climate change, pollution, and other threats, but it would also help codify and strengthen important human rights protections. Most importantly, the pact would expressly require states to protect the right to a healthy environment.

The right to a healthy environment is embraced in the pact’s very first article – and with good reason. Our health, survival, and general wellbeing are bound to a healthy environment. Just last week, the UN expert on toxic waste and human rights admonished the UK government for dangerous levels of air pollution, saying that it “continues to flout its duty to ensure adequate air quality and protect the rights to life and health of its citizens.” Air pollution affects the health of millions of people around the world living in major urban areas, with more people dying prematurely each year due to pollution than from malaria and HIV combined.

But a healthy environment goes beyond air pollution. In Kosovo, we documented how the UN’s decisions to locate camps for displaced Roma on lead-contaminated sites left Roma, Ashkali, and Egyptian minorities with large medical bills and concerned about their children’s health and ability to concentrate in school. In Kenya, climate change has affected communities’ sources of food, water, and livelihoods.

Similar stories in Malawi, Bangladesh, and Thailand show how an unhealthy environment can undermine a broad range of human rights, including the rights to life, health, water, food, housing, and sanitation, among others. It is precisely because the environment underpins so many rights and almost every aspect of the human experience that a globally recognized right to a healthy environment is so important. 

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

The Rehabilitation Center at Hollywood Hills is seen in Hollywood, north of Miami, Florida, U.S., September 13, 2017.

© 2017 Reuters

After spending the past year visiting more than 100 nursing homes across the United States, I am sickened but not surprised to hear of the avoidable horrors people in facilities in Florida and Texas have suffered from hurricanes Harvey and Irma: most recently eight dead near Miami. Even on normal days many people in nursing homes face grave risks.

While my research focused on the use of antipsychotic drugs in people with dementia as “chemical straightjackets,” I encountered other types of abuse and neglect in many of the 109 facilities I visited. Residents and their families described abuse, isolation, and repeated falls. On one unannounced visit, I encountered an older man helplessly splayed on the floor, naked – as staff walked by with food trays. One simply said, “Again?”

Many who work in nursing homes are dedicated, skilled professionals. However, they control most aspects of life for people inside, which can be a real danger when government oversight is inadequate (as it usually is). As one nursing home administrator in Miami told me: “That’s up to us to decide if we’re violating their rights.”

The facility outside Miami where eight residents died last week has been cited for 33 deficiencies since 2014 for noncompliance with federal regulations. The sheer number of those citations seems to show that these tags and small associated fines have not deterred the facility from further noncompliance. Meanwhile the industry is lobbying for deregulation and weaker enforcement of such regulations. It has successfully pushed for lesser financial penalties to attach for many instances of noncompliance with the law and is pressing for delayed implementation of Obama-era regulations that will strengthen protections for people in nursing facilities. As the New York Times points out, the new rule includes measures that might have saved lives last week: ensuring emergency power sources are able to maintain safe temperatures, for example.

Harvey and Irma have underscored the importance of protecting people who live in nursing facilities. Instead of caving to lobbyists and dismantling critical regulations, the Centers for Medicare & Medicaid Services should improve enforcement so that no more people in nursing homes end up dying for no good reason. 

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

A group of Doctors meet in the University of Mississippi Medical Center in Jackson, Mississippi October 4, 2013. 

© 2013 Reuters

“As pediatricians, pediatric medical subspecialists and pediatric surgical specialists, we care about the health and dignity of all children,” the American Academy of Pediatrics (AAP) wrote in response to a report on intersex youth that Human Rights Watch launched in July.

This weekend, as the AAP, an organization of 66,000 pediatricians across the United States, convenes in Chicago for their annual gathering, we urge members to stand by this commitment and discuss establishing clear AAP guidelines to protect intersex kids across the country.

Intersex people – whose chromosomes, gonads, and sex organs don’t match up with what is generally considered typically “female” or “male” – make up nearly two percent of the human population.

One of the reasons we hear so little about intersex people is that doctors often perform surgery on them when they are still infants to make their bodies appear more unambiguously “female” or “male.” Some physicians argue that the irreversible interventions make it easier for kids to grow up “normal” or avoid bullying or harassment. But the results are often catastrophic, and the supposed benefits largely unproven. It is rare that urgent health considerations require immediate, irreversible intervention.

One of the many risks of doctors operating on children’s gonads, internal sex organs, and genitals when they are too young to participate in the decision is that a sex is assigned that does not match the individual’s lived gender identity as it develops. Other risks include incontinence, sterilization, loss of sexual sensation, scarring, and psychological trauma.

In our report, we recommended the AAP develop a policy on medically unnecessary and non-consensual surgeries on intersex children that is consistent with APP standards on Assent, Informed Permission and Consent, and on female genital mutilation.

Chicago’s LGBT center, the Center on Halsted, has welcomed the AAP to the city and encouraged them to endorse a moratorium on medically unnecessary surgeries on intersex kids. Human Rights Watch and interACT are joined by United Nations experts, the World Health Organization, Amnesty International, every major LGBT legal organization in the US, three former US surgeons general, and intersex-led organizations around the world in calling for an end to medically unnecessary non-consensual surgeries on intersex kids. The American Medical Association Board of Trustees this year recommended respect for intersex children’s rights to autonomy and informed consent.

It’s time for the AAP to do the same. 

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

A two-and-a-half-year old born with intersex traits walks with her parents in their garden. The parents have decided to defer all medically unnecessary surgeries until their child can decide for herself.

© 2017 Human Rights Watch

Earlier this year, some leading specialist pediatricians told me that they routinely advise parents of infants to consider surgery on their baby’s sex organs to decrease suicide risk later in life. The claim is not based in medical data, and it’s unethical for a doctor to offer an understandably confused and concerned new parent irreversible and entirely non-urgent surgery to avert a hypothetical future harm.

So why is it happening?

I spent the past year interviewing intersex adults, parents of intersex kids, and doctors who specialize in treating them. Once called “hermaphrodites,” intersex people make up nearly 2 percent of the population—their chromosomes, gonads, and sex organs don’t match up with what we consider typically male or female. One of the reasons we hear so little about intersex people is that based on a now-invalidated medical theory popularized in the 1960s, doctors often perform surgery on them in infancy. They generally say the goal is to make it easier for kids to grow up “normal.” But as our recent report showed, the results are often catastrophic, the supposed benefits are largely unproven, and there are rarely urgent health considerations requiring immediate, irreversible intervention. One of the many risks of surgery is assigning the wrong gender.

“It is harmful to make sex assignments based on characteristics other than gender identity,” Dr. Deanna Adkins, the director of the Duke University Center for Child and Adolescent Gender Care testified in a North Carolina court: “[I]n cases where surgery was done prior to the ability of the child to understand and express their gender identity, there has been significant distress in these individuals.”

A groundswell is taking place right now to put an end to the risks Dr. Adkins points out.

My organization, Human Rights Watch, is joined by the United Nations, the World Health Organization, Amnesty International, every major LGBT legal organization in the US, three former US surgeons general, and all intersex-led organizations around the world in calling for an end to medically unnecessary non-consensual surgeries on intersex kids. The American Medical Association Board of Trustees this year recommended respect for intersex children’s rights to autonomy and informed consent.

But some physicians refuse to accept that the status quo is harmful.

Today, on Suicide Prevention Day, the interviews with the two doctors who advocated early surgery are ringing in my ears.

One pediatric urologist acknowledged that it was possible to raise a child as either gender without surgery. But, citing transgender suicide attempt rates, he said: that if he were to abstain from sex assignment surgery on intersex children, it would result in “97 percent of [his patients having] gender dysphoria.” He said this puts him in a difficult position. He explained: “That carries a 40 percent risk of suicide. Not thinking about suicide. Suicide. Actually doing it, or trying to do it. That is an astoundingly large number…So that's a hell of a burden.”

To suggest that sex assignment surgery on an intersex kid saves them from a future suicide attempt is not only intellectually dishonest, but it skirts the actual issue.

First, while the fear of harassment of their children is a legitimate and palpable experience for all parents, surgical operations on intersex children have never been demonstrated to prevent bullying. True, data show that transgender people in the US carry a 41 percent risk of a suicide attempt in their lifetime, compared with 4.6 percent of the overall US population. But the risk is driven by factors that include discrimination and harassment—and in some cases ill-treatment by doctors— not by whether their genitals match their gender identity.

Second, performing surgery on intersex kids does not ensure their genitals will match their identity. Studies have found rates of gender assignment rejection among intersex children ranging from 5 to 40 percent, depending on the condition. Contrary to that urologist’s assertion that leaving his intersex patients intact would cause gender dysphoria, irreversible surgery may leave them with bodies that don’t match their identities.

Third, children should have the right to negotiate these complex social dynamics for themselves as they grow, and decide when and whether to have surgery—instead of having these decisions forced upon them. A recent investigative report from the Dominican Republic, where most intersex kids are left intact, showed that social awareness, and parent and teacher response help mitigate bullying —as with any other kid.

It is indeed a hell of a burden—but not for the doctor.

Rather it’s a burden on the parents of intersex kids who told me they felt bullied by doctors into choosing these high-risk cosmetic surgeries. And it’s a burden for the kid who will grow up permanently physically scarred and thinking of their body as shameful, in need of “fixing” by a scalpel.

Intersex kids deserve better—especially from doctors who specialize in their care. And no parent should have to wonder if a pediatrician is telling the truth.

We need to outlaw these surgeries on kids too young to decide for themselves that they want them—except in instances of true, data-driven medical need—to protect children from harm that can endure for the rest of their lives. It would protect parents from the mendacious wordplay that continues in clinics today. And it would allow intersex kids to thrive and get support when they need it.

As a father of a two-year-old with an intersex condition told me: “The world can be a hard place for people who are different and I am not naive to the fact that this could create some social difficulties for my daughter.” He and his wife visited multiple specialists, many of whom threatened social outcomes based on hypothetical understandings of what it might be like to grow up with a body that’s a little different from most people’s. The father said: “I don't think the solution is to subject her to anesthesia and perform a surgery, without her consent, that's irreversible.”

Parents are looking for medical advice from providers charged with interpreting data and protecting life and limb. Certainly it’s not a burden for doctors to avoid frightening parents with incomplete and inaccurate information.

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

Roma children play in the Cesmin Lug refugee camp in Mitrovica city, northern Kosovo. Cesmin Lug is one of several camps that the UN established in what was known to be a heavily contaminated area near a defunct lead mine. December 12, 2007. 

© 2007 Carsten Koall/Getty Images
(New York, September 7, 2017) – The United Nations’ failure to compensate victims of widespread lead poisoning at UN-run camps in Kosovo has left affected families struggling to care for sick relatives who were exposed to the contamination, Human Rights Watch said today.

About 8,000 people from the Roma, Ashkali, and Egyptian minorities were forced from their homes in Mitrovica town after the 1998-1999 Kosovo war. For more than a decade, the UN – Kosovo’s then-de facto government – resettled about 600 of them in camps contaminated by lead from a nearby industrial mine. In 2016, a UN human rights advisory panel found that the United Nations Interim Administration Mission in Kosovo (UNMIK) had violated the affected people’s rights to life and health. It said that UNMIK “was made aware of the health risks [camp residents] had been exposed to since November 2000,” yet failed to relocate them to a safe environment until more than 10 years later and recommended it apologize and pay individual compensation.

Despite the human rights panel’s recommendations, the UN announced in May 2017 that it would create only a voluntary trust fund for community assistance projects to help “more broadly the Roma, Ashkali and Egyptian communities” – staying short of a public apology or acceptance of responsibility.

“The UN should stop ignoring its own experts’ sound advice and compensate the people who are experiencing lifelong damage and hardship due to the UN’s shortcomings,” said Katharina Rall, environment researcher at Human Rights Watch. “How can the UN expect to effectively press governments to take responsibility for their abuses if it won’t do the right thing for the harm it caused?”

The United Nations’ failure to compensate victims of widespread lead poisoning at UN-run camps in Kosovo has left affected families struggling to care for sick relatives who were exposed to the contamination.

In June, Human Rights Watch interviewed 19 victims of lead poisoning and family members who had lived in UN-run camps, as well as medical practitioners, lawyers, and organizations supporting the affected communities.

Human Rights Watch found that many of those affected, including children, are experiencing myriad health problems, including seizures, kidney disease, and memory loss – all common long-term effects of lead poisoning. Lead is highly toxic and can impair the body’s neurological, biological, and cognitive functions. Children and pregnant women are particularly at risk. A 33-year-old woman who lived in a contaminated camp and then relocated to the Roma district of Mitrovica town said she worries about her 16-year-old son, who was 9 months old when he tested positive for lead poisoning: “Until he was 7 he experienced regular seizures. Today he … is struggling at school. He is often nervous and has a hard time remembering things. As a mother, it is very difficult for me to see my children in this condition and not be able to help.”

The UN’s Human Rights Advisory Panel investigated complaints of human rights violations by UNMIK, which governed Kosovo after 1999. The panel found violations of several human rights, including the rights to life, health, and nondiscrimination. The announcement by the press office of UN Secretary-General Antonio Guterres in May that the UN would create a voluntary trust fund rather than compensate individual victims means that no action will be taken unless UN member states choose to donate to the fund, making any timely redress for victims highly uncertain.

In July 2017, Guterres called upon the member states to support the trust fund in order to address “the most pressing needs of the affected communities.” While the UN said it “is making every effort to mobilize resources,” it offered no details on whether any governments have committed money to the fund.

The UN decided in 2016 to set up a similar trust fund for Haiti to raise US$400 million to provide “material assistance” and treat and eliminate cholera – which killed more than 9,000 Haitians and made a further 800,000 sick. The epidemic was traced to UN peacekeepers who arrived in the country after its devastating 2010 earthquake. But as of now, the fund has secured just US$2.7 million, less than 1 percent of its target.

“Creating an unfunded trust fund to compensate victims is like giving someone an empty bank account to rebuild their life,” Rall said. “Here, as in Haiti, it is the victims of UN negligence who are stuck with the bill and who have no access to justice or remedy.”

Creating an unfunded trust fund to compensate victims is like giving someone an empty bank account to try to rebuild their life.

Katharina Rall

Environment researcher

Under international human rights law, the right to a remedy requires individual compensation to victims for material and moral damage. The UN has repeatedly committed to providing such compensation in treaties, General Assembly resolutions, and secretary-general reports. In Kosovo, however, UNMIK passed laws to try to grant itself immunity from legal and human rights complaints, even though it was Kosovo’s de facto government.

The secretary-general’s May statement promising only community assistance projects means that at best, any money paid into the fund will provide general services that do not specifically benefit the people affected by lead poisoning and will not directly offset the harm caused. The UN’s decision to set up a trust fund instead of paying affected individuals compensation and accepting its responsibility for the long-term impact of lead poisoning leaves many families struggling to care for sick relatives who were exposed to the contamination. “Nobody cares about the 12, 13 years we have suffered in the camps,” said a former leader of one camp in Cesmin Lug. “Nobody asks, ‘How is your child doing? Has he healed? Does he have any problems, any impairment?’”

Many Roma, Ashkali, and Egyptian families interviewed in northern Kosovo need financial and social support. Some parents said that they cannot afford medicine or healthy food for their affected children. Other families expressed despair about the lack of support services for children struggling at school with learning difficulties related to the lead contamination.

Hazbije (right), a 50-year-old mother of nine, said her husband died two years ago, leaving her to care for their children alone. Mitrovica, June 27, 2017.

© 2017 Human Rights Watch
Samir H., a 40-year-old father of nine children who lived in contaminated camps in Zitcovac and Osterode, said: “My second-born was sent to Serbia for treatment at a hospital because his lead levels were so high…. Afterward we were told that he should take medicines to treat seizures. We had to pay for it from our money and it was hard. Today he is still very nervous.… He is not a good student because he cannot remember things…. We need to take care of him because there is no support from the school.”

Medical experts interviewed voiced concern about the lack of continuous lead testing and support for affected communities. As far as Human Rights Watch has been able to determine, recent lead testing and treatment funded by the Danish Refugee Council were limited in scope and stopped in May 2017 due to lack of available test kits.

The UN should pay individual compensation to those affected by lead contamination, allowing them to address the long-term impact of lead exposure. Parents also asked the UN to provide good health care and education to all affected children, essential services that are not available to many of the child victims. The UN should also work with the government of Kosovo and victims’ advocates to ensure that all the affected people receive adequate health care and children receive the support they need to realize their right to education.

“Kosovo, once run by the UN, is one of the places where it can make a big difference,” Rall said. “The UN should follow the recommendations of its own experts and give victims and their families the individual compensation they rightfully deserve.”

Lack of UN Accountability for Lead Poisoning in Kosovo

Timeline

1999: Roma, Ashkali, and Egyptian communities are resettled into contaminated camps by the UN

2000: Internal UNMIK report shows lead contamination in area and blood tests of population

2004: WHO conducts blood tests in camps and urges UNMIK to immediately evacuate children and pregnant women from the camps

2010: UNMIK starts moving people away from contaminated area

2013: Last camp closes

2016: Human Rights Advisory Panel releases opinion recommending that UN issues public apology and pay victims compensation

May 2017: UN secretary-general announces the creation of a voluntary trust fund for community assistance projects to help “more broadly the Roma, Ashkali and Egyptian communities” – staying short of individual compensation

In June 1999 – after the NATO bombing of Yugoslavia ceased and the Kosovo war ended – some members of the ethnic Albanian armed group, the Kosovo Liberation Army, and civilians carried out widespread burning and looting of homes belonging to Serbs, Roma, and other minorities, including in the Roma Mahalla, the Roma district in the northern city of Mitrovica. Kosovo had just come under the control of UNMIK, the de facto civil government, and NATO forces were on the ground. The district was looted and burned to the ground. Its 8,000 inhabitants fled. Starting in September 1999, the UN resettled several hundreds of these people in two camps, Zitkovac and Cesmin Lug, in what was known to be a heavily contaminated area near a defunct lead mine.

Three additional camps were established – Leposavic in 1999, Kablare in 2001, and Osterode in 2006. The high levels of toxicity in areas surrounding the Trepca mine complex had been documented by scientific studies since the 1970s and were confirmed by an UNMIK report in 2000. In 2014, the World Health Organization (WHO) conducted blood tests in affected communities and urged UNMIK to immediately evacuate children and pregnant women from the camps. Despite these warnings, all but one of the camps were built in close proximity to the slagheaps. The camps were originally intended to be temporary, yet it took the UN more than 14 years to close the last one, in December 2013.

Starting in the early 2000s, local and international activists began to raise concerns in the media about lead poisoning and sought to force action through legal challenges. A Human Rights Watch investigation in 2009 highlighted the long-term lead exposure to which camp residents were subjected. Irrevocable damage had been done by the time the UN closed the camps.

After many attempts by the victims to seek justice and compensation, including a legal complaint filed by Dianne Post, the Human Rights Advisory Panel found in 2016 that “UNMIK was responsible for compromising irreversibly the life, health and development potential of the complainants that were born and grew as children in the camps,” including by UNMIK’s failure to relocate them to a safe environment. The panel recommended that the UN apologize and pay lead poisoning victims individual compensation. However, in May 2017, UN Secretary-General Antonio Guterres’s press office announced that the UN would only create a voluntary trust fund for community assistance projects. No mention was made of any acknowledgement of responsibility or public apology.

Victims’ lawyers, Roma rights organizations, and UN accountability advocates criticized the UN’s decision not to pay individual compensation or to apologize publicly. Human Rights Watch urged Guterres to follow the advisory panel’s recommendations, both on the merits of this case and because refusing to take responsibility for the UN’s role in these abuses could undermine other UN efforts to hold member states to account for their abuses. In a June 8 letter to Guterres, former advisory panel members warned him that “at a time of backlash against human rights it is vital that the UN be seen to live up to the promise of the [UN] Charter and the obligations it has promoted.”

Long-Term Health Effects of Lead Poisoning

In June, Human Rights Watch interviewed 9 men and 10 women whose families, including more than 30 children, were affected by lead poisoning in the UN-run camps. The interviews were conducted in English or via an interpreter in Albanian or Serbian. Human Rights Watch also interviewed 10 medical providers, lawyers, and representatives of organizations providing support and services to Roma, Ashkali, and Egyptian communities. The interviews with victims took place in the Roma Mahalla, the Roma district in the city of Mitrovica, and at the homes of people who had relocated to other areas in northern Kosovo.

While the absence of consistent monitoring and testing can make it difficult to pinpoint the origin of individual illnesses, long-term effects of lead poisoning are well known. Children and pregnant women are particularly susceptible to lead poisoning. High levels of exposure in children can attack the brain and central nervous system to cause coma, convulsions, and even death. Pregnant women are at higher risk of miscarriage, stillbirth, and premature birth, and often pass on the absorbed lead to the fetus.

Symptoms can also include other physical and neurological conditions, such as anxiety, insomnia, anemia, memory loss, sudden behavioral changes, concentration difficulties, headaches, abdominal pains, fatigue, depression, hearing loss, seizures, kidney disease, and high blood pressure. The neurological and behavioral effects of lead are irreversible.

In interviews with Human Rights Watch, community members whose families formerly lived at the UN-run camps spoke about their deteriorating health. The poor and hazardous living conditions in the camps had a particularly negative impact on women and children, many of whom still experience health problems.

Sheribane M., a 45-year-old woman who lived in Zitkovac camp, said:

I have heart and kidney problems. I will get tired very quickly and need to lay down to rest a lot…. This started about three or four years ago. I tested positive for lead poisoning when we lived at the camps.

In its 2016 opinion, the UN expert panel found that women living in the camps “were subject to multiple discriminations in the enjoyments of their fundamental rights” – as women, as internally displaced people, and as members of the Roma, Ashkali, and Egyptian communities.

Several parents told Human Rights Watch that their children continued to have seizures or found it difficult to remember things at school. Samir H., a 40-year-old father of nine children, said: “Our three children who were affected by lead poisoning all have difficulties at school.”

According to WHO, no level of lead blood concentration is considered safe, and even lead levels as low as five micrograms per deciliter may result in serious health problems. The US Centers for Disease Control recommends that chelation therapy, treatment designed to remove lead from blood, should be considered when a child has a blood lead test result greater than or equal to 45 micrograms per deciliter.

“In some cases, the level of lead was so high that the measurement tool could not measure it, so above 45 micrograms per deciliter,” said Mikereme Nishliu, one of the doctors who performed lead testing in Mitrovica until 2013 for the humanitarian organization Mercy Corps. Some children tested in the camps and whose parents Human Rights Watch interviewed had lead levels higher than 65 micrograms per deciliter.

Lead poisoning victims and their parents reported that they have not been consistently examined, tested, or treated for lead-related diseases by the UN or the Kosovo government. Some of the families interviewed said that their children were only tested once at the camps and have not received any follow up testing or treatment.

Several international organizations and local service providers funded and provided small-scale testing for lead contamination and treatment by doctors and nurses several times between 2004 and 2017, focusing on children. However, children and pregnant women exposed to lead were not consistently tested over the years and the programs were discontinued due to a lack of funding or test kits. Nishliu, the doctor who performed the testing, said: “The children urgently need to be re-tested to ensure that the treatment works and that there is no new exposure.”

Victims in Need

Families of lead poisoning victims in northern Kosovo are often unable to get health care, adequate food, or other support for their children.

A 33-year-old mother who lived in the area, Elhame H., said: “If you don’t have money, the doctor will only give you the diagnosis, but you can’t buy the medication. Sometimes my husband collects paper and scrap metal to make some money. But he is also sick, so I tell him not to go. I can’t lose him.”

Some families try to get treatment in Serbia, where they believe health services are better and the medications are free. Merdjane H., a mother of six children, four of whom had lead poisoning, described the family’s problems in getting proper medical treatment: “We often do not go for exams because we cannot pay for the medicine anyway. We can get some medicine for free in Serbia but the round-trip costs €6.”

Families depending on social welfare said that they are often unable to pay for medicine for their children. Ilfete M., 69, was concerned about the health of four of her grandchildren born in the camps: “The children are not well. We try to provide good food, but we only have €170 (about US$200) for the entire month for the whole family. We need money to pay for the health care of our children.”

The long-term health effects place a particular burden on single parents. Hazbije H., a 50-year-old mother of nine, said her husband died two years ago, leaving her to care for the children alone: “Nobody is giving me any medicine for our kids. We’ve had no help with pills or injections, and nobody is helping with paying for tests. We can’t pay everything with social assistance.”

While the Kosovo government provides certain health services free, nearby health facilities in the Roma Mahalla cannot provide all the services people who have suffered from lead poisoning need, and often require patients to pay for medication. Many community members said they lived off limited social welfare or worked in low-income jobs, making it harder to pay for the services.

Muhamet I., a father of four children with lead poisoning, was disappointed that the efforts to move the communities back to the Roma Mahalla did not result in better access to health care: “There were many promises when we moved back to the Roma Mahalla. They said they would build a hospital but this never happened. We only have a small health center here, and they do not give us medicine there.”

Agnesa Jashari, a doctor employed at the Roma Mahalla health center, confirmed that the facility is not equipped to do blood exams and often lacks medication.

Several parents stated that their children had concentration problems and memory loss, causing learning difficulties. The absence of school support programs for children with lead poisoning made parents worry about their children’s chances of succeeding at school.

The lack of services and financial support often place parents in a state of emotional distress and constant worry about their children. Ali Q., 37, said his son’s lead levels in 2012 were as high as 58 micrograms per deciliter, requiring chelation therapy: “Who would leave his son like this if he could afford health care? But how can I get treatment for him without money?”

Victims Plead for Compensation and Support

Victims interviewed voiced hope that the UN will make an effort to compensate them.

Latif M., the former camp leader of Cesmin Lug, whose wife died and who cares for their five children, recalled that members of his community lived as displaced people under very difficult conditions in the camps. He believes that the UN should compensate people because it was responsible for the residents’ exposure to toxic lead: “They knew that the place was contaminated and they still built our barracks there. When they learned that the land was contaminated, they should have moved us from there much earlier ... instead of violating our rights.”

Elhame H., the 33-year-old mother with three children, said:

I want to be in a normal situation, just like everyone. My first request would be to improve the health of my children. I want them to be healthy and happy. I am not asking for much, I just want them to be healthy and happy.

The UN should work with the Kosovo government to ensure that anyone affected is tested and treated and that affected children receive the support they need to realize their right to education. The Kosovo government should make health care and medications accessible for affected families and ensure that testing and treatment of lead exposure continues. Schools in Kosovo should ensure that children affected by memory loss and concentration problems receive the support needed to realize their full right to education.

Naim M., a father of seven children, said: “I lost one of my daughters to lead poisoning and my other daughter and wife are sick now. We would need money to pay for the costs of their medical treatment.” Muhamet I., 37, hopes that his children can have a better future: “My request would be for the negotiations to continue for children to be re-tested, so that they can have better health.”

Posted: January 1, 1970, 12:00 am

The United States is in the midst of a public health crisis.  More than 59,000 people died of drug overdoses in 2016, an increase of nearly 20 percent from the previous year. According to the Centers for Disease Control, 91 people die of opioid-related overdose each day, mostly from prescription painkillers, heroin, and the potent synthetic drug fentanyl. However, overdose death is often preventable if the medication naloxone is administered in time.

The Human Rights Watch report “A Second Chance: Overdose Prevention, Naloxone and Human Rights in the United States” and accompanying video examine the barriers to wider availability of naloxone, and identify steps that federal and state governments should take to save thousands of lives.

Below are questions and answers that highlight the report’s key findings and recommendations. 

  1. What is Naloxone?
  2. Is naloxone a human rights issue?
  3. Is naloxone available in the US?
  4. What steps can be taken to make naloxone more available to those most likely to be at the scene of an overdose?

1.  What is Naloxone?

Naloxone is a safe, generic medication that can bring someone back to life if given in the early stages of an overdose. It works by binding to a person’s opioid receptors and displacing the opioids causing the overdose. Naloxone is available only as a prescription medication but is not a controlled substance. Easily administered by non-medical personnel, it carries no potential for abuse or misuse, and has no effect if given to someone who is not experiencing an overdose.

There is no evidence that naloxone availability increases drug use, and many programs that offer naloxone – such as syringe exchanges – have proven effective in bringing people into treatment programs.

Between 1996 and 2014, at least 30,000 overdoses have been reversed using naloxone; the real number is likely to be much higher as many cases go unreported. Naloxone is on the World Health Organization’s list of “essential medicines.”

For effective overdose prevention, the people likely to be first at the scene of an overdose – generally relatives, others who use drugs, and first responders – must have naloxone and know how to use it. Amid this nationwide public health crisis, access to naloxone is a critical lifeline. 

2. Is naloxone a human rights issue?

Yes. Everyone enjoys the right to health, including people who use drugs. Numerous international  agreements address what that means, including the Universal Declaration of Human Rights, the International Covenant on Civil and Political Rights and the International Covenant on Economic, Social and Cultural Rights. International bodies have specifically recognized the right of people who use drugs to comprehensive treatment and care, including overdose prevention, as a human right. 

3. Is naloxone available in the US?

All 50 states and the District of Columbia have recently taken steps to increase the availability of naloxone. These measures include permitting the medication to be prescribed and dispensed without the person at risk seeing a prescriber, through mechanisms known as third-party and standing order prescriptions. Most states have also passed overdose Good Samaritan laws that provide some protection from criminal liability for those who call 911 to report an overdose. The Human Rights Watch report on naloxone appendix identifies which states have passed these measures.

The federal government has made naloxone available through numerous initiatives, including Congressional funding for overdose prevention, support for law enforcement agencies to carry naloxone, and making access to naloxone a key part of the national drug control strategy. In its interim report President Donald Trump’s Commission on Combating Drug Addiction and the Opioid Crisis highlighted the importance of naloxone and made several proposals for increasing access, including requiring it to be prescribed along with all prescriptions for opioid pain medication and mandating law enforcement agencies to carry naloxone.

4. What steps can be taken to make naloxone more available to those most likely to be at the scene of an overdose?

In light of the current emergency, bolder action is necessary. Our report identifies three important steps that would widen naloxone availability in the US:

  • Reduce the cost: naloxone is a generic medication that is not expensive to make. In 2005, one injectable unit cost less than $1. Since 2008, the price has increased dramatically, and now ranges from $15 (injectable format) to $3,500 or more (auto-injector format), placing it out of reach of many individuals, community groups, and public agencies. Congress and the manufacturers of naloxone should act to ensure the affordability of this medication that prevents needless overdose deaths.
  • Decriminalize personal drug use and possession: criminal laws and the threat of arrest undermine a public health response to the opioid crisis in numerous ways, including limiting syringe exchange programs that are a prime site for distribution of naloxone to people who use drugs; reducing the willingness to call 911 or seek help of witnesses to an overdose; and promoting stigma and discrimination that keep people who use drugs from accessing health care services.
  • Grant naloxone over-the-counter status: because naloxone requires a prescription, it is often not available at an overdose. Every state has passed legislation making naloxone easier to get, but at least one medical professional is still required because only the Food and Drug Administration (FDA) can make a drug available without a prescription. This is a barrier because many people at risk of overdose lack health insurance or fear the stigma they may experience when asking a doctor or pharmacist for naloxone. With decades of safe administration by lay people, naloxone meets the criteria for an over-the-counter medication, and the FDA should immediately conduct an expedited review with a view to exempting one or more formulations of naloxone from the prescription requirement. This simple step – making naloxone as available as Tylenol – could save thousands of lives. 
Posted: January 1, 1970, 12:00 am

Kendra Williams, 23, struggled with a heroin addiction since she was 15, but stopped after her son (pictured) was born. Her life was saved by naloxone after she overdosed. Kendra is training to be a nurse and volunteers with the North Carolina Harm Reduction Coalition. Wilmington, North Caroline, 2017. 

©2017 Private
(New York, August 31, 2017) – The federal and state governments in the United States are not doing enough to ensure access to the life-saving medication naloxone to reverse opioid drug overdoses, Human Rights Watch said today in a question-and-answer document released on International Overdose Awareness Day.

Around 91 people die every day of overdoses involving opioids in the US. Data from the Centers for Disease Control (CDC) shows that in 2016, overdose deaths jumped by nearly 20 percent, to 59,000, compared to the year before. Naloxone is a safe, generic medication that can reverse a drug overdose involving opioids. It can be easily administered by lay people, but it must be given soon after the overdose.

“One of the easiest ways to stem the tide of overdose deaths would be for the federal and state governments to make it easier to get naloxone,” said Megan McLemore, senior health researcher at Human Rights Watch. “But in many states, restrictive laws and high prices put naloxone out of reach for the people who need it the most.”

The question-and-answer document identifies federal and state laws and policies that are keeping naloxone out of the hands of people most likely to witness accidental overdoses, denying them the ability to save lives. Human Rights Watch documented these policies in the April 2017 report,  “A Second Chance: Overdose Prevention, Naloxone and Human Rights in the United States.”

The Trump administration has said that addressing the opioid epidemic, including deaths from overdose, is a top priority. The federal Commission on Combating Drug Addiction and the Opioid Crisis published an interim report endorsing increased access to naloxone and made several recommendations that would increase its availability, including requiring naloxone to be prescribed alongside high-risk opioids like some prescription painkillers.

But the commission’s report did not address the steadily increasing cost of naloxone nor acknowledge the importance of harm reduction programs, like syringe exchanges, to giving naloxone to people who use drugs. Moreover, the commission failed to endorse one step that could be a game changer in what it calls a “national emergency”: moving naloxone from a prescription to an over-the-counter medication.

“The tragedy is that most opioid overdose deaths are preventable,” said McLemore. “Naloxone is safe, effective, and easy to administer by lay people. If it were as easy to buy as Tylenol, many thousands of lives could be saved.”

The US federal and state governments are taking insufficient action to ensure access to the life-saving medication naloxone to reverse opioid overdose, resulting in thousands of preventable deaths.

Posted: January 1, 1970, 12:00 am

The United States is in the midst of a public health crisis. More than 59,000 people are believed to have died from drug overdose in 2016, an increase of nearly 20 percent from the previous year. Most of these deaths are caused by opioids like prescription painkillers, heroin and the potent synthetic drug fentanyl.

The Trump administration has said that addressing the opioid epidemic is a top priority. On Aug. 10, President Trump declared opioid use and overdose a national emergency. If the White House is serious about this problem, there is a simple step it should take as soon as possible to save thousands of lives.

The US federal and state governments are taking insufficient action to ensure access to the life-saving medication naloxone to reverse opioid overdose, resulting in thousands of preventable deaths.

A vast majority of opioid deaths are preventable if the person overdosing is given naloxone, a safe, easy-to-use and relatively inexpensive drug that has successfully reversed tens of thousands of overdoses over the years. But this medicine is often not on hand when and where it is needed. Making it more readily available could save many lives.

On Aug. 8, Tom Price, the secretary of health and human services, highlighted the importance of naloxone, saying it should be “as present as needed and possible anywhere across the country.” A week earlier, the Trump administration’s newly convened Commission on Combating Drug Addiction and the Opioid Crisis released an interim report endorsing increased access to the lifesaving drug. It made several recommendations that would increase its availability, including developing model legislation to require that naloxone be prescribed in combination with high-risk opioids.

But the commission failed to endorse one step that could be a game changer in what it calls a “national emergency”: making naloxone available over the counter.

Naloxone, approved by the Food and Drug Administration in 1971, has been designated an “essential medicine” by the World Health Organization and has been used for decades in emergency rooms, ambulances and clinics. It is not a controlled substance, it is not believed to have any potential for abuse, and it has no clinical effect if given to someone not on opioids. With minimal training, anyone can easily administer it.

But because it requires a prescription, naloxone is often not immediately available at the scene of an overdose. Every state has passed legislation to make naloxone easier to get, but the involvement of at least one medical professional is still required because only the F.D.A. can make the drug available without a prescription. This federal prescription requirement is a major barrier to access: Many people who are at risk of overdose lack health insurance or fear the stigma and judgment they may experience when asking a doctor for a naloxone prescription.

Although the F.D.A. has held several meetings on changing naloxone’s prescription status over the past five years, the agency has not taken any substantive action to make the drug available over the counter. That needs to change.

In general, to be approved for over-the-counter use, a drug must meet a few conditions: 1) The benefits outweigh the risks; 2) the potential for abuse and misuse is low; 3) the consumer can tell when the medication is needed; 4) it can be adequately labeled; and 5) health professionals are not necessary for its safe and effective use.

Naloxone meets all of these criteria. Two formulations — a nasal spray and an auto-injector — were specifically designed to be used by laypeople, and people with minimal training have already used them to save many thousands.

Under F.D.A. regulations, a petition to move a prescription medication to over-the-counter status can come from a manufacturer, the F.D.A. commissioner or “any interested person.” The F.D.A. has taken minimal action so far, creating a draft label for over-the-counter use in the hope that a drug company will ask for approval to market naloxone over the counter.

This has not happened, and amid a public health crisis, the F.D.A. should take action on its own. The administration’s commissioner should immediately undertake an expedited review of the evidence and exempt one or more formulations of naloxone from the prescription requirement. If additional information is needed, the F.D.A. should expeditiously gather it. If the agency fails to act, Congress can and should require it to make that determination within a short time frame.

Mr. Trump has repeatedly vowed to end the opioid epidemic. Making naloxone available over the counter would be an important and easy step that the administration could take quickly to save lives. The F.D.A. can help the president achieve this goal — one widely shared by Americans of all political persuasions — by making naloxone easier to get.

--

Megan McLemore is a senior health researcher at Human Rights Watch. Corey Davis is a senior attorney at the National Health Law Program.

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

(Geneva) – The United Nations Minamata Convention on Mercury, which went into effect on August 16, 2017, could benefit millions of people affected by toxic mercury, Human Rights Watch said today. Under the treaty, governments are obligated to protect their citizens from the harmful effects of mercury and to put in place controls in polluting industries, such as artisanal and small-scale gold mining and coal-fired power plants. 

Mercury, a shiny liquid metal, attacks the central nervous system, can result in lifelong disability, and is very harmful to children. It can be lethal in higher doses.

The United Nations Minamata Convention on Mercury, which went into effect on August 16, 2017, could benefit millions of people affected by toxic mercury.

“Millions of children and adults around the world are exposed to mercury on a daily basis,” said Juliane Kippenberg, associate children’s rights director at Human Rights Watch. “The Minamata Convention strengthens governments’ obligations to protect people’s rights to health and to a healthy environment from this toxic substance.”

Pure mercury in a wooden pan used to process gold. 

© 2014 Mark Z. Saludes for Human Rights Watch

The Minamata Convention was adopted in 2013 in Japan. It 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 officially recognized that more than 2,955 people suffered mercury poisoning as a result, but subsequently compensated about 60,000 people. The actual number of victims is thought to be even higher.

Human Rights Watch has documented exposure to mercury by children and adults working in artisanal and small-scale gold mines in Ghana, Mali, Nigeria, Tanzania, the Philippines, and Papua New Guinea. Mercury is mixed into the ore to attract the gold particles. The resulting gold-mercury amalgam is then held over a fire, where the mercury is burned off, leaving raw gold behind.

Although mercury is particularly harmful to children, some children work regularly with mercury from young ages, unaware of the health risks. Children are also exposed to mercury fumes when their parents or older siblings burn the amalgam in their homes. Fifteen-year-old “Michelle” from the Philippines told Human Rights Watch that she had started processing gold with mercury at age 8, and started to suffer spasms – a typical symptom of mercury poisoning – a year later. She had never sought medical care or received a diagnosis.

The Minamata Convention obligates member countries to promote mercury-free gold processing methods; take special measures to protect vulnerable populations, including children and women of child-bearing age from exposure; and put an end to particularly harmful practices in gold processing, such as burning the mercury-gold amalgam in residential areas. Member countries commit to improving health care services for populations affected by exposure to mercury. The treaty also regulates other important industries, such as mercury use in products and manufacturing processes, and emissions from coal-fired power plants.

Mercury-contaminated water flows into the Bosigon River in Malaya, Camarines Norte.
 

© 2014 Mark Z. Saludes for Human Rights Watch

Currently, 74 countries are parties to the Minamata Convention, including important gold mining and donor countries – among them Peru, Brazil, Ghana, Canada, the United States, and Switzerland. On May 18, the European Union and seven EU member countries ratified the convention, bringing the total number of ratifications more than 50, triggering the entry into force on August 16. The first Conference of the Parties will take place from September 24 to September 29 in Geneva, Switzerland.

The Global Environmental Facility, a multi-donor trust fund, has been designated in the treaty to provide financial support to governments from developing countries that seek to take action on mercury and has already started funding programs.

“Now that the Mercury Convention is in effect, governments have to walk the walk and put the treaty into practice,” Kippenberg said. “People suffering from mercury poisoning need swift protection and treatment.”

 

Posted: January 1, 1970, 12:00 am

(Beirut) – Egyptian authorities should immediately provide appropriate health care to the imprisoned journalist Hisham Gaafar, whose health, including his eyesight, is deteriorating in detention, Human Rights Watch said today. If prison authorities are unable to provide him necessary health care, they should allow him to seek care in private health facilities.

Egyptian journalist Hisham Gaafar before his detention in October 2015.

© Private

The Interior Ministry’s National Security Agency arrested Gaafar, director of the Mada Foundation for Media Development, a private media company, at his office in October 2015. Prosecutors have ordered Gaafar detained pending investigation on charges that include membership in the Muslim Brotherhood and illegally receiving foreign funds for his foundation, his lawyers told Human Rights Watch.

“Egypt’s Interior Ministry has shown contempt for Hisham Gaafar’s health and well-being,” said Sarah Leah Whitson, Middle East director at Human Rights Watch. “The fact that the Interior Ministry refuses to provide him his rightful care is a sad testament to Egyptian authorities’ disregard for detainees’ most basic rights.”

Gaafar, 53, has an eye condition – optic nerve atrophy – that requires ongoing specialist care or he may risk losing his sight altogether. He also suffers from a years-long prostate enlargement condition and risks complications if he does not receive the proper treatment. His eyesight is deteriorating and his health has worsened during his time in detention, in poor conditions, his family said.

Immediately following his arrest, police took Gaafar to his home, where officers seized his personal publications, work papers, computers, and phones, including those belonging to his wife and children. They detained his family inside the home for 17 hours. Security officers confiscated all his medical documents and reports and have not returned them to his family, despite their requests.

National Security officers then took Gaafar to an undisclosed location and held him for two days without access to his family or lawyers. His family heard of his whereabouts when a lawyer saw him by coincidence in the Supreme State Security Prosecution office in Cairo. Prosecutors have kept him in pretrial detention since then.

Under Egyptian law, prosecutors have broad power to hold those suspected of committing major offenses, including political and national security crimes, in pretrial detention for up to five months without regular judicial review, and judges can extend the detention for up to two years without requiring any substantive justification from prosecutors.

A judge should immediately review the necessity and legality of Gaafar’s detention and either send him to trial without further delays or release him, Human Rights Watch said.

During Gaafar’s time in detention, most of it spent in the maximum security Scorpion Prison in Cairo, the Interior Ministry’s Prisons Authority has not provided needed medicine but has intermittently allowed Gaafar to receive the eye vitamins and prostate medicine he required, after completely banning such supplies for the first two months of his detention. During those two months, his wife, Manar, told Human Right Watch, prison authorities kept Gaafar alone in a cell that, in his words, resembled a “tomb” without sunlight.

Later, they allowed his family very short and irregular visits, with no chance to verify whether he had received the medicine they had given to prison guards for him. Since March 2017, prison authorities have again denied him visits from relatives and his lawyer.

Before he was detained, Gaafar used special optic tools to read and glasses for everyday life. He also needed some assistance in his daily routine, his wife said. Prison authorities allowed his wife to deliver the glasses several months after his detention, but when they reached him, they were broken. The way the glasses were broken suggested it had been deliberate, his wife said. She delivered new ones, but he has not had a new eye examination. His wife said that he recently told her he was not seeing as well as before, even with the glasses, suggesting his eyesight may have deteriorated.

Gaafar has had optic nerve atrophy in both eyes since he was a teenager, according to his wife. Medical documents and reports from 2012, which she provided to Human Rights Watch after she retrieved them from a hospital, stated that at the time he had only 10 percent of his vision remaining in his left eye. Optic nerve atrophy has no cure, but it can be slowed by exposure to sunlight, medicine, and a healthy diet, his wife said doctors had told them. These are not available in adequate amounts to inmates at Scorpion Prison and many other Egyptian detention facilities.

A Human Rights Watch report on Scorpion Prison, published in 2016, documented cruel and inhuman treatment by officers of the Interior Ministry’s Prisons Authority that probably amounted to torture, including preventing food and medicine deliveries and other interference in medical care that may have contributed to prisoners’ deaths.

Hisham Gaafar sits on his bed in detention. His health has rapidly worsened while in detention, including marked weight loss, deteriorating eyesight, and a chronic prostate condition. 

© Private

Gaafar’s wife said he appeared weak and to have lost significant weight during her March 2017 visit. She said she saw bite marks all over his body, which he said were from insects that had infested his cell due to a sewage leak. He told her he had suffered pain for weeks because he was sleeping on the concrete floor without a mattress. Human Rights Watch previously documented that Scorpion Prison authorities deny inmates a wide variety of basic necessities for hygiene and comfort, including beds, pillows, and mattresses. 

In late February 2016, after a public outcry and growing criticism from the Journalists’ Syndicate, human rights organizations, and public figures, the authorities transferred Gaafar to the Tora Prison Hospital after he began suffering from urinary retention – the inability to fully empty his bladder. Prison authorities then transferred him to al-Manial University Hospital, which is affiliated with Cairo University. Doctors who examined him there on March 4, and again on March 10, 2016, asked prison officials to allow him to be kept at Cairo University hospitals to prepare for more tests, including diagnostic surgery on his enlarged prostate, the apparent cause of the urinary retention.

Gaafar spent five months at the prisoners’ ward at Qasr al-Aini Hospital, where ill inmates who are hospitalized are usually held, but the authorities repeatedly failed to give Gaafar timely permission to go for needed tests. Human Rights Watch has previously documented that prison authorities pressure hospitals not to admit inmates or to return them without necessary treatment.

Gaafar told his wife that he received very little medical care there. In August 2016, the authorities sent Gaafar back to Scorpion Prison before he had undergone the examinations that he was told he needed. Prison authorities and Cairo University hospitals have not allowed Gaafar’s family to read or obtain a copy of the medical reports issued during his detention, his wife said.

The family managed to obtain the hospital discharge report through unofficial means, however, and provided a copy to Human Rights Watch. The report contained no detailed information on any tests Gaafar may have undergone or treatment received but stated that he suffers from “mild prostate enlargement" and that "the patient needed no surgical intervention.” The report did not state what caused the enlargement or whether it was benign or cancerous – a primary concern for the family. 

A couple of days after returning to prison, Gaafar found blood in his urine, and officers transferred him again to Tora Prison Hospital. But the facilities there lack a urology specialist, his wife said, and the prison authorities have refused to arrange for Gaafar to be seen by one. He appeared before a court in August 2016 carrying a urinary catheter, his lawyers said.

His wife said that after filing several complaints, a National Security officer visited Gaafar in detention in November 2016, and told him, “don’t worry, we will treat you.” But Gaafar’s request to seek treatment in a private health facility was ignored.

One of his lawyers and his wife both told Human Rights Watch that prosecutors never allowed them to obtain a copy of the official charges against him or the rest of his case file. However, Hossam al-Sayed, another Mada Foundation journalist who was arrested with Gaafar on the same day, was released without bail in March 2016, said the lawyer Karim Abd al-Rady of the Arab Network for Human Rights Information (an independent rights group).

Under an amendment to the penal code decreed by President Abdel Fattah al-Sisi in September 2014, Gaafar could face a 25-year sentence if convicted of receiving foreign funds illegally.

Prisoners have the right to the highest attainable standard of physical and mental health guaranteed in the International Covenant on Economic, Social and Cultural Rights, which Egypt ratified in 1982.

The Committee Against Torture, the monitoring body of the Convention against Torture and Other Cruel, Inhuman or Degrading Treatment or Punishment – ratified by Egypt in 1986 – has found that failure to provide adequate medical care can violate the treaty’s prohibition of cruel, inhuman, or degrading treatment.

“It is deeply concerning that Egypt’s judiciary has become complicit in human rights violations by cruelly detaining people like Gaafar for years without justification, exposing them to serious abuse and harm,” Whitson said.

Posted: January 1, 1970, 12:00 am

A woman walks past empty shelves at a drugstore in Caracas, February 23, 2016.

© 2016 Reuters

Yelitza López’s greatest fear is to face a grave illness without pain relief. That fear is very real to her – López’s mother, Divisay, has advanced cancer and suffers from bouts of severe pain.

“I cannot watch her suffer,” she told Human Rights Watch in a phone interview in July. “When we run out, I’ll have to see if I can get any more… I am worried.”

Her worry is warranted. As Venezuela’s crisis has deepened, morphine and other opioid analgesics, like many other essential medicines, have mostly disappeared from pharmacy shelves. “The finance ministry refuses to release the funds needed to buy more morphine for the public healthcare system,” says Dr. Patricia Bonilla, the founder of the Venezuelan Society of Palliative Medicine and Divisay Lopez’s doctor. “We have run out.”

López still has a small amount of painkillers left thanks to Bonilla, who has been collecting leftover medications from families after loved ones died. But when she runs out, she does not know how she will help her mother when the pain attacks. “The pain leaves her completely incapacitated: unable to sit, stand, or eat.” 

Thousands of other families in Venezuela are in a similar situation. In fact, many are probably worse of and have no access to morphine at all. More than 23,000 Venezuelans die of cancer every year; about 80 percent develop moderate to severe pain in the last few months of life. Many others have cancers that may be treatable but cause significant pain nonetheless.

Without adequate treatment, pain can ruin the quality of life of both patients and their loved ones. Human Rights Watch has interviewed patients with pain from a dozen countries who describe their suffering in a similar way to torture victims: the pain is unbearable and they would do anything to stop it. Many say that they see death as their only way out; some said they had become suicidal and a few actually tried to commit suicide.

Before the current crisis, Venezuela’s healthcare system boasted relatively strong palliative care services where morphine was readily available. With today’s acute shortages, however, Bonilla says her life has turned into a constant hunt for medication so her patients do not have to suffer. She says she is endlessly trying to come up with new, creative ways to get her patients morphine. Apart from collecting medications from patients who have died, she advises families to go to Colombia or other countries in the region or even to buy them on the black market – a risky proposition as one has no way of knowing whether the medication is real. She also actively tries to arrange for donations from palliative care physicians in Spain and elsewhere. “But you cannot just mail these medicines [as they are controlled substances]. Someone has to physically bring them across the border in their luggage.”

The extraordinary efforts of Bonilla and some of her colleagues have helped mitigate the plight of some patients. But thousands of others are not that lucky. The Venezuelan government should urgently step in and ensure morphine becomes available again so that the country’s cancer patients do not have to die in agony.

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

Campaign supporters display a streamer after lightning around 1,638 candles representing the number of dead victims claimed by HIV/AIDS in the Philippines since 1984 as part of their commemoration of International AIDS Candlelight Memorial Day in Quezon city, metro Manila in the Philippines May 14, 2016.

© 2016 Reuters/Romeo Ranoco

The Philippines’ human immunodeficiency virus (HIV) epidemic is a “national emergency,” the head of the AIDS Research Group of the health department’s Research Institute for Tropical Medicine (RITM) said on Monday.

Dr. Rossana Ditangco warned that the government’s current approach to the epidemic means that “we can’t control the rapid rise of HIV infection.”

Ditangco is no fear-monger. The latest statistics from the UNAIDS’ 2017 report indicates the rate of HIV infection in the Philippines has become the highest in the Asia Pacific region. That data demonstrates that in 2016, 83 percent of new infections in the Philippines occurred among men who have sex with men and transgender women who have sex with men. The sharp rise in new HIV infections in the Philippines since 2010 stands in sharp contrast to decreasing or stagnant rates of new infections in other parts of the Asia-Pacific region. Philippine Department of Health data indicates that the country’s HIV infection rate grew by 140 percent from 2010 to 2016, with two out of three new HIV infections among 15 to 24-year-old men who have sex with men.

Secretary of Health Paulyn Jean Rosell-Ubial has responded to this data, by declaring the country’s HIV epidemic “one of the top health priorities” and sharing plans to increase funding for antiretroviral treatment. Government health experts advocate a “treat all” approach, under which anyone who tests positive for HIV will immediately be offered treatment, irrespective of their immune system status. The health department also intends to “scale up” its community-based HIV screening by promoting testing and other services such as risk-reduction and HIV awareness counseling in so-called “high burden areas”—areas with high numbers of new infections.

But amid these official expressions of concern, the government continues to delay the roll out of proven low-tech and low-cost interventions that can address the spread of HIV among men who have sex with men. Instead, it should immediately implement the recommendations from a recent Human Rights Watch report and remove current official obstacles to condom access and usage as well as ensure that schools include safer sex and HIV prevention education in the curriculum. The government should also reactivate harm reduction programs targeting injecting drug use, particularly in Cebu City. Likewise, the government needs to step up its efforts to eliminate stigma and discrimination, which are key factors in discouraging or preventing key affected populations being tested or treated.

The worsening severity of the Philippines’ HIV epidemic is unquestionable. The Philippines government needs to demonstrate it’s finally willing to adequately address it.

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

A legal settlement in South Carolina last week will award US$440,000 to a 12-year-old intersex child, born with sex characteristics not quite typically male or female, who was operated on as an infant to make his body appear like a girl. The surgery was irreversible, medically unnecessary, and traumatizing for the child, who grew up to identify as a boy.

A father plays with his daughter, who was born with atypical sex characteristics. Despite pressure from doctors, the parents chose not to elect medically unnecessary surgeries on their child. 

© 2017 Human Rights Watch
While a positive outcome for the child who went through all of that, the lawsuit doesn’t do anything to address the regulatory void that allows surgeries like this to happen in the first place. Not even the hospital involved in the suit has given any indication that it intends to stop conducting such surgeries on children too young to give consent.

As Human Rights Watch documented in a report published last week, despite decades of controversy over the procedures, doctors continue to operate on children’s gonads, internal sex organs, and genitals when the kids are too young to participate in the decision – even though the surgeries are dangerous and could be safely deferred. The results are often catastrophic and the supposed benefits largely unproven. It is rare that urgent health considerations require immediate intervention.

There is no nationwide data on these surgeries, but doctors’ own clinical results suggest they remain common.

The responses of some in the medical community to our report and to the South Carolina settlement are disturbing. True, the American Academy of Pediatrics welcomed our research and the American Medical Association board of trustees and three former US surgeons-general have recommended an end to medically unnecessary surgeries on intersex kids.

But the reaction of individual physicians underscores how urgent the need to regulate these surgeries really is.

For example, reacting to the South Carolina settlement, a University of Michigan pediatrics professor said he does not question the life-long, negative consequence of surgery in individual cases, but remains unconvinced the operations should be outlawed because, “What I do question is whether their experiences are generalizable to others.” That argument turns logic on its head – as though the dearth of reliable data on precisely how many kids have suffered harm because of these surgeries was a reason to keep doing them. Just as bad, a University of California, San Francisco surgeon misconstrued the operations as medically necessary and intersex bodies as abnormal because the surgeries “restore normal anatomy.” And a doctor at Children’s Hospital Colorado said physicians would feel unduly restricted by a ban” on these surgeries.

The simple truth is that regulating these surgeries would protect children from nonconsensual medically unnecessary operations that could harm them. Already, a law in Washington state, together with a policy at Seattle Children’s Hospital, has forced the deferral of one such medically unnecessary surgery on an intersex child too young to consent – even though both parents and physicians wanted to proceed.

Certainly it’s not an undue restriction to apply the basic principle of “do no harm” to intersex children. 

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

A poster by intersex activist Pidgeon Pagonis

© 2017 Human Rights Watch

For decades, parents of intersex babies – children whose sex characteristics aren’t quite typical male or typical female – have been pressured into consenting to medically unnecessary and irreversible surgery to make their children appear ‘normal.’ But these surgeries leave physical, emotional, and psychological scars, Human Rights Watch says in a new report. Philippa Stewart speaks to Kimberly Zieselman, the executive director of intersex advocacy group interACT, about this damaging surgery and what needs to be done to protect intersex children.

What are some of the misconceptions around being born intersex?

Unfortunately, in our society we’re still at a point where most people don’t know the basic facts about being intersex. People think it is very rare, but really, up to two percent of the population are born with intersex traits. And there are well over 30 to 40 intersex variations, which is something a lot of people don’t realize.

What do people who are intersex deal with because of this lack of understanding?

People are told not to discuss being intersex. That makes intersex children feel almost freakish, and this feeling is carried into adulthood.

Even with the best interests of the child in mind, parents and doctors will often relay the message to children that they are wrong and different and something to be fixed. Often that fix includes irreversible medical intervention really early in life, including surgery. This attitude creates a feeling of stigma and shame and affects people deeply. We see physical harm from the surgery, but also psychological harm because of the intervention. The fact that you’re told by society that you don’t belong and that you’re a mistake or your body is a mistake – most intersex people really struggle with this their whole lives.

What is your group calling for?

What we want is a moratorium on surgery if the person is too young to understand and to consent.

So, we want doctors to shift their attention away from “fixing” babies and young children and instead focus on adolescents, young adults, and adults who may have decided for themselves they want surgery – that is where the help is needed. We just want the focus to be shifted to consenting adults.

What do some doctors tell parents when they are trying to make these decisions?

One thing I’ll never forget is a parent who told me that, when they were asking questions and were confused about why the surgery had to happen right away, the doctor got frustrated and said, “Well if you don’t do this surgery, frankly it’s akin to child abuse.” That’s probably the worst thing I’ve heard. More often, it is a tone or an attitude that the doctors send out in the way they talk to parents – that suggests the same thing.

There’s an established power dynamic between doctors and patients. In these situations, with your children involved, you go in to a bit of a panic mode and you are relying on this doctor to tell you how to help your child.

What needs to change in this process to help parents?

Doctors need to frame it in a different way, so parents know there is no urgency. Parents should also be given the full spectrum of choices, including waiting for a period of time, talking to other parents who have gone through this with their children, or connecting with adults who have the same intersex traits as the baby. Then, they can gather information for themselves to help them help their child make a decision.

Doctors in the United States continue to perform medically unnecessary surgeries that can inflict permanent harm on intersex children. 

What’s happening in too many cases is that doctors are telling parents, “Well it is really better to do this kind of surgery when they are young because they won’t remember it, there will be less trauma, and they won’t have any time that they’ll remember when their body looked different so they won’t be made fun of or discriminated against by their peers.” These aren’t medical reasons, they are all sociological, they start creating a “social emergency” and it scares the parents. These fears also aren’t grounded in any kind of data – they’re just hypotheses.

But it isn’t a medical emergency or a social emergency. It is just a child with a different type of body.

Also, parents should know that some of these surgeries are deemed akin to torture by United Nations rights experts when done without informed consent.

This all must have an impact on how intersex people view doctors.

Absolutely. For those who have had surgery and maybe now need doctors for hormone replacement therapy – which you need for the rest of your life after having had healthy gonads removed – there is a reliance on the medical community. You need to access doctors to stay healthy, but for lots of intersex people that is very difficult.

A lot of intersex people who have been lied to as children and had surgeries done to them without their consent develop a mistrust of doctors. I’ve heard intersex people say they are avoiding the doctor because they just can’t cope with the stress of it.

The intersex community is not saying doctors are bad. What we need are doctors we can fully trust and who will explain things so we can understand and consent to procedures.

We need the doctors who don’t do this to tell the rest of their profession that these surgeries shouldn’t be done.

We shouldn’t be taking away a child’s bodily autonomy just because they don’t fit into our idea of normal.

Do intersex adults sometimes not know what surgery they underwent as children?

In the past decade that has been less common.

That said, there’s so many of us walking around who were lied to, or were not told for a really long time, or found out accidentally. This was the case of many of us in my generation. My story is that I didn’t find out until nine years ago, when I was 41. I knew I’d had surgery. I signed a form when I was 15, along with my dad, but we didn’t know what it was for. We thought it was a hysterectomy and cancerous ovaries being removed. That is a pretty common story for people around my age and a little bit younger – that intersex people get their medical records and realize they were lied to, often by their parents as well as the medical community.

What have people told you about the effects of these surgeries?

It does sound dramatic, but it is quite common, especially for people who have had medical intervention, to experience PTSD as a result.

There are also more subtle things like having a pattern of disassociation in your life, difficulties in relationships, particularly with sexual intimacy and trust. There is also the physical scarring and nerve damage that leads to loss of sensation.

This story has just stuck with me. It was a young person who is now in her 20s. When she was 18 months old, her parents took her to the doctor and it was determined her vagina was too small. The recommendation was a surgery to create a vagina.

A father plays with his daughter, who was born with atypical sex characteristics. Despite pressure from doctors, the parents chose not to elect medically unnecessary surgeries on their child. 

© 2017 Human Rights Watch

The parents took the surgeon’s advice but then were surprised to learn only after the surgery was completed that they would be required to dilate their child’s vagina regularly afterward. What happened was that the parents would dilate the child, with all good intentions, but they would physically hold her down. You can just imagine the trauma from that. One of the results was this child became anorexic – it was about gaining control over her body.

Happily, recently she’s been doing great and is starting to move past the trauma and speak out about it as an advocate, and her mom has been very supportive.

There’s a lot to say about parents accepting and being comfortable with their child’s non-binary body.

What do you think is the key to acceptance for intersex people?

The LGBT community was the first to embrace intersex issues, and it is opening a lot of doors for us, but this is truly a broader issue. We’d like people to understand that really at its core this is a children’s rights issue. It is also about health and reproductive rights, because these operations can lead to infertility.

We’re doing so much to connect and empower intersex people in their teens and 20s. Even though intersex isn’t a sexual orientation or a gender identity, we have many similarities – like discrimination based on sex and bodies – with the LGBT movement, and that movement has really paved the way for acceptance. There’s a long way to go, but it really has made a difference to young people and how accepting they are. It gives me a lot of hope.

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