(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

U.S. Senator Rand Paul (R-KY) applauds as U.S. President Donald Trump signs an executive order to make it easier for Americans to buy bare-bones health insurance plans and circumvent Obamacare rules at the White House in Washington, U.S., October 12, 2017.

© 2017 Reuters

Having failed – again – to gain congressional support for repealing the Affordable Care Act (ACA), US President Donald Trump last week took two actions that will undermine some of its core principles.

The President’s executive order allows for new, unregulated insurance packages – touted as expanding insurance options by the administration. However, many experts believe these changes will pull younger, healthier people out of the current insurance exchanges, where people can buy insurance compliant with the ACA, to buy so-called junk insurance. This would undermine the viability of the exchanges and leave those with greater healthcare needs – older people, those with low incomes, and people with pre-existing conditions – with too-high premiums, pricing them out of affordable health care.

The order makes it easier for small businesses and groups to work together and buy “association health plans” and short-term insurance coverage. These plans typically offer cheaper premiums, but include fewer benefits. Despite a problematic history of bankruptcies and failure to pay people’s medical bills, association health plans, like short-term insurance plans, are often attractive to younger, healthier consumers.

The ACA limited both options in order to spread the risk for insurers by including both healthy and sick people. After all, a person’s age or health history should not affect their ability to obtain coverage. Indeed, this is fundamental to Obamacare, which has promoted the right to health by making affordable insurance coverage available to millions of Americans. According to the Kaiser Family Foundation, a nonprofit group, these alternative health plans create a “parallel” insurance market not covered by ACA protections, such as essential benefits packages and coverage for pre-existing conditions.

At the same time, President Trump vowed to pull federal support from the subsidies that help people afford to purchase plans from the exchange.

As a result, premiums on ACA insurance exchanges may rise sharply, with negative consequences for public health. For example, women might find it more expensive to access prenatal and maternity care – something the US can in no way afford as maternal death rates are rising alarmingly. Amid a nationwide crisis of drug overdose that claimed more than 60,000 lives in 2016, coverage for substance use treatment may cost more.

The Trump administration should act to protect the right to health, not undermine it.

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

Gurgen G., who had a brain tumor, and his mother. Gurgen participated in a palliative care pilot project, which improved the quality of his remaining life. He died in August 2012, free from pain. 

© 2012 New Media Advocacy Project

About 8,000 people die from cancer in Armenia every year, many spending their last days in excruciating pain.

But Armenia has recently taken two important steps toward ending their suffering. In February, the government adopted a national strategy to introduce palliative care services, which focuses on pain relief and improving the quality of life, and in March, it registered two forms of liquid oral morphine, paving the way for their use in the public healthcare system.

The World Health Organization considers oral morphine, which is swallowed, the cornerstone of cancer pain treatment. Currently, only injectable morphine is available in Armenia.

The national strategy focuses on treating pain and other physical symptoms, and provides psychosocial support for people with life-threatening illnesses. It specifies reforms in policy, education, and medicines’ availability, and designates state institutions that will be responsible for carrying out these reforms.

In July 2015, Human Rights Watch published a report and video showing the impact of untreated pain and lack of support services on the lives of cancer patients and their families in Armenia. I interviewed many people who were dying – in horrible pain.

Lyudmila, a 61-year-old kindergarten teacher, told me, “The pain attacks start unexpectedly, and I start screaming and become a different person…. I can’t speak. I have pain attacks every night…. It’s ... unbearable pain for a human being….”

Her experience was not an exception.

When treatment to cure cancer is no longer effective, patients with advanced cancer in Armenia are sent home, essentially abandoned by the health care system at arguably the most vulnerable time of their lives. They face pain, fear, and anguish without professional support. Some of the support they need is palliative care.

Morphine, the mainstay medication for treating severe pain, is inexpensive and easy to administer, but fewer than 3 percent of those who need morphine in Armenia get it. That’s because of the nearly insurmountable bureaucratic barriers around the prescribing and dispensing of morphine, which the new strategy should change.

The Armenian government has long recognized the need for palliative care, yet took more than three years to develop and adopt the strategy and action plan and ensure that oral morphine is registered. The strategy recognizes the need to amend regulations restricting access to pain relief medications, and the government plans to review them in 2018. Armenia’s thousands of cancer patients have waited long enough.

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

Doña Remedios and her daughter at the pharmacy of the National Cancer Institute in Mexico City, Mexico on September 1, 2014 to fill a prescription for morphine. They have to travel for several hours to procure the medication because there are no hospitals with palliative care in Hidalgo, their home state. 

© 2014 Ed Kashi for Human Rights Watch

Ensuring good health care at the start of life is a longstanding goal for the global community, and major funding backs efforts to reduce maternal and child deaths. By contrast, health care at the end of life – a need almost as universal as care during pregnancy, child birth, and infancy – has long been neglected. A new report in the medical journal Lancet calls on countries to include such care under the universal health insurance provided by governments. Mexico is one of few low- and middle-income countries that has already taken steps to do so, working to ensure no one suffers needlessly as their life comes to a close.

In 2003, Mexico reformed its healthcare system to provide insurance for millions of its uninsured citizens. Through this new health insurance, Seguro Popular, the government began subsidizing medical assistance people needed to stay healthy, ranging from prenatal care to vaccination, to treatment of diabetes and some forms of cancer – all for Mexicans who previously had to pay for such care out of their own pockets.

By 2016, more than 57 million people had enrolled in Seguro Popular.

However, as Human Rights Watch found in 2014, Seguro Popular initially did not cover medical care at the end of life. Those enrolled were entitled to preventive care and treatment focused on cures, but once a disease became incurable the coverage ended. Seguro Popular covered hundreds of medicines – but not key medications for pain and shortness of breath, both common and distressing symptoms of incurable illness. Hospitals had little incentive to provide palliative care, which focuses on pain relief and quality of life for patients, as they could not get reimbursed. This contributed to the poor availability of such health services.

As part of a broader effort to improve palliative care, however, the government took steps to address this. In 2014, it added several key palliative care medications to the list of medicines covered by insurance. A year later, it added palliative care to the list of services enrollees are entitled to.

To be sure, much work remains to be done. Many hospitals still do not offer end-of-life care, forcing patients to travel long distances at a time when they are least able to do so, and most healthcare workers are still not trained in palliative care. But any journey starts with a few small steps. Other countries should follow Mexico’s example. 

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

During a morphine shortage, a cancer patient in Dakar cluthes onto the railing of her hospital bed because she is in pain and the medication she needs is unavailable.

© 2013 Angela Chung/Human Rights Watch

When it comes to end-of-life care and pain treatment, Francophone Africa has a long way to go. But, Senegal is one country working to change this.

A 2012 study found 16 of 22 countries in Francophone Africa have no healthcare providers specializing in palliative care, which focuses on pain treatment and quality of life. Yet, each year about 912,000 people there, including 214,000 children, require palliative care. That number is likely to grow.

In countries with limited resources, where death from malaria or respiratory infections is common, palliative care is often viewed as a luxury. However, our work in Senegal with local partners and the health ministry shows progress can be made.

In 2013, Human Rights Watch found that only a few hospitals in the capital, Dakar, provided palliative care for patients with end-stage cancer. Also, the amount of morphine the country used was enough to treat just 179 patients with advanced cancer or AIDS – although about 70,000 people there required palliative care each year.

At the root of the issue was the absence of a national policy, a lack of training and education for healthcare workers, and challenges with the procurement and prescription of morphine.

Since 2014, however, the Senegalese government has taken steps to improve access to palliative care. It boosted its national estimate for morphine from 1,180 grams in 2012 to 40,329 grams. It has begun buying oral morphine tablets for public hospitals. It changed regulations limiting the prescription of morphine to seven days at a time – forcing patients at the end of life to travel long distances to get a new prescription – to 28 days. The World Health Organization (WHO) has worked with the ministry to train physicians, pharmacists, and health workers on using morphine. The hospital with the country’s largest adult cancer unit hired a palliative care specialist. The health ministry has worked with Human Rights Watch on a needs assessment study, the result of which are forthcoming.

Despite this progress, much remains to be done. Most hospitals do not offer palliative care services to incurable patients. Most health workers have no training in palliative care. And morphine is available almost only in the capital. But with leadership in the health ministry, pressure from civil society, and assistance from international actors like WHO, significant progress in addressing these challenges is within reach.

Hopefully, other West African countries will also take these steps.

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

A palliative care physician assesses a patient’s pain.

© 2009 Brent Foster for Human Rights Watch

Poor people around the world live and die with little or no pain relief or palliative care, a report published today in the medical journal, Lancet, said, calling the fact a “medical, public health, and moral failing and a travesty of justice.”

The report, prepared by global health and palliative care experts, of which I, in my capacity as Human Rights Watch’s health director, was one, found that more than 61 million people worldwide experienced severe pain, fatigue, nausea, vomiting, and other symptoms common to illnesses like advanced cancer, diabetes, and heart disease.

The global health community has largely ignored this, the report said. It blames the fact that people’s health progress is measured in extra years of life or productivity, with insufficient weight given to dignity. Also, the medical establishment’s focus on curing diseases has led to a minimizing focus on caregiving and people’s quality of life near death.

The absence of morphine, essential in palliative and end-of-life care, in many low and middle-income countries is “emblematic of the most extreme inequity in the world,” the report states. With 298.5 metric tons of morphine and similar medications distributed worldwide each year, only 0.1 metric ton goes to low income countries. Yet a basic palliative care package, which includes key medications and personal care, is not expensive, costing about US$2.40 per capita per year in low income countries and US$0.75 in lower-middle income countries.

Addressing morphine access is even less costly. In upper middle-income countries, which include China and Russia and represent 52 percent of global unmet need for the medication, the cost could represent significantly less than 0.01 percent of those countries’ total health expenditures.

The report calls for new methods to measure health progress that include suffering, and for the inclusion of palliative care as part of the universal health insurance governments offer their citizens. It also calls the establishment of a clear accountability process to measure progress toward closing the pain relief gap.

The report’s conclusions echo Human Rights Watch’s research on lack of pain treatment in countries like Armenia, Guatemala, India, Mexico, Morocco, and Senegal. Patients we interviewed described their suffering in similar terms as victims of torture, saying that the pain was unbearable and that they would do anything to make it stop. Many saw death as their only way out.

As the report says, the global health community has “the responsibility and the opportunity” to alleviate people’s end-of-life suffering. It should do so.

For more Human Rights Watch Reporting on palliative care, please visit:
https://www.hrw.org/topic/health/palliative-care

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

Ghana is one of the world’s top 10 gold producers. Around one-third of Ghana’s gold is mined in artisanal and smallscale mines, which mostly operate illegally and use child labor. Two boys, 9 and 12 years old, demonstrate their daily work of washing and sluicing gold ore in Homase, Amansie Central district, Ashanti Region.
 

© 2014 Juliane Kippenberg/Human Rights Watch.

Across Africa, from Mali to Tanzania to Zimbabwe, millions of people, including children, work in small gold mines. Artisanal and small-scale gold mining is a vital source of income, but it is also very dangerous because miners use toxic mercury to separate the gold from the ore.

Mercury is a shiny liquid metal that attacks the nervous system. Exposure can result in life-long disability, and is particularly harmful to children. In higher doses, mercury can kill. Its largest use globally is in small-scale gold mining.

In Tanzania’s small-scale mines – in the informal as well as the formal sector – we have seen with our own eyes how miners mix the mercury into the ore with their bare hands, create a gold-mercury amalgam, and then burn the amalgam over an open flame. Even children do this, unaware of the risk.

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

Some children in mining areas are exposed to mercury from the moment of their birth. One of them was 12-year-old Erevu, who processed gold with mercury at a mine in Tanzania’s Chunya district and said he suffered from dizziness and headaches every day.

Now, the fight against global toxic pollution has reached a critical milestone: a new treaty on mercury – the Minamata Convention on Mercury – came into effect on August 16. This week, governments are coming together for the first conference of the parties to the convention. African governments played an important role in creating the treaty and should exercise strong leadership in putting it into effect.

The treaty is named after the Japanese fishing town of Minamata, where a chemical company caused mass mercury poisoning several decades ago. As a result, many people died or were born with severe disabilities. The Japanese government has compensated about 60 000 victims.

Under the treaty, governments must protect their citizens from the harmful effects of mercury and put controls in place on polluting industries. For mining, the convention obligates governments to promote mercury-free gold processing methods; take special measures to protect vulnerable populations from exposure, including children and women of child-bearing age,; and put an end to particularly harmful practices in gold processing such as burning the mercury-gold amalgam in residential areas.

Governments commit to improving healthcare for populations affected by exposure to mercury. The treaty also regulates mercury use in products and manufacturing processes, emissions from coal-fired power plants, and other industries. To help countries achieve these goals, governments can apply for funds to create mercury reduction programmes.

African governments and nongovernmental organisations played an essential role in the process leading to this new convention. The Africa region strongly pushed for more stringent protections from mercury during the multi-year negotiations. African groups gave a voice to the victims and pressed for fast, effective measures to prevent exposure and treat those already affected by mercury.

African governments can also play a key role in making the convention a success. It is encouraging that 20 African governments have ratified the treaty since its adoption – among them gold producers Ghana, Mali, and Madagascar.

But much more needs to be done to protect people from the harmful effects of mercury.

The 34 African governments that have not ratified the convention should do so, and countries with ratification under way should quicken their pace. East Africa, in particular, is noticeably absent from the ratification effort. The only country to have ratified there is Djibouti. Even countries with important small-scale mining sectors, such as Tanzania and Sudan, have not ratified.

All African governments need to put in place quick, effective measures to prevent their own citizens from suffering toxic mercury exposure. Many governments that have ratified have yet to take concrete steps to put an end to mercury exposure. For starters, they should eliminate some of the most harmful uses of mercury in mining and ensure that no child works with the dangerous metal. Those who are already suffering from mercury poisoning need to be identified promptly and receive adequate medical care. And most important, governments need to ensure that miners use mercury-free gold processing methods.

If governments act now to end mercury use, they can make small-scale gold mining truly beneficial for local communities.

Haji Rehani is an environmental activist and mining expert with Agenda, a Tanzanian nongovernmental organization. Juliane Kippenberg is a child rights expert at Human Rights Watch who has conducted research in artisanal mines in Tanzania, Mali, Ghana, and the Philippines. 

Posted: January 1, 1970, 12:00 am

Sen. Bill Cassidy (R-LA), accompanied by Sen. Lindsey Graham (R-SC), Sen. Roy Blunt (R-MO), Sen. John Barrasso (R-WY) and Senate Majority Leader Mitch McConnell, speaks with reporters following the party luncheons on Capitol Hill in Washington, U.S., September 19, 2017.

© 2017 Reuters

This spring, “Mark,” a 65-year-old man from California, lost the toes on his right foot. Doctors had no choice but to amputate them after he developed complications from a staph infection. With a monthly income of US$1,499 from Social Security, Mark relies on Medicaid to pay for the nursing facility where he currently resides and for the rehabilitation sessions that are, as he put it, teaching him “how to walk again and do things without the use of [my] right foot.”

The Graham-Cassidy bill, now approaching a Senate vote, would hit older Americans hard, threatening their right to health, including the ability to live safely, with dignity, and as independently as possible. It would drastically cut federal funding for Medicaid. It would also allow insurers to charge premiums based on age and impose lifetime caps on coverage. Perhaps most harmful, the bill would open the door to allowing insurers to charge higher premiums for people with pre-existing conditions.

In a letter urging US Senators to reject the legislation, the AARP noted that 25 million Americans age 50 to 64 have pre-existing health conditions. This provision along with others would likely put health insurance out of reach for millions of older Americans. The bill would also eliminate existing subsidies for purchasing private insurance, which could leave many more older Americans without insurance: currently some 6 million people age 50 to 65 buy their health insurance on exchanges, and more than half qualify for tax credits to help them afford it.

Long term care poses a major financial challenge for older Americans, and older women in particular. Older women have higher rates of poverty than older men; almost twice as many older American women live in poverty as older men. At present, Medicaid covers stays in nursing facilities that exceed 100 days. Medicaid cuts would hit older women particularly hard; 70 percent of nursing home residents are women.

Human Rights Watch has warned about the harms older Americans and others would face under previous attempts to remove the Affordable Care Act in the US. The Senate needs to recognize that the accessibility of health care for older Americans would suffer under the Graham-Cassidy bill. As Mark told us: “Medicaid was not important to me until I got sick. I think that’s the way it is with a lot of elders. They won’t know it is a problem until it’s too late.”

Author: Human Rights Watch, Human Rights Watch
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