More than 13,500 asylum seekers remain trapped on the Greek islands in deplorable conditions as winter begins on December 21, 2017. Greece, with support from its European Union partners, should urgently transfer thousands of asylum seekers to the Greek mainland and provide them with adequate accommodation and access to fair and efficient asylum procedures.

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

(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

Under the patronage of Sheikh Mohamed bin Zayed Al Nahyan, Crown Prince of Abu Dhabi, the UAE is hosting a global health forum on November 19, 2019 on eradicating infectious diseases.

© 2019 Alexander Melnikov / Sputnik via AP
 

(Beirut) – United Arab Emirates (UAE) authorities should ensure that all prisoners in their custody have access to appropriate HIV prevention, treatment, and care, Treatment Action Group, Action Against Aids Germany, Human Rights Watch, and 37 human rights and public health organizations and networks working on HIV and TB, said in a letter today to Sheikh Mohammad bin Zayed Al Nahyan, the Abu Dhabi crown prince. The groups also said that independent international monitors should be allowed regular access to prison and detention facilities.

Under Sheikh Mohammed’s patronage, the UAE is hosting a forum in Abu Dhabi on November 19, 2019, for global health leaders to share insights and best practices on eradicating infectious diseases.

“While the UAE hosts  a global forum on eradicating infectious diseases, vulnerable prisoners living with HIV in its own detention facilities are being denied critical and lifesaving treatment,” said Michael Page, deputy Middle East director at Human Rights Watch. “To show a genuine commitment to ending preventable diseases that affect the world’s most vulnerable communities, Sheikh Mohammed bin Zayed al Nahyan should first look to cleaning up his own backyard.”

On November 4, Human Rights Watch released research that revealed that Emirati prison authorities are denying non-national prisoners living with HIV in some UAE prisons regular and uninterrupted access to lifesaving antiretroviral treatment. Human Rights Watch also found that prison authorities in al-Awir central prison in Dubai and al-Wathba central prison in Abu Dhabi have segregated detainees living with HIV from other prisoners and systematically discriminated against them.

A second letter was sent to the UNAIDS executive director, Winnie Byanyima, and the United Nations Development Program administrator, Achim Steiner. The groups urged these UN agencies to intervene publicly and privately to press the UAE to take appropriate action to end the abusive practice against non-national prisoners living with HIV, including by allowing independent monitors private visits with prisoners.

On November 5, Saeed al-Hebsi, director of human rights at the UAE Ministry of Foreign Affairs and International Cooperation, told the Guardian “The UAE rejects the allegations put forward by Human Rights Watch. Every person has a right to proper health care and we guarantee medical services to all inmates in the UAE prison system.”

However, Human Rights Watch documentation, as well as that of other international human rights groups, demonstrates that the denial of adequate medical care in UAE prisons and detention facilities extends beyond prisoners living with HIV and other communicable diseases and is most common in state security facilities, where torture is systemic.

In May, Human Rights Watch reported the death of a cancer-stricken detainee, Alia Abdel Nour, following years of mistreatment and denial of adequate medical care by security forces and prison authorities. UAE authorities ignored repeated calls by European Parliament members, UN experts, and members of her family for her release on health grounds.

Over the past year, there have also been increased concerns for the deteriorating health of two unjustly detained rights activists, Ahmed Mansoor and Nasser bin Ghaith, who are reportedly being held in dismal prison conditions and denied access to health care in Al Sadr and Al Razeen prisons, respectively.

“Allowing independent and international monitors to conduct private and regular visits with prisoners in the UAE would be a step toward demonstrating that the UAE is meeting its international obligation to provide adequate medical care to all prisoners without discrimination,” Page said.

Posted: January 1, 1970, 12:00 am

“Angela,” 20, walks with her son near her home after returning from school in Migori county, western Kenya. She is a Form 4 student at a girls-only school. Angela became pregnant when her trainee teacher offered to pay some of her primary school fees in return for sex. Her father tried to marry her off to suitors after she gave birth, but Angela’s mother fought against this and supported her return to school. She wants to go to college and study nursing.

© 2018 Smita Sharma for Human Rights Watch

In late 2018, Sierra Leone's First Lady, Fatima Bio, opened a national campaign "Hands Off Our Girls."   Her campaign made big promises to reduce child marriages and teenage pregnancies in the country, in part to tackle the spike in teenage pregnancies following widespread rape during the Ebola crisis. Reflecting on this campaign, President Julius Maada Bio stated: "We have wasted a lot of time in restricting the potentials of women and girls."

In light of this important acknowledgment, his government senselessly adheres to a policy that intentionally wastes the potential of many thousands of girls who are expelled from school each year because they are pregnant - which also effects the number of girls who stay in secondary school in the country.

In Sierra Leone, like in Tanzania and many other African countries, one of the most often cited excuses for not letting pregnant girls stay in school is that they will "corrupt" other girls into pregnancy. But isolating and excluding pregnant girls from school will not stop teen pregnancies because "immorality" is not the cause.

Video

Giving Girls a Future: Allow Pregnant Girls, Young Mothers to Attend School

Tens of thousands of pregnant girls and adolescent mothers are banned or discouraged from attending school across Africa.

These punitive approaches, which in Tanzania and elsewhere have led to harassment and even arrest of pregnant girls, only serve to stigmatize and disempower girls, and to perpetuate gender discrimination. The fact is that many teenage girls are vulnerable to becoming pregnant because of factors such as poverty, violence, exploitation, and lack of knowledge about sexuality. Government officials might be quick to blame some of the most vulnerable girls, but authorities are incredibly slow when it comes to tackling these key factors through smart policies and programs.

The stories of hundreds of girls whom we have interviewed stand in sharp contrast to the dominant narrative by authorities and others in a position of power, such as teachers, education staff, or politicians who condemn them.

When we've asked girls - pregnant or not - what they think about their peers' pregnancies and drop-outs, most have told us that seeing other pregnant girls drop out of school is enough of a deterrent. Girls can often see that their peers have to deal with heavy stigma as a result of pregnancy. Their families reject or insult them. Most struggle to raise a child when they are children themselves.

In Tanzania, we interviewed Sawadee - she chose this pseudonym - who was in the third grade of secondary school when she got pregnant. Her neighbor - an adult man - followed her for a few years. He used to give her small gifts, which she felt she had to accept. At first, she refused to have sex with him, but her friends advised her to accept the money he was offering, as she would be better off. She got pregnant the first time they had sex, when she was only 16. Her parents kicked her out of their home, and she was expelled from school. For years, she dreamed of becoming a nurse - but getting back into education was nearly impossible: Sawadee and her daughter suffered hardship. She could only find very precarious jobs. "When I failed to get money, me and my baby didn't get a meal," she told us. Girls understand that pregnancy could mean the end of their hard-gained efforts to get a secondary or university education. Like Sawadee, they know pregnancy can destroy their ambitions.

But many girls also tell us about the challenges they face at school, and in their communities, which contribute to their vulnerability. Many girls we have spoken with became pregnant because they were raped, sexually exploited in exchange for food, money or grades or coerced into sex by adultsincluding their own teachers, and at a worryingly high rate, by boys their age.

But many also get pregnant following a sexual relationship they consented to with boys - often students or others they know in their communities. The lack of sexual education - or even how to protect themselves - plays a part in this.

Education ministries have a great tool available to act and respond in an empowering way. Age-appropriate comprehensive sexuality education can help students understand sexuality and reproduction and how to protect themselves from pregnancy or sexually transmitted infections. But importantly, this education can help them recognize that they can use their right of consent to decide when to have sexual relationships, and understand that sexual exploitation and abuse are crimes and that no one should subject them to sexual violence. Yet, many African governments refuse to provide comprehensive sexuality education in schools. Where it is provided it is often substandard. Most provide a half-baked and often unscientific version that focuses on the biology of reproduction or a stigmatized approach to adolescent sexuality that does little to protect students.

African governments have a legal obligation to promote girls' rights to education without discrimination. Sierra Leone should immediately lift the ban and not just allow all girls access to education, but support them fully to return to school. The African Union should call on Sierra Leone, Tanzania and all African governments to safeguard all girls' potential, and stop the exclusion of pregnant girls from schools.

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

Dubai's skyline, United Arab Emirates. 

© 2015 REUTERS/Karim Sahib/Pool

(Beirut) – United Arab Emirates (UAE) prison authorities are denying non-national HIV-positive detainees in at least one UAE prison regular and uninterrupted access to lifesaving antiretroviral treatment, Human Rights Watch said today. Detainees living with HIV are also segregated from the rest of the prison population in an isolated area and report facing stigma and systemic discrimination.

Multiple sources, including former non-national detainees in Al Awir Central Jail’s HIV units in Dubai, told Human Rights Watch that, while they are tested for HIV every three to six months, unlike the Emirati detainees held with them, HIV treatment is often delayed and interrupted, and sometimes denied altogether. Sources close to them reported that four prisoners said in September that they had not received any medication for between three and five months and that this is not the first time prison authorities have delayed critical medical treatment.

“The UAE has an obligation to provide health care, including antiretroviral medicines, to all prisoners in their custody without discrimination,” said Michael Page, deputy Middle East director at Human Rights Watch. “Denying, delaying, and interrupting treatment for HIV for non-national prisoners is a flagrant violation of the right to health and potentially the right to life.”

Continuity of care is crucial to effective treatment of HIV, resulting in decreased levels of circulating virus (or viral load), protecting an individual’s immune system, and reducing the possibility of transmission. Interruptions in treatment can increase the risk of developing viral resistance and lead to a much higher risk of fatal opportunistic infections.

One person with direct knowledge of the case told Human Rights Watch that a prisoner who recently fell seriously ill after being denied treatment for nearly four months said his test results showed an elevated viral load and a dangerously low count of infection-fighting CD4 cells, both of which can be warning signs of the possible onset of AIDS, which dramatically decreases life expectancy. Sources said that three other prisoners also expressed concern about their worsening health conditions and that prison officials were apparently indifferent to their repeated requests for appropriate care. Human Rights Watch is withholding details to protect people from retaliation.

Men and women who live with HIV are held in segregated units away from the rest of the prison population in Al Awir – the men in one area and the women in another. They include people serving sentences for nonviolent drug or financial crimes, others convicted of murder and other violent crimes, and others held in pre-trial detention who are sent to the central prison before facing trial or receiving a sentence only because they tested positive for HIV.

One former detainee said Emirati authorities held him in Al Awir Central Jail for five months without charge before transferring him to Al Sadr prison in Abu Dhabi. He said he was kept in solitary confinement for eight months in Al Sadr and received no treatment throughout his year-long detention in the UAE.

He also described the stigma and discrimination he and other prisoners living with HIV suffered in Al Awir: “The guards knew nothing about HIV, they were afraid even to enter our block, they wore special masks and gloves, and talked to us through glass. They treated us like wild and dangerous animals.”

The former detainee said that in al Sadr prison, when the conditions of prisoners living with HIV worsened, prison authorities would place them in isolation cells for several days. He said two prisoners living with HIV died during his stay at al Sadr.

Segregating detainees living with HIV from the rest of the prison population in Al Awir Central Jail also denies them access to the prison library and other amenities, sources said. “They put you there [in the segregated unit] and forget about you,” said another former detainee.

One former detainee in Al Wathba Central Prison in Abu Dhabi said that people living with HIV, hepatitis C, and other communicable disease in al Wathba were also segregated from the rest of the prison population. She is not HIV-positive.

International guidelines on human rights standards in prisons state that prisoners have a right to medical services, without discrimination, at least equivalent to services available to people in the community, including for HIV, tuberculosis, and other infectious diseases.

However, while the UAE provides HIV-positive citizens with free HIV treatment and care programs, and while it claims to do so for expatriates as well, according to local regulations, the government does not grant residency or work visas to persons with certain communicable diseases, including HIV. Moreover, non-nationals already in the country who test positive for these diseases are subjected to deportation proceedings. In 2012, a Gulf News article on the deportation of four female HIV-positive prisoners quoted a Dubai Central Jail prison official citing a decision by the public prosecutor to deport all HIV-positive prisoners, including those serving life sentences.

The denial of adequate medical care in UAE prisons and detention facilities extends beyond prisoners living with HIV and other communicable diseases and is most common in state security facilities, where torture is systemic. In May 2019, Human Rights Watch reported the death of a cancer-stricken detainee, Alia Abdel Nour, following years of mistreatment and denial of adequate medical care by security forces. UAE authorities ignored repeated calls by European Parliament members, United Nations experts, and members of her family for her release on health grounds.

Over the past year, there have also been increased concerns for the deteriorating health of two unjustly detained rights activists, Ahmed Mansoor and Nasser bin Ghaith, who are being held in dismal prison conditions and denied access to health care in Al Sadr and Al Razeen prisons, respectively.

As a UN member state, the UAE committed to joining worldwide efforts to end AIDS as a public health threat by 2030. To honor that commitment, UAE authorities should make sure that all prisoners living with HIV are receiving the critical care they require. The authorities should also allow independent international monitors to enter the country and regularly monitor prison and detention facilities, Human Rights Watch said.

On November 19, 2019, under the patronage of Sheikh Mohammad bin Zayed Al Nahyan, Crown Prince of Abu Dhabi, the UAE will host a forum for global health leaders to share insights and best practices to eradicate infectious diseases. 

“Public health institutions and HIV activist networks should pressure authorities to live up to their obligations and to their declarations of tolerance by ending this abusive practice and providing adequate medical care to all prisoners equally,” Page said.

 

Posted: January 1, 1970, 12:00 am

Video

Iran: Sanctions Threatening Health

The Trump administration’s broad sanctions on Iran have drastically constrained the ability of the country to finance humanitarian imports.

(Washington, DC) – The Trump administration’s broad sanctions on Iran have drastically constrained the ability of the country to finance humanitarian imports, including medicines, causing serious hardships for ordinary Iranians and threatening their right to health, Human Rights Watch said in a report released today. The administration in Washington should take immediate steps to ensure a viable channel exists for trade of humanitarian goods with Iran.

The 47-page report, “‘Maximum Pressure’: US Economic Sanctions Harm Iranians’ Right to Health,” documents how broad restrictions on financial transactions, coupled with aggressive rhetoric from United States officials, have drastically constrained the ability of Iranian entities to finance humanitarian imports, including vital medicines and medical equipment. While the US government has built exemptions for humanitarian imports into its sanctions regime, Human Rights Watch found that in practice these exemptions have failed to offset the strong reluctance of US and European companies and banks to risk incurring sanctions and legal action by exporting or financing exempted humanitarian goods. The result has been to deny Iranians access to essential medicines and to impair their right to health. Under international law, the US should monitor the impact of its sanctions on Iranians’ rights and address any violations sanctions cause. 

“Trump administration officials claim they stand with the Iranian people, but the overbroad and burdensome US sanctions regime is harming Iranians’ right to health, including access to life-saving medicines,” said Sarah Leah Whitson, Middle East director at Human Rights Watch. “The comprehensive web of US sanctions has led banks and companies to pull back from humanitarian trade with Iran, leaving Iranians who have rare or complicated diseases unable to get the medicine and treatment they require.”

Between November 2018 and October 2019, Human Rights Watch interviewed 21 people, including Iranian medical professionals, former or current employees of Iranian and international pharmaceutical importers of medicines, and lawyers and NGO workers with firsthand knowledge of the challenges of humanitarian operations in Iran. Some of the interviewees live in Iran, and many of those interviewed either previously lived in Iran and/or continue to travel to Iran but reside outside the country. Human Rights Watch interviewed US government policy experts with direct or indirect experience of working on Iran issues. A Human Rights Watch researcher also corresponded with several Iranians who had commented on social media about the inaccessibility of needed medicine for themselves or their family members. Human Rights Watch relied on available Iranian and US government official statements and analyzed economic and trade data produced by Iran’s Central Bank, Iran’s Food and Drug Administration (Sazman-e-Ghaza-va-Daroo), and Eurostat, the statistical office of the European Union based in Luxembourg.

Since the Trump administration formally withdrew the US from the international nuclear agreement with Iran in May 2018, it has re-imposed previously suspended nuclear related economic sanctions, including on oil exports, and added new sanctions. The US Treasury Department predicted the sanctions would lead to Iran’s “mounting financial isolation and economic stagnation.” Open-ended and comprehensive sanctions such as those that the Trump administration has imposed on Iran have negatively impacted the humanitarian needs and the enjoyment of the right to health for millions of Iranians, Human Rights Watch said.

On October 25, 2019, with the announcement of new sanctions on Iran, Treasury Secretary Steven T. Mnuchin said that “This administration remains committed to the unfettered flow of humanitarian aid to the Iranian people, who have suffered for forty years under the mismanagement of this corrupt regime.” However, US officials also have sent a contradictory message, saying that the strategy is in fact to cause enough distress for the Iranian people that they force the government to change its behavior – a recipe for infringing on Iranians’ economic rights. On February 14, 2019, US Secretary of State Mike Pompeo told CBS News: “Things are much worse for the Iranian people [with the US sanctions], and we are convinced that will lead the Iranian people to rise up and change the behavior of the regime.”

"The recent US Treasury and State Department announcement of a 'new humanitarian mechanism' for trade with Iran is a rare implicit acknowledgement that broad US sanctions on Iran have restricted the flow of humanitarian goods into the country,” Whitson said. “The US government should get serious about addressing the harm resulting from its cruel sanctions regime by creating a viable financial channel with reasonable requirements for companies, banks, and groups to provide humanitarian goods for people in Iran instead of requiring more burdensome hurdles.”

The October 25 designation of Iran as a “jurisdiction of primary money laundering concern under Section 311 of the USA PATRIOT Act,” constitutes an escalation of US financial sanctions against Iran. It includes a new mechanism to “increase transparency of permissible trade” with Iran. There is serious concern that complying with the burdensome requirements of the new mechanism will not be feasible for companies. It is also unclear whether compliance will supersede the prohibition on any trade, including humanitarian trade, with designated entities under terrorism provisions. As one former US official involved in Iran sanctions policy put it: “I suspect most will see this mechanism less as a humanitarian channel and more as an intelligence gathering function to enable additional US sanctions. For those of us seeking a real channel, this ain’t it.”

Human Rights Watch found that US economic sanctions on Iran, despite the humanitarian exemptions, are causing unnecessary suffering to Iranian citizens afflicted with a range of diseases and medical conditions. Some of the worst affected are Iranians who have rare diseases and/or conditions that require specialized treatment and are unable to acquire previously available medicines or supplies. This includes patients with leukemia, epidermolysis bullosa (EB, a type of disease that causes fragile, blistering skin), epilepsy, and chronic eye injuries from exposure to chemical weapons during the Iran-Iraq war.

People with severe forms of EB have been unable to get specialized bandages and are significantly more likely to get bacterial infections and develop sepsis. Children with epilepsy resistant to common treatments and unable to get imported medicines have frequent, uncontrolled seizures that risk injury and over time severe and permanent brain damage.

Over the past year, the US Treasury Department has added a large number of institutions, including Iranian government and private banks, to the Specially Designated Nationals and Blocked Persons List for the sanctions. US and non-US companies and financial institutions that engage in transactions with these entities can be prosecuted in the US. The serious regulatory and due diligence requirements placed on international firms trading with Iran have left only a small number of companies and banks with the capacity to finance trade with Iran and a willingness to accept the increased financial and legal risks.

Excessive caution or “overcompliance” by banks and pharmaceutical companies is a significant factor for this, Human Rights Watch said. Human Rights Watch found, for instance, that a European company refused to sell the special bandages needed by patients with EB despite the humanitarian exemption. Human Rights Watch reviewed correspondence with two other banks in which they refused to authorize humanitarian transactions with Iran.

The Trump administration’s broad use of “terrorist” designations further threatens humanitarian trade with Iran. The April designation of the Islamic Revolutionary Guard Corps, part of Iran’s military force, as a Foreign Terrorist Organization, could affect up to 11 million Iranians, the New York Times reported. While these designations do not apply to medicines, they increase the potential risks for companies if they end up in transactions with designated entities. Moreover, the September 20 decision to impose further sanctions on Iran’s Central Bank severely restricts the last remaining Iranian financial institution able to engage in foreign exchange transactions involving humanitarian imports, rendering the “humanitarian exemption” nearly meaningless.

“We have now, for a full year, tried to find banks that are able and willing to transfer money from donors [for our humanitarian operations],” Jan Egeland, secretary general of the Norwegian Refugee Council, which supports thousands of Afghan refugees in Iran, said in August. “But we are hitting a brick wall on every side. Norwegian and other international banks are afraid of US sanctions to transfer the money that governments have given for our vital aid work.”

Under international law, a country or coalition of states enforcing economic sanctions should consider the impact on the human rights of the affected population, especially their access to goods essential to life, including medicines and food. Human Rights Watch opposes sanctions that have a disproportionately negative impact on the human rights of the affected population, or that create unnecessary suffering, in particular for vulnerable populations.

The US government should work to establish viable financial channels for humanitarian trade with Iran and take immediate steps to ensure that humanitarian exemptions are effective in facilitating Iranians’ access to medicine and medical equipment, Human Rights Watch said.

“Ordinary Iranians are bearing the brunt of America’s sanctions policy, and their hearts and minds will be keeping tabs on the parties that are causing them harm,” Whitson said.

While sanctions diminish Iran’s capacity to meet the needs of residents, they do not take away Iran’s human rights obligations. The Iranian government should ensure that citizens and residents can enjoy their right to health without discrimination and should take all possible measures to reduce the negative impact of sanctions on vulnerable groups. This includes the government’s obligation to prevent corruption and misuse of resources.

Posted: January 1, 1970, 12:00 am

Summary

In May 2018, the Trump administration formally withdrew from the international nuclear agreement with Iran, known as the Joint Comprehensive Plan of Action (JCPOA), agreed upon by the Obama administration in July 2015. Over the next 120 days, until November 5, 2018, the US government re-imposed all economic sanctions related to Iran’s nuclear program that had been previously lifted, including “secondary sanctions” on non-US entities that conduct financial or commercial transactions with Iran.

Though the US government has built exemptions for humanitarian imports into its sanction regime, broad US sanctions against Iranian banks, coupled with aggressive rhetoric from US officials, have drastically constrained Iran’s ability to finance such humanitarian imports. The consequences of redoubled US sanctions, whether intentional or not, pose a serious threat to Iranians’ right to health and access to essential medicines—and has almost certainly contributed to documented shortages—ranging from a lack of critical drugs for epilepsy patients to limited chemotherapy medications for Iranians with cancer.

At the core of the harmful knock-on effects of renewed US sanctions on Iran is that in practice, these sanctions have largely deterred international banks and firms from participating in commercial or financial transactions with Iran, including for exempted humanitarian transactions, due to the fear of triggering US secondary sanctions on themselves. As a result, Iranians’ access to essential medicine and their right to health is being negatively impacted, and may well worsen if the situation remains unchanged, thereby threatening the health of millions of Iranians.

On several occasions, US officials have indicated that the pain US sanctions are causing for ordinary Iranians is intentional, part of a strategy to compel Iranian citizens to demand their autocratic government to “change behavior” – a recipe for collective punishment that infringes on Iranians’ economic rights. For instance, on February 14, 2019, US Secretary of State Mike Pompeo told CBS News, "Things are much worse for the Iranian people [with the US sanctions], and we are convinced that will lead the Iranian people to rise up and change the behavior of the regime.” The US Treasury Department itself predicted that US policies would lead to Iran’s “mounting financial isolation and economic stagnation.”  

The Trump administration, beyond re-imposing economic sanctions that had been suspended under the JCPOA, has repeatedly targeted Iranian financial institutions. On October 16, 2018, for example, the Office of Foreign Assets Control (OFAC) of the US Treasury Department further restricted Iran’s access to global financial markets by adding about 20 Iranian institutions to the list of Specially Designated Global Terrorists (SDGTs) for “supporting military force that recruits and trains child soldiers.”

Then, with the total re-imposition of sanctions suspended under the JCPOA, in November 2018, the US Treasury Department added at least 37 Iranian governmental and privately-owned banks, as well as Iran’s national oil company, to the Specially Designated Nationals and Blocked Persons List (SDN) of individuals subject to sanctions. Any company subject to US jurisdiction, US as well as non-US, that engages in transactions with SDNs can be subject to prosecution in the US, creating a significant risk for businesses, banks and global financial institutions essential for facilitating the import of essential medicines and medical equipment into Iran.

Previously, the US government had lifted sanctions on non-US entities as part of the JCPOA. The serious regulatory and due diligence requirements placed on international firms trading with Iran have left only a limited number of companies and banks with the capacity to finance trade with Iran and willing to accept the increased financial and legal risks of US secondary sanctions that come with those transactions.

These restrictions on financing, combined with the sharp depreciation of the Iranian currency, the rial, have resulted in severely limiting Iranian companies and hospitals from purchasing essential medicines and medical equipment from outside Iran that residents depend upon for critical medical care. Moreover, renewed US sanctions have directly impacted families’ purchasing power, contributing to inflation rates of around 30 percent in the past year. Iran’s nearly universal health care coverage currently absorbs a significant portion of health care costs. But the failure of this system, which is already under serious financial stress, will likely have devasting effects on millions of patients.

In July 2019, the UN Special Rapporteur on the situation of human rights in Iran said that he is “not only concerned that sanctions and banking restrictions will unduly affect food security and the availability and distribution of medicines, pharmaceutical equipment and supplies, but is also concerned at their potential negative impact on United Nations and other operations and programs in the country.”

Human Rights Watch found that current economic sanctions, despite the humanitarian exemptions, are causing unnecessary suffering to Iranian citizens afflicted with a range of diseases and medical conditions. Some of the worst-affected are Iranians with rare diseases and/or conditions that require specialized treatment who are unable to acquire previously available medicines or supplies. This includes people with leukemia, epidermolysis bullosa (EB, a type of disease that causes fragile, blistering skin), or epilepsy, and individuals with chronic eye injuries from exposure to chemical weapons during the Iran-Iraq war.

The consequences for these individuals can be catastrophic: people with severe forms of EB are now unable to access specialized bandages and are at significantly increased risk for bacterial infections, sepsis, fusion of fingers, and contractures of joints. Individuals with epilepsy who are resistant to common treatments and unable to access foreign-made medicines may suffer frequent, uncontrolled seizures that risk injury and result over time in severe, permanent brain damage. Shortages of essential medicines can affect a much broader range of patients as well. For example, an Iranian journalist has reported on severe complications after a Caesarean section believed to be related to the use of a “non-standard” anesthesia medicine because of lack of access to higher quality medication.

The abusive consequences of secondary sanctions, demonstrated by research conducted by Siamak Namazi, an Iranian-American analyst, on the sanctions regime during the Obama Administration prior to the JCPOA, have inevitably recurred with the re-imposition of sanctions by the Trump administration. But the difference now with the Trump Administration’s Iran sanctions is “that the US has re-imposed the sanctions it lifted pursuant to the nuclear deal and it has layered on many more, including doing things like designating some Iranian financial institutions not previously designated and that were previously used to facilitate food, medicine and medical imports,” Elizabeth Rosenberg, a former US Treasury Department sanctions official, told NPR. As Rosenberg pointed out, “most of the big Iranian banks are designated” – i.e., under sanction – and smaller banks “may have less capacity to handle cross-border financial transactions.” Iran is currently able to conduct business through a very limited number of banks and financial institutions closely affiliated with countries that had initially received waivers from the US to continue purchasing Iran’s oil, notably China, India and Turkey. These banks used Iran’s oil revenues, held in escrow accounts, to execute financial transactions for imports of medicine and other items prioritized by the Iranian government as essential goods.

Moreover, the tone of US government officials in public and private concerning economic transactions with Iranian institutions has contributed to companies and banks’ hesitation to engage in trade with Iran. For instance, Richard Grenell, the US Ambassador to Germany, told a German paper on May 6, 2019 that, “You can do as much business as you want in Iran, but we have a say with regards to your visa.” “Because if you do something, we’re not going to agree to let you enter our country,” he added.

Excessive caution or “overcompliance” by banks and pharmaceutical companies wary of falling afoul of US sanctions is a significant factor in limiting Iran’s access to funds for imports of medicines and medical equipment. As former French ambassador to Washington Gérard Araud told a Hudson Institute gathering in October 2018, “the fact is that banks are so terrified by the sanctions that they don’t want anything to do with Iran.” In the case of the specialized bandages needed for patients with epidermolysis bullosa, Human Rights Watch found evidence that a European company refused to sell the bandages as a result of sanctions despite the humanitarian exemption. In two other instances, Human Rights Watch reviewed correspondence from banks refusing to authorize humanitarian transactions with Iran after the imposition of sanctions.

This fear has even caused problems for humanitarian actors supporting thousands of Afghan refugees in Iran. The Norwegian Refugee Council (NRC) is the largest of five international NGOs working in Iran, where they have implemented programs in areas like education for over seven years. However, they are now facing similar hurdles financing their operations due to sanctions. “We have now, for a full year, tried to find banks that are able and willing to transfer money from donors [for our humanitarian operations],” said NRC head Jan Egeland in August 2019, “but we are hitting a brick wall on every side. Norwegian and other international banks are afraid of US sanctions to transfer the money that governments have given for our vital aid work.” 

According to individuals familiar with international humanitarian trade with Iran, the broad restrictions on financing of Iran-related trade have forced Iranian pharmaceutical companies to reroute even transactions that are fully authorized under US sanctions law through the hawala system, an informal remittance network that relies on existing family or other relationships of trust to make payments without transferring money. But, use of the hawala system often results in increased transaction costs and is difficult to use due to Iranian government health regulations, doctors and importers say. This has led importers to choose alternative pharmaceuticals and equipment of lower quality. In interviews with Human Rights Watch, as well as in posts on social media, patients reported suffering from serious side-effects when they had to choose medical alternatives after they either could not find or could not afford their usual medication in the market. Human Rights Watch is not able to independently verify the reported medical side effects resulting from the use of lower quality medicine or medical equipment.

The Trump administration’s broad use of “terrorist” designations further threatens humanitarian trade with Iran. The US has failed to clarify its April 15 designation of the Islamic Revolutionary Guard Corps (IRGC), a formal part of Iran’s military force, as a Foreign Terrorist Organization (FTO), which could impact up to 11 million Iranians. Even though medicines are exempted from sanctions, “they do become prohibited if they are found to be going to a designated actor or entity,” Richard Nephew, a former State Department office, told the BBC. Referring to such a designation, Jan Egeland from NRC told the audience in a conference on humanitarian aid that while governments in Washington, London, and Bern may not intend to sabotage his organization’s work with refugees, “no one is able to tell me that if you do [your operation] this way, [neither] you nor your staff will be in violations of our rules.”

The Trump administration’s September 20, 2019 decision to impose further sanctions on Iran’s Central Bank under its “counterterrorism authority” severely restricts the last remaining Iranian financial institution able to engage in foreign exchange transactions involving humanitarian imports, rendering the “humanitarian exemption” meaningless. According to Brian O’Toole, a former senior advisor to the director of OFAC, its impact “will be to further impair the delivery of food and medicine to the Iranian people.” On October 14, a representative of Iran’s drug importers association told Iranian media that after the US declared these sanctions, South Korean banks have suspended their relations with Iran.

On October 25, 2019, the US Departments of the Treasury and State announced a further escalation of US financial sanctions against Iran by the Financial Crimes Enforcement Network (FinCEN) bureau of the Treasury department, while at the same time announcing a new mechanism to “increase transparency of permissible trade” with Iran. The FinCEN action is aimed at depriving the Iranian government the ability to use “so-called humanitarian trade to evade sanctions and fund its malign activity” by designating Iran as a “jurisdiction of primary money laundering concern under Section 311 of the USA PATRIOT Act.” This designation is known colloquially as the “financial death penalty” because of the severe restrictions it places on a country’s financial institutions.

At the same time, the Treasury and State Departments also appeared to acknowledge the need to mitigate the consequences of the September 2019 US sanctions designation of the Central Bank of Iran (CBI) by jointly offering a humanitarian “mechanism” for humanitarian transactions in exchange for a commitment by companies and banks to conduct “enhanced due diligence.” The requirement for enhanced due diligence includes information about customers, including the identities of all consignees and intermediaries involved in the transactions, as well as monthly statement balances with the value, currency, and balance date of any account of an Iranian financial institution held at the participating host nation’s foreign financial institutions that is being used for humanitarian transactions. Moreover, the entity hoping to use the mechanism should provide a written commitment from any Iranian distributors involved in the transactions that they will not allow the goods to be sold or resold to Iranian designated individuals or entities and that the Iranian distributor will impose this obligation on downstream customers. It is, however, not clear from the guidance if complying with these burdensome requirements would be feasible for companies and whether it will supersede the prohibition on any trade, including humanitarian trade, with designated entities under terrorism provisions.

The impact of these parallel policy pronouncements remains to be seen. To many close observers of US sanctions policy, the humanitarian mechanism appeared unlikely to actually increase humanitarian exports to Iran. Instead, the combination of onerous requirements and a thinly veiled intelligence gathering function appeared aimed at garnering publicity rather than realistically confronting the humanitarian problems caused by US sanctions against Iran. 

For example, a sanction lawyer familiar with the issue told Human Rights Watch that the requirement for foreign banks to  provide far-reaching monthly reports to the US Treasury department with respect to any humanitarian transactions involving Iran in exchange for comfort letters from OFAC as to their sanctions exposure is a “new bureaucratic hurdle for humanitarian trade with Iran.”

Two former US and Treasury department officials with close knowledge of the US sanctions regime on Iran also reacted to this announcement by expressing skepticism about its effects. Brian O’Toole reacted to the announcement on Twitter by writing, “This does not help, and in fact probably makes the situation worse.” Richard Nephew also tweeted that “in the context of the 311 finding [USA Patriot Act money laundering provision] AND general atmosphere, I suspect most will see this mechanism less as a humanitarian channel and more as an intelligence gathering function to enable additional U.S. sanctions. For those of us seeking a real channel, this ain't it.”

A country or coalition of states enforcing economic sanctions should consider the impact on the human rights of the affected population, especially regarding their access to goods essential to life, including medicines and food. Open-ended and comprehensive sanctions such as those that the Trump administration has imposed on Iran have negatively impacted the humanitarian needs and the enjoyment of human rights of Iran’s general population. Human Rights Watch opposes sanctions that have a disproportionately negative impact on the enjoyment of human rights by civilian populations, or create unnecessary suffering, in particular for vulnerable populations.

The harmful effect of US sanctions on Iranians’ access to food and medicine should not be a surprise in light of similar effects observed in other sanctions regimes. The multilateral sanctions on Iraq in the 1990s, for example, notoriously decimated the Iraqi economy and “had a detrimental effect on the health of the population,” according to several health researchers.

The US government should take immediate steps to ensure humanitarian exemptions are effective in facilitating Iranians’ access to medicine and medical equipment. Most importantly, the US government should publicly clarify at the highest level that banks and companies face no legal or financial risks in exporting or financing exempted humanitarian goods to Iran. On August 6, 2019, OFAC issued “Guidance Related to the Provision of Humanitarian Assistance and Support to the Venezuelan People,” stating that OFAC “is committed to ensuring that humanitarian support can flow” to Venezuela and “encourag[ing] US persons to avail themselves to these authorizations,” including remittances. OFAC should issue an equivalent public “guidance” for Iran and adopt it as policy.

The imposition of sanctions does not diminish the human rights obligations of the targeted state. The Iranian government needs to take steps "to the maximum of its available resources" to provide the greatest possible protection for the rights of each individual within its jurisdiction. While sanctions inevitably diminish Iran’s capacity to meet the needs of its residents, the government is obligated to ensure that citizens and residents can enjoy their right to health without discrimination and should take all possible measures, including negotiations with other states, to reduce to a minimum the negative impact of sanctions on vulnerable groups. This includes the government’s obligation to prevent corruption and misuse of resources. In order to reduce obstacles to other states’ establishing humanitarian trade mechanisms with Iranian financial institutions, Iran should also ratify UN counterterrorism financial transparency initiatives.

Recommendations

To the US Government

  • Publicly clarify at the highest level that banks or companies face no legal or financial risks in exporting or financing exempted humanitarian goods to Iran.
  • Establish a mechanism to expedite financing of humanitarian exports to Iran.
  • Encourage other states to establish mechanisms for financing humanitarian imports to Iran, such as the INSTEX mechanism proposed by several European states.
  • The US should initiate diplomatic efforts, including direct talks with Iran, to ensure that humanitarian channels remain open for Iran to import essential medicine and medical equipment in order to safeguard Iranians’ right to health.

To the US Treasury Department, Office of Foreign Assets Control

  • Establish a due diligence assistance program for companies wanting to export humanitarian goods to Iran
  • Authorize a financial channel for humanitarian trade, either directly or through governments that have expressed interest, such as the Swiss government.
  • Issue clear guidance regarding protection of humanitarian trade with Iran in light of the US designation of the Central Bank of Iran (CBI) as a Specially Designated National (SDN).
  • Publish the list of licenses granted for humanitarian trade and other steps taken to address the humanitarian need of Iranians since August 2018 and going forward publish monthly information on humanitarian trade licenses.
  • Dedicate resources for direct outreach to companies and financial institutions to clarify humanitarian exemptions.  
  • Publicly clarify that US and non-US banks and companies face no legal risks if transactions with Iran involve only exempted humanitarian goods.
  • Put in place and make public humanitarian exemption provisions for the Central Bank of Iran and other Iranian banks involved in financing imports of medicines and other humanitarian goods.

To the US State Department

  • Clarify and issue guidance regarding the implications for humanitarian trade of the State Department’s designation of Iran’s Islamic Revolutionary Guard Corps (IRGC) as a Foreign Terrorist Organization and issue clear guidance regarding the continued facilitation of humanitarian trade.
  • Appoint a designated staff with authority to ensure continuation of humanitarian trade with Iran.
     

To the US Congress

  • Request the Government Accountability Office to conduct a study on the impact of the United States government’s economic sanctions on the humanitarian situation in Iran.
  • Pass legislation obligating the US Treasury Department to establish a mechanism to finance humanitarian exports to Iran.
  • Pass legislation requiring the US Treasury Department to put in place humanitarian exemption provisions for the Central Bank of Iran and other Iranian banks involved in financing imports of medicines and other humanitarian goods.
  • Request OFAC to publish the list of licenses granted for humanitarian trade and other steps taken to address the humanitarian needs of Iranians since August 2018 and publish monthly information about licenses and exemptions issued for humanitarian trade and any other steps taken to mitigate the negative impact of sanctions on Iranians’ right to health.
  • Hold public hearings on the impact of US sanctions on the impact of sanctions on the health of Iranians and their access to medicines.

To the European Union and Member States

  • Operationalize a viable trade exchange mechanism to support humanitarian trade with Iran.
  • Press the US government to create or support the creation of a viable channel of financial transactions for humanitarian trade.

To the Iranian Government

  • Prioritize allocations of resources for imports of medicine, raw materials for production of medicine, and medical equipment.
  • Improve programs providing safety nets for Iran’s most marginalized populations, including people with disabilities.
  • Combat corruption and misuse of public funds in accordance with international human rights standards.
  • Take all possible measures, including negotiations with other states and ratification of counterterrorism financial transparency initiatives such as the Financial Action Task Force (FATF), to reduce obstacles to other states’ establishing humanitarian trade mechanisms.
  • Allow independent international organizations access to Iran to conduct research on key health and human rights concerns including thorough follow-up assessments of the impact of sanctions on the Iranian population.

Methodology

The Iranian government has rarely allowed international human rights organizations such as Human Rights Watch to enter the country to conduct independent investigations. Iranian citizens are often wary of carrying out extended conversations on human rights issues via telephone or email, fearing government surveillance that is widespread across social media platforms such as Facebook, Twitter, and the Telegram messaging application. Authorities often accuse critics inside Iran, including human rights activists, of being agents of foreign states or entities and prosecute them under vaguely-defined national security charges in the country’s penal code.

During several meetings with Iranian officials in New York as well as through an official letter on April 25, 2019, Human Rights Watch requested permission to travel to Iran to conduct this research. Iranian authorities did not respond to Human Rights Watch’s request to visit Iran or subsequent requests for information.

Between November 2018 and October 2019, Human Rights Watch interviewed six Iranian medical professionals, four former or current employees of Iranian and international pharmaceutical companies, two importers of medicines, two lawyers and four trade specialists familiar with humanitarian trade with Iran, three NGO workers with firsthand knowledge about the challenges of humanitarian operations in Iran, two experts on international sanctions law, and four other experts on US government policymaking on Iran and US sanctions policy. Some of the interviewees live in Iran, and many of those interviewed either previously lived in Iran and/or continue to travel to Iran but reside outside the country. Human Rights Watch interviewed US government policy experts with direct or indirect experience of working on Iran issues. A Human Rights Watch researcher also corresponded with several Iranians who had commented on social media about the inaccessibility of needed medicine for themselves or their family members.

Human Rights Watch reached out to 27 pharmaceutical and medical equipment companies that have sold products in the Iranian market, requesting information on the impact of re-imposed sanctions on their exports to the Iranian market. At the time of publication, three companies had declined to provide any information while the others failed to respond altogether. A copy of the letter sent to these companies is available in Appendix I.

All interviewees were informed of the purpose of the interview and the ways in which the information would be used, and when requested they were given assurances of anonymity. This report uses pseudonyms for all interviewees and withholds other identifying information for individuals and companies to protect their privacy and security. None of the interviewees received financial compensation or other incentives for speaking with Human Rights Watch.

Human Rights Watch relied on available Iranian and US government official statements and analyzed economic and trade data produced by Iran’s Central Bank, Iran’s Food and Drug Administration (Sazman-e-Ghaza-va-Daroo), and Eurostat, the statistical office of the European Union based in Luxembourg.

On May 30, 2019, Human Rights Watch wrote to the US Treasury Department’s Office of Foreign Assets Control (OFAC) requesting clarification on steps the US has taken to mitigate the harm of US sanctions to the Iranian people. The office acknowledged receipt of the letter, but as of time of publishing has not responded. A copy of the original correspondence is available in Appendix II. On October 16, 2019, Human Rights also wrote a similar letter to the Deputy Assistant Secretary for Counter Threat Finance and Sanctions at the Bureau of Economic and Business Affairs of the US State Department. A copy of this letter is available in Appendix III. Additionally, Human Rights Watch wrote to Iranian Foreign Minister Dr. Mohammad Javad Zarif; a copy of the letter is available in Appendix IV.

 

I. Timeline of US Economic Sanctions on Iran

US economic sanctions on Iran go back to the early years of US relations with the Islamic Republic, dating back to the embassy hostage crisis of 1979-81. Washington designated Iran a “state sponsor of terrorism” after the October 1983 bombing of the US Marine barracks in Beirut, banning US sales of weapons and dual-use items, as well as financial assistance, to countries that provide military goods to Iran. Various US laws and executive orders bar conventional arms transfers and transfers of technology that could have military applications, or ban transactions with Iranian entities alleged to support terrorist groups. These sanctions were not suspended by the JCPOA.[1] In addition, the United States has imposed sanctions on designated individuals and institutions for various purposes, including human rights abuses, that were not suspended under the JCPOA. Finally, entities seen as violating US sanctions by exporting to Iran or conducting financial transactions with Iran themselves risk being subject to so-called secondary sanctions.

In 1995, the Clinton administration banned US trade with and investments in Iran, and in 1997 prohibited US exports to other countries that would be incorporated into products imported by Iran. The 1996 Iran and Libya Sanctions Act authorized penalties against firms of other countries involved in Iran’s petroleum sector.[2] In 2012, the Iran Threat Reduction and Syria Human Rights Act, as well as Executive Order 13622, extended these restrictions to oil purchases from Iran, oil-export related insurance, and financial transactions involving the US financial system. Congress added provisions to the National Defense Authorization Act for the 2012 fiscal year that penalized foreign banks conducting a “significant financial transaction” with the Central Bank of Iran or any Iranian bank under US sanctions.[3] Since the US dollar is the prevailing international currency, these sanctions impaired Iran’s ability to repatriate hard currency. A 2013 executive order extended sanctions to Iran’s automotive sector.

Following the passage of UN Security Council Resolution 1929 (June 2010), dealing with Iranian nuclear activities, the European Union imposed sanctions “nearly as extensive” as those of the United States.[4] The EU suspended these sanctions as part of the JCPOA in 2016 and as of this writing they remain suspended.

The US Treasury Department’s Office of Foreign Assets Control (OFAC) has issued general licenses that permit the export to Iran of “certain food items, medicines, and basic medical supplies to Iran” without requiring further specific authorization.[5] These provisions also authorize financial transactions to support Iranian imports of these categories of goods from the United States or from a third country. General licenses, however, are capped at $500,000. According to the guidance OFAC issued on July 25, 2013, “the financing or facilitation of such sales by non-U.S. persons does not trigger sanctions, so long as the transaction does not involve certain U.S. designated persons (such as Iran’s Islamic Revolutionary Guard Corps (IRGC) or a designated Iranian bank) or proscribed conduct.”[6]

The definition of drugs under US export regulations includes prescription and over-the-counter medicines and medical devices, but certain vaccines, biological and chemical products, and medical devices (including medical supplies, instruments, equipment, equipped ambulances, institutional washing machines for sterilization, and vehicles carrying medical testing equipment) are not covered under the general license issued for humanitarian trade. Potential dual use of these substances and items in other industries such as manufacturing of weapons is the stated reason for this exclusion.

In July 2015, the UN Security Council endorsed the JCPOA and terminated the nuclear-related sanctions.[7] In January 2016, under the terms of the JCPOA, the EU lifted all nuclear-related economic and financial sanctions on Iran. The US loosened restrictions to allow US imports of luxury goods from Iran such as carpets, but the ban on general trade, including oil, remained in place. Most significantly, the JCPOA waivers allowed foreign subsidiaries of US firms to engage in non-military trade with Iran, and the US Treasury Department suspended its earlier efforts to convince foreign banks to refrain from financial transactions with Iranian banks. 

Iranian oil exports subsequently resumed nearly to 2011 levels, but international banks “were slow to reenter the Iran market” owing to uncertainty about restrictions under non-nuclear sanctions unaffected by the JCPOA suspensions. Those banks that did re-enter have largely scaled back their Iran transactions since the US withdrawal from the JCPOA.[8]

President Trump’s May 8, 2018 announcement of the US withdrawal from the JCPOA set in motion 90-day and 120-day “wind-down periods” for US sanctions that had been lifted.[9] On August 7, 2018, at the end of the 90-day “wind-down period,” the administration re-imposed sanctions on Iran’s automotive sector, trade in gold and precious metals, and US imports of Iranian luxury goods.[10]

On October 3, 2018, in a dispute concerning a 1955 treaty between Iran and the US on economic relations and consular rights, the International Court of Justice (ICJ), in response to an Iranian complaint, decided in an interim ruling that the United States should, as a provisional measure, “remove…any impediments arising from the measures announced on 8 May 2018” to exports to Iran of “medicines and medical devices, foodstuffs and agricultural commodities,” and spare parts and equipment necessary for the safety of civil aviation.[11] The ruling also determined that the United States should ensure that “payments and transfers of funds [for these goods and services] are not subject to any restriction.”[12]

The Court explained its ruling by saying “restrictions on the importation and purchase of goods required for humanitarian needs, such as foodstuffs and medicines, including life-saving medicines, treatment for chronic disease or preventive care, and medical equipment, may have a serious detrimental impact on the health and lives of individuals on the territory of Iran.”[13]

The US responded to the ICJ ruling the same day by pulling out of the treaty.[14]

Over the past year, the United States has imposed several other non-nuclear sanctions on Iran, designating a total of 1,000 persons and entities since the beginning of the Trump administration.[15] For example, on October 16, 2018, in a move ostensibly unrelated to the nuclear-related sanctions, the US Treasury Department designated the Basij Cooperative Foundation, a network of some 20 firms and financial institutions, as Specially Designated Global Terrorists (SDGTs) subject to sanctions for, “among other malign activities,” supporting a paramilitary force that recruits child soldiers.[16]

On November 5, 2018, at the end of the 120-day “wind-down period,” remaining US nuclear-related sanctions, including petroleum-related transactions as well as transactions by foreign financial institutions with the Central Bank of Iran or “re-listed” Iranian banks, went back into force. Media reports indicated that after November 2018, companies halted food, medical, or agricultural trade with Iran because banks would not facilitate even authorized transactions for Iranian clients.[17] The administration did issue six-month waivers allowing nine countries to continue purchasing Iranian oil – India, China, Turkey, Greece, Italy, Japan, South Korea, Taiwan and Iraq. With the exception of Iraq, those waivers were not renewed when they expired in May 2019.

On April 15, 2019 the US State Department designated the Islamic Revolutionary Guard Corps (IRGC), a formal part of Iran’s military force, as a Foreign Terrorist Organization (FTO).[18] As a consequence of this designation, “it is unlawful for a person in the United States or subject to the jurisdiction of the United States to knowingly provide material support or resources to a designated FTO.”[19] The administration provided no guidance on the scope of this broad designation, which potentially covers up to 11 million members of the IRGC and affiliate organizations.[20] Richard Nephew, who worked on implementing Iran sanctions under the Obama administration, told the BBC that while the sanctions do not apply to medicines, “they do become prohibited if they are found to be going to a designated actor or entity.”[21]

On May 8, 2019 the Trump administration announced sanctions against Iran’s industrial metals sector, representing an additional 10 percent of export revenues.[22] On May 23, India and Turkey announced separately that they had stopped purchasing Iranian oil as a result of the end of US waivers. Banks in both countries had played an important role in facilitating transactions for pharmaceuticals, experts told Human Rights Watch.[23]

Chinese officials have publicly opposed “unilateral” sanctions on Iran, and as of late July China was continuing to import Iranian crude oil and LPG.[24] On July 22 the United States imposed sanctions on a Chinese company and a top executive for transporting Iranian oil.[25]

After a Gibraltar court released a seized Iranian oil tanker in August 2019, Brian Hook, the US Secretary of State’s Special Representative for Iran, announced that “the US would offer rewards of up to $15 million for information that disrupts the financial operations of the IRGC and its foreign arm, the Quds Force, encouraging the maritime community to provide the US government with information on illicit Iranian oil transfers.”[26]

On September 20, 2019, in response to an attack on Saudi Arabian oil installations which the US government attributed to Iran, the US Treasury “under its counterterrorism authority” imposed further sanctions on the Central Bank of Iran (CBI).[27] “From here on out,” wrote former OFAC official Brian O’Toole, “any humanitarian trade with Iran cannot involve the CBI, which is a major impediment to such trade given the CBI’s role in the economy and in foreign exchange markets.”[28]

OFAC has not published the number of licenses issued for humanitarian trade with Iran after the re-imposition of sanctions in November 2018. Publicly available data shows that during the period between October 2014 and September 2016, out of 1,595 applications filed by US entities for a license for humanitarian trade with Iran, OFAC issued 556 specific licenses. Out of the 1,595 requests filed, 108 applications (28 granted) were for export of medicine and 1,246 (499 granted) were for medical equipment.[29] An October 2019 study conducted by the US Government Accountability Office (GAO) on the effectiveness of sanctions as a policy tool acknowledged that sanctions may also have unintended consequences for targeted countries, such as negative impacts on human rights or public health.[30]

II. Iran’s Medical Market and Responses to Facilitate Medical Imports

According to the head of Iran’s Drug and Food Organization (Sazman-e-Ghaza-va-Daroo), the country produces 97 percent of the medicines consumed in Iran.[31] However, this statistic obfuscates the serious risk external sanctions pose in restricting access essential medicine and medical treatment. A third of the medications produced in Iran are actually dependent on imported materials, and imported medicine, while only three percent of the total market, constituted roughly 30 percent of the value of Iran’s medical market in the period between March and November 2018.[32] Significantly, the majority of these imported medicines are those required for treating rare diseases, as well as multiple forms of cancer.

Several experts on Iran’s pharmaceutical market emphasized to Human Rights Watch the critical nature of ensuring Iran’s ability to acquire imported medicines, as Iranian patients suffering from complicated and rare diseases are dependent on them and have limited or no alternatives. Analyzing the list of imported medicines during the period between March and November 2018 published by Iran’s Food and Drug Administration, Human Rights Watch identified at least 240 imported drugs (of 433 total) on the World Health Organization’s (WHO) list of essential medicines.[33]

Iran’s market for medical equipment is even more dependent on imports. According to the head of the Medical Equipment office in the Ministry of Health, 70 percent of the country’s medical equipment is imported.[34] Imported equipment include electronic devices such Magnetic Resonance Imaging (MRI) and scanning devices as well as hospital beds.

After the Iranian rial began to depreciate significantly following President Trump’s initial statements that he intended to withdraw the US from the JCPOA, Iran’s Central Bank took several actions to facilitate domestic companies’ ability to purchase critical imported goods, including medications and medical equipment. In April 2018, the Central Bank designated a subsidized rate of 42,000 Iranian rials per US dollar available from the country’s foreign currency reserves for Iranian companies importing designated “essential goods.”[35]

On June 20, President Hassan Rouhani’s cabinet, in consultation with the Central Bank, published a three-tier list of priorities that are eligible to receive subsidized rates. According to government officials, medicine and medical equipment are on the list with the highest priority to receive a subsidized currency.[36] On August 6, 2018, a day before publishing the list of essential goods eligible for the 42,000 rial rate, Hassan Ghazizadeh Hashemi, the minister of health at the time, told media that the list included more than 5,000 items of medicine and 22,000 items of medical equipment.[37] On August 7, 2018, Iran’s cabinet released a list of 25 categories, mostly relating to agricultural products and medicines, eligible for the government-subsidized rate.[38] In September 2018, the Ministry of Industry announced an expanded list of 75 items, including vitamins, rennet and lactose enzymes, packaging material and equipment, and agricultural machinery.[39]

Other government officials’ statements implied, however, that some imported medical equipment might not be eligible for purchase using a subsidized currency. On August 12, the head of the Medical Equipment Office at Ministry of Health said only essential medical equipment would receive the subsidized rate.[40] On August 27, the vice chair of Iran’s parliamentary health commission said that out of the 2,000 imported dental products and dental equipment used in Iran, only 392 items would receive the government subsidized rate of 42,000 rials.[41] A doctor who owns a private specialized hospital in Tehran said that one of the biggest problems in importing medical equipment is increasing prices. “Much of our [imported medical] equipment is not eligible for the government subsidized currency [of 42,000 rials], and it is simply out of our price range to import new models of equipment to Iran.”[42]

For importers whom the government does not designate as beneficiaries of the subsidized 42,000 rial exchange rate (including some importers of health products), the Central Bank established an “integrated currency trading system (NIMA).” This network of registered money brokers is able to obtain a rate between the government subsidized rate (42,000 rials) and the market rate of around 116,000 rials.[43] To further mitigate the impact of sanctions, Iran has also used foreign currencies other than US dollars and has switched its official reporting currency from US dollars to euros.[44]

Iran’s policies to mitigate the effects of sanctions on its citizens have been accompanied by allegations of government corruption.[45] Iranian media outlets have reported alleged misallocation and misuse of government-subsidized dollars by Iranian corporate elites.[46] Thirteen petrochemical industry executives are currently on trial for allegedly embezzling revenues from shell companies they had set up to circumvent pre-JCPOA sanctions.[47]

 

III. US Sanctions Restricting Financing of Iranian Humanitarian Imports

Iranian trade analysts and pharmaceutical industry professionals interviewed for this report told Human Rights Watch that the main obstacle to Iran’s importing humanitarian materials officially exempted from US sanctions is that US sanctions themselves are restricting the means to finance these purchases.[48] Banks and financial institutions in other countries appear to be concerned about the risk of authorizing any business with Iran for fear of themselves incurring US sanctions, despite exemptions for humanitarian trade, a problem of excessive caution or “overcompliance” similar to the earlier period of US sanctions prior to the JCPOA.[49]

During that earlier period when the US and other states imposed extensive sanctions on Iran, researchers noted widespread disruption in distribution and lack of access to vital medicine for Iranian patients with different types of cancers and blood disorders, including hemophilia.[50]

Overcompliance is not limited to US banks and financial institutions. European banks have also refused to authorize transactions with Iranian companies since the Trump administration’s re-imposition of sanctions, several experts told Human Rights Watch.[51] “In the UK, for any transaction with Iranian companies, even the humanitarian ones that are exempted from sanction, I have to get involved in litigation on behalf of my clients who want to do business with Iran,” a sanctions lawyer who has represented European companies trading with Iran explained. “Often when we threaten the bank with a lawsuit, the transaction moves forward, but sometimes we have to start the pre-litigation process. This process is time consuming and sometimes leads to [foreign] companies deciding to not trade with Iran.”[52]

According to media reports, in the period between the US withdrawal from the JCPOA in May 2018 and the total re-imposition of sanctions in November 2018, at least two German, two Japanese, one Taiwanese, and one Austrian bank announced that they were ceasing their transactions with Iran.[53]

Foreign Minister Mohammad Javad Zarif in November 2018 published screenshots of four emails sent by pharmaceutical companies announcing their preemptive termination of their contracts with Iran because of the sanctions.[54] On May 18, 2018, Roquette, a French producer of starch for medical uses, informed its Iranian counterparts in a letter that it had decided to cease to all trade and sales with Iran, noting that “this decision is as a result of the recent announcement by the United States of America, which if ignored by us, is expected to adversely affect our US operations.” The German branch of JRS Pharma, in a June 27, 2018 message, stated that “due to political circumstances out of our control, our banks can no longer accept any payments linked to Iran business[es].” Gentige, a Swedish manufacturer of hospital equipment, wrote on August 28, 2018 that “due to extended sanctions against the Republic of Iran we have been informed by our compliance dep. that we are not allowed to engage in any kind of business with Iranian based customers.” The Italian pharmaceutical company Recordati wrote on June 11, 2018: “We are very sorry to inform you that as a result of recent and severe restrictions on the operations with your country we will be unable to continue the business of our products from 01.08.2018.”[55]

On August 5, 2019, Norwegian Refugee Council (NRC), a humanitarian NGO that carries out projects in Iran, including providing education and shelter to thousands of Afghan migrants and refugees in Iran, said the banks’ refusal to transfer money to aid agencies due to fear of sanctions has put their operation at risk.[56] “Humanitarian organizations are left hamstrung by politically motivated sanctions that now punish the poorest,” said NRC Secretary-General Jan Egeland, in a statement. Because no Norwegian banks have a direct relationship with banks in Iran, not only do they need to agree to authorize the transfer but they also need to find intermediary banks that are able and willing to transfer the funds to an Iranian bank. “We have now, for a full year, tried to find banks that are able and willing to transfer money from donors to support our work for Afghan refugees and disaster victims in Iran, but we are hitting brick walls on every side,” Egeland said.[57]

On September 19, 2019, Egeland told a group of humanitarian experts in a conference in Washington DC that, “We [NRC] have spent hundreds of thousands of Euros extra on legal studies and advice to make it clear to banks that is perfectly alright to transfer money [to Iran] and still no banks risk transferring because they are so afraid of US sanctions.”[58]

Human Rights Watch identified two main routes that Iranian companies have been using to import medical and other humanitarian goods. As the US expands sanctions, companies are finding it increasingly difficult to utilize either of these avenues to finance the import of critical medicines and medical equipment. 

One route involves the limited number of banks based in or with branches in the countries that, until May 2019, had received waivers to continue purchasing Iran’s oil, particularly in South Korea, China, India, and Turkey. These banks held Iran’s oil revenues in escrow accounts to authorize financing imports of goods the Iranian government deemed essential. People who work in the pharmaceutical industry in Iran expressed fear that even these accounts will soon cease to operate. Even prior to the US decision in May 2019 to end most waivers, Human Rights Watch documented two instances where banks in these countries refused to authorize transactions for raw materials imports for pharmaceutical use.[59]

In another case, an employee at a leading international distributor of specialty chemicals told Human Rights Watch that in July 2018, a European company cancelled a contract for selling medical lactose to Iran because of “pressure” from European banks refusing to process the transactions.[60] “After we were not able to supply the Iranian companies with medical lactose, they had to purchase it from other countries at a lower quality,” this person added. Similarly, in March 2019, a bank located in one of the countries that have received exemptions to buy Iranian oil told clients in an email that “raw materials which are used for production of medicine, are not a medicine,” citing US OFAC guidance. “Therefore, we can consider mediating such goods only if they are of [our country’s] origin,” the email added.[61] This is contrary to OFAC guidance, which allows for the transfer of raw materials for humanitarian purposes regardless of country of origin.

On October 14, Amirhossein Moeeni Zand, the deputy head of Iran’s Drug Importer Association, told Shargh Daily  newspaper that “a few days after the most recent sanctions on the Central Bank, South Korean banks have stopped their relations with Iranians, and South Korean companies are one by one letting their Iranian counterparts know that because banks do not allow them to conduct financial transactions with Iran, they cannot sell their medicine to Iran.”[62] “Companies want to continue their collaboration, but financial restrictions in their country is preventing them,” Moeeni Zand added. On October 15, Gholamhossein Mehralian, the head of the drug and substance office at Iran’s Food and Drug Administration, told Fars News Agency that they can confirm that South Korea has stopped sales of drug and raw material to Iran.[63]

Iranian pharmaceutical industry workers told Human Rights Watch that the other route to finance the purchase of medical imports is the informal system of money brokers known as hawala, but this option adds transaction costs and involves significant delays that many businesses cannot afford.[64] Also, due to the Iranian government’s quality control and monetary policies, this route is not easily available for importing medicine.[65]

When transactions include a US entity with an OFAC license, use of the hawala system seems almost unavoidable because most US banks will not authorize any transactions with Iran, even humanitarian ones.[66] One person who worked for a US-based relief organization with an OFAC license explained that money raised for disaster relief after devastating floods in Iran in March 2019 had to be transferred through the hawala system via Canada.[67]

Iranian pharmaceutical and other health sector companies have the option of establishing an office outside Iran to access letters of credit from a limited number of banks outside Iran, but this adds costs that increase the price of medications.[68] Two people who worked on importing medicine to Iran said that the additional costs make this route is prohibitive for them.[69]

IV. Current Access to Medicines in Iran

Overview  

The Iranian Central Bank’s list of entities that receive a subsidized currency exchange rate shows that during the period between April 2018, when the government announced its new exchange rate policy, and April 2019, the government allocated over US$3 billion in foreign currencies to pharmaceutical and medical entities.[70] Most of this amount (US$1.7 billion) has been distributed in euros, while the other currencies that constitute a notable portion of the funds are Chinese yuan (US$560 million), Indian rupee (US$530 million) and Turkish lira (US$243 million).
 

currency

num_of_transactions

total_amount_per_currency

Amount in USD

Iraqi dinar

2

2122552053

1780014.60

Russian ruble

24

554982317.10

8291435.82

Indian rupee

205

36904627593

515834432.20

Omani rial

1

3444901.43

8947793.86

Swiss franc

3

9965406.83

10163180.29

Danish krone

1

835358.36

124293.39

Turkish lira

182

1403108246

247318875

South Korean won

101

81641374456

67416997.78

Japanese yen

26

719168349

6753709.97

Chinese yuan

523

3856109121

547517211.50

euro

747

1611764667

1788647780

Total

   

3202795725

One Iranian importer of medicine and a former employee of one of the biggest pharmaceutical importers in Iran told Human Rights Watch that while Iranian pharmaceutical companies used to purchase a majority of medicine for rare diseases from European companies and still try to do so, the increased caution of those European banks due to new sanctions, together with price increases, have pushed the Iranian companies to seek alternatives sourcing for raw material from Chinese and Indian companies, where material is cheaper and financing might be easier. Pharmaceutical experts who spoke to Human Rights Watch expressed concerns that this change in sourcing of raw material could affect the quality of medicine available in Iran for rare diseases.

According to Eurostat, the entity that publishes EU official economic and trade statistics, in 2018 EU countries exported to Iran about US$807 million worth of medicine and US$150 million worth of medical supplies.[71] This represents a decrease of US$40 million each for medicine and medical equipment in 2018, compared to 2016 and 2017, when JCPOA sanctions suspension was fully in force.

However, it is difficult to delineate a clear linkage between the time Iran distributes the currency and the time the trade is registered in the system. According to one expert, after receiving the currency, pharmaceutical companies have a period of six to nine months to import the medication.[72] Statistical analysis conducted by Esfandyar Batmanghelidj, founder of Bourse and Bazaar, a media company that supports business diplomacy between Iran and the EU, suggests that the cost of European medical exports to Iran is significantly higher than the cost of European exports to peer countries such as Pakistan, which is comparable in economic size but is not under unilateral sanctions.[73]

Impact on patients

Interviews with pharmaceutical experts and doctors in Iran indicate that while there is at present no acute nationwide lack of medications, patients with rare diseases that require imported medications for their treatment are facing increasing difficulty in accessing or completing their treatment.[74] A doctor and a researcher separately reported increasing difficulties in finding imported brands of eyedrops in the Iranian market, causing suffering for the large number of patients affected by chemical weapons during the Iran-Iraq war.[75] “Before the sanctions were imposed, companies were able to build up inventories, but the situation cannot continue for much longer,” said one pharmaceutical importer.[76] “If nothing changes in a year, Iranian patients will have significant challenges in accessing their most-needed treatments,” a doctor added.[77]

Quite apart from the limited ability to import medicines, there is the issue of affordability. The International Monetary Fund estimated that the inflation rate in Iran was 31 percent in 2018 and predicted that it could reach 37 percent in 2019 if oil revenues continue to plummet.[78] The plunging value of the rial has affected the affordability of locally-produced as well as imported goods. According to the Statistical Center of Iran, the cost of health care for families rose by 18.8 percent over the past 12 months across the country.[79] 

A Tehran-based doctor told Human Rights Watch that “basic medication is still available in the market, but foreign-produced vitamins and supplements have been omitted from the list of [government] insurance-subsidized medications. This can particularly affect patients with special diseases such as multiple sclerosis and cancer, who need medical supplements in their treatment plans.”[80]

A nurse who works at a government hospital in Tehran told Human Rights Watch that there are shortages, but so far, they have been temporary. “Recently we couldn’t find potassium, then medicine for nuclear scanning, and after that injections for Magnetic Resonance Imaging (MRI) scans,” she said, noting that “the latter two are imported.”[81]

Some patients have reported that the lower quality of imported raw materials or domestic alternatives may be causing serious side effects. In May 2018, Ehsan Bodaghi, a journalist with Iran Newspaper, the government’s official news outlet, tweeted that his wife had experienced severe complications after a Caesarean section and was told by a family member who is a doctor that “the complications were likely caused by non-standard anesthesia being used because of sanctions and a lack of adequate medication.”[82] Human Rights Watch has no way of determining how widespread such cases are.
 

Patients with Epidermolysis Bullosa (EB)  

Human Rights Watch documented a case in which a European company refused to sell Iran medication required for patients who suffer from epidermolysis bullosa (EB), a rare genetic condition that results in blistering of the skin and mucous membranes, and which afflicts more than 800 persons in Iran. Through an NGO called EB Home, the Iranian government provided these patients with dressings for blisters free of charge. After the re-imposition of sanctions, the company stopped selling to Iran a special kind of foam dressing that reduces and protects the blisters. In March 2019, the company wrote to the director of EB home that due to the US economic sanctions, it had “decided not to conduct any business with relation to Iran for the time being. This also applies to business conducted under any form of exemptions to the US economic sanctions.”[83] A lawyer who represents EB Home told Human Rights Watch that domestic alternatives for the dressing “often gets attached to the blisters, causing additional excruciating pain for the patients.”[84]
 

Cancer Patients

In November 2018, researchers affiliated with MAHAK Pediatric Cancer Treatment & Research Center, an NGO that treats children with cancer, published a list of drugs needed to treat leukemia.[85] Documents reviewed by Human Rights Watch showed that in May 2019, the NGO lacked pegaspargase, mercaptopurine, and vinblastine, three chemotherapy medications, all of which are on the WHO list of essential medicines.[86]

On July 30, Arasb Ahamdian, the head of MAHAK’s hospital told Euro News Persian service: “When it comes to cancer, the significant portion of medicine that children under our care use  fall under the 5 percent imported category that are very expensive and difficult to find.”[87] Several foreign media outlets have reported about patients, particularly children with cancer, suffering from lack of access to vital medications.[88]

“The ones who impose sanctions say that sanctions haven’t targeted medical and humanitarian issues in Iran,” Ahamdian said. “Its impact is visible in the lives of children with cancer.”

Epileptic Patients

On January 5, 2019, the official Islamic Republic of Iran News Network quoted Nesbi Tehrani, executive director of Iran’s Epilepsy Society, as saying that epilepsy patients face a shortage of medication as a result of sanctions.[89] “Some epilepsy patients are resistant to treatment and have to consume new foreign-made medicine that does not have a domestic alternative, but sanctions have caused a shortage in their medication,” he said. According to a study conducted by Iranian researchers on 242 epilepsy patients in Iran, 72 percent of patients who used imported anti-epilepsy drugs reported significant difficulty in accessing their medication during the period between August 2018 and February 2019. In comparison, 30 percent of patients who used domestically produced medicine reported significant difficulty in accessing their essential medication during the same period.[90]
 

Universal Health Coverage

As of 2015, around 90 percent of Iranian citizens were covered by some form of basic health insurance. Iran’s health insurance system offers subsidized medications for most diseases while covering most costs of treatment for patients with rare diseases.[91] In 2014, the Rouhani administration started implementing the Health Transformation Plan (HTP), aiming to achieve universal health coverage and reduce out of pocket expenditure.[92] Several Iranian experts and government officials have warned about the increased financial burden on Iran’s medical sector and dissatisfaction among the medical community as a result. Among doctors who spoke to Human Rights Watch, fears are growing that the decrease in government revenues as a result of sanctions will erode coverage. “One of the public hospitals located in the north of Tehran is already making patients buy necessary materials such as bandages and masks themselves from pharmacies outside the hospital,” a doctor told Human Rights Watch. “According to the hospitals’ regulations, the hospital should provide all the materials for the treatment.”[93]

Three people who work in the Iranian pharmaceutical industry, as well as a doctor who heads a private hospital in Tehran, told Human Rights Watch that since the re-imposition of sanctions, the list of medications that are covered by insurance has shrunk. In June, the Young Journalist Club news agency published a list of 79 medications that the Iran Food and Drug Administration recently labeled as “over the counter” and therefore no longer covered by insurance.[94]

Iran’s draft budget for the current Persian calendar year (March 2019 to March 2020) proposes a 12.6 percent increase in government’s expenditures over the previous year, with an 11 percent increase for health insurance and a 13 percent increase for public hospitals’ medical and research costs, all significantly lower than the projected inflation rate of 37 percent. Under the proposed draft, the health budget constitutes 19.6 percent of projected expenditures, compared with 23.6 percent in the previous year’s budget.[95]

Iranians’ access to medical equipment appears to be more restricted as a result of this severe currency depreciation and the government’s refusal to allow the use of the subsidized dollar rate for some of these purchases, a doctor who owns a private hospital told Human Rights Watch. These two factors have made it nearly impossible for health facilities to import up-to-date medical equipment. A hospital patient’s family member described to Human Rights Watch how the lack of a well-equipped intensive care unit in a hospital in western Iran in February 2019 had resulted in significant delays in admitting the patient to the medical care unit and contributed to the death of their relative.[96] A nurse who used to work a different hospital in western Iran told Human Rights Watch that after the re-imposition of sanctions, hospitals in her hometown were extending the expiration dates for serum kits, inhalator filters, and other medical equipment beyond what was allowed previously.[97] Another nurse who works at a hospital in Tehran said, “The situation for medical equipment is worse than medicine. My own colleague was not able to find a connecter he needed for a heart surgery.”

V. International Legal Obligations

Economic Sanctions and the Right to Health

The International Covenant on Economic, Social and Cultural Rights (ICESCR) – ratified by Iran and signed by the United States – obliges states to respect, protect, and fulfill the right to “the enjoyment of the highest attainable standard of physical and mental health,” as well as the right to an adequate “standard of living” that includes “adequate food.”[98] Parties to the convention are obliged to work toward the progressive realization of these rights over time “by all appropriate means” and “to the maximum of its available resources.”[99]

In 2013, the UN Special Rapporteur on the highest attainable standard of physical and mental health noted that, “[w]hile several aspects of the right to health are understood to be progressively realizable, certain core obligations cast immediate obligations on States, including the provision of essential medicines to all persons in a non-discriminatory manner.”[100] These essential medicines, defined by the World Health Organization, include painkillers, anti-infectives, anti-bacterials, anti-tuberculars, anti-retrovirals, blood products, cardiovascular medicines, vaccines, and vitamins.[101]

A country or coalition imposing economic sanctions needs to take into account the impact on the human rights of the affected population, including the right to health. Commenting on economic sanctions, the UN Committee on Economic, Social and Cultural Rights (CESCR), the authoritative body of independent experts that interprets the obligations of states parties to the convention, stated that “these rights must be taken fully into account when designing sanctions,” and that “the inhabitants of a given country do not forfeit their basic economic, social, and cultural rights by virtue of any determination that their leaders have violated norms relating to international peace and security.”[102]

In General Comment Number 14 about the right to health, the CESCR observed that “States parties should refrain at all times from imposing embargoes or similar measures restricting the supply of another state with adequate medicines and medical equipment,” adding that “[r]estrictions on such goods should never be used as an instrument of political and economic pressure.”[103] Countries therefore have an obligation to ensure that any sanctions they impose do not violate Iranians’ right to health, including access to essential medication.

“When an external party takes upon itself even partial responsibility for the situation within a country,” the CESCR stated in its comment on economic sanctions, “it also unavoidably assumes a responsibility to do all within its powers to protect the economic, social and cultural rights of the affected population.”[104] The CESCR further stated that “the provisions of the Covenant… cannot be considered to be inoperative, or in any way inapplicable, solely because a decision has been taken that considerations of international peace and security warrant the imposition of sanctions.”[105]

In Comment Number 8, the CESCR noted the need for effective monitoring throughout the period that sanctions are in force. The imposing state or states have an obligation "to take steps, individually and through international assistance and cooperation, especially economic and technical" to respond to any “disproportionate suffering experienced by vulnerable groups within the targeted country.”[106]

Under the Maastricht Principles on Extraterritorial Obligations of States in the Area of Economic, Social and Cultural Rights, which constitute international expert opinion on this matter, “States must refrain from adopting measures, such as embargoes or other economic sanctions, which would result in nullifying or impairing the enjoyment of economic, social and cultural rights.”[107] Even “where sanctions are undertaken to fulfill other international legal obligations, States must ensure that human rights obligations are fully respected in the design, implementation and termination of any sanctions regime.”

The state that is the target of economic sanctions, in this case Iran, also has obligations as a party to the ICESCR, obligations that “assume greater practical importance in times of particular hardship.” Specifically, Iran remains obligated to take steps “to the maximum of its available resources” to “provide the greatest possible protection” of the right to health of individuals within its jurisdiction. “While sanctions will inevitably diminish the capacity of the affected State to fund or support some of the necessary measures, the State remains under an obligation to ensure the absence of discrimination in relation to the enjoyment of these rights ….”[108]

Acknowledgments

This report was researched and written by Tara Sepehri Far, Iran researcher at Human Rights Watch. Joe Stork and Michael Page, deputy directors in the Middle East and North Africa Division, Arvind Ganesan, director of the Business and Human Rights Division, Andrea Prasow, acting Washington director, Louis Charbonneau, United Nations Director, and Claudio Francavilla, European Union Officer, reviewed the report. Clive Baldwin, senior legal advisor, provided legal review. Tom Porteous, deputy Program director, provided program review. An associate in the Middle East and North Africa Division provided editorial and production assistance. The report was prepared for publication by Fitzroy Hopkins, production manager.

Professor Joe Amon, clinical professor at Drexel University Dornsife School of Public Health, also reviewed the report and provided expert opinion on potential health impacts. Beau Barnes of the law firm Kobre & Kim LLP reviewed the report's discussion of U.S. sanctions law and provided legal and practical suggestions.

We would like to thank all of the individuals and organizations that supported research and analysis for the report. We also wish to express our gratitude to all of those who spoke with us during this research.

 

 

[1] Unless otherwise noted, for details in this and following paragraphs see Congressional Research Service, “Iran Sanctions” [updated April 22, 2019] https://fas.org/sgp/crs/mideast/RS20871.pdf (accessed July 3, 2019). Another useful resource is International Crisis Group, “Spider Web: The Making and Unmaking of Iran Sanctions,” February 25, 2013, https://www.crisisgroup.org/middle-east-north-africa/gulf-and-arabian-pe... (accessed July 2, 2019).

[2] It became the Iran Sanctions Act after Libya was dropped in 2006.

[3] In November 2008, “the Department of the Treasury broadened restrictions on Iran’s access to the US financial system by barring US banks from handling any transactions with foreign banks” that are “on behalf of an Iranian bank.” (CRS p. 30)

[4] CRS p. 47.

[5] See Specific Guidance on the Iran Sanctions, US Department of Treasury Resource Center, https://www.treasury.gov/resource-center/sanctions/programs/pages/iran.aspx.

[6] Guidance on the Sale of Food, Agricultural Commodities, Medicine, and Medical Devices by Non-U.S. Persons to Iran, Department of Treasury, July 25, 2015, https://www.treasury.gov/resource-center/sanctions/Programs/Documents/ir....

[7] UNSC Resolution 2231 (2015), https://undocs.org/S/RES/2231(2015).

[8] CRS p. 64.

[9] President Donald J. Trump is Ending United States Participation in an Unacceptable Iran Deal, White House, May 8, 2019, https://www.whitehouse.gov/briefings-statements/president-donald-j-trump... (accessed August 11, 2019).

[10] Executive Order 13846 of August 6, 2018 Reimposing Certain Sanctions with Respect to Iran, Federal Register Vol. 83, No. 152, August 7, 2018, https://www.treasury.gov/resource-center/sanctions/Programs/Documents/08...

[11] Alleged Violations of 1955 Treaty of Amenity, Economic Relations, and Consular Rights (Islamic Republic of Iran V. United States), Press Release, International Court of Justice, October 3, 2018, https://www.icj-cij.org/files/case-related/175/175-20181003-PRE-01-00-EN...

[12] Alleged Violations of 1955 Treaty of Amenity, Economic Relations, and Consular Rights (Islamic Republic of Iran V. United States), Order, October 3,2018, Conclusions and Measures to be Adopted, pp. 26-28. https://www.icj-cij.org/files/case-related/175/175-20181003-ORD-01-00-EN...

[13] Ibid.

[14] US Withdraws from 1955 Treaty Normalizing Relations with Iran, The New York Times, October 3, 2018, https://www.nytimes.com/2018/10/03/world/middleeast/us-withdraws-treaty-....

[15] Press Briefing with Brian Hook, U.S. Special Representative for Iran, and Victoria Coates, Senior Director for Middle Eastern Affairs, NSC, May 8, 2019. https://www.state.gov/press-briefing-with-brian-hook-u-s-special-represe....

[16] Treasury Sanctions Vast Financial Network Supporting Iranian Paramilitary Force That Recruits and Trains Child Soldiers, Press Release, US Department of Treasury, October 16, 2018, https://home.treasury.gov/news/press-releases/sm524. Specially Designated Global Terrorists (SDGTs) are entities designated under Executive Order 13224 (signed by President George W. Bush on 9/23/2001) and are a subset of SDNs (Specially Designated Nationals). OFAC takes the position that even humanitarian transactions are sanctionable if they “involve persons on the SDN List that have been designated in connection with Iran’s support for international terrorism or proliferation of weapons of mass destruction,”  see FAQ #637, persons designated as SDNs under EO 13224, Treasury Resource Center. https://www.treasury.gov/resource-center/faqs/Sanctions/Pages/faq_iran.a....

[17] Jonathan Saul, Parisa Hafezi, Exclusive: Global traders halt new Iran food deals as U.S. sanctions bite, Reuters, December 21, 2018, https://www.reuters.com/article/us-iran-nuclear-food-exclusive/exclusive....

[18] Statement from the President on the Designation of the Islamic Revolutionary Guard Corps as a Foreign Terrorist Organization, Press Release, April 8, 2019, https://www.whitehouse.gov/briefings-statements/statement-president-desi..., Designation of the Islamic Revolutionary Guard Corps, Office of the Spokesperson, Department of State, https://www.state.gov/designation-of-the-islamic-revolutionary-guard-corps/, April 8, 2019, https://www.state.gov/designation-of-the-islamic-revolutionary-guard-corps/.

[19] Foreign Terrorist Organization (FTO), Congressional Research Service, January 15, 2019. https://fas.org/sgp/crs/terror/IF10613.pdf.

[20] Edward Wong and Eric Schmitt, Trump Designates Iran’s Revolutionary Guards a Foreign Terrorist Group, The New York Times, April 8, 2019, https://www.nytimes.com/2019/04/08/world/middleeast/trump-iran-revolutio....

[21] Anahita Shams & Reality Check team, “Iran sanctions: What impact are they having on medicines?” BBC News, August 8, 2019, https://www.bbc.com/news/world-middle-east-49051782 (accessed September 27, 2019).

[22] Humeyra Pamuk, Jonathan Landay, Trump slaps new U.S. sanctions on Iran's metals industry, Reuters, https://www.reuters.com/article/us-usa-iran-sanctions/trump-slaps-new-us..., May 8, 2019.

[23] Human Rights Watch Interviews with 2 importers of medicine and a doctor who is the head of a medical hospital in Tehran May 2019.

[24] China continued Iran oil imports in July in teeth of U.S. sanctions, Reuters, August 9, 2019, https://www.reuters.com/article/us-china-iran-oil/china-continued-iran-o... (accessed August 11, 2019).

[25] U.S. Punishes Chinese Company Over Iranian Oil, New York Times, July 22, 2019, https://www.nytimes.com/2019/07/22/world/asia/sanctions-china-iran-oil.html (accessed August 11,2019).

[26] Special Briefing with Special Representative for Iran and Senior Advisor to the Secretary Brian Hook, September 4, 2019, https://www.state.gov/special-representative-for-iran-and-senior-advisor....

[27] “Treasury Sanctions Iran’s Central Bank and National Development Fund,” US Treasury press release, September 20, 2019, https://home.treasury.gov/news/press-releases/sm780, (accessed September 25, 2019).

[28] Brian O’Toole, “Iran central bank designation – what does it mean?” Atlantic Council, September 20, 2019 https://atlanticcouncil.org/blogs/new-atlanticist/iranian-central-bank-d..., (accessed September 25, 2019).

[29] Office of Foreign Assets Control Biennial Report of   Licensing Activities Pursuant to the Trade Sanction Reform and Export Enhancement Act of 2000, Department of Treasury, August 19, 2019, https://www.treasury.gov/resource-center/sanctions/Programs/Documents/8b... (accessed October 7, 2019).

[30] Agencies Assess Impacts on Targets, and Studies Suggest Several Factors Contribute to Sanctions’ Effectiveness, Report to Congressional Requesters, United States Government Accountability Office, October 2, 2019, https://www.gao.gov/assets/710/701891.pdf, (accessed October 10, 2019).

[31] “97% of Medicine Needed in the Country is Produced Domestically/ We Don’t Have Import of Radioactive Medicine,” Young Journalists Club, November 20, 2018 https://www.yjc.ir/00SGFz (accessed August 9, 2019).

[32] Import of Raw Material for Medicine Reduced to 33 Percent, Iranian Student News Agency (ISNA), November 7, 2018, https://www.isna.ir/news/97081607749/ (accessed August 9, 2019).

[33] For the WHO Model List of Essential Medicines see: World Health Organization, Model List of Essential Medicine, 21st list, 2019, https://apps.who.int/iris/bitstream/handle/10665/325771/WHO-MVP-EMP-IAU-... (accessed August, 9,2019).

[34] “ We Have about 1000 Producers of Medical Equipment in the Country,” National Medical Device Directorate, June 23, 2o19, http://www.imed.ir/Default.aspx?PageName=News&ID=2961&Language=1&title=%..., (accessed August 11, 2019).

[35] “The Rate of Dollar is set at 42,00 rial,” Islamic Republic News Agency, April 9,2018, https://www.irinn.ir/fa/news/581610/ (accessed August 15, 2019). The non-subsidized rate was 116,000 rialsto the dollar.

[36] The List of Goods Subjected to Subsidized Currency, Fars News Agency, June 20, 201548, https://www.farsnews.com/news/13970330001041/.

[37] “Announcing the Final List of Protected Goods in the Health Category,” Iranian Students News Agency (ISNA), August 6, 2018, https://www.isna.ir/news/97051508083/اعلام-لیست-نهایی-کالاهای-گروه-اول-سلامت-به-وزارت-صنعت-فردا (accessed October 18, 2019).

[38] “The List of Goods that Received 42000 rial Currency,” Eghtesad Online, August 7, 2018, https://www.eghtesadonline.com/بخش-بازرگانی-6/291193-فهرست-کالاهای-مشمول-ارز-تومانی-منتشر-شد-کالا-ارز-دولتی-می-گیرند  (accessed October 18, 2019).

[39] Table of goods that received the subsidized currency, Tasnim News, https://newsmedia.tasnimnews.com/Tasnim/Uploaded/Document/1397/06/12/139... (accessed October 18, 2019).

[40] “Only the Necessary Medical Equipment Will Receive the Subsidized Rate,” Eghtesad Online, August 12, 2019, https://www.eghtesadonline.com/بخش-طلا-ارز-7/292178-فقط-تجهیزات-پزشکی-ضروری-ارز-تومانی-می-گیرند (accessed October 18, 2019).

[41] “Why Dental Equipment Didn’t Receive Subsidized Currency?, “Islamic Consultative Assembly News Agency, August 27, 2018,https://www.icana.ir/Fa/News/400475/چرا-برای-واردات-تجهیزات-دندانپزشکی-ارز-دولتی-تعلق-نگرفت؟-شاید-این-تجهیزات-هم-در-آینده-ارز-دولتی-بگیرند (accessed October 18, 2019).

[42] Human Rights Watch phone interview with a doctor who is head of a private hospital, May 2019.

[43] As of August 13, 2019, the US Dollar was traded for 116,000 rials in the free market. The rate had increased to 180,000 in the early months of 2019.

[44] Iran switches from dollar to euro for official reporting currency, Reuters, April 18, 2018, https://www.reuters.com/article/us-iran-currency-euro/iran-switches-from... (accessed October 18, 2019).

[45] Lawmaker Says Sanction-Busting Corruption Is Part of Iran's Economic Structure, Radio Farda, May 11, 2019, https://en.radiofarda.com/a/lawmaker-says-sanction-busting-corruption-is... (accessed August 11,2019).

[46] Mohammad Mosaed, 3 Billion Euros for Two Famous Families, Shargh Daily Paper, May 7, 2019, http://www.sharghdaily.ir/fa/Main/Detail/220301 (accessed August 11, 2019).

[47] Golnar Motevalli, Iran Court Tries 13 in $7 Billion Petrochemical Fraud Case: Mehr, Bloomberg News, March 5,2019, https://www.bloomberg.com/news/articles/2019-03-09/iran-court-tries-13-i... (accessed August 13, 2019).

[48] For a good overview of humanitarian financing issues under sanctions, see Tayler Cullis and Amir Handjani, “The Anatomy of Humanitarian Trade with Iran,” Lawfare Blog, https://www.lawfareblog.com/anatomy-humanitarian-trade-iran (accessed July 25, 2019).

[49] Siamak Namazi, Sanctions and Medical Shortage in Iran, Woodrow Wilson Center, February 2013, https://www.wilsoncenter.org/sites/default/files/sanctions_medical_suppl...

[50] For a more comprehensive overview of the impact sanctions on health during prior to the 2015 nuclear agreement  see Setayesh and Mackey, “Addressing the Impact of Economic Sanctions on Iranian Drug Shortages in the Joint Comprehensive Plan of Action: Promoting Access to Medicines and Health Diplomacy.”, Globalization and Health (volume 12), Article number: 31 (2016), https://globalizationandhealth.biomedcentral.com/articles/10.1186/s12992..., (accessed August 22, 2019). Shahabi, et al. The impact of international economic sanctions on Iranian cancer healthcare, Health Policy, Volume 119, Issue 10, October 2015, Pages 1309-1318, https://doi.org/10.1016/j.healthpol.2015.08.012 (accessed August 22, 2019).

[51]A UK-based business analyst November 2018, Nina (pseudonym), a UK-based sanctions lawyer, June 2019, Sayeh (pseudonym), employee of a Lebanese food and medical raw material company in Tehran May 2019.

[52] Human Rights Watch phone interview with Nina (pseudonym), a UK-based sanction lawyer, June 2019.

[54] Javad Zarif, November 12, 2018, https://twitter.com/JZarif/status/1062066259154685952 (accessed October 18, 2019).

[56] Future of aid work at risk in Iran due to U.S. sanctions, NRC, August 5, 2019, https://www.nrc.no/news/2019/august2/aid-work-in-iran-at-risk-due-to-u.s.... There are an estimated 3 million Afghan refugees in Iran.

[57] Ibid.

[58] Jan Egeland, Secretary General, Norwegian Refugee Council, Future of Humanitarian Aid, Center for Strategic and International Studies, September 19, 2019. https://youtu.be/Mf5O8XTP7Nw.

[59] An Iranian employee of a foreign company subsidiary said that her company could not find a European bank to authorize the import of medical grade lactose used in making tablets. Human Rights Watch also reviewed an email from a foreign bank refusing to authorize transactions for raw material for pharmaceutical products from another country.

[60] Human Rights Watch interview with an employee of a French subsidiary based in Tehran, May 2019.

[61] Copy of email sent on May 1, 2019 available on file.

[62] “And Now Medical Sanctions by Koreans,” Shargh Daily, October 14, 2019, http://www.sharghdaily.ir/fa/Main/Detail/240970/%D9%88-%D8%AD%D8%A7%D9%8....

[63] South Korea Stopped Selling Drugs and Raw Material to Iran, Fars News Agency, October 15, 2019, https://www.farsnews.com/news/13980723000414/.

[64] Human Rights Watch interviews with an Iranian importer, April 2019, an employee of a Lebanese company specialized in distributing specialty chemicals April 2019, and an employee of the biggest pharmaceutical company in Iran that represents a US pharmaceutical company, May 2019.

[65] Importers are required to receive proper licensing from Iran’s Food and Drug Administration before importing medicine and have to use that permission to receive subsidized currency from domestic banks.

[66] The main problem is that the money first needs to be transferred out of the US by a US bank, and most US banks do not authorize such transactions when the destination is Iran.

[67] Human Rights Watch phone interview with a charity employer based in the US, May 2019.

[68] Tyler Cullis, Amir Handjani, The Anatomy of Humanitarian Trade with Iran, Lawfare, https://www.lawfareblog.com/anatomy-humanitarian-trade-iran, (accessed October 18, 2019).

[69] Human Rights Watch phone Interview with Mehrdad (pseudonym), a drug importer, May 2019. Interview with Maryam (pseudonym), a former employee of one of the biggest pharmaceutical companies in Iran, July 2019.

[70] Central Bank Statement, April 21, 2019, https://www.cbi.ir/showitem/19036.aspx.

[71] Data obtained from European Statistical Data Support in June 2019.

[72] Human Rights Watch phone interview with Maryam (pseudonym), former employee of one the biggest importer of medicine in Iran, July 2019.

[73] Esfandyar Batmanghelidj, “Why Iran Pays More for Each Kilogram of European Medicine”, Bourse & Bazar, October 3, 2019, https://www.bourseandbazaar.com/articles/2019/10/3/mysterious-price-dist...

[74] Human Rights Watch interview with Mehrdad (pseudonym), a drug importer, and Human Rights Watch interview with a member of emergency medicine board, April 2019; Human Rights Watch interview with a doctor who is head of a private hospital, May 2019.

[75] Correspondence with a researcher who worked with victims of Iran-Iraq war, April 2019. Interview with a doctor who owns a private hospital in Iran, May 2019.

[76] Human Rights Watch phone interview with Mehrad (pseudonym), a drug importer, April 2019.

[77] Human Rights Watch phone interview with a doctor who is the head a private hospital in Tehran, May 2019.

[78] Inflation rate, average consumer prices, World Economic Outlook, International Monetary Fund, https://www.imf.org/external/datamapper/PCPIPCH@WEO/OEMDC/ADVEC/WEOWORLD... (accessed October 19, 2019).

[79] Consumer Price Index in the Month of Farvardin of the Year 1398, https://www.amar.org.ir/Portals/1/1_Consumer%20Price%20Index%20in%20the%...

[81] Human Rights Watch interview with a nurse who worked at a public hospital in Tehran, June 2019.

[83] A letter sent by the company is available on file.

[84] Human Rights Watch interview with Hassan, a lawyer who represents the epidermolysis bullosa patients, April 2019.

[85] Mithra Ghalibafian, Shabnam Hemmati, Eric Bouffet, The silent victims of the US embargo against Iran, The Lancet, November 1, 2018, https://www.thelancet.com/journals/lanonc/article/PIIS1470-2045(18)30751-4/fulltext#%20 (accessed October 18, 2019).

[86] Copy of documents sent in April 2019, available on file.

[87] Impact of Sanctions on Cancer Patients in Iran, Euro News Persian Service and Associated Press, July 30,2019, https://fa.euronews.com/2019/07/30/iran-struggles-with-medicines-crisis (accessed August 12, 2019).

[88] Vital drugs for cancer patients in short supply in Iran because of U.S. sanctions, CBS news, August 19, 2019, https://www.youtube.com/watch?v=DxJMZTLf1xE.

[89] “Sanctions have Caused Shortage in Epilepsy Medication,” Islamic Republic News Agency, January 5, 2019, https://www.irinn.ir/fa/news/657223/ (accessed August 15, 2019).

[90] Ali A. Asadi-Pooya et al. Impacts of the international economic sanctions on Iranian patients with epilepsy, Epilepsy & Behavior, Volume 95, June 2019, Pages 166-168, https://www.epilepsybehavior.com/article/S1525-5050(19)30236-7/fulltext.

[91] Roshanak Ali Akbari Safa, Mohadese Safakish, “Benefiting from Health Service in the Country, 1393”, Statistics, Third Edition No.6, Pp 9-14, http://amar.srtc.ac.ir/article-۱-۱۵۲-fa.html (accessed August 15, 2019). For an overview of Iran’s health care system, especially in rural areas, see Kevan Harris, A Social Revolution: Politics and the Welfare State in Iran (University of California Press, 2017), Chapter 4. Despite making significant progress in expanding healthcare access, particularly for marginalized populations including refugees, the system suffers from mismanagement, inadequate funding, and a lack of accessibility for and discrimination against people with disabilities. See Human Rights Watch: https://www.hrw.org/report/2018/06/26/i-am-equally-human/discrimination-....

[92] Correspondent, “Rouhanicare.” Iranian president's unsung domestic success, The Guardian, September 4, 2017, https://www.theguardian.com/world/2017/sep/04/rouhanicare-iran-president... (accessed August 12, 2019).

[93] Human Rights Watch interview with a doctor who is the head of a private hospital in Tehran, May 2019.

[94] “Which Medicine was Excluded from Insurance?” Young Journalist Club, June 25, 2018, https://www.yjc.ir/fa/news/6576186/ (accessed August 12, 2o19.)

[95] Reza Moradi, Sanctions and Expansion of Poverty ; Reason for Reducing Unnecessary Expenditure, Tableau  Magazine, https://tableaumag.com/1397/11/تحریم%E2%80%8Cها-و-توسعه%E2%80%8C%E2%80%8Cی-فقر؛-دلیل-کاهش-ب/ ( Accessed October 18, 2019).

[96] Human Rights Watch interview with Masoud (pseudonym), an Iran analyst; his mother was hospitalized in in western Iran.

[97] Human Rights Watch interview with Setareh (pseudonym), a nurse who is now based in Turkey, June 26, 2019.

[98] Articles 11 and 12, International Covenant on Economic, Social and Cultural Rights (ICESCR), 1966.

[99] Article 2, International Covenant on Economic, Social and Cultural Rights, 1966.

[100] Report of the Special Rapporteur on the right of everyone to the enjoyment of the highest attainable standard of physical and mental health, Anand Grover, on access to medicines, May 1, 2013, A/HRC/23/42, https://www.ohchr.org/Documents/HRBodies/HRCouncil/RegularSession/Sessio....

[101]Ibid, para 40.

[103] See CESCR, General Comment No 14 (2000): Substantive Issues Arising in the Implementation of the International Convention on Economic Social and Cultural Rights, E/C.12/2000/4, para 41.

[104] CESCR, General Comment No. 8, para 13. 

[105] Ibid, para 7.

[106] See CESCR, General Comment No 8: The relationship between economic sanctions and respect for economic and social rights, 4 December 1997, E/C.12/1997/8; 5 IHRR 302 (1998), para 14.

[107] Maastricht Principles on Extraterritorial Obligations of States in the Area of Economic, Social and Cultural Rights (2011), Para 22., https://www.etoconsortium.org/en/main-navigation/library/maastricht-prin....

[108] See CESCR, General Comment No 8: The relationship between economic sanctions and respect for economic and social rights, 4 December 1997, E/C.12/1997/8; 5 IHRR 302 (1998), para 10.

Posted: January 1, 1970, 12:00 am

Objective of this Guide

Many First Nations persons are facing daily challenges just to access safe water for drinking and hygiene—a fundamental human right easily enjoyed by most Canadians. In 2016, Human Rights Watch released a report on First Nations communities in the province of Ontario that looked at the human impacts of this crisis and why the problem persists. We found that the Canadian government has violated its international human rights obligations toward First Nations persons and communities by failing to remedy the severe water crisis.

Along with infrastructure investments, the federal government should remedy a range of problems that contribute to the water crisis. This guide seeks to set out how First Nations communities and advocates can use the human rights framework as an additional tool in advocating for safe drinking water. While First Nations persons and peoples have aboriginal and treaty rights from which they can build their advocacy, the drinking water crisis on reserves is a space where human rights are also highly relevant. This guide seeks to provide an overview of the legal framework behind the human right to water and recommendations on how to engage government actors on the topic.

This guide is intended to be a tool that is accessible and useful for chiefs and councils, communities and individual waterkeepers, and advocates.

What are Human Rights?

To speak of “human rights,” or to use the language of international human rights law, is to speak an international language, one that, for all its complex and sometimes controversial history, has served as a powerful tool for positive change. As one human rights historian notes, human rights “evoke hope and provoke action.”[1]

But what are human rights, and how do they generate change? According to the leading United Nations human rights agency:

Human rights are rights inherent to all human beings, whatever our nationality, place of residence, sex, national or ethnic origin, colour, religion, language, or any other status. We are all equally entitled to our human rights without discrimination. These rights are all interrelated, interdependent and indivisible.[2]

People or organizations often invoke human rights as a rhetorical tool to bring weight and gravity to situations of injustice. But the power of human rights’ rhetoric derives from these terms being grounded in a framework that has the force of international law, under which governments have obligations.

International human rights define the relationship between a state (the government) as a “duty-bearer” of rights and people living in that state as “rights-holders.” This means that the primary responsibility for making sure that people can enjoy their human rights rests with the government. States have voluntarily decided to accept the obligations contained in international human rights treaties to which they have agreed to become a party. They are also bound by customary human rights law, to which all states must abide.

A human rights-based approach is one that makes those directly affected by a human rights failure central to planning and operationalizing a response. This approach recognizes individuals and communities as rights-holders with legal entitlements and identifies governments and their partners as duty-bearers with obligations to meet those entitlements. Adhering to human rights principles requires particular attention to the needs of vulnerable and marginalized groups, access to information, and the establishment of procedures to ensure nondiscrimination and equality, accountability, and participation.

Human rights standards should guide all stages of programming, and any direct or indirect discrimination on any grounds should be eliminated immediately.

Working on drinking water through a human rights lens will often require looking at systemic problems, as these most often constitute the barriers to the realization of human rights. In practice, regulations, local by-laws and administrative procedures can act either as enablers or barriers to enjoying human rights. Understanding these barriers and identifying how and why they unjustifiably interfere with human rights can inform how to advocate more effectively for change or hold governments accountable.

Human rights are not the only frame from which First Nations individuals and communities can advocate for clean and safe water. In June 2019, the Chiefs in Assembly at the Chiefs of Ontario All Ontario Chiefs Conference passed a resolution designating the Great Lakes as living entities with endowed rights and ordered the Chiefs of Ontario to research the legal process of granting personhood to bodies of water.[3] This is not without precedent. Upon the advocacy and encouragement of the Māori peoples, the parliament of New Zealand granted the Whanganui River the same legal rights as people, ensuring legal guardians can represent the interests of the river in matters affecting it.[4] In Colombia, the Supreme Court advanced the rights of nature in a 2018 ruling that recognized the Amazon river eco-system as a rights-holder.[5]

The Human Right to Water

Canada has ratified numerous human rights treaties that contain obligations related to water and sanitation, including the International Covenant on Economic, Social and Cultural Rights (ICESCR), the Convention on the Elimination of All Forms of Discrimination against Women (CEDAW), the Convention on the Rights of the Child (CRC), the Convention on the Rights of Persons with Disabilities (CRPD), and the International Covenant on Civil and Political Rights (ICCPR).[6] Canada has also endorsed the UN Declaration on the Rights of Indigenous Peoples (UNDRIP). [7] This Declaration recognizes Indigenous peoples’ right to determine and develop priorities for the development or use of their lands or territories and recognizes Indigenous peoples’ right to maintain and strengthen their spiritual relationship with traditionally owned or occupied lands, territories, waters, coastal seas, and other resources, and to uphold their responsibilities to future generations.[8]

A number of international human rights bodies and experts have raised concerns, specifically, that Canada has failed to fulfill First Nations peoples’ rights to water and sanitation.[9] For example, after its February 2016 review of Canada, the United Nations Committee on Economic, Social and Cultural Rights (CESCR), which monitors governments’ compliance with the ICESCR, noted its concern about “the restricted access to safe drinking water and to sanitation by the First Nations as well as the lack of water regulations for the First Nations people living on reserves.” It urged Canada to “live up to its commitment to ensure access to safe drinking water and to sanitation for the First Nations while ensuring their active participation in water planning and management,” and to “bear in mind not only indigenous peoples’ economic right to water but also the cultural significance of water to indigenous peoples.”[10]

The right to water entitles everyone, without discrimination, to have access to:

  • sufficient,
  • safe,
  • acceptable,
  • physically accessible, and
  • affordable water for personal and domestic use.[11]

Various resolutions from the UN General Assembly and Human Rights Council affirm that the right to safe drinking water is derived from the right to an adequate standard of living.[12] The right to an adequate standard of living is enshrined in human rights instruments ratified by Canada, such as the ICESCR, CEDAW, CRPD, and the CRC.

The CESCR, in its General Comment 15 on the right to water, noted that an aspect of the core content of the right to water is that water required for personal or domestic use must be safe. This means it must be free from harmful microbes and parasites, chemical substances, and radiological hazards that constitute a threat to a person’s health.[13]

The committee also stated that a “violation of the obligation to fulfill” the right to water can occur when there is “insufficient expenditure or misallocation of public resources which results in the non-enjoyment of the right to health by individuals or groups.”[14]

The then UN Special Rapporteur on the on the Human Right to Safe Drinking Water and Sanitation Catarina de Albuquerque (hereinafter “the special rapporteur”), has also noted that in situations of emergency, states “have an obligation to provide culturally appropriate services directly.”[15] She also noted that violations of the right to water may result from a failure to act, to implement comprehensive plans and strategies that ensure the full realization of the rights in the long term, to regulate non-state actors, and as an unintended consequence of policies, programs, and other measures.[16]

Related Human Rights

Right to Sanitation

The right to sanitation entitles everyone, without discrimination, to “have physical and affordable access to sanitation, in all spheres of life, that is safe, hygienic, secure, and socially and culturally acceptable, and that provides privacy and ensures dignity.”[17] As with the right to water, the right to sanitation is derived from the right to an adequate standard of living.[18]

The special rapporteur has stated that states should “ensure that the management of human excreta does not negatively impact on human rights.”[19]

Right to Health

The right to the highest attainable standard of health is found in article 25 of the Universal Declaration of Human Rights (UDHR) and in international treaties binding upon Canada, including the ICESCR and the CRC.[20]

The CESCR, in its General Comment 14 on the right to health, has interpreted the ICESCR to include:

[T]he requirement to ensure an adequate supply of safe and potable water and basic sanitation [and] the prevention and reduction of the population’s exposure to harmful substances such as radiation and harmful chemicals, or other detrimental environmental conditions that directly or indirectly impact upon human health.[21]

The right to health encompasses the right to healthy natural environments.[22] This right involves the obligation to “prevent threats to health from unsafe and toxic water conditions.”[23]

The CESCR has stated that a “violation of the obligation to fulfill” the right to health can occur when there is “insufficient expenditure or misallocation of public resources which results in the non-enjoyment of the right to health by individuals or groups.”[24]

Right to Housing

The poor water and sanitation situation in First Nation communities is related to challenges in realizing other human rights—with housing as a primary concern. Overcrowding is the norm on reserves, and many communities cannot address this issue through extending their housing stock without upgrades to their water and wastewater infrastructure. The right to housing is found in article 25 of the UDHR, as a part of the right to an adequate standard of living, and in international treaties binding upon Canada, including the ICESCR.[25]

The CESCR, in its General Comment 4 on the right to adequate housing, has interpreted the right to include:

[C]ertain facilities essential for health, security, comfort and nutrition. All beneficiaries of the right to adequate housing should have sustainable access to natural and common resources, safe drinking water, energy for cooking, heating and lighting, sanitation and washing facilities, means of food storage, refuse disposal, site drainage and emergency services.[26]

The CESCR has stated parties to the treaty should “give due priority to those social groups living in unfavourable conditions by giving them particular consideration.”[27]

Right to Nondiscrimination

Core international human rights treaties expressly prohibit discrimination and require the parties to these conventions to take measures to eradicate all forms of discrimination against individuals.

The CESCR, in its General Comment No. 20 on non-discrimination in economic, social and cultural rights, recommended that states parties adopt “specific legislation that prohibits discrimination in the field of economic, social and cultural rights. Such laws should aim at eliminating formal and substantive discrimination, attribute obligations to public and private actors, and cover the prohibited grounds discussed above. Other laws should be regularly reviewed and, where necessary, amended in order to ensure that they do not discriminate or lead to discrimination, whether formally or substantively, in relation to the exercise and enjoyment of Covenant rights.”[28]

Knowing About and Acting on the Human Right to Water

Everyone has the right to know their rights and to be able to act on those rights meaningfully. For the right to water, this means the government has to engage with communities to give them sufficient information about water resources and the risks to those resources. It also means the government has to involve all communities in decisions that affect water resources and ensure that these decisions are taken with the free, prior, and informed consent of Indigenous communities.

The Right to Information

The right to water also entails certain procedural obligations when it comes to the provision of information about water resources and the involvement of community members in decisions that impact water resources. Specifically, the right to water protects the right of individuals to have full access to information held by public authorities or third parties, such as corporations, concerning water services and the environment.[29]  It is also protected under the right to participation[30] and as an independent right in and of itself.[31]

This means that the Canadian government has a legal obligation to ensure that information relevant to water resource use and quality is made available, accessible, functional, and shared in a manner consistent with the principle of nondiscrimination.

Available means that “current reliable information has been generated and collected in a manner adequate to assess the magnitude of potential adverse impacts on the rights of people.”[32]

Accessible means that “everyone can seek, obtain, receive and hold available information,” that the information is provided “in a timely manner,” and that any costs resulting from accessing such information are “kept at a minimum.”[33]

Functional means that the information “works to prevent harm, to enable democratic decision-making, and to ensure accountability, access to justice, and an effective remedy.”[34] Technical language must be “translated into a language that is functional, to enable individuals and groups of individuals to make informed choices,” and the “underlying data from which conclusions are drawn” must be accessible.[35]

Consistent with the principle of nondiscrimination means that information must be “disaggregated and specialized” to “understand and prevent disproportionate implications and impacts of hazardous substances and wastes on individuals and specific population groups, including different ages, incomes, ethnicities, genders as well as minorities and indigenous peoples.”[36]

The special rapporteur has emphasized that in the context of water, the right to information means “Public bodies should proactively publish information rather than merely react to crises or complaints. Requests for information should be processed rapidly and fairly.”[37]

The Right to Participation

Providing information in-line with the right to information is also essential to the fulfillment of the right to participate in decision-making processes that affect the exercise of the right to water,[38] and the case of Indigenous communities, the right to free, prior, and informed consent with respect to projects implicating the utilization of water resources.[39] “Participation is not a single event, but a continuous process”,[40] and it must be “active, free, and meaningful.”[41]

Active, free, and meaningful participation requires more than “token forms of participation,” such as “the mere sharing of information or superficial consultation.”[42] Rather, “[s]tates have an obligation to invite participation and to create opportunities from the beginning of deliberations on a particular measure and before any decisions, even de facto decisions, have been taken.”[43] Further, “[p]articipants must be involved in determining the terms of participation, the scope of issues and the questions to be addressed, their framing and sequencing, and rules of procedure.”[44] In the context of the right to water, required participation includes the right to participate in decisions on financing and budgeting of water services;[45] and the type, location, and improvement of water service provision, including whether to involve the private sector.[46]

For meaningful participation to occur, it is important to ensure that people’s views are not only considered, but actually influence decision-making.[47] The special rapporteur observes that “[o]ften, consultations are oriented towards securing people’s consent rather than involving them in the design of measures. If people are allowed ‘voice without influence,’ i.e., they are involved in processes that have no impact on policymaking, the potential for frustration is enormous.”[48]

States should also actively work to eliminate barriers to participation.[49] Barriers can take the form of prohibitive costs for people participating, both in terms of lost time and opportunity costs.[50] “In order to justify the costs and avoid frustration,” the special rapporteur notes, “participation must be meaningful and actually influence decision-making.” Indeed, for government and service providers, “the cost of undoing or redoing a project because of people’s objections can be higher than the costs of participatory processes.”[51] The special rapporteur also notes:

The most persistent barrier to participation may lie in surmounting a culture of low expectations and cynicism, beliefs harboured both by individuals and public officials. States should revise the incentive structures for public officials so that they are rewarded for facilitating genuine participation rather than regarding it merely as an item to be mechanically ticked off on a checklist. This may require training on facilitation and inter-personal skills.[52]

Active, free, and meaningful participation also requires that participation must be free from coercion or inducement, direct or indirect.[53] More specifically, the special rapporteur on the human right to safe drinking water and sanitation has asserted that, “There must be no conditions attached, such as tying access to water and sanitation to attendance of a public hearing. Participation must not be secured through bribery or the promise of a reward.”[54]

How Communities Can Use Human Rights to Advance the Right to Water

Set the stage for meaningful participation

  • Work with representative organizations to advocate for a First Nations water commission to monitor and evaluate government performance related to water and wastewater on First Nations, including specifically the outcomes related to government water and wastewater funding commitments. In its work, the commission should take into account Indigenous customs, laws, and practices.
  • Require government actors to recognize and engage the cultural aspects of water when calling on community input or participation so that communities and individuals can identify culturally acceptable sustainable water policy, and practical solutions on reserves.
  • Provide government actors with a set of lessons learned from past community engagement and failed funding commitments for water and wastewater systems to prevent replication of past failures.
  • Work closely with First Nations technical and community experts and ensure that new system designs allow for population growth, account for sustainable life-cycle costs, and are adaptable to decreased source water quality over time.
  • Identify within the community individuals who are most marginalized and unable to participate in community decision-making and actively create channels for their participation throughout any process. In particular, ensure women, persons with disabilities, and marginalized individuals have the opportunity to engage meaningfully. Present government authorities with clearly identified channels and plan for broad spectrum participation.

Use rights language to demand transparency and accountability

  • As a matter of human rights, seek to develop a plan with the federal government to address local water and sanitation crises with a concrete, collaborative plan. The plan should have:
    • Quantifiable targets;
    • Sufficient and consistent budget allocations;
    • A fixed timeframe for initial implementation;
    • Federal commitments for ongoing operation and maintenance support;
    • A time-bound commitment to end long-term drinking water advisories and reduce risk level of high-risk water and wastewater assets on reserves;
    • Specific recommendations, funding, and measures related to private or household-level water and wastewater systems; and,
    • Clear expectations for reporting back to the community progress towards the plan.
  • Develop a community-based assessment of water and wastewater assets annually to present to government actors and highlight where funding commitments are failing to keep pace with investment needs.
  • Demand that the federal government develop a fair, transparent process for determining financial support for water and wastewater systems on reserves, including a formula for calculating capital, operation, and maintenance funding levels.

Elevate community concerns to provincial, national, or international audiences

  • Some audiences can connect with communities in crisis better when they understand that there are human rights violations at stake. Being able to communicate community concerns via social media or traditional media outlets in human rights terms can often motivate new audiences to agitate officials to address the issue.
  • Particularly when there is an emergency, it can be important to seek outside audiences to amplify the message a community is trying to convey to federal or provincial officials. Human rights mechanisms within the United Nations can be a great way to do that. There are a number of independent human rights experts within the United Nations who can issue statements or letters to the Canadian government, including experts on the rights to water and sanitation, on environment and human rights, on rights of Indigenous peoples, and on extreme poverty and human rights. You can locate the relevant experts via this website: https://spinternet.ohchr.org/_layouts/15/SpecialProceduresInternet/ViewA....
  • Other human rights mechanisms include committees that monitor Canada’s implementation of international human rights treaty obligations. Reporting human rights concerns to these committees can increase international and public scrutiny of Canada’s actions. These committees review Canada’s record on a set timeline, so advocacy with these committees are for protracted or neglected human rights issues or concerns. You can locate relevant committees, including the Committee on Economic, Social and Cultural Rights, the Human Rights Committee, and the Committee on the Rights of the Child, and other important human rights treaty bodies highly relevant via this website: https://www.ohchr.org/EN/HRBodies/Pages/TreatyBodies.aspx.

Case Study: Flint, Michigan, USA

In April 2014, the city of Flint, Michigan, under state-appointed emergency management, switched its water source from Lake Huron to the Flint River as a cost-savings measure. Residents immediately raised concerns about the water color, taste, and odor, and reported various health complaints including skin rashes. Bacteria, including E. coli, were detected in the distribution system.[55] At the same time the city stopped its corrosion control measures and added ferric chlorine to treat the water, increasing the corrosivity of the Flint River water and leaching lead into the water supply.[56] A team of researchers led by a local pediatrician, Dr. Mona Hanna-Attisha, found that the number of children with elevated lead levels in their blood doubled—and in some neighborhoods tripled—after the switch in the water supply.[57].

Public outrage eventually pushed President Barack Obama to declare a federal emergency in 2016,[58] but the damage to people’s health was done. Lead can have devasting health impacts.[59] There is no safe level of lead exposure, and pregnant women and children are particularly vulnerable.[60]  

Community members started to raise concerns with local officials in early 2015.[61] The full story of what officials knew and when they knew it is unfolding, with 15 people in state and local government charged with crimes as of June 2019.[62]

When government officials were not responsive, communities engaged in their own documentation of the severity of the violation of the right to water and turned to United Nations independent human rights experts on hazardous substances and wastes, health, water and sanitation, Indigenous peoples, minorities, and racism to amplify their call for action.[63] These experts highlighted that the Flint crisis was not just a public health concern, but a human rights disaster. These experts timed their statement to coincide with national presidential debates to raise the profile of the issue as a human rights concern.[64]

While the struggle for accountability for the Flint crisis is still winding through the US courts and the replacement of lead pipes continues, the activists who worked hard to link the Flint water crisis with human rights successfully added international attention and pressure on state and local officials.

 

 

[1] Samuel Moyn, The Last Utopia: Human Rights in History (Cambridge: Harvard University Press, 2010), p. 1.

[2] “What are Human Rights?” Office of the United Nations High Commissioner for Human Rights (OHCHR), http://www.ohchr.org/EN/Issues/Pages/WhatareHumanRights.aspx.

[3] Chiefs of Ontario, “Great Lakes as Living Entities,” Resolution 26/19, June 2019.

[4] New Zealand Parliament, “Innovative bill protects Whanganui River with legal personhood,” March 28, 2017, https://www.parliament.nz/en/get-involved/features/innovative-bill-protects-whanganui-river-with-legal-personhood/ (accessed October 3, 2019). For an in-depth look at the beauty and importance of the Whanganui River, see Kennedy Warne, “A Voice for Nature,” National Geographic, April 24, 2019, https://www.nationalgeographic.com/culture/2019/04/maori-river-in-new-zealand-is-a-legal-person/ (accessed October 3, 2019).

[5] Corte Suprema de Justicia [C.S.J.] [Supreme Court], Sala Cas. Civ. 4 de abril de 2018. M.P.: Luis Armando Tolosa Villabona, STC4360-2018 (Colombia), para. 12, http://www.cortesuprema.gov.co/corte/wp-content/uploads/2018/04/STC4360-2018-2018-00319-011.pdf (accessed October 3, 2019) (citing Corte Constitucional [C.C.] [Constitutional Court], 10 de noviembre de 2016, Sentencia T-622/16 (Colombia), http://www.corteconstitucional.gov.co/relatoria/2016/t-622-16.htm (accessed October 3, 2019)).

[6] International Covenant on Economic, Social and Cultural Rights (ICESCR), adopted December 16, 1966, G.A. Res. 2200A (XXI), 21 U.N. GAOR Supp. (No. 16) at 49, U.N. Doc. A/6316 (1966), 993 U.N.T.S. 3, entered into force January 3, 1976, ratified by Canada 1976; Convention on the Elimination of All Forms of Discrimination against Women (CEDAW), adopted December 18, 1979, G.A. res. 34/180, 34 U.N. GAOR Supp. (No. 46) at 193, U.N. Doc. A/34/46, entered into force September 3, 1981, ratified by Canada 1981; Convention on the Rights of the Child (CRC), adopted November 20, 1989, G.A. Res. 44/25, annex, 44 U.N. GAOR Supp. (No. 49) at 167, U.N. Doc. A/44/49 (1989), entered into force September 2, 1990, ratified by Canada 1991; International Covenant on Civil and Political Rights (ICCPR), adopted December 16, 1966, G.A. Res. 2200A (XXI), 21 U.N. GAOR Supp. (No. 16) at 52, U.N. Doc. A/6316 (1966), 99 U.N.T.S., entered into force March 23, 1976; Convention on the Rights of Persons with Disabilities (CRPD), adopted December 13, 2006, G.A. Res. 61/106, Annex I, U.N. GAOR, 61st Sess., Supp. (No. 49) at 65, U.N. Doc. A/61/49 (2006), entered into force May 3, 2008, ratified by Canada 2010.

[7] United Nations Declaration on the Rights of Indigenous Peoples (UNDRIP), adopted September 13, 2007, G.A. Res. 61/295, U.N. Doc. A/61/L.67 and Add.1 (2007), para. 25, 32, www.un.org/esa/socdev/unpfii/documents/DRIPS_en.pdf (accessed February 14, 2015). Canada issued a statement formally supporting the UNDRIP three years after voting against its passage in September 2007 at the UN General Assembly. See Canada's Statement of Support on the United Nations Declaration on the Rights of Indigenous Peoples, November 12, 2010, http://www.aadnc-aandc.gc.ca/eng/1309374239861/1309374546142 (accessed May 25, 2016). On May 9, 2016, Minister of Indigenous and Northern Affairs Canada announced it officially removed its objector status to the declaration. Tim Fontaine, “Canada officially adopts UN declaration on rights of Indigenous Peoples,” CBC News, May 10, 2016, http://www.cbc.ca/news/aboriginal/canada-adopting-implementing-un-rights... (accessed May 12, 2016).

[8] UNDRIP, arts. 32 and 25.

[9] See, for example, UN Committee on the Elimination of Discrimination against Women (CEDAW Committee), Concluding observations: Canada, U.N. Doc. CEDAW/C/CAN/CO/8-9, November 25, 2016, paras. 28, 47(b), https://documents-dds-ny.un.org/doc/UNDOC/GEN/N16/402/03/PDF/N1640203.pd... (accessed October 3, 2019); CEDAW Committee,

 Concluding observations: Canada, U.N. Doc. CEDAW/C/CAN/CO/7, November 7, 2008, para. 43, http://tbinternet.ohchr.org/_layouts/treatybodyexternal/Download.aspx?sy... (accessed May 25, 2016), paras. 43-44; UN Committee on Economic, Social, and Cultural Rights, Concluding Observations: Canada, U.N. Doc. E/C.12/CAN/CO/4, E/C.12/CAN/CO/5, May 22, 2006, paras. 43-44, http://www.refworld.org/publisher,CESCR,CONCOBSERVATIONS,CAN,45377fa30,0... (accessed May 25, 2016).

[10] UN Committee on Economic, Social, and Cultural Rights, Concluding Observations, Canada, U.N. Doc. E/C.12/CAN/CO/6, March 4, 2016, paras. 43-44.

[11] UN General Assembly, “The human rights to safe drinking water and sanitation,” Resolution 70/169, U.N. Doc. A/RES/70/169/ (February 22, 2016).

[12] Ibid. See also, UN Human Rights Council resolution 15/9 of September 2010, Resolution 16/2 of March 2011, Resolution 18/1 of September 2011 and Resolution 21/2 of September 2012.

[13] The Committee on Economic, Social and Cultural Rights is the UN body responsible for monitoring compliance with the ICESCR. UN Committee on Economic, Social and Cultural Rights, General Comment No. 15, The Right to Water, U.N. Doc. E/C.12/2002/11(2003), para. 12(b).

[14] Ibid., para. 44(c).

[15] UN Human Rights Council, Report of the independent expert on the issue of human rights obligations related to access to safe drinking water and sanitation, UN Doc. A/HRC/27/55, June 30, 2014, para. 53.

[16] Ibid., para. 85.

[17] UN General Assembly, The human rights to safe drinking water and sanitation, Resolution 70/169, U.N. Doc. A/RES/70/169, December 17, 2015.

[18] Ibid. See also, UN Human Rights Council resolution 15/9 of September 2010, resolution 16/2 of March 2011, resolution 18/1 of September 2011 and resolution 21/2 of September 2012.

[19] UN General Assembly, Report of the independent expert on the issue of human rights obligations related to access to safe drinking water and sanitation, UN Doc. A/HRC/12/24, July 1, 2009, para. 64; see also UN Committee on Economic, Social and Cultural Rights, Statement on the Right to Sanitation, U.N. Doc. E/C.12/2010/1, November 19, 2010.

[20] Universal Declaration of Human Rights (UDHR), adopted December 10, 1948, G.A. Res. 217A(III), U.N. Doc. A/810 at 71 (1948), art. 25; ICESCR, art. 12; Convention on the Rights of the Child, art. 24.

[21] UN Committee on Economic, Social and Cultural Rights, General Comment No. 14: The right to the highest attainable standard of health, U.N. Doc. E/C.12/2000/4 (2000), para. 15.

[22] ICESCR, art 12; CESCR General Comment No. 14, para. 15.

[23] CESCR General Comment No. 15, para. 8; see also CESCR General Comment No. 14, para. 15. Similarly, the Committee on the Rights of the Child has concluded, “Safe and clean drinking water and sanitation are essential for the full enjoyment of life and all other human rights,” including the right to the highest attainable standard of health. Committee on the Rights of the Child, General Comment No. 15 on the right of the child to the enjoyment of the highest attainable standard of health, U.N. Doc. CRC/C/GC/15 (2013), para. 48.

[24] CESCR General Comment No. 14, para. 52.

[25] UDHR, art. 25; ICESCR, art. 11(1).

[26] UN Committee on Economic, Social and Cultural Rights, General Comment No. 4, The Right to Adequate Housing, U.N. Doc. E/1992/23 (1992), para. 8(b).

[27] Ibid., para. 11.

[28] CESCR General Comment No. 20, para. 37.

[29] CESCR General Comment No. 15, para. 48. See also UN Economic Commission for Europe Convention on Access to Information, Public Participation in Decision-Making and Access to Justice in Environmental Matters art. 5(1)(c), June 25, 1998 (requiring immediate dissemination to potentially affected communities of all information that could enable the public to take measures to prevent or mitigate harm arising from environmental threats). See CESCR General Comment No. 15, para.12(c)(iv); OHCHR, “The Right to Water: Fact Sheet No. 35,” August 2010, https://www.refworld.org/docid/4ca45fed2.html; UN General Assembly, Report of the Special Rapporteur on the human rights to safe drinking water and sanitation, U.N. Doc. A/73/162, July 16, 2018, paras. 8, 49-53 (noting the need for “spaces for participation, transparency, access to information, monitoring, assessment and oversight of progress or possible setbacks in the realization of the rights, as well as enforcement mechanisms”); UN General Assembly, Report of the Special Rapporteur on the Human Right to Safe Drinking Water and Sanitation, Catarina de Albuquerque, U.N. Doc. A/69/213, July 31, 2014, paras. 27 and 29 (listing access to information as a criterion for active, free and meaningful participation).

[30] Report of the Special Rapporteur on the Human Right to Safe Drinking Water and Sanitation, paras. 9 - 17 (describing the legal basis of the right to participation).

[31] See UN Human Rights Council, Report of the Special Rapporteur on the Implications for Human Rights of the Environmentally Sound Management and Disposal of Hazardous Substances and Wastes, Baskut Tuncak, U.N. Doc. A/HRC/30/40, July 8, 2015, para. 22 (noting that the right is derived from the right freedom of expression and the right to take part in public affairs, and encompasses “the right of individuals to request and receive information of public interest and information concerning themselves that may affect their individual rights”).

[32] Ibid., para. 33.

[33] Ibid., para. 34.

[34] Ibid., para. 35.

[35] Ibid., para. 36.

[36] Ibid., para. 37.

[37] Report of the Special Rapporteur on the Human Right to Safe Drinking Water and Sanitation, para 29. 

[38] See CESCR General Comment No. 15, para. 48; UN Human Rights Council, Special Rapporteur on the Human Right to Safe Drinking Water and Sanitation, Common Violations of the Human Rights to Water and Sanitation, Catarina de Albuquerque, U.N. Doc. A/HRC/27/55. June 30, 2014, para. 68 (stating that violations of the right to participate can occur through “failure to take reasonable steps to facilitate participation, including by ensuring the right to access to information” and noting that the procedural dimension of the right to water stems from the right to participate in public affairs as guaranteed by ICCPR, art. 25(a)).

[39] See United Nations Declaration on the Rights of Indigenous Peoples.

[40] Report of the Special Rapporteur on the Human Right to Safe Drinking Water and Sanitation, para. 2.

[41] Report of the Special Rapporteur on the Human Right to Safe Drinking Water and Sanitation, paras. 18–31. (defining “active, free and meaningful” as requiring the following steps: involving people in the terms of engagement; creating opportunities for participation from the beginning of deliberations; eliminating all barriers to accessing deliberative processes; free and safe participation without coercion, inducement, reprisals, or discrimination; access to information; ensuring people’s views are considered and are able to influence the decision; requiring more than simply obtaining consent). See also Special Rapporteur on the Human Right to Safe Drinking Water and Sanitation, Common Violations of the Human Rights to Water and Sanitation, paras. 68-69 (supporting the concept of “meaningful engagement” established in Occupiers of 51 Olivia Road, Bera Township and 197 Main Street, Johannesburg v. City of Johannesburg, [2008] ZACCT 1, paras. 18, 21 (S. Afr.)). See also Inga Winkler, The Human Right to Water: Significance, Legal Status and Implications for Water Allocation (Portland: Hart Publishing, 2012), p. 220 (participation requires that “the specific decisions regarding water allocation within that framework are taken by including all relevant stakeholders”).

[42] Report of the Special Rapporteur on the Human Right to Safe Drinking Water and Sanitation, para. 18.

[43] Ibid., para. 21.

[44] Ibid., para. 19.

[45] Ibid., paras. 62-63 (citing the example of Kenyan residents in Kayole-Soweto who were successful in negotiating a policy of spreading payment for water connection over two years).

[46] Ibid., para. 67.

[47] Ibid., para. 30.

[48] Ibid.

[49] Ibid., para. 22.

[50] Ibid., para. 37.

[51] Ibid., para. 38.

[52] Ibid., para. 23.

[53] Ibid., para. 25.

[54] Ibid.

[55] Dr. Mona Hanna-Attisha, Jenny LaChance, Dr. Richard Casey Sadler, and Dr. Allison Champney Schnepp, “Elevated blood lead levels in children associated with the Flint drinking water crisis: a spatial analysis of risk and public health response,” American Journal of Public Health 106, no. 2 (2016): 283-290, accessed October 3, 2019, doi: 10.2105/AJPH.2015.303003.

[56] David C. Bellinger, “Lead contamination in Flint—an abject failure to protect public health,” New England Journal of Medicine 374, no. 12 (2016): 1101-1103, accessed October 3, 2019, doi: 10.1056/NEJMp1601013.

[57] Dr. Sanjay Gupta, Ben Tinker, and Tim Hume, “‘Our Mouths Were Ajar’: Doctor’s Fight to Expose Flint’s Water Crisis,” CNN, January 22, 2016, https://www.cnn.com/2016/01/21/health/flint-water-mona-hanna-attish/ (accessed October 3, 2019).

[58] Paul Egan and Todd Spangler, “President Obama Declares Emergency in Flint,” Detroit Free Press, January 16, 2016, https://www.freep.com/story/news/local/michigan/2016/01/16/president-oba... (accessed October 3, 2019).

[59] “Lead poisoning and health,” World Health Organization, August 23, 2018, https://www.who.int/en/news-room/fact-sheets/detail/lead-poisoning-and-h... (accessed October 3, 2019).

[60] “Childhood Lead Poisoning Prevention: At-Risk Populations,” Centers for Disease Control and Prevention, July 30, 2019, https://www.cdc.gov/nceh/lead/prevention/populations.htm (accessed October 3, 2019).

[61] Don Hopey, “Flint water crisis timeline,” Pittsburgh Post-Gazette, October 12, 2018, https://www.post-gazette.com/news/health/2018/10/21/Flint-water-crisis-t... (accessed October 3, 2019).

[62] Mitch Smith, “Flint Water Prosecutors Seize Former Michigan Governor’s Cellphone,” New York Times, June 3, 2019, https://www.nytimes.com/2019/06/03/us/rick-snyder-flint-water-crisis.html (accessed October 3, 2019).

[63] Flint: Fundamentally about human rights – UN experts underline,” United Nations Human Rights Office of the High Commissioner press release, Geneva, March 3, 2016, https://www.ohchr.org/en/NewsEvents/Pages/DisplayNews.aspx?NewsID=17139&... (accessed October 3, 2019).

[64] Ibid.

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

Aerial photo of the vast freshwater resources in the Hudson Bay Lowlands, Ontario, Canada. October 2018.

© 2019 Human Rights Watch
(Toronto) – Canada’s new government should make addressing the lack of safe drinking water in many First Nations communities in Canada an urgent priority, Chiefs of Ontario and Human Rights Watch said today. Despite some progress over the last four years, successive Canadian governments have an overall record of failure to deliver on their promises for safe drinking water.

Human Rights Watch and Chiefs of Ontario are releasing a guide on the human right to water for First Nations communities and advocates. The report provides an overview of the legal framework behind the human right to water and recommendations on how to work with government officials and other towards the realization of this right.

“Despite focused media and government attention, many First Nations communities in Canada face a daily struggle to get safe drinking water,” said Amanda Klasing, acting women’s rights co-director at Human Rights Watch. “More needs to be done, and we hope this guide will be an additional tool for communities to make their voices heard as a new parliament is seated and gets to work.”

In 2015 and 2016, Human Rights Watch conducted research in First Nations communities in Ontario and found that the Canadian government had violated a range of international human rights obligations by failing to provide a safe water supply to First Nations reserves.

Since that time, the federal government has taken steps to increase transparency in situations in which First Nations communities have long been without a safe water supply. The federal government stated their intention to work more closely with the communities to address the problems, including working to develop an assets management approach. Such an approach would ensure that funds and other resources are sufficient for operation and maintenance to keep functioning systems in good working order.

Indigenous Services Canada in September 2019 announced new investments in operations and maintenance consistent with this approach, a move that First Nations have long called for. The government should include sufficient funds in the budget to support the effort.

There has also been regional engagement by the federal government with First Nations on potential successor legislation to the controversial Safe Drinking Water for First Nations Act. While more engagement by Indigenous Services Canada is expected in early 2020, First Nations need assurances that the commitment to co-development of legislation on safe drinking water in reserves will ensure First Nations have a meaningful role in writing the rules for developing and maintaining safe water supplies in their own communities.

Many communities on First Nations reserves face immediate water emergencies that need urgent attention. At least 56 drinking water advisories remained in place as of October 4, and the underlying systemic water and wastewater problems facing First Nations in Canada remain. The Neskantaga First Nation in northern Ontario has had a Boil Water Advisory in place for the last 23 years and recently faced an infrastructure failure that led to evacuation of the community.

The Chiefs of Ontario continue to press federal and provincial governments to provide safe, potable drinking water – which is a human right – for First Nations peoples. The Chiefs of Ontario are advocating for sustainable water systems under a cooperative effort with the federal governments based on truth and reconciliation.

It is often those who least contribute to water crises around the world who are most affected by the outcome, Human Rights Watch and Ontario Chiefs said. Everyone is entitled to safe drinking water and sanitation. Canada has played an important role in promoting efforts to meet this goal globally. First Nations communities are working on the front lines to see that this obligation is met in Canada.

“Water is life,” said Ontario Regional Chief RoseAnne Archibald. “We recognize women as the sacred keepers of the water and know that it's a gift that connects all life. Water is significant to our way of life and livelihoods, and we recognize our inherent responsibilities as caretakers to protect water. Our responsibilities and our rights include all aspects of the use of water, jurisdiction and stewardship over use and access to water, and the protection of water.”

Posted: January 1, 1970, 12:00 am

Three girls play the game isolo on the ground in the lead-affected township of Waya in Kabwe. Soil is the main source of lead exposure in Kabwe.

© 2018 Zama Neff/Human Rights Watch

I met “David” and his brothers in the dusty township of Chowa in Kabwe. David, eight years old, is thin and small for his age. Sitting in their yard, his grandfather described his worries about David.

He has problems in school, finding it hard to retain information. He also has stomach aches and can’t see very well, possible lead poisoning symptoms.

A few years ago, David was found to have extremely high amounts of lead in his blood – high enough to warrant immediate treatment. But he never received any medical care.

Kabwe’s mine dates to the colonial period: a British company opened the lead mine in 1904. The South African company Anglo American took over in 1925 and remained in charge for nearly half a century.

Early on, doctors’ certificates revealed that lead smelter workers suffered health effects, but the company continued to mine, smelt, and poison the environment.

Zambia later nationalised the mine, then closed it in 1994. But there was no comprehensive clean-up.

And so, 25 years later, homes, schools, and play areas are contaminated with lead dust. Medical studies confirm that children living nearby have extremely high lead levels in their blood. Five micrograms of lead per decilitre (µg/dL) are considered elevated, and treatment is advised for severe lead poisoning cases of 45 µg/dL.

In Kabwe’s affected areas, about half the children have 45 µg/dL or more and need medical treatment. Lead can cause stunted growth, anaemia, learning difficulties, organ damage, coma, convulsions, and even death. Children are particularly vulnerable.

When Human Rights Watch visited Kabwe in 2018, public health facilities had no lead testing kits or medicine. Many residents said they felt fearful and helpless.

The Zambian government has recently begun the initial steps of a World Bank-funded programme to clean up neighbourhoods and provide health care for lead exposure in Kabwe. But the clean-up is so limited in scope that it risks being a failure. 
The government has trained a group of health workers, and procured medicine.  It says that 10, 000 children and pregnant women will soon be tested and treated, and that homes and 10 schools in areas near the mine will be cleaned up. These measures could bring some relief to David’s family.

But the road ahead is long. The programme to tackle lead pollution in Kabwe officially started in December 2016, nearly three years ago. It got off to a very slow start.

Many local residents and community leaders feel left in the dark and are sceptical that the situation will improve. The Zambian government is also haunted by the failures of a previous programme a decade ago. In the coming months, it will need to deliver.

The government also needs to do a better job of informing the local population. When I spoke to residents and community leaders in Kabwe’s lead-polluted areas in November 2018, they said they had no information about the World Bank-funded effort. It is encouraging that in recent weeks, the government has finally started to provide some.

The biggest problem may be that the government will not pave the dirt roads that spread the dust in affected areas, nor  clean up the source of the contamination, the former mine itself.

More than six million tons of mining waste are out in the open, and dust blows over nearby residential areas. The most visible is known as the “Black Mountain” – schoolboys go there to slide down the hill for fun, unaware of the risks.

The Ministry of Mines has issued mining licences for the former mine area, rather than conducting a proper land restoration effort. Ongoing small-scale mining poses serious health risks for workers and the community.

In addition, the South African company Jubilee Metals is planning to reprocess the waste to recover more minerals, such as lead, zinc, and vanadium.

Their plans need to undergo stringent government oversight to avoid further harm to people and the environment, including a requirement for a sound environmental and social impact assessment before starting operations.

Indeed, such a process will be a litmus test for the government’s self-declared goal of enhancing environmental governance and compliance.

For children like David and thousands of others, the neighbourhood clean-up needs to be lasting and comprehensive – which means that it needs to include the roads and the former mine.

To save children in Kabwe from further lead poisoning, the government needs to ramp up its efforts – and donors should provide additional support.

International Lead Poisoning Prevention Week, which starts on October 20, is an excellent moment to come together around this goal.

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

Summary

At that stage he couldn’t walk, only shuffle, he was very, very depressed, just crying all the time. And he couldn’t swallow… He would say, “My mind is a hell to me.” He wouldn’t be engaged in a conversation… All his symptoms are side effects of the antipsychotics, and they disappeared after he went off [them].

– Susan Ryan describing her father in 2013, June 2019

Susan Ryan was describing Ray, her 78-year-old father, when he was being chemically restrained in an aged care facility in 2013. Ray is one of approximately 450,000 people estimated to be living with some form of dementia in Australia. Dementia is a progressive, degenerative brain disease – associated with loss of memory and other cognitive abilities – that tends to occur in older age. Over half of the people living in aged care facilities have dementia. In Australia, staff at aged care facilities are giving older people with dementia drugs to control their behavior even though the drugs are not required to treat medical symptoms – a practice known as chemical restraint.

Restraining older people with drugs can have grave consequences. One woman described her grandmother, who in 2018 was living in an aged care facility in southern Queensland:

“Everything about her, her health, her spirit, declined after that drug. We went to see her after the meds, and she couldn’t hold a conversation, she was dropping off to sleep, [just] like that. She wouldn’t get up to go to the toilet until the last second because she was so tired.”

These and other relatives of older people living with dementia in aged care facilities described a dramatic deterioration in the conditions of their family members, including formerly energetic, talkative people who became lethargic and, in some cases, unable to speak. Many said that their relatives slept heavily, often for long periods, and could not be awakened without difficulty. They experienced serious weight loss, often because they were not able to stay awake long enough to eat.

Video

Video: Fit and Healthy After Getting Off Chemical Restraints

Ray Ekins, 78, has dementia and was prescribed olanzapine, an antipsychotic prohibited for use in older people with dementia. His daughter Susan asked his geriatrician about significant changes in his mood and behavior. He told her that her father was old, and she and Ray would just have to accept it. Susan moved Ray to a new facility in 2014 which helped to wean him off the drugs. 

Video

Video: Nursing Homes in Australia Routinely Sedate Older People

Monica has dementia and lives with her husband in a facility near Melbourne. Her son realized she was being given a cocktail of drugs when he asked to see her charts. After extensive negotiation, Monica’s doctor and facility staff agreed to wean her off the drugs. Monica went from being hunched and unbalanced to being able to sit, eat, greet people, and dance when her grandson visits and sings.

 Medications should only be given when they have a therapeutic value. Medication for the purposes of controlling behavior without a therapeutic purpose is chemical restraint. The long-term, continual use of this practice on older people with dementia in aged care facilities in Australia appears to be driven by a number of factors, including understaffing of aged care facilities and inadequate training in dementia support, leading to an inability to appropriately support the needs of people with dementia. For understaffed facilities, chemical restraint can make managing people with dementia easier, especially when staff lack adequate training in supporting people with dementia. “They don’t have enough staff or supervision so they knock them out,” the daughter of a woman with dementia told Human Rights Watch. In many facilities, inadequate staff and training make it almost impossible to take an individualized, comprehensive approach to supporting people with dementia. Many aged care facilities have staffing levels well below what experts consider the minimum needed to provide appropriate care.

This report is based on interviews with family members, doctors, nurses, and advocates, and documents the use of medications as chemical restraint in 35 aged care facilities in three states in Australia: Queensland, Victoria, and New South Wales. In all three states, Human Rights Watch research indicated that older people were restrained with sedatives and antipsychotic medications. The report is based on interviews with 89 individuals, including 37 family members of older persons who are living in aged care facilities or deceased (plus one older person living in an aged care facility), aged care facility staff, doctors, nurses, aged care experts and disability rights experts, advocacy organizations, and government officials between April 2018 and August 2019.

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© 2019 Human Rights Watch

Human Rights Watch documented the use of various drugs used in chemical restraint, including antipsychotic drugs, benzodiazepines, and sedative-hypnotic drugs, sometimes known as “tranquilizers,” “sleeping pills,” or “sedatives”; and opioid analgesics, also known as narcotic painkillers.

Clinical studies in the United States have found that antipsychotic drugs increase the risk of death in older people with dementia. Benzodiazepine use in older people is associated with increased risks of falls, pneumonia, and death. The government of Australia has not approved the use of many of these drugs in older people, citing these studies.

As best as Human Rights Watch can determine, staff in the aged care facilities where we conducted research did not seek or secure informed consent prior to giving these medications. Informed consent requires a decision based on a discussion of the purpose, risks, benefits, and alternatives to a medical intervention, as well as the absence of pressure or coercion in making the decision. Individuals receiving medication should only receive it after they have given their free and informed consent in accordance with international human rights standards.

In addition, family members who have powers of attorney (legal authority to act on another’s behalf) to make decisions on behalf of their relatives in aged care facilities told Human Rights Watch that facility staff did not seek their informed consent for the medications used as chemical restraints. Many relatives said they only learned that their relatives had been given medications after they received pharmacy bills listing the medications. For example, one woman described her shock and confusion after receiving a pharmacy bill listing an antipsychotic medication, among others, that staff were giving to her husband in an aged care facility in northern Queensland. She told Human Rights Watch that the facility had not discussed this with her, much less sought her informed consent, even though she holds power of attorney for her husband.

When families confronted facilities with requests for the removal of chemical restraints, they said they were met with intimidation and retaliation.

Chemical restraint is not a necessary or last-resort option. Clinical studies have shown that non-medical interventions focused on an individual’s unique qualities as a person and building and nurturing relationships are effective tools for addressing symptoms of dementia, including agitation and aggression. These symptoms can be distressing for the people who experience them, their families, and aged care facility staff.

Positive interventions include exercise, music, and redirection to a different activity. Human Rights Watch documented several cases in which family members described how relatives with dementia who were taken off medications used to restrain them regained much of their vitality, once again talking and interacting, and staying awake during the day. However, some relatives continued to experience the negative physical and cognitive impacts consistent with the effects of chemical restraints, such as the loss of muscle strength and the inability to swallow.

Australia’s existing legal and regulatory framework is inadequate to protect older people in aged care facilities from chemical restraint; it explicitly allows it. Until the introduction of a new regulation by the Commonwealth Minister for Senior Australians and Aged Care that came into effect on July 1, 2019, there was no regulation of chemical restraint in aged care at all. The regulation purports to minimize the use of physical and chemical restraint, but it does not because it does not prohibit chemical restraint, guarantee the right to informed consent, or provide for a complaint mechanism when a person has been chemically restrained.

Under international human rights law, governments are obligated to respect the inherent dignity of persons with disabilities, including older people, by acknowledging them as persons on an equal basis with others. This includes recognizing that they have the right to live independently in the community without being forced to live in an institution, and to have all their human rights protected if they choose to be in institutions such as aged care facilities. Governments should also prevent discrimination and abuse against people with disabilities and remove barriers that prevent their full inclusion in society.

Australia’s Aged Care Quality and Safety Commission, the agency that regulates aged care and handles complaints about aged care, closed 5,738 complaints in the fiscal year ending June 30, 2018. Seventy-five percent of the complaints were about residential aged care; the remainder came from other areas it oversees, such as home care. Those whom Human Rights Watch interviewed who had attempted to use the system in 2016, 2017, and 2018 did not find it to be an effective mechanism to challenge facilities’ use of chemical restraints on their family members.

The provision of any medication without informed consent violates the right to informed consent to medical treatment and interventions and the right to the highest attainable standard of health. It violates human dignity, bodily integrity, and equality. The use of drugs as a chemical restraint could constitute cruel, inhuman, and degrading treatment under international law.

Appropriate support for people living with dementia will require legislative and regulatory change and enforcement by prohibiting chemical restraint as well as increasing numbers of trained staff, particularly as the older population of Australia continues to increase. Inaction is not an option. The consequences of inadequate legal and regulatory frameworks to prevent chemical restraint are needless suffering, increased disability, and even death.

The Australian government should end the use of chemical restraints as a means of controlling the behavior of older people in aged care. The government should develop support and interventions, including person-centered care, for persons experiencing agitation, emotional distress, or challenging behaviors in aged care facilities. Any new law should also ensure informed consent for all treatment and ensure independent monitoring and effective, accessible, independent complaint mechanisms, including for individuals in aged care facilities and their families. 

Key Recommendation

Parliament should enact legislation to prohibit the use of chemical restraints as means of controlling the behavior of older people with dementia or for the convenience of facility staff. The legislation should include:

  • Mandatory training for all aged care facility staff in dementia and alternative methods and skills to de-escalate unwanted behavior and support the needs of people with dementia;
  • Adequate minimum staffing levels to provide support to older people; and
  • Adequate enforcement mechanisms to protect older people’s rights.

Methodology

This report is based on Human Rights Watch interviews with 89 people conducted between April 2018 and August 2019 in the Australian Capital Territory; in and around the cities of Brisbane and Cairns in Queensland; in and around Melbourne, Victoria; and in and around Sydney in New South Wales. The three states were selected based on their high populations of older people and number of aged care facilities. Human Rights Watch conducted additional phone interviews from January 2019 through August 2019.

This report focuses on the human cost of Australian aged care facilities’ use of non-medically required drugs to control the behavior of older people with dementia. Many older people in aged care facilities are at risk of this abuse.

Our research documented the accounts of family members who observed older people with dementia under chemical restraint in aged care facilities. We interviewed them about what changes they saw, what they learned about their family member’s drug intake, and whether they raised any concerns with facility staff or the government complaints agency. Some of the people interviewed requested anonymity. All instances where pseudonyms have been used are referenced in the footnotes. In some cases we have withheld additional identifying information to protect a person’s identity.

We found interviewees through Australian state aged care advocacy organizations, dementia advocacy organizations and advocates, and referrals from people we interviewed. In most cases, relatives of people in aged care had contacted organizations for advice, legal representation, or other support. Those organizations then facilitated introductions.

For this reason, the families of older people interviewed for this report cannot be said to reflect the most isolated and at-risk people in aged care facilities: people who are on their own, without family or friends visiting or communicating with the facility staff, and who have disabilities that impair their ability to communicate or advocate on their own behalf.

We interviewed 37 relatives of older people aged 59 to 103 years. We interviewed one older person who has dementia and experienced chemical restraint. We did not conduct interviews with other older people who had experienced chemical restraint. Some people had passed away by the time of our interview with a family member, some had been taken off chemical restraints, and some were still being restrained.

We interviewed people in the locations they indicated as most comfortable to them: in their homes, at advocacy organization offices, and in cafes or other public locations. We conducted three interviews in aged care facilities with relatives of a person with dementia, with the person who has dementia present. We conducted one interview with a person with dementia in an aged care facility. We conducted interviews in private so that individuals could speak without fear of potential retaliation from aged care facility staff or relatives.

Human Rights Watch obtained the informed consent of each interviewee; explained the aim of the research; how information collected would be used; and informed them that they could discontinue the interview at any time and could decline to answer questions without consequence. Human Rights Watch provided no personal service or benefit and told interviewees that their participation was voluntary, and their identities would be kept confidential where requested.

We interviewed 36 experts, including three doctors, two facility managers, one director of nursing, four professional advocates, two nurses, one physiotherapist, and one pharmacist. We also interviewed lawyers, academic researchers, professors, and representatives from advocacy and interest groups.

In order to obtain the perspectives of aged care facilities, Human Rights Watch sent letters requesting to meet with facility managers at 21 facilities chosen at random in Queensland, New South Wales, and Victoria. We received two responses: one declined, the other accepted. We interviewed one other facility administrator, as well as other staff members speaking in their personal capacity, not for their institution. We did not seek interviews with facilities where family members told us their relatives were facing chemical restraint to avoid any risk of reprisals.

Human Rights Watch shared some of the key findings of this report with Leading Age Services Australia, a trade association for aged care providers; Aged and Community Services Australia, a trade association for non-profit aged care providers; and the Aged Care Guild, requesting their perspectives. Leading Age Services Australia and Aged and Community Services Australia responded, and we met with Aged and Community Services Australia.

We also met with 15 government officials including from the Department of Health, Office of the Public Advocate for Victoria, the Australian Human Rights Commission, the Queensland Public Guardian, and the Department of the Prime Minister and Cabinet. We met with advisors to the Minister for Aged Care and the Attorney General.  We wrote a letter requesting a response from the Department of Health. The department’s response is reflected in relevant sections of this report and is also included in Annex I. We requested a meeting and wrote a letter requesting a response from the Aged Care Quality and Safety Commission, the primary agency responsible for monitoring aged care in Australia, in respect of this report’s findings, but had not heard back at time of writing.

Responses received are reflected in the report.  Our letters and correspondence are included in the annex.

I. Background

Overview of Aged Care in Australia

Australians aged 65 and over make up about 15 percent of the total population of Australia. By 2057, it is projected they will make up 22 percent of the population.[1]

Australia’s Aged Care Act 1997 defines residential aged care as: personal care or nursing care, or both personal care and nursing care, that is provided to a person in a residential facility in which the person resides, including appropriate staffing to meet the nursing and personal care needs of the person; meals and cleaning services; and furnishings, furniture and equipment for the provision of that care and accommodation.[2]

Care is generally provided by personal carers, enrolled nurses, and registered nurses.[3] There is no federal legislative requirement for aged care facilities to have on-site nurses 24 hours per day.[4] The number and type of staffing is not regulated in aged care facilities in Australia.[5] Such ratios of support are regulated for other settings, such as childcare settings and hospitals.[6] There is no national minimum standardized training requirement for aged care personal carers, including on dementia care.[7]

As of June 30, 2018, there were 2,695 residential aged care facilities in Australia, with capacity for 207,100 people.[8] More than half of the people living in aged care facilities in Australia have dementia.[9] New South Wales has 882 aged care facilities, Victoria has 760, and Queensland, 456.[10] About 45 percent of these facilities are for-profit, 40 percent are religious and charitable organizations, 13 percent are community-based organizations, and about three percent are run by state, territorial, and local governments.[11]

Aged care in facilities is paid for by both the Australian government and by contributions from the residents. The government pays “subsidies and supplements” to approved providers for each resident receiving care under the Aged Care Act, based on an assessment of residents’ support needs.[12] Most residents will pay at least a basic fee every two weeks of AU$576 (US$393), plus, in some cases, additional contributions based on income and assets.[13] For the fiscal year 2017-18, government contributions averaged AU$65,600 (US$44,784) per permanent facility resident (as opposed to short-term residents).[14]

The total government expenditure on aged care in fiscal year 2017-2018 was AU$18.6 billion (US$12.7 billion), according to the Aged Care Financing Authority, an independent agency providing independent advice to the Australian government on the sustainability of the aged care sector.[15] Of this, 66 percent went to residential care; 12 percent to home care; 17 percent to home support; and 2.7 percent to flexible aged care, such as therapy after hospital stays, rural health, and aged care support and short-term programs.[16]

Older People “Prefer to Live at Home”

In 2015, the Australian government’s Productivity Commission, which provides research and advice on issues affecting the welfare of Australians, published a research paper analyzing housing decisions of older people.[17] The data revealed that older people prefer to “age in place,” meaning remain at home in their local community.[18] Most older Australians live in private residences (their own homes), and about 80 percent own their homes.[19] The research also revealed that “the majority of older people are satisfied with their dwellings.”[20]

The Commission recommends that the government provide greater support for people to remain in their homes and receive necessary support and care there because older people have expressed this preference. The Commission also notes that this policy may align with the government’s fiscal sustainability objectives to rein in spending, according to the report: “Although the care needs are typically higher for residential aged care, ultimately delivering home care requires much less public funding.”[21] The government has announced increased funding for services to enable older people to continue to live independently in their own homes.[22]

Dementia

Globally, in 2017, nearly 50 million people were estimated to be living with dementia.[23] Alzheimer’s disease is the most common cause of dementia contributing to an estimated 60 to 70 percent of all dementia.[24] In Australia, 447,115 people are estimated to be living with some form of dementia.[25]

Dementia is “the loss of cognitive functioning—thinking, remembering, and reasoning—

and behavioral abilities to such an extent that it interferes with a person's daily life and activities.”[26] It may change functioning of memory, language, attention, emotion and self-management, among other things. [27]

Dementia-related symptoms may result from changes in the body’s nervous system associated with dementia or from an external or underlying situation such as pain or personal needs.[28] Dementia is often accompanied by irritability, agitation, aggression, hallucinations, delusions, wandering, disinhibition, anxiety, and depression.[29] These symptoms may be a response to unmet physical needs like being hungry, thirsty, or cold, or to “environmental triggers,” such as being ignored. Alternatively, symptoms may be “consequences of a mismatch between the environment and patients’ abilities to process and act upon cues, expectations and demands.”[30] They can be distressing for the people who experience them, their families, and aged care facility staff.

Person-Centered Care

Research has found that person-centered care, focused on an individual’s unique qualities as a person and building and nurturing relationships between the individual and others, is an effective non-pharmacological intervention for improving symptoms of dementia, including agitation and aggression.[31] Non-pharmacological interventions can include physical exercise, music therapy, massage, redirection, and others. Several studies have confirmed the positive results of music therapy.[32] Other non-pharmacological interventions includes reducing boredom, pain, loneliness, and similar experiences by changing a person’s activities, surroundings, opportunities, and access to relationships; creating individualized sleep, hygiene, bathroom, and other daily routines that the person prefers; or ensuring staff are consistent and familiar with the individual.[33]

Studies from the United States have found that people with dementia treated with person-centered care interventions demonstrated signs of improved quality of life, decreased agitation and other “challenging behaviors,” improved sleep patterns, and maintenance of self-esteem.[34]

The World Health Organization (WHO) has found that aggressiveness and unwanted behavior can often arise when individuals are constrained by the inherently rigid nature of a facility that does not give adequate attention to an individual’s will and requirements.[35] The WHO is designing programs to train facility staff to prevent situations that can escalate into aggressiveness, violence, and behavior that could result in self-harm. One key element is creating an institutional environment that recognizes individual needs and requirements and provides services in a timely and dignified manner. Other alternatives are designing individualized plans to understand and recognize triggers, early warnings, and tense situations.[36] The Australian government does not currently require these practices.

Chemical Restraint

Chemical restraint is defined in Australia’s 2019 regulation on minimizing restraints as “a restraint that is, or that involves, the use of medication or a chemical substance for the purpose of influencing a person’s behaviour, other than medication prescribed for the treatment of, or to enable treatment of, a diagnosed mental disorder [mental health condition], a physical illness or a physical condition.”[37] The WHO defines it similarly: “medication which is not part of the person’s treatment regimen and is used to restrict the freedom of a person’s movement and/or control their behaviour.”[38] Some countries such as the United States have prohibited chemical restraint in aged care facilities.[39]

Recognition of the Problem of Chemical Restraint in Aged Care

Over the years, policy and legal experts in Australia have criticized the use of chemical restraint in aged care facilities. High-profile cases have helped spark public awareness about the dangers of over-medicating people with dementia. Bob Spriggs, 66, died in February 2016 from an overdose of an atypical antipsychotic drug at an aged care facility in Oakden, South Australia. He had dementia and Parkinson’s disease. [40] In 2017, a government regulatory review found that, “While the situation at Oakden is far from typical, the circumstances that led to it are certainly not unique.”[41] In September 2018, a widely watched television news program, 4 Corners, investigated a range of serious abuses in aged care facilities across Australia, including chemical restraint.[42]

Medical and legal experts have also raised the issue of chemical restraint and the lack of effective regulation. The Australian Society for Geriatric Medicine noted in 2005: 

The problem of … drug use is a very serious and significant one in residential care facilities… The answer to behavioural problems in patients with dementia, for example, is not to give them antipsychotic medications but to put in place [sic] appropriate behavioural and environmental strategies.[43]

In February 2019, the acting state coroner in Victoria published his findings in relation to the death of Margaret Barton in an aged care facility at the age of 83. The coroner found “there is sufficient correlation between Mrs. Barton’s multiple falls and the Oxazepam, to conclude that the medication regime contributed to her physical decline and death.”[44]

And the Australian Law Reform Commission noted in its 2017 report on elder abuse that “the use of restrictive practices…can deprive people of their liberty and dignity—basic legal and human rights.”[45] The Australian government’s Review of National Aged Care Quality Regulatory Processes in 2017, noted that in aged care facilities, “There are pressures on all sides that promote antipsychotics as a ‘quick fix,’ and once commenced, a ‘set and forget’ mentality can result.”[46] It also found that, “The standards [for aged care facility accreditation] do not [regulate] adequately in the area of restrictive practices.”[47] In 2017, the Queensland Office of the Public Advocate concluded that: “[T]he Aged Care Act does not currently act as an effective mechanism for reducing or regulating restrictive practices in the aged care sector.”[48] 

Medicines as Chemical Restraints

Different drugs can be used as chemical restraints. These include antipsychotics, sometimes known as neuroleptics, used to treat symptoms of delusions and hallucinations; or, benzodiazepines and sedative-hypnotic drugs, sometimes known as “tranquilizers,” “sleeping pills,” or “sedatives”; and others, like opioid analgesics, known as narcotic painkillers. Benzodiazepine use in older people is associated with increased risks of falls, pneumonia, and death.[49] Australia’s government subsidizes the cost of these medications.[50] 

Scientific studies have also documented the use of these drugs in aged care facilities in the country. A May 2018 study of 12,157 residents in 150 aged care facilities in Australia found that 22 percent were taking antipsychotics every day.[51] A 2010 study of aged care residents in 40 aged care homes throughout Tasmania found that 21 percent of residents were taking antipsychotics, and 43 percent were taking anti-anxiety or hypnotic medicines (commonly referred to as “sleeping pills”).[52] Other studies have estimated even higher rates of use in some parts of Australia, including a finding of 57,130 prescriptions of antipsychotics prescribed for every 100,000 people over 65 years of age in Yarra, Victoria in 2013-14.[53]

Antipsychotic Medications

Antipsychotics increase the risk of death in older people with dementia, according to at least 17 placebo-controlled clinical studies of the drugs, mostly conducted in the US.[54] The causes of death varied, but most were related to heart failure or infections like pneumonia.[55]

Aside from raising the risk of death, the side effects of antipsychotics can include severe nervous system problems, neuroleptic malignant syndrome (a life-threatening reaction associated with severe muscular rigidity, fever, and altered mental status); tardive dyskinesia (characterized by stiff, jerking movements that may be permanent once they start and whose likelihood of onset increases the longer antipsychotic drugs are taken); high blood sugar and diabetes; and low blood pressure, which causes dizziness and fainting.[56] Other side effects can include increased mortality, cerebrovascular events (stroke), cardiovascular effects, blood clots, central and autonomic nervous system problems, visual disturbances, metabolic effects, fall risk and hip fracture, irreversible cognitive decompensation, and pneumonia.[57]

One of the most widely used drugs for controlling the behavior of people with dementia in Australia is the antipsychotic drug risperidone.[58] According to the Department of Health’s Therapeutic Goods Administration’s website, risperidone is allowed in older people with moderate to severe Alzheimer’s dementia for psychotic symptoms, or persistent agitation or aggression unresponsive to non-pharmacological approaches for up to 12 weeks.[59]

In an October 2019 letter to Human Rights Watch, the Department of Health also specified that “Australian guidelines acknowledge that non-pharmacological therapies are the first line treatment for behavioural and psychological disturbances in patients with dementia. However, if pharmacological therapy is required to control hallucinations, delusions or seriously disturbed behaviour, risperidone is considered first line therapy” (emphasis added).[60]

The product information for risperidone, posted on the Australian government’s Therapeutic Goods Administration’s website, notes that its use in older people with dementia increases their risk of death and stroke.[61] Other drugs of the same class of atypical antipsychotic drugs have this same language, but include an additional statement such as: “[This atypical antipsychotic] is not approved for the treatment of patients with dementia-related psychosis.”[62] Risperidone does not carry this statement in Australia. It does carry a black box warning in the United States, meaning that manufacturers must

include on conventional and atypical antipsychotic drug labels, including risperidone, that older patients with “dementia-related psychosis” treated with antipsychotic drugs are at an increased risk of death.[63]

Product Information on the Australian Government’s Department of

Therapeutic Goods Administration Website

 

Drug Name

Class

Product Information, including information on studies finding increased risk of death for use in older people with dementia

Approved for Use in Older People with Dementia

Olanzapine

Atypical antipsychotic

Yes[64]

No[65]

Risperidone and similar drugs

Atypical antipsychotic

Yes[66]

Yes, for short-term (<12 week) use for people with Alzheimer’s[67]

Quetiapine

and similar drugs

Atypical antipsychotic

Yes[68]

No[69]

 

II. Use of Chemical Restraint in Aged Care Facilities

Through interviews with family members of people living or having lived in aged care facilities in Australia, Human Rights Watch documented the use of antipsychotic drugs and sedatives as chemical restraint on older people with dementia. The medicines were administered over long periods apparently to control and subdue people rather than ensure their well-being. Medicines were prescribed often at the request of nurses to doctors who were not physically present to evaluate the patients. Medicines were also often prescribed and administered without the informed consent of the individual or family members holding medical powers of attorney to make medical decisions on behalf of their loved ones. The practice of chemical restraint appears linked to both understaffing and a lack of staff trained in non-pharmacological, supportive interventions for people with dementia, as well as the absence of clear legal restrictions on this practice in Australian law.

The medicines being given to older people with dementia have been recognized by the Australian government’s Therapeutic Goods Authority as having serious risks of increased disability and death for older patients with dementia (see chart in Section I ). The potential for harm and lack of medical benefit for older people living in aged care facilities combined with the apparent intent of giving these medicines to control behaviors – without attempts to implement non-pharmacological interventions, indicates that this practice is chemical restraint.

We documented how aged care facility staff administered antipsychotic drugs, sedatives, opioids, and other drugs to residents. People were most commonly given the antipsychotic risperidone, often in combination with other drugs including, oxazepam, a sedative, and quetiapine, another antipsychotic.

Australian prescribing guidelines allow the use of risperidone in older people with Alzheimer’s after other interventions have been exhausted and only for 12 weeks.[70] We documented how aged care facility staff gave residents risperidone for periods beyond 12 weeks, in some cases for years. We also documented how staff gave older people antipsychotic medications that are approved for schizophrenia but are not approved for use in older people with dementia, such as olanzapine, also for weeks or months. None of the people who received these antipsychotic medications had a diagnosis of schizophrenia.

In all cases documented by Human Rights Watch in which relatives discussed the effects of the drugs with facility staff, interviewees told us how doctors or facility staff specified that the medication was given to control residents’ behavior.  Staff reported to families that they did this in response to behavior such as wandering or trying to leave. Some people we interviewed said that staff chemically restrained their relatives for reportedly doing things such as moving around in their bed at night or having verbal outbursts.

This report documents the use of chemical restraints in situations where personal support was not provided to individuals to help manage their behavior over time. Staff gave older people with dementia these medications over periods of weeks, months, and years. Those interviewed did not include individuals with complaints about single uses of these drugs during crises or emergencies.

Interviewees described how formerly energetic, talkative people became lethargic and, in some cases, unable to speak, during the period that the drugs were administered. Many reported that their relatives slept heavily, often for long periods, and could not be awakened without difficulty. They experienced serious weight loss and dehydration, often because they were not able to stay awake long enough to eat or drink. Many became so weak from not using their muscles that they lost mobility. They often lost the ability to perform self-care tasks such as using the bathroom or showering.

According to family members, in no cases that we documented had staff secured the informed consent of individuals’ chosen person holding powers of attorney. In some cases, families learned that their relatives had been given antipsychotic or other medications only when they received the pharmacy bill. The CRPD Committee, the body of independent experts that monitors states’ compliance with the UN Convention on the Rights of Persons with Disabilities, has held that any treatment of an adult with medications without consent is a violation of the right to equal recognition before the law and an infringement of the right to personal integrity; freedom from torture and inhuman and degrading treatment; and freedom from violent exploitation and abuse.[71]

Some family members also told Human Rights Watch that they were able to have their older relatives go off the medicines that were restraining them by removing them from the facility, by caring for them at home with out-of-pocket support, or by hiring private staff in a facility, and that, with support, they were again able to enjoy things like being with loved ones, going for an outing, and listening to music.

Excessive Lethargy and Sleep

Lethargy and excessive sleep are some of the most significant effects of chemical restraints and which impact all other aspects of an individual’s life. “Glynnis,” 84, moved into an aged care facility on the Gold Coast in Queensland in 2017. She had dementia. About a year into her stay, Glynnis left the facility one morning and walked nine kilometers to her daughter’s house. After that, the facility told her family that it would give her medication to control her wandering but did not specify which drug or explain potential risks. Her granddaughter Katie told us that her family found out that the facility staff were giving Glynnis the antipsychotics after she took a photo of a chart left by a nurse in her grandmother’s room. Katie explained her grandmother’s condition after the medications started:

Everything about her, her health, her spirit, declined after that drug. We went to see her after the meds, and she couldn’t hold a conversation, she was dropping off to sleep, [just] like that. She wouldn’t get up to go to the toilet until the last second because she was so tired. She was having trouble getting out of the chairs, when she had no trouble before … She wasn’t moving at all. She had to be showered [by staff] … She was falling asleep sitting up. Having trouble getting up. Her eyes would roll back in her head.[72]

Together with an advocate from ADA Australia, an older person’s rights organization, Glynnis’s family met with the facility management and asked that they stop the medication. The facility refused. Katie said, “The more I pushed for no medications [as restraints], the more they resisted.”[73]

“Linda,” 59, has dementia and lives in an aged care facility in Melbourne, Victoria. Her daughter, “Jessica,” who has her mother’s power of attorney together with her siblings, told Human Rights Watch that in late 2018, Linda started walking restlessly around the facility and, in response, the staff gave her antipsychotic drugs that she had been prescribed PRN, pro re nata, meaning on an “as-needed” basis, determined by the staff, in addition to regular doses of medications. Jessica said staff had not informed her about the additional medications. She started to ask questions when she noticed her mother was going to sleep by 10 p.m., not waking until 11 a.m., and then falling asleep again at noon:

Two weeks ago, I found out she was getting oxazepam [a sedative] PRN almost every night. A nurse told me she was starting to get concerned [my mother] is [already] getting [a] 9 p.m. [dose of another sedative] every night.

So, I stayed and watched until 11 p.m. She was waking at 10:30 p.m. and moving around the bed, setting off the sensor.

I talked with the nurse, and his exact words were, “But I have to give her medication to keep her in bed.” I asked, “Could you give her a walk for 10 minutes?” He says, “At night, there are only two staff members on, I can’t give her a walk.”[74]

In 2018, staff at an aged care facility in Queensland reported to “Lisa” that her father, “Gene,” 85, had hit a nurse and would need to be placed “on tablets” to control him.[75] A general practitioner (GP) in the facility put him on three daily doses of antipsychotic drugs. Lisa found her father sleeping at all hours of the day. Staff reported to her that he fell asleep in the shower. She found a new GP who took him off the drugs, but Gene experienced lasting physical damage, as described below.[76]

Raylene Liddicoat, director of Simply Chronic Care, a nursing consultancy working in aged care facilities, told Human Rights Watch about an older woman in the facility where she worked who was “on medication to keep her in bed… She’d started to fall out of bed because she didn’t want to be alone in her room. So they wanted to sedate her. I said to the staff that we’ll get her up for her meals… This lady wants to be interactive with the community, not in bed.”[77]

Significant Weight Loss and Dehydration

Human Rights Watch documented several cases in which older people with dementia lost significant weight in aged care facilities while receiving medication used to restrain them.

For example, Michal Brown, a nurse, cared at home for her father, Lafras, who had Alzheimer’s disease. She has his power of attorney for his medical affairs. On April 11, 2017, she placed him in an aged care facility’s short-term respite program so that she could take a business trip. Brown came back from her trip three weeks later to find her father dramatically changed. “When I arrived, he was totally unresponsive – eyes closed, mouth open, pants half down, lying in a pool of urine,” she said. He had also lost significant weight. She complained in writing to the facility:

The shocking and marked difference in my father’s appearance of the man I brought in on 11 April to the man I saw on 1 May… His weight was 67 kilograms on entering the unit.  I have finally been able to weigh him tonight, 3 [May] and he is weighing in at 58 kilograms! ... This weight was taken after having dad home for three days, of feeding my dad regular healthy meals. I would have like to have known his true weight on his return home on 1 May but due to his condition I have been unable to weigh him.[78]

Side-by-side photos of Lafras, 83, the week he went into a 20-day stay at an aged care facility in Queensland, and the week he returned home, having lost 20 pounds, April and May 2017.

© 2017 Private

A medication chart she later obtained appeared to be consistent with Lafras being given 0.5mg of the antipsychotic risperidone daily, double the amount she had given permission for, and half of a 15mg tablet of the sedative oxazepam initially, but later two full 15mg tablets per day. In her notes for the facility, it indicated that he could receive one oxazepam tablet if he became anxious but made clear that he should not be given it frequently, as he would sleep excessively for most of the next day.[79]

“Dean,” 75, has dementia and lives in an aged care facility in Northern Queensland. His wife, “Mae,” brings him breakfast and dinner each day, prompting him to eat each bite. She told Human Rights Watch that he cannot eat independently due to the medications he is on used to chemically restrain him for “behavior,” and staff do not take time to ensure he gets enough to eat.

Mae, who has her husband’s power of attorney, said her husband lost over 20 kilograms in his first five months at the aged care facility in 2017:

He was just sleeping when I was visiting before work and after work. I said he shouldn’t be on meds. I didn’t see him for two weeks because of a scabies outbreak [in the facility]. He lost two kilos. It’s a kilo a week if I don’t turn up with my meals.[80]

“Katie” told Human Rights Watch about her grandmother “Glynnis’s” serious weight loss and dehydration over about 18 months in 2017 and 2018 while she was on medication to restrain her in an aged care facility on the Gold Coast:

The weight loss started when she went on the drugs. She became gaunt. I was buying clothes for her, and she was always around a size 18. Then I had to buy size 12. I had to buy smaller bras for her. From an 18D down to a 14B. Every afternoon after work, I was going to feed her, and she was so dehydrated. They weren’t feeding her.

In October 2018 … they told us to say our goodbyes. So, I got my nurse friend to visit, and she gave [my grandmother] heaps of water, and then she could sit up. The nurse friend said she was dehydrated… She was skin and bone… Her collarbone was so far out. She hadn’t eaten or drunk for days.[81]

Glynnis recovered from the apparent dehydration but passed away two months later.

A geriatrician and neuropsychiatrist with more than 30 years’ experience working with people with dementia and other disabilities in Australia told Human Rights Watch of the negative impacts of chemical restraints:

I see [antipsychotic drugs] having a great impact on [older people’s] quality of life and physical health. And there usually isn’t a diagnosis to support these, so they are used as a chemical restraint, really.

The consequences are that we see otherwise healthy people develop horrible metabolic problems, diabetes, heart problems, stroke as a result of being on these psychotic medications. It’s all too common in the population I see of people with neurological disabilities [like dementia].

It’s a reflection of the fact that they have complex disabilities and the practitioners lack the expertise. It’s a question of making the right diagnosis and offering the right treatment, not just treatment to keep people’s behavior in line.[82]

Louis Fenech, 68, has dementia and lives in an aged care facility in southern Queensland. He experienced muscle spasms in his neck while he was on antipsychotic drugs as chemical restraints, March 2018.

© 2018 Private

Physical Effects

Louis, 68, has dementia, and his wife, Denise Fenech, holds his power of attorney. Fenech described how staff at the facility where he lives gave him drugs they said were to control his behavior:

They said he grabbed staff and held someone against a wall… He threw a soup spoon… They called a psychiatrist in… In March 2018, I was told, not consulted, that they had started him [on new drugs]. They introduced drugs for agitation, and anxiety… When on the drugs, he immediately went into a neck spasm. [His head was] forced down onto his chest, causing headaches. It was hard to eat and drink. The physio[therapist] was concerned about a drug interaction…They said they stopped giving the drug to him, and it took several months of physio[therapy], a very gradual return.[83]

 

Facilities’ Easy Access to Chemical Restraints

Registered nurses working in aged care homes, doctors, and pharmaceutical experts told Human Rights Watch that under current regulations in Australia, aged care facility staff may easily obtain the medications used in chemical restraint of older people. Facility staff can obtain a prescription for the medications used in chemical restraint, including antipsychotics, sedatives, and opioids, with a phone call at any time, day or night. Doctors can prescribe them without making an examination or even seeing the individual receiving the medications.

Raylene Liddicoat told Human Rights Watch about an illustrative experience while consulting at a facility, explaining how a staff member started her shift: “She hadn’t received handover, walked in, demanded the keys to the [medicines] cupboard, because she could see a lady escalated [agitated]. [She said,] “I’m not starting my shift because I know what she’s going to be like if I don’t give her her [diazepam] now.”[84]

Nurses or nursing assistants at facilities can ask that the prescription be issued with a PRN dosage. A PRN prescription means that the very people who are responsible for providing support to older people are the ones who can decide to give the person drugs instead of providing that support. As noted above, Human Rights Watch documented how older people in aged care facilities routinely received PRN medications.

Pamela, who has Alzheimer’s, was 72 in 2016 when staff at the aged care facility where she lived gave her risperidone PRN without the knowledge or informed consent of her daughter, who held her mother’s powers of attorney. Her daughter described an incident in which staff gave Pamela double the doctor’s prescribed maximum dose, which caused symptoms consistent with akathisia, “a state of agitation, distress, and restlessness that is an occasional side-effect of antipsychotic and antidepressant drugs.”[85] Pamela’s daughter described:

Mum is given risperidone, unconsented [without informed consent]. We knew nothing about it. To me, that was the attitude of the place. The following week I noticed a change, she was a little more lethargic. The following Friday I arrived to find her distressed in hallway, still in nightwear, her 1 p.m. lunch untouched. 

By 9 p.m. that night, [the facility called me] to say that she’s so highly agitated, we are worried about staff safety, and have called an ambulance. She has feces all over her. She doesn’t want to lie in a bed. They go to strap her down. I said, “Don’t you dare.” They say, “Your mum’s on risperidone; we’ve given her two doses.”

They’ve [given her] four doses [of risperidone] in less than 24 hours. We didn’t know she was on it.[86]

Dr. Harry McConnell, a neuropsychiatrist and geriatrician with over 30 years of experience in aged care in Australia described seeing his patients with akathisia linked to antipsychotic drugs:

It’s an inner restlessness, to which an older person is particularly susceptible. When someone prescribes, they think they’re helping, but they cause the problem. Nothing will settle you down when you have [akathisia]. When you have language problems and cognitive problems it will make it very hard to express what’s going on. It manifests as anxiety and aggression.[87]

Raylene Liddicoat, director of Simply Chronic Care, a nursing consultancy working in aged care facilities, has been a nurse for 30 years, and in management and senior leadership roles in aged care facilities since 2008. She criticized the ease with which aged care facility staff can obtain PRN prescriptions for medications to manage residents’ behavior. She explained the process based on her long experience: “If a nurse writes the note saying the person was upset, that GP’s going to say, ‘Yes, I’ll put them on a PRN.’ I don’t like PRN medications as psychotropics. It’s probably helping the helper more than the resident.”[88]

Veronica, a practicing registered nurse (RN) in New South Wales who has worked in aged care for 20 years, told Human Rights Watch that often due to the lack of staffing and training, facility staff resort to medication when residents experience challenging behavior and that medications are easy to obtain. She said, “Nurses will ask for increases in medication because the only thing she has in her back pocket is pain meds… In aged care, you can reach a doctor over the phone for medications, with someone interpreting the patient for the doctor. The doctor may never see the person.”[89]

Veronica also noted that this does not have to be the practice. “In this facility, we don’t have anyone on PRNs,” she said. “There is more abuse with that. Medication is just not the answer. We need symptom management. [Facilities] don’t always have enough staff to support everyone.”[90] 

Dr. McConnell, the geriatrician and neuropsychiatrist, explained the significant risks with PRNs:

There’s a huge problem with the PRN’s. I don’t really like using them… I don’t like using benzodiazepines [sedatives] and antipsychotic drugs as PRNs. [Often], you’ll see [a patient with] a regular dose, and then additional PRN’s of a similar medication. In a 24-hour period people can get quite a lot of medication that wasn’t intended. The effects of that are that person being over-sedated.[91]

Juanita Breen, a pharmacist and professor, told Human Rights Watch that her research on chemical restraints in aged care shows significant PRN use: “There is a lot of PRN use. It’s totally inappropriate, because usually the nurse decides when it’s being given, and may not refer to when it was [last] given, resulting in overdosing [too much medicine].”[92]

Facilities’ Responses to Complaints

Family members of people in aged care facilities described the difficulties they faced when raising concerns and complaints about chemical restraints with facility doctors, managers, and other staff. They talked about aged care administrators intimidating and attempting to force facility residents out. Other tactics included facility administrators applying to state guardianship bodies to remove persons with powers of attorney chosen by residents.

For example, Gene, 85, had dementia, and lived in a facility for one and a half years without being restrained. In January 2018, the facility told his daughter, Lisa, that he hit a nurse, and “needed tablets.” Lisa, who held powers of attorney for her father, said that the doctor and facility staff refused to acknowledge and address her concerns with his excessive sleeping, as detailed above, and instead pressured her to remove her father from the facility. At the meeting she requested with the doctor, she was shocked to find six other people at the meeting, beside the doctor: the lifestyle manager, duty manager, registered nurse, manager, assistant manager, and clinical nurse manager. She said: 

I was alone in the meeting. They were intimidating. They were saying that if I didn’t allow for this [he could move out]. The doctor said: “Oh, there’s another [aged care facility] that would take him that is more culturally appropriate.” (My father speaks Italian.) They suggested a far [away] home. I said it was too far. The doctor said “Well, you don’t have to walk there.”[93]

In another case, “Chloe” talked about reprisals from the staff when she filed a formal complaint about medication use for her mother, “Judy,” 91, whom Chloe had found unresponsive in her dementia unit’s lounge in November 2018.  Chloe told Human Rights Watch:

I made an incident report, with their form. I used the form from the intake packet. After that, I told the GP working [at the aged care facility I didn’t want her restrained on drugs]. The doctor said she couldn’t [stop] it, but she could halve it. She said she needed a wean.

After this, the nurses gave me a hard time. Two nurses approached me to say [my mother] was aggressive and needed more medications… [But I saw that] she hasn’t had an aggressive episode since halving the drugs. She still walks quite well and sweeps her floor there… She was worse on the medications, but they wouldn’t admit it.[94]

Chloe also called the Mental Health Commission in Queensland in January 2019, regarding chemical restraint of her mother. The commission referred her to ADA Australia for advocacy support with the facility and a few months later visited the facility and investigated. At a meeting with the facility staff shortly after the investigation, a nurse told Chloe to “get the commissioner off our backs.” At the time of the interview with Human Rights Watch, Chloe had not been given any information about the outcome of the investigation.[95]  Judy is still living in this facility.

Mark Viney told Human Rights Watch about the response of the facility in Queensland where his father lived after Viney made two formal complaints to the Aged Care Complaints Commission in 2017 about chemical restraint of his father:

The general manager at the next meeting… started making out I was making it impossible for them to do their jobs. The regional manager said I’m being unreasonable, asking for carers to do more things…

I put in a complaint to the federal government body… The facility swore in an affidavit that they weren’t trying to get rid of dad.

In January 2018, ADA [Aged and Disability Advocacy Australia] came to help…  ADA Australia told me that the facility had contacted the Adult Guardian of Queensland to try to have me removed as my father’s guardian. I actually never saw anything; ADA Australia told me. [Fortunately] their submission didn’t go anywhere.[96]

Staff in aged care facilities described different approaches to staff complaints. One facility manager told Human Rights Watch that if a resident or family member has a concern, then the manager will ask that they meet, together with other relevant staff. This manager indicated that she also recommends a family mediation service, rather than the government-designated aged care advocacy service.[97] A nurse working at another facility said that they give each new resident and their family members information about complaints systems and advocacy services and that it is also included in the patient handbook that each resident receives.[98] 

Informed Consent

In the cases documented by Human Rights Watch, doctors, nurses, and other facility staff did not ask for consent for medications that were used to chemically restrain people or from any individuals receiving the medications. Also, medical personnel often did not seek informed consent from relatives, who in all the cases that we documented had a power of attorney to make health decisions. Several interviewees described to Human Rights Watch the shock and confusion they experienced when they learned about medications given to their relatives only when they received chemist (pharmacy) bills for the medications or otherwise happened upon medical records. Some interviewees said that facility staff gave medications even when family members holding powers of attorney specifically refused.

Laws on informed consent are complex in Australia and governed by state and territory legislation.[99] Health departments for most states and territories issue guidelines on some form of consent for health care.[100] However, there is no clarity on requirements for obtaining informed consent for medical treatment in aged care facilities.

In the October 2019 letter to Human Rights Watch, the Department of Health said, “The responsibility for seeking informed consent of the consumer or their family for prescription of medications, including psychotropics, rests with the prescriber (rather than the approved provider).”[101] The department further specified that an aged care provider “has no power to impose the obligation to seek informed consent on visiting medical practitioners or nurse practitioners.”[102]

At the same time, the Aged Care (Single Quality Framework) Reform Act, 2018, a regulation that applies to all aged care facilities that receive Commonwealth government funding,[103] requires that, “Each consumer is supported to exercise choice and independence, including to: (i) make decisions about their own care.”[104] An example it offers in guidance to providers of aged care services, is “Consumers say the organisation supports them to make decisions affecting their health and well-being.”[105]

Australia’s international legal obligations require informed consent for all medical treatment and interventions, as a fundamental aspect of human dignity, bodily integrity, and freedom from torture and ill-treatment.[106] For persons who may wish to have support in making decisions, the government should ensure that this is available. Forms of support are detailed below in International Standards

“Marie” said she knew something was deeply wrong after returning from holiday to find her mother unconscious and strapped by her stomach to a chair in the aged care facility in Southern Queensland. She had her mother’s power of attorney, and decided to investigate her care more closely:

I looked on the chemists’ bills… I see [new drugs] started when we went away. I rang the chemist, who said, “[The drug] is to calm people down.” As I’m going through [more bills]; I see it again…

I rang the doctor, saying, “You prescribed risperidone. Could you explain why?” Because the nurses tell him to. On the strength of what the nursing staff told him.

I got information from the internet, printed the [United States government] black box warning that said it would [increase risk of] death. They said, “That’s American.” I went directly to each nursing staff with the black box warning. They kept restraining after I said not to.[107]

Mae said that she discovered that staff were chemically restraining her husband, Dean, who lives in an aged care facility in Northern Queensland, whose case is described in more detail above. She had learned he was on olanzepine PRN (a sedative), endone (a narcotic pain reliever), and tramadol (a narcotic-like pain reliever) after checking the pharmacy bill and discussing it with her general practitioner in March 2018.

She then started meeting with facility staff and doctor, together with an advocate, asking that they stop using the drugs. In September 2018, she took her husband home for a visit and saw that the facility sent him home with endone and targin (a narcotic pain reliever). After Mae’s repeated meetings with the facility staff, in February 2019, they agreed to begin reducing some of the drugs by lowering the dosage. Mae said that once they decreased the dosage, Dean was “actually having a life” and able to walk with support. At the time of the interview with Human Rights Watch, the facility had not fully stopped all chemical restraints.[108]

Ray Ekins’ daughter, Susan, who holds her father’s powers of attorney, found that he was on antipsychotic medication. She had asked the geriatrician about his drastic emotional and physical changes, as described above, and the doctor made no mention of medication.  She investigated further:

I asked for his medical chart to be sent to a new doctor I was working for as a receptionist. It came across my desk. Olanzepine is contraindicated for people with dementia, and it causes Parkinsonian symptoms. He had been on it for 15 months! We moved him immediately, and got him a new GP, and weaned him off them.[109]

In some cases, nursing staff and doctors gave patients medication even after relatives with powers of attorney forbade it. For example, David Viney, 88, has mild dementia and has had a major stroke. He gave his son, Mark, an enduring power of attorney for his medical affairs. In 2017, the facility’s geriatrician placed David Viney on quetiapine, an antipsychotic, which caused him to sleep excessively and have difficulty eating.

Mark complained to his father’s GP, who acceded to Mark’s request that his father no longer receive quetiapine or any medications to control him. Three months later, the facility’s geriatrician prescribed new, sedating medications, without the informed consent of David or Mark Viney. The geriatrician called Mark after prescribing them, angry that he and the general practitioner had not followed his earlier prescription:

He said, “Who do you think you are? Where’s your medical degree from? Good luck getting him off the drug I put him on.” I told him not to see my dad again.

At 2 p.m. the next day, they [aged care facility staff] came to give my dad meds. The staff told me that the doctor upped his dose to four times per day. She said, “I have to give it to him.” I said, “No you don’t. I have the PoA [power of attorney], and I asked my father, and he refused it.”[110]

As noted below, a new manager began working at the facility and David Viney is no longer being chemically restrained.

In some cases, staff at aged care facilities hid from relatives the fact that they were giving certain medications to an older person. Katie told Human Rights Watch that she learned in December 2017 that her grandmother was being given drugs that caused sedation after her grandmother had wandered out of the facility:

I spoke with [clinical nurse manager], who said … we were told by this lady [the manager at the facility] that the drugs would be the best thing, that we would be harming her [without them]. We were not told anything about antipsychotic drugs…

[She told me:] “It’s harmless medication. Ninety percent of our patients here are on these. It will be beneficial. Reduce stress levels. It may be a very small amount of[diazepam].”

[Later,] her chart was left by a nurse. I opened it and took a photo and showed my doctor. She was actually on quite a high dose of an antipsychotic, plus [diazepam]. The doctor was incensed because they had taken her off all of her other medications for her cholesterol, and heart medication. My doctor said the dose [of the antipsychotic] was quite high.[111]

Life after Chemical Restraints

Some family members told Human Rights Watch that they were able to have their relatives weaned off medications used to restrain them, by moving them to a different facility or back home, working with a different doctor, or, in one case, hiring an aide. They described how their relatives no longer slept excessively and could communicate and engage in daily activities more.

One husband said he and his family fought for his wife, Monica, whom he lives with in a facility near Melbourne, to be weaned off the drugs used to restrain her. They share a room in the facility, and he holds her power of attorney. He saw how staff gave her the medications when she cried out, wandered around the facility and did not sit still, disrupting the staff in their routines. After extensive negotiation, Monica’s doctor and facility staff agreed to wean her from the medicines after he paid for a private carer to stay with her in the facility 13 hours each day. He said his wife went from being hunched and unbalanced, to being able to sit, eat, greet people, and dance when her grandson visits and sings.[112]

Their son told Human Rights Watch,

On medication, her essence was gone. She could not lay down, had restless legs… I couldn’t calm her down. She’d be hollering and wailing… When she was on heavy medications, she wasn’t [engaging in group activities like] playing with balloons. When she was off, she could play with them. Interacting brought her to life.[113]

David Viney, 88, has mild dementia and has had a major stroke. Staff at a facility put him on chemical restraints after which he slept all day and had difficulty eating, swallowing, and sitting upright. When his son, Mark, complained, the facility took him off the drugs, and according to him, his father recovered significantly:

They stopped the drugs, and he was himself again by the end of three days. He was telling jokes and laughing. I hadn’t seen him that way for months. He can remember things. They didn’t want to take him off the drugs. I said I don’t want him on. Told them to cease.[114]

Ray Ekins, 78, has dementia and was discharged from a hospital after surgery in 2013 back to the aged care facility where he had been living. At the hospital, doctors had prescribed a new prescription for olanzepine, an antipsychotic prohibited for use in older people with dementia, to be given three times per day. His daughter, Susan, recalled the changes after the medication started:

At that stage he couldn’t walk, only shuffle, he was very, very depressed, just crying all the time. And he couldn’t swallow… He would say, “My mind is a hell to me.” He wouldn’t be engaged in a conversation… All his symptoms are side effects of the antipsychotics, and they disappeared after he went off.[115]

Susan asked his geriatrician about these significant changes, who told her that her father was old, and she and Ray would just have to accept it. Unable to change the doctor’s decision, Susan moved him to a new facility in 2014, which weaned him off the medications immediately. She described the change:

Now, he’s very, very much like his old self. He’s Irish, with a thick Irish accent, and he’s hilarious. He’s very funny. He likes to just go out and have lunch. We’ll often take a picnic. We’ll go for walks on the beach. If there’s music on in a pub, we’ll go in the afternoon, when he’s not too tired.[116]

Ray Ekins, enjoying time with his sister Brenda (left), and his daughter, Susan Ryan, in 2018 after he was no longer being given antipsychotic drugs.

© 2018 Private

“Elsa,” whose mother lost significant weight while on quetiapine, an antipsychotic, moved her mother to a new facility 2014, and the staff there agreed to take her off the drugs. Elsa described the improvements in her mother, but also lasting consequences:

She never really recovered from the drugs. She never got mobile again… She’d lost all her muscle tone, any muscles that could hold her up vertically were gone… She did perk up; we could take her out in the sunshine, and she would enjoy it. She was a lot more alert, but she lost her mobility in amongst it all.[117]

When Gene’s daughter saw that he was sleeping during morning and afternoon visits while on medications to control his behavior, as described above, she found a different doctor who took him off the drugs. Her father never fully recovered, however:

My dad was off all drugs, but he wasn’t even swallowing. The doctor took him off [the drugs] and said, “I think [the medications] made him unable to swallow.” My dad didn’t regain that ability.

The new doctor said he had had a big stroke and lots of little strokes [while on the medications]. He said this three weeks before my dad died [of stroke].[118]

III. Experiences with Government Complaint Mechanisms

People can make complaints about treatment, conditions, or other issues in aged care facilities to the Aged Care Quality and Safety Commission (ACQSC) (formerly known as the Aged Care Complaints Commissioner), the primary government agency responsible for monitoring aged care in Australia.[119] It receives complaints and accredits according to the Aged Care Quality Standards for Australian government-funded aged care services by accrediting, assessing, monitoring, and resolving complaints received regarding subsidized aged care services.[120] Starting in January 2020, it will also incorporate “aged care approval and compliance functions” from the Department of Health.[121]

The ACQSC can take the following actions in response to complaints: 1) early resolution, whereby the ACQSC advises the complainant, calls the service provider, or takes other similar steps; 2) refer the complaint to a service provider to address; 3) facilitate a resolution with the service provider and complainant; or 4) conduct an investigation.[122] The ACQSC may also ask the complainant and service provider to undergo a formal mediation process external to the ACQSC with an independent mediator.[123] Engaging with an independent mediator involves a separate cost, one that the complainant and the service provider “would need to discuss and agree to.”[124] In its October 2019 letter to Human Rights Watch, the Department of Health stated that the ACQSC notifies it of any findings of non-compliance and the department may take regulatory action, including imposing sanctions. However, the department did not provide further detail as to the nature or frequency of such sanctions.[125]

Individuals can also file complaints in the case of death with the local coroner, the Australian Department of Health or, local entities such as a health ombudsman, department of health, or in some places the local human rights commission, depending on the state or territory, or the police.[126] Coroners investigate the cause of death in individual cases warranting an inquiry, and in some instances, conduct inquests into multiple deaths where similar factors may have contributed to each death. Their reports and recommendations can serve to highlight systemic issues.[127] A person who has a complaint about a doctor or nurse, including about inappropriate prescribing, may complain to the Australian Health Practitioner Regulation Agency (AHPRA). Sanctions may be imposed against a doctor or nurse if their conduct is found to fall short of statutory standards.[128]

The ACQSC closed 5,738 complaints in the year ending June 30, 2018. Seventy-five percent of the complaints were about residential aged care. The remainder came from other areas it oversees, such as home care.[129] Complaints are finalized with a final decision. This may be with an agreement or other document stating that the concerns have been resolved between the complainant and the facility or the ACQSC believes the issues to have been addressed. If the ACQSC believes the service provider is not meeting its responsibilities, it may direct the service provider to make changes. The concern can be referred to the ACQSC Quality Assessment and Monitoring Group for other action, such as a compliance inspection or audit. It can also be referred to the Department of Health for further examination of compliance with the law and regulations.[130]

In its October 2019 letter to Human Rights Watch, the Department of Health stated that the ACQSC “assesses the use of chemical restraint during complaint handling processes,” as well as during its accreditation, assessment, and monitoring (see additional details below regarding the ACQSC). It said there were a total of 44 complaints about chemical restraint in 2018 and 18 in the first quarter of 2019. The department did not provide any information regarding the specific actions taken or outcomes of these complaints.[131] 

A complainant unsatisfied with a decision can request that the ACQSC review it again; or send a complaint to the ACQSC about how it managed the complaint; or ask the Commonwealth Ombudsman to review the ACQSC actions in the complaint process.[132]

Family members of aged care facility residents who filed complaints about chemical restraint to the Aged Care Complaints Commissioner (ACCC, as of January 2019, the ACQSC) and other agencies described that in some cases, complaint mechanisms were difficult to use. Some other family members said complaints officers referred them back to the facility, with complaints not being resolved.

For example, “Estelle,” 90, has dementia, and has been living in an aged care facility in Queensland since September 2016. In January 2018, she fell while on risperidone. Her daughter “Imogen,” who has her power of attorney, put in a complaint about the use of medication and the accident to the ACCC (now the ACQSC). Imogen told us:

I lost faith in [the ACCC] because they are supposed to be there for the resident, but I don’t think they fought enough. They didn’t investigate, just rang up the facility. I would use ACCC as a resource, but I wouldn’t rely on it. They believed the facility over me.

I went to my federal MP [member of parliament] – I wanted an appointment. They said to complain to the ACCC. When we complained, we were shut down.[133]

“Marie’s” 99-year-old mother had been given risperidone without her knowledge or informed consent in a facility on the Gold Coast. She had additional complaints about the facility using a physical restraint and inadequate numbers of staff to support residents to eat at mealtimes. She explained her experience when she called to file a complaint in 2016:

I rang up the Queensland Aged Care Ombudsman [now the Aged Care Quality and Safety Commission]. They were so rude I was in tears. They said, “You’ve got three [complaints], and you can only have one,” and she was angry. She said, “Make up your mind! You can have just the [complaint about] risperidone, the restraint on your mother’s stomach, or not feeding her.” It was cruel. I just left it.[134]

Katie told Human Rights Watch about her difficulty finding out how to file a complaint and initiating a complaint regarding treatment of her grandmother, including sleeping excessively all day while on medications, serious weight loss, and other concerns in November 2017. “It took two days to get it started,” she said. “It’s not easy. I rung them, emails, wait for calls back.”[135]

The complaints officer of Queensland Aged Care Complaints Commissioner

responded to Katie in an email that she would contact the aged care facility and ask a manager to meet with her and “ask the provider to report back to me with the agreed outcomes.”[136] Katie met with the facility manager, and the manager told her they would change her grandmother’s medications, but not stop them as Katie requested. She said, “They said they were going to cut out some medications and leave others. The chemist said [Glynnis] was on a lot more medications, and I spoke to with the doctor, who confirmed.”

Katie said that after this exchange, “The aged care complaints outcome? They simply said what the manager said… Aged care contacted me two months later. I told them I wasn’t happy with the outcome, and that they didn’t follow through. They told me I could put in a new complaint. After that, I just did everything myself.”[137] She started going to the facility daily to feed her grandmother, who was too sleepy to eat while on the medications.

Mark Viney said that he made two complaints to the Aged Care Complaints Commission (ACCC) (now the ACQSC) in mid-2017 and early 2018 about heavy sedation of his father, and the facility’s efforts to remove his father from the facility. “[I] put in another complaint [in 2018] to government saying, ‘They’re still trying to get rid of him,’” Viney said. “Complaints said they would help, then they went on holiday.”[138] They never contacted Viney again. He said that a new manager started at the facility and staff are no longer sedating his father.

“Jessica” went to great lengths to try to stop chemical restraint of her mother “Linda,” who has dementia and has lived in a facility since 2015. Jessica first raised the medications issue, among others, directly with the facility staff in 2017, who refused to make changes. She then filed complaints with the ACCC in May 2017. The commission responded by instructing her to meet with the facility staff again. She described that September 2017 meeting:

[My family] had a meeting with the facility… We went in with heaps of evidence, so we went in wanting a response from the provider with solutions. They sat down and talked in circles. The CEO … said, “We are not here to talk about the future. We are here to talk about what is in your complaint.”[139]

The facility staff refused to stop using the chemical restraints. After she filed a second complaint in March 2018, the commission visited the site. The commission closed the second complaint in January 2019 without requiring the facility to make any changes. She said, “it’s frustrating, they didn’t do much.”[140]

Jessica then tried to speak with an accrediting officer from the Aged Care Quality and Safety Commission during the government agency’s re-accreditation for the facility, hoping this might spur a resolution:

I knew accreditation was coming; I was hoping our issues would be picked up. They were only accredited to April 2019. When I met with the accreditor, instead of sitting down and hearing my concerns, [he told me how I should] deal with the facility manager. I brought all this evidence, meetings, emails, showing how we used internal feedback forms, trying to resolve it internally … I have complaint fatigue. And a fear of reprisals [from the facility].[141]

The facility had threatened to bring a bullying case against her, after she raised her voice with a nurse, having stayed up all night caring for her mother. “[The facility CEO] tried to frame it as a workplace health and safety issue,” she said. “As if you come in here and speak inappropriately to staff it threatens their safety.” She has asked for this to be formalized in order to be given the right of reply. At the time of the interview with Human Rights Watch, the facility had not acted against Jessica.[142]

In June 2017, Julie McAdams made a formal complaint to the Aged Care Complaints Commission about the “heavy sedation” of her mother, Avis Gross, 90, by staff at the aged care facility where she lived. The commission did not examine her case but referred her to the Australian Health Practitioner Regulation Agency (AHPRA) saying that psychotropic medications prescribed by a doctor was not within its jurisdiction. She complained again in November 2018, shortly before her mother passed away, and they again did not intervene.[143]

In December 2018, McAdams complained to the Commonwealth Ombudsman about what she saw as unsatisfactory responses she received from the Complaints Commission. In January 2019, the ombudsman’s office declined to investigate, finding nothing wrong with the commission’s actions. McAdams then appealed for a procedural review of the Commonwealth Ombudsman’s decision. The internal review concluded there were no problems with the way its office had handled her complaint.[144]

“Amber” filed a complaint with the Australian Health Practitioner Regulation Agency (AHPRA) about the doctor who prescribed drugs used to chemically restrain her mother “Phillipa,” 95, in an aged care facility. She had called the in-house doctor for the facility to ask about the drugs, and she said that he said that “he only prescribed what the nursing home told him.”[145]

The existing model of complaints does not appear to be uniformly addressing the complaints of older people in aged care facilities to a unified, high standard, and complaint mechanisms are no substitute for strong regulation that is fully enforced to protect older people from chemical restraint.

IV. Government Response

The Australian government has acknowledged problems in the aged care sector and taken some steps to reform. These steps include a Royal Commission of Inquiry into Aged Care Quality and Safety, a new regulation on physical and chemical restraint, and revised principles and guidance for providers of aged care services. Australia’s Council of Attorneys General has also created a National Plan to Respond to the Abuse of Older Australians, which includes chemical restraint in its commonly recognized forms of abuse.[146] However, these steps have not resulted in prohibitions on the use of chemical restraint, allowing staff of aged care institutions to continue this practice.

In September 2018, Prime Minister Scott Morrison announced a Royal Commission of Inquiry into Aged Care Quality and Safety (the Royal Commission).[147] It is tasked with examining the quality of aged care services and how these services currently meet the needs of older people; mistreatment and “all forms of abuse,” and how to best deliver services to “the increasing number of Australians living with dementia.”[148] The Royal Commission has been conducting hearings in towns and cities across the country and has received thousands of submissions from individuals and organizations.[149] Chemical restraint is one area of inquiry.[150] The Royal Commission is expected to deliver its final report in April 2020.

Aged Care Quality and Safety Commission

In 2019, the Aged Care Quality and Safety Commission (ACQSC) revised its guidelines for aged care providers, known as the Aged Care Quality Standards. The User Rights Amendment (Charter of Aged Care Rights) Principles 2019, also amends the Quality of Care Principles, 2014. The government has issued guidance on this in the form of the Aged Care Quality Standards. The revised standards acknowledge the problems of chemical restraint but allow their use. Regarding antipsychotic medicines, the guidelines state:

There is concern that these medicines are being prescribed inappropriately in people aged 65 years and over for their sedative effects – that is, as a form of chemical restraint for people with psychological and behavioural symptoms of dementia or delirium.[151]  ... If an organisation uses restrictive practices such as physical or chemical restraint, these are expected to be consistent with best practice and used as a last resort, for as short a time as possible and comply with relevant legislation.[152]

Each aged care provider is to determine its own best practices.[153]

The 2019 Aged Care Quality Standards do not require facilities to report their use of chemical restraint. They only require that facilities demonstrate “a clinical guidance framework including ... minimising the use of restraint.”[154] The standards require providers to self-report three quality indicators: pressure injuries; the use of physical restraint; and unplanned weight loss.[155]

The ACQSC is responsible for inspections of facilities and monitors implementation of the Aged Care Quality Standards.[156] Quality assessors began unannounced visits to aged care facilities for the first time in 2019.[157] Of the 249 ACQSC site audits of aged care facilities in the first quarter of 2019, behavioral management was the second most frequent “not met” outcome, and clinical care was the fourth most frequent “not met” outcome.[158] The Department of Health reported to Human Rights Watch that in 2018, medication management was one of the five most frequent “not met” outcomes in residential care audits, and the most complained about issue. The department did not provide any details about chemical restraint findings from the ACQSC audits.[159]

Currently, it has the power to revoke accreditation of a service, meaning that they are unable to receive Commonwealth subsidies. From January 1, 2020 it will have compliance and enforcement functions, which currently remain with the Department of Health.[160]

Failure to Prohibit Chemical Restraint

Australian commonwealth laws do not prohibit chemical restraint. In July 2019, a new regulation issued by the Commonwealth Minister for Senior Australians and Aged Care, drafted by the Department of Health, purports to minimize the use of physical and chemical restraint. It set restrictions on physical restraints, including an explicit requirement for consent to their use, unless necessary in an emergency. It did not set those same limits and obligations regarding chemical restraints.[161] It amends the Quality of Care Principles 2014, the animating regulation for the Aged Care Act. Instead of eliminating the use of chemical restraint, the regulation tries to regulate the practice.

The regulation allows aged care facility staff to use chemical restraint for anyone in aged care if a health practitioner has assessed an individual as “requiring the restraint” and has prescribed the relevant medication. It requires the decision to use the restraint to be documented but does not require prior informed consent of the person or a representative, such as a family member. It says the representative should be notified in advance “if it is practicable to do so.” According to the October 2019 letter from the Department of Health to Human Rights Watch, referring to aged care facilities responsibilities under the regulation, providers must “inform the consumer’s representative around the time of administering the medication.”[162] The regulation does not state that this representative must be the individual’s chosen proxy, such as a person they have given powers of attorney.

The Department of Health stated at a parliamentary hearing about Minimising the Use of Restraints Principles 2019, that it does not regulate prescribing practices, and therefore does not regulate informed consent, safeguards, or a requirement of alternatives.[163] Other regulatory agencies, namely the National Disability Insurance Scheme, have chosen to regulate the practice of chemical restraint, including these prescribing practices, informed consent, safeguards and the requirement of alternative measures, among others.[164]

Pharmacists, lawyers, and policy experts have criticized the regulations for failing to prohibit chemical restraint, perpetuating the use of restraints to control people’s behavior, and failing to include a requirement for informed consent and provisions to allow for refusal.[165] The rules also do not include any specifications about complaints and recourse – there is no penalty or sanctions specified for facilities or staff that inappropriately administer medication. The regulation does not specify which entity is tasked with monitoring it.

The government does not have a clear policy plan to eliminate chemical restraint. In the October 2019 letter from the Department of Health to Human Rights Watch, the department noted that the Australian government spent AU$4.1 million (US$2.7 million) between 2013 and 2016 on projects to reduce “the use of sedative and antipsychotic medications in residential aged care facilities.”[166] In 2019, however, the letter states, the department’s focus is on education and “messaging,” including on the “appropriate use” of these drugs in aged care facilities as well as messaging on “alternative management strategies for behavioural and psychological symptoms of dementia….”[167]

In a July 2019 letter to Human Rights Watch, Leading Age Services Australia, a trade association of aged care providers, said chemical restraint should be a last resort, but appeared to acknowledge that not all providers implement this in practice:

In LASA’s view, the principle that restraint should be a last resort is widely accepted across the sector. There are few age services providers that would not support the principle of minimising the use of restraint. However, there is variation in the way that providers are able to operationalise the principle of minimising restraint.[168]

Failure to Set Effective Standards for Supportive Levels of Staffing

The Australian government has yet to ensure standards for supportive levels of staffing and training of staff in aged care facilities. Families of older people with dementia told us how low numbers of staff negatively affected the quality of care and increased the use of chemical restraints. Aged care facility staff, including registered nurses, reported the difficulties of providing adequate care due to limited staff.

Australian law does not require a minimum number of staff hours per person per day or a minimum number of staff in aged care facilities. Aged care providers must ensure staffing be “adequate” and “appropriately skilled.”[169]   

The right to health requires governments to ensure that health services are appropriate and of good quality.[170] The Australian Nursing and Midwifery Federation, the Australian Medical Association, the Royal Australian College of General Practitioners, and the Australia and New Zealand Society for Geriatric Medicine wrote in a letter urging legislation on staffing in aged care that “Studies identify that the main reason for missed care, or low-quality care in residential aged care facilities is that there is not enough staff available.”[171] Numerous studies around the world have shown that adequate staffing—sufficient quantity, training, and consistency of staff—is critically important to the quality of care aged care facility residents receive, and that inadequate staffing leads to substandard care.[172] Gross understaffing and under-training of staff may contribute to the use of chemical restraint.

Elsa, a former nurse, said that her mother, 86, who has dementia, was chemically restrained in an aged care facility in New South Wales in 2014. Elsa described how she would visit her mother to find her lying in soiled diapers, with the nurse call bell unanswered:

In the high care facility, there were maybe 100 [residents]. I would only ever see a maximum of four staff. [T]here were times I went to visit my mom and she was sitting in urine and feces, had been for a long time, and the light was on. It was on numerous occasions. When she rang the buzzer to go to the toilet, no one would come.[173]

A registered nurse with more than 40 years of experience told Human Rights Watch about how he felt compelled to leave his job in an aged care facility due to low staffing and the pressure and risk he experienced:

I resigned late last year, reluctantly, because my license was at risk... It’s impossible to supervise the numbers [of residents]. I worked every Sunday, with close to 80 or 90 residents, and no other RN [registered nurse] staff on Sunday… RNs were responsible for medication management; that consumed most of my day…

I was worried about what I’d find when I got there at 6 a.m. One shift starts at six, another ends. The providers don’t allow handover. There are falls, medications, messages from families, visits from doctors. But you’ve got to hit the ground running, and you can’t [take time to] go through [handover] notes.

I’d looked after one gentleman I’ve known for many years. He was dying. I simply didn’t have the time to spend with him that day I was working. It was very saddening. He was a lovely mate, and finally I just couldn’t provide the care I felt I needed with him. The only real time I had to spend with him was after my shift. It was going to hell in a handbasket.[174]

A registered nurse working in several aged care facilities across New South Wales described the low staffing that she typically encountered in her daily work:

In a hospital, the ratio of RN to patient is one nurse for three or four patients. In aged care it’s two care staff to 30 residents, and one RN for 200 residents, in different facilities. How are you supposed to effectively provide service? All it takes is two people to fall out of bed, or one person to be transitioning back to the facility from the hospital, and all the care staff is tied up. Staff is always stretched in the current environment.[175]

The Australian Nursing and Midwifery Federation’s National Aged Care Survey 2019 found that nearly 90 percent of aged care staff reported current staffing levels at their facility were not able to provide an adequate standard of nursing and personal care to residents. Problems with dementia management were one of the top concerns of aged care facility staff.[176]

Training of aged care staff is another key area of concern. One carer working in an aged care facility in Northern Queensland told Human Rights Watch about the training she receives: “There’s in-house training for hygiene and lifting, but not dementia. Every six months there’s a refresher. Nothing about dementia.”[177] A physical therapist with almost nine years of experience in aged care noted, “There is mandatory training for all staff on fire safety, infection prevention, and physical handling. There is no formal mandated training on behavior management. It’s up to the provider.”[178]

Juanita Breen, a pharmacist who has studied chemical restraint in aged care facilities in Australia, noted that staff levels and appropriate training are essential to move away from the use of chemical restraints. She said, “If we eliminate restraints, we need a workforce that understands how to manage dementia. There is no training for the workforce. I think it’s such a complex problem: legislation is needed and underlying that there needs to be a lot of education.”[179]

One study of a training for bathing people with dementia in the United States found it produced a statistically significant reduction in agitated behavior and antipsychotic drug use.[180]

Aged and Community Services Australia, a trade association for non-profit aged care providers, said in a letter to Human Rights Watch regarding the issue of staffing requirements:

  • We do not support fixed staffing ratios in residential facilities for a variety of reasons, including:
    • Facilities and variable acuity levels, both within facilities over time and between different facilities;
    • Fixed ratios do not account for the variety of differing service models within the sector; and
    • Fixed ratios do not account for other factors such as building design, technology etc.
  • However we support appropriate staffing levels underpinned by an appropriate skills mix and timely access to a responsive external health professional and specialist workforce.[181]

Older Australians should have the right to be free from chemical restraint. They should have easy access to complaint mechanisms empowered to address complaints about chemical restraint. Older people with dementia should have support from trained staff at properly staffed aged care facilities to file a complaint if they request such assistance.

The existing of government response to chemical restraint has been lacking. A regulation currently permits chemical restraints; the complaints system, though changed, still lacks navigability and has been unclear in its authority to address complaints of chemical restraint; broader systemic issues of undertraining and understaffing at aged care facilities persist.

V. International Standards and Australian Law

International Standards

Prohibition of Torture and Other Cruel, Inhuman, and Degrading Treatment

Australia is party to several international conventions that prohibit torture and other cruel, inhuman or degrading treatment or punishment, including the International Covenant on Civil and Political Rights, the Convention against Torture and Other Cruel, Inhuman or Degrading Treatment or Punishment, and the Convention on the Rights of People with Disabilities (CRPD).[182] 

People living in aged care facilities, particularly those with dementia or other similar illnesses or conditions, are persons with disabilities for the purposes of the CRPD, in that they are people who “have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others.”[183]

In its 2013 review of Australia, the United Nations Committee on the Rights of Persons with Disabilities, which monitors state compliance with the CRPD, criticized the use of chemical restraints in relation to Australia’s obligations to prohibit torture and ill treatment. It noted that, “persons with disabilities, particularly those with intellectual impairment or psychosocial disability, are subjected to unregulated behaviour modification or restrictive practices such as chemical, mechanical and physical restraints and seclusion, in various environments.”[184] The committee recommended that Australia take immediate steps to end restrictive practices, including by establishing an independent national preventive mechanism to monitor places where they may occur, to ensure that persons with disabilities are “not subjected to intrusive medical interventions.”[185]

In 2013, Juan Mendez, then the UN special rapporteur on torture and other cruel, inhuman or degrading treatment or punishment, warned of the danger of human rights violations in the healthcare setting where the perception persists that “certain practices in health-care may be defended by the authorities on grounds of administrative efficiency, behaviour modification or medical necessity.”[186] Mendez also noted that “medical treatments of an intrusive and irreversible nature, when lacking a therapeutic purpose, may constitute torture or ill-treatment when enforced or administered without the free and informed consent of the person concerned.”[187] He also emphasized that an act may constitute ill-treatment, even if it is “intended to benefit the ‘patient’” and may “exist alongside ostensibly therapeutic aims.”[188]

Mendez stated that such violations of rights are particularly likely to occur when the “treatments are performed on patients from marginalized groups, such as persons with disabilities, notwithstanding claims of good intentions or medical necessity.”[189] He also stated that the use of a “prolonged restraint” may constitute torture and ill-treatment when used against people with mental (psychosocial or intellectual) disabilities.[190]

Mendez concluded that “it is essential that an absolute ban on all coercive and non-consensual measures, including restraint and solitary confinement of people with psychosocial or intellectual disabilities, should apply in all places of deprivation of liberty, including in psychiatric and social care institutions.”[191]

Right to Health and Informed Consent

The right to the highest attainable standard of physical and mental health is enshrined in several international human rights conventions to which Australia is party, including the International Covenant on Economic, Social and Cultural Rights and the CRPD.[192] 

In accordance with the right to health, governments have a core obligation to ensure the right of access to health care on a non-discriminatory basis, especially for vulnerable or marginalized groups.[193] Governments also may violate the right to health through the failure to take appropriate steps towards the full realization of everyone’s right to health.[194]  Allowing aged care facilities to give antipsychotic medications for purposes other than the benefit of the recipient, especially over an extended period of time, is inconsistent with the right to health. It poses threats to life and well-being from adverse side effects and increased mortality associated with antipsychotic use. 

The CRPD requires informed consent for medical treatment and interventions. [195] The CRPD committee has determined that treating an adult with medications without consent is a violation of the right to equal recognition before the law, [196] the right to personal integrity, and the right to freedom from violent exploitation and abuse, as well as the right to freedom from torture and inhuman and degrading treatment.[197]

For persons who may require support in making decisions and giving their informed consent for medical treatment, support should be provided and can take different forms. These can include:

  • Accessibility measures and reasonable accommodation in understanding medical interventions, their consequences and side effects, as well as alternatives;
  • Advance directives; and
  • The appointment of one or more support persons chosen by the person concerned.

The CRPD Committee has acknowledged that in some cases, even after serious and sustainable efforts have been made, it may not be possible to determine a person’s will and preferences, due to communication barriers or for other reasons. This may be the case with some people with dementia. In such situations, every effort should be made to make the “best interpretation” of an individual’s will and preferences.[198] Consideration should be given to all forms of verbal or nonverbal communication, as well as a person’s relevant previously manifested preferences, values, attitudes, and actions.

The special rapporteur on the right of everyone to the enjoyment of the highest attainable standard of physical and mental health has expressed that informed consent “is a core element of the right to health, both as a freedom and an integral safeguard to its enjoyment.”[199] In a 2009 report the special rapporteur noted:

Informed consent is not mere acceptance of a medical intervention, but a voluntary and sufficiently informed decision, protecting the right of the patient to be involved in medical decision-making, and assigning associated duties and obligations to health-care providers… [It promotes] patient autonomy, self-determination, bodily integrity and well-being.[200]

The special rapporteur on torture has similarly noted that informed consent is fundamental to “respecting an individual’s autonomy, self-determination and human dignity.”[201]

The special rapporteur on the right to health called on states to:

[R]adically reduce medical coercion… [and] not to permit [others] to provide consent on behalf of persons with disabilities on decisions that concern their physical or mental integrity; instead, support should be provided at all times for them to make decisions, including in emergency and crisis situations.[202]

The special rapporteur acknowledged that such change was “a challenging process that will take time” but that “deliberate, targeted, and concrete actions” were needed to end medical interventions without informed consent:

(a) Mainstream alternatives to coercion in policy with a view to legal reform;

(b) Develop a well-stocked basket of non-coercive alternatives in practice;

(c) Develop a road map to radically reduce coercive medical practices, with a view to their elimination, with the participation of diverse stakeholders, including rights holders;

(d) Establish an exchange of good practices between and within countries;

(e) Scale up research investment and quantitative and qualitative data collection to monitor progress towards these goals.[203]

Key Domestic Laws

The Australian Parliamentary Joint Committee on Human Rights

The Australian Parliamentary Joint Committee on Human Rights, which examines bills, legislation and regulations for compatibility with international human rights standards, said in December 2018 with regard to specific legislation in the disability support services sector that the use of restrictive practices, including chemical restraint, “may amount to torture, cruel, inhuman or degrading treatment or punishment,” recognizing that “Australia’s obligations in relation to torture, cruel, inhuman or degrading treatment or punishment are absolute (that is, they can never be subject to limitations).”[204] The Parliamentary Joint Committee on Human Rights has also said that the use of restrictive practices (including chemical restraint) can infringe on the right to liberty and security of the person, guaranteed by the International Covenant on Civil and Political Rights and the CRPD, as well as the following rights guaranteed under the CRPD: the right to equal recognition before the law and to exercise legal capacity; the right to respect for their physical and mental integrity on an equal basis with others; the right to freedom from exploitation, violence and abuse; and the right to freedom of expression and access to information.[205] 

Of the three Australian states where Human Rights Watch conducted research, only one currently regulates chemical restraint in some form. In New South Wales, the Guardianship Act and advanced care directives apply to the provision of medical treatment in hospital settings and aged care facilities. Consent for the provision of medical treatment is generally required, though medical treatment may be carried out on an individual without consent in certain circumstances.[206]   It defines special medical treatment for the purpose of the Guardianship Act and includes any treatment that involves the use of an aversive stimulus, whether mechanical, chemical, physical or otherwise. Only the New South Wales Civil and Administrative Tribunal can consent to special treatment.[207] Victoria’s legal framework does not regulate the use of chemical restraints in aged care facilities.  Queensland does not regulate chemical restraint in aged care facilities.[208]

In Australian criminal and tort law, giving a sedating medication without consent or other legal or medical justification (such as pursuant to a court order or for emergency treatment), may be a crime, a civil wrong (a tort), or both.[209]  Human Rights Watch is not aware of any Australian prosecution or civil suit in relation to chemical restraint.

Prohibitions on Age Discrimination

Australian national laws prohibit discrimination based on age or based on disability in certain circumstances. Each of the Australian states and territories also have laws prohibiting age discrimination and disability discrimination in certain circumstances.[210] The Age Discrimination Act 2004 prohibits age discrimination in certain circumstances, including in the provision of services and accommodation.[211]  Under the act, direct age discrimination occurs when a person is treated less favorably than a person of a different age would be treated in the same circumstances, because of their age or a characteristic that pertains to, or is generally imputed to, persons of their age.[212] Indirect age discrimination occurs if an unreasonable condition, requirement or practice is imposed to the disadvantage of persons of a specific age.[213] 

Giving drugs that chemically restrain older persons will constitute unlawful age discrimination under Australian law if an aged care facility would not give the medication to a younger person in the same circumstances, or unreasonably maintains the practice of giving medications to older persons.

Prohibitions on Disability Discrimination

The Disability Discrimination Act 1992 prohibits discrimination on the basis of disability, which under law includes dementia, in the provision of services or accommodation.[214] Under the act, direct discrimination occurs if a person with a disability is treated less favorably than a person without the disability would be treated in circumstances that are not materially different, including where there is a failure to make reasonable adjustments for the person with a disability.[215] Indirect discrimination occurs where an unreasonable requirement or condition is imposed that a person with a disability is not able to comply with, to the person’s disadvantage, including where reasonable adjustments are not made to facilitate compliance.[216]

Chemically restraining a person with dementia or a similar disability will constitute unlawful disability discrimination under Australian law if an aged care facility would not give antipsychotic medication to a person who behaved in a similar manner but did not have dementia or a similar disability. Such discrimination might occur if, for example, a person with dementia is subject to a chemical restraint as a result of behavior deemed aggressive, where a person without dementia, behaving similarly, would not be subject to a chemical restraint. Further, the use of chemical restraints may constitute unlawful discrimination if reasonable adjustments, such as moving a person away from another resident whose behavior is causing the person agitation, or calming them through other techniques, are not used in preference to chemical restraint.  

VI. Recommendations

To the Minister for Aged Care and Senior Australians

  • Introduce legislation to prohibit the use of chemical restraints as means of controlling the behavior of older people with dementia or for the convenience of staff.
  • Any new law should also ensure:
    • Informed consent for all treatment or interventions;
    • Independent monitoring; and
    • Effective, accessible, independent complaint mechanisms.
  • Ensure all policies and actions implemented for aged care are consistent with the UN Convention on the Rights of Persons with Disabilities.
  • Develop more community-based services for older people with dementia to ensure support for older people to live independently in their communities, including at home.

To Parliament

  • Pass legislation to prohibit the use of drugs as chemical restraints as means of controlling the behavior of older people with dementia or for the convenience of staff. The legislation should include:
    • Prohibition of the use of chemical restraints and outline penalties;
    • Requirement of informed consent for all treatments and interventions from the older person or, where that is not possible, a relative chosen by them;
    • Mandatory training for all aged care facility staff in dementia and alternative methods and skills to de-escalate unwanted behavior and support the needs of people with dementia;
    • Adequate minimum staffing levels to provide support to older people;
    • Adequate enforcement mechanisms to protect older people’s rights;
    • Independent monitoring and oversight of all facilities without obstacles;
    • Effective, accessible, independent complaint mechanisms, including for individuals in aged care and their families;
    • An amendment to the Aged Care Act to expressly grant access to aged care facilities to advocates and quality assessors.
  • Consider an Aged Care Ombudsman role, tasked with assisting Australians using the Aged Care system, and making policy recommendations, completely independent from the Department of Health and the Aged Care Quality and Safety Commission.

To the Department of Health

  • Strengthen the regulatory environment to end use of chemical restraint by addressing the following areas:

Ensure Free and Informed Consent:

  • Require a standardized protocol for obtaining free and informed consent from the individual whose care is concerned, including with support as needed in the decision, or the appointed representative of a person with dementia, as long as this representative is chosen freely and tasked with reflecting the individual’s will and preferences before, during, and for the continuation of medical treatment. 
  • Ensure meaningful penalties for failure to obtain informed consent.
  • Develop and implement models of supported decision-making to enable people using aged care services to make their own decisions about treatment and care.
  • Implement programs that ensure equitable access to preventative, diagnostic and care services for all people with dementia, including social and rehabilitative support. 
  • Introduce national and local public health and awareness campaigns to reduce stigma around dementia.
  • Ensure strong protections against eviction of older people from aged care facilities to better protect them from coercive threats of eviction.

For Adequate Minimum Staffing in Aged Care Facilities:

  • Require a 24/7 registered nurse presence in all aged care facilities and establish stronger minimum staffing levels and ratios or other enforceable minimum requirements to ensure continuous, person-centered support for older people in aged care.
  • Consider automatic penalties for facilities that do not meet minimum quantitative and qualitative staffing requirements.
  • Ensure adequate staffing to support older people.
  • Require training for all aged care facility staff in dementia support. Trainings should include how to recognize and analyze behaviors, verbal de-escalation techniques, tools to interact effectively with people with dementia, and side effects of medication.

For Ending Chemical Restraint:

  • Consider creating a new inspection survey protocol that can identify and document problems potentially arising from chemical restraint, for example, excessive sleeping, and problems around a lack of free and informed consent in accepting medications, and monitoring, proactively interviewing staff, residents, and residents’ families.
  • Ensure strong protections for whistleblowers to report chemical restraint.
  • Eliminate the permitted use of risperidone as a chemical restraint. 
  • Eliminate the use of PRN for drugs known to be used as chemical restraints.

To the Aged Care Quality and Safety Commission

  • Ensure complaints officers are empowered to investigate and address complaints of chemical restraint.
  • Ensure that inspections and monitoring assessors proactively and confidentially interview older people, residents’ families, and staff to identify indications of chemical restraint.
  • Publish data regarding chemical restraint findings, including numbers of allegations, investigations, and closed cases, facility names, and the amounts of fines or other penalties for this practice.

To the Council of Attorneys General

  • Establish legal support services for older people experiencing chemical restraint as a part of the National Plan to Respond to the Abuse of Older Australians, in coordination with existing state advocacy organizations.

To State and Territory Governments

  • Prohibit the use of chemical restraints as means of controlling the behavior of older people with dementia or for the convenience of staff. Ensure minimum staffing and adequate training in aged care facilities to support older people.

To the Coroner in Each State and Territory:

  • Review deaths that occur in nursing homes to assess whether use of chemical restraints may have contributed to the death.  Where appropriate, conduct inquiries or inquests into such deaths.    

Acknowledgements

This report was researched and written by Bethany Brown, researcher on older people’s rights in Human Rights Watch’s Disability Rights Division. Giorgi Gogia, associate director in the Europe and Central Asia Division; Jane Buchanan, deputy director in the Disability Rights Division; Elaine Pearson, Australia director at Human Rights Watch; Nicole Tooby, Australia coordinator at Human Rights Watch, and Laura Thomas, a former fellow at Human Rights Watch, provided research support.

The report was edited by Jane Buchanan, Elaine Pearson, and Joe Amon, a consultant on public health. Babatunde Olugboji, deputy program director, and James Ross, legal and policy director, provided programmatic and legal review respectively.

Cara Schulte, associate in the Disability Rights Division, provided research and production assistance. Layout and production were done by Cara Schulte; Jose Martinez, senior coordinator; Fitzroy Hepkins, production manager; and Remington Arthur, publications associate. Fortune Nyasha Nyamande, Mariam Matta, and Stephanie Mao, fellows and interns on older people’s rights, and Jinseul Jun, intern with the Disability Rights Division, provided additional research support. Lawyers acting on a pro bono basis helped us review pertinent domestic legislation.

This work would not have been possible without generosity and courage of so many individuals with family in facilities, people living in facilities, and their advocates, as well as facility staff. We are grateful to the many advocates, medical professionals, and scholars who shared their knowledge and experience with us.

This report would not be what it is without the support of ADA Australia’s team: Geoff Rowe, Karen Williams, and Jess Ma. Kaele Stokes and Sally Lambourne and their team at Dementia Australia supported this work throughout Victoria and New South Wales.

Human Rights Watch would also like to thank the many human rights organizations, activists, lawyers, and health professionals working in the field of older people’s rights and aged care who shared their insights and analyses with us or otherwise provided assistance.

Bill Mitchell of Townsville Legal Centre provided valuable legal background.

We would also like to thank ACT Disability and Aged Care Advocacy (ADACAS); Julie Reeves, the Australian Nursing and Midwifery Federation; Scott McDougall, formerly with Caxton Legal Centre and Cybele Koning, Caxton Legal Centre; Carmelle Peisah, Capacity Australia; Donna Swan, COTA Victoria; Kate Swaffer, Dementia Alliance International; Michael Gourlay, Pauline Meaney and Kate Dalton, Elder Rights Advocacy; Lise Barry, Macquarie University; Joe Ibrahim, Monash University; Amanda Alford, National Association of Community Legal Centres; Craig Gear, Older Persons Advocacy Network; Mary Burgess, Queensland Office of the Public Advocate; Natalie Siegel-Brown, Queensland Office of the Public Guardian; Margaret Duckett, Russell Westacott and Pat Joyce, Seniors Rights Service; Raylene Liddicoat, Simply Chronic Care; Andrew Byrnes, University of New South Wales; Terry Carney, University of Sydney; Juanita Breen, University of Tasmania; Nola Ries, Linda Steele, University of Technology Sydney; Lyn Phillipson, University of Wollongong; Lauren Adamson, John Chesterman, Victoria Office of the Public Advocate, and many others including those not identified by name to protect confidentiality.

Collier Charitable Fund generously supported this work. A special thank you to the Planet Wheeler Foundation for the financial support that made this research and report possible. Human Rights Watch would like to thank the Samuel Centre for Social Connectedness for its partnership throughout this research. Social connectedness is a guiding theme in Human Rights Watch’s work for older people’s human rights. We offer our deepest thanks to Kim Samuel for her unwavering belief in the power of social connectedness.

Annex

Glossary

Aged care facility is a residential facility in which a person resides, where they receive personal care or nursing care, or both, with appropriate staffing to meet residents’ nursing and personal care needs. These facilities also provide meals and cleaning services, furnishings, furniture, and equipment for residents.

Aged Care Quality and Safety Commission (ACQSC) began operations on January 1, 2019, as the primary government agency responsible for monitoring aged care in Australia. It replaced the Australian Aged Care Quality Agency and the Aged Care Complaints Commissioner. It accredits, monitors, assesses, and receives complaints regarding government-subsidized aged care services.

Australian Health Practitioners Regulation Agency (APHRA) is a governmental body supporting the national boards of health professions. It accepts complaints about practitioners’ behavior placing the public at risk or practicing their profession in an unsafe way.

Australian Department of Health develops and delivers policies and programs and advises the Australian government on health, aged care, and sport. It seeks to ensure better health for all Australians.

Chemical restraint is restraint that is, or that involves, the use of medication or a chemical substance for the purpose of influencing a person’s behavior other than medication prescribed for the treatment of, or to enable treatment of, a diagnosed mental health condition or intellectual disability, a physical illness, or a physical condition.

Commonwealth Ombudsman assesses complaints about the actions of Australian government agencies and private sector organizations it oversees, to consider if the actions were wrong, unjust, unlawful, discriminatory, or unfair.

Dementia is the loss of cognitive functioning—thinking, remembering, and reasoning—and behavioral abilities to such an extent that it interferes with a person's daily life and activities.

Informed Consent is a decision made with a full understanding of the purpose, risks, benefits, and alternatives to a medical intervention, in the absence of pressure or coercion.

Person-centered care is care focused on an individual’s unique qualities as a person. Such care builds and nurtures relationships between the individual and others.

Pharmacists and chemists are used interchangeably in Australia to refer generally to professionals trained and authorized to dispense medicines. However, formally, a pharmacist is qualified to prepare and dispense medicines, and a chemist is a broader term for an expert in chemistry. Chemist can also refer to a drugstore.

Power of attorney is a legal document in which one person nominates and gives legal authority to another to act on affairs on their behalf.

Quality Assessors conduct assessments in aged care facilities and have the authority to enter and search facilities. They work for the ACQSC (above) and are distinct from ACQSC complaints officers.

Risperidone is an antipsychotic medicine that is used to treat schizophrenia in adults and children who are at least 13 years old. In Australia, it is permitted for the treatment (up to 12 weeks) of psychotic symptoms, or persistent agitation or aggression unresponsive to non-pharmacological approaches in patients with moderate to severe dementia of the Alzheimer type. Risperidone is not approved by the Food and Drug Administration (FDA) in the United States for the treatment of behavior problems in older adults with dementia.

Royal Commission of Inquiry into Aged Care Quality and Safety was created by the Australian government in September 2018. It is holding hearings across the country and accepts submissions from the public to learn about aged care. It will conclude its activities in April 2020 with a final report making recommendations for improving aged care services. 

 

 

[1] Australian Institute of Health and Welfare, “Older Australia at a Glance,” https://www.aihw.gov.au/reports/older-people/older-australia-at-a-glance/contents/demographics-of-older-australians/australia-s-changing-age-and-gender-profile (accessed September 18, 2019).

[2] Australian Institute of Health and Welfare, Residential Aged Care Facility Identifying and Definitional Attributes, https://meteor.aihw.gov.au/content/index.phtml/itemId/384424 (accessed August 12, 2019).

[3] Quian, S., et al., “Nursing staff work patterns in a residential aged care home: a time-motion study,” Australian Health Review, November 2016, https://www.ncbi.nlm.nih.gov/pubmed/26615222 (accessed August 19, 2019). Enrolled nurses complete vocational studies of two years, while registered nurses complete theoretical studies of three years. See, The Difference Between a Registered Nurse and an Enrolled Nurse, https://www.myhealthcareer.com.au/nursing/the-difference-between-a-registered-nurse-and-an-enrolled-nurse-by-belynda-abbott/ (accessed September 18, 2019).

[4] Sarah Russell, Living Well in an Aged Care Home, 2017, https://apo.org.au/sites/default/files/resource-files/2017/10/apo-nid115961-1226316.pdf (Accessed September 20, 2019).

[5] Parliament of Australia, Advisory Report on the Aged Care Amendment (Staffing Ratio Disclosure) Bill 2018 , https://www.aph.gov.au/Parliamentary_Business/Committees/House/Health_Ag... (accessed August 28, 2019).

[6] See Australian Nursing and Midwifery Federation, Ratios for Aged Care, http://anmf.org.au/campaign/entry/ratios-for-aged-care (accessed September 18, 2019); Queensland and Victoria have minimum nursing ratios for public hospitals. See, Ratios Now In Queensland, https://www.nswnma.asn.au/ratios-now-law-in-queensland/ (accessed September 18, 2019).

[7] Parliament of Australia, Future of Australia’s Aged Care Sector Workforce, 3.118, https://www.aph.gov.au/Parliamentary_Business/Committees/Senate/Communit... (accessed August 28, 2019).

[8] Aged care data snapshot—2018, Australian Institute of Health and Welfare GEN Aged Care Data, Fifth Release, October 19, 2018, https://gen-agedcaredata.gov.au/Resources/Access-data/2018/September/Age... (accessed August 14, 2019).

[9] Healthdirect, Dementia Statistics, https://www.healthdirect.gov.au/dementia-statistics (accessed August 28, 2019).

[10] Aged care data snapshot—2018, Australian Institute of Health and Welfare GEN Aged Care Data, Fifth Release, October 19, 2018, https://gen-agedcaredata.gov.au/Resources/Access-data/2018/September/Age... (accessed August 14, 2019).

[11] Hampson, Ralph, “Australia’s residential aged care facilities are getting bigger and less home-like,” The Conversation, September 23, 2018, https://theconversation.com/australias-residential-aged-care-facilities-... (accessed August 14, 2019).

[12] My Aged Care, “How Assessment Works,” May 14, 2018, https://www.myagedcare.gov.au/eligibility-and-assessment/how-assessment-...; Australian Department of Health, “Aged Care Subsidies and Supplements, New Rates of Daily Payments from 1 July 2019,” https://agedcare.health.gov.au/sites/default/files/documents/06_2019/age... (accessed August 14, 2019).

[13] This amount is calculated as 85 percent of the single basic Age Pension of AU$678.21 per fortnight. Grove, Alex, “Aged Care: a quick guide,” Parliament of Australia, June 5, 2019, https://www.aph.gov.au/About_Parliament/Parliamentary_Departments/Parlia... (accessed August 16, 2019); My Aged Care, “Aged Care Home Costs and Fees,” https://www.myagedcare.gov.au/aged-care-home-costs-and-fees (accessed August 16, 2019).

[14] Grove, Alex, “Aged Care: A Quick Guide,” Parliament of Australia, https://www.aph.gov.au/About_Parliament/Parliamentary_Departments/Parliamentary_Library/pubs/rp/rp1819/Quick_Guides/AgedCare2019 (accessed August 2019).

[15] Australian government Aged Care Financing Authority, Sixth Report on the Funding and Financing of the Aged Care Sector 2018, https://agedcare.health.gov.au/sites/g/files/net1426/f/documents/08_2018... (accessed August 7, 2019).

[16] Ibid.; Australian Department of Health, “Flexible Care,” https://agedcare.health.gov.au/programs/flexible-care (accessed August 14, 2019).

[17] Australian Productivity Commission, “About the Commission,” 2014, https://www.pc.gov.au/about (accessed August 14, 2019); and Productivity Commission, “Housing Decisions of Older Australians,” December 2015, https://www.pc.gov.au/research/completed/housing-decisions-older-austral... p. 3 (accessed August 7, 2019).

[18] Ibid., p. 5.

[19] Ibid.

[20] Ibid., p. 6.

[21] Ibid., p. 16.

[22] The Conversation, Explainer: What is a home care package and who is eligible? http://theconversation.com/explainer-what-is-a-home-care-package-and-who-is-eligible-112405 (accessed September 20, 2019).

[23] “Dementia statistics,” Alzheimer’s Disease International, https://www.alz.co.uk/research/statistics (accessed August 15, 2019).

[24] “Fact Sheets: Dementia,” World Health Organization, December 12, 2017, https://www.who.int/news-room/fact-sheets/detail/dementia (accessed August 15, 2019).

[25] Dementia Australia, “Key Facts and Statistics,” https://www.dementia.org.au/statistics (accessed August 11, 2019).

[26] United States Department of Health and Human Services, National Institute on Aging, “Basics of Alzheimer’s Disease and Dementia,” December 2017, https://www.nia.nih.gov/health/what-dementia-symptoms-types-and-diagnosis (accessed August 16, 2019).

[27] Ibid.

[28] Abhilash K. Desai and George T. Grossberg, “Recognition and Management of Behavioral Disturbances in Dementia,” Primary Care Companion Journal of Clinical Psychiatry, vol. 3(3) (2001), https://www.ncbi.nlm.nih.gov/pmc/articles/PMC181170/ (accessed September 8, 2017).

[29] Joseph E. Gaugler et al., “Direct Care Worker Training to Respond to the Behavior of Individuals With Dementia: The CARES Dementia-Related Behavior Online Program,” Gerontology & Geriatric Medicine, vol. 2 (2016), https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4755277/ (accessed September 8, 2017); Laura N. Gitlin et al., “Managing Behavioral Symptoms in Dementia Using Nonpharmacologic Approaches: An Overview,” Journal of the American Medical Association (JAMA), vol. 308(19) (2012), https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3711645/ (accessed September 8, 2017); Alice F. Bonner et al., “Rationales that Providers and Family Members Cited for the Use of Antipsychotic Medications in Nursing Home Residents with Dementia, Journal of the American Geriatrics Society, vol. 63(2) (2015), http://onlinelibrary.wiley.com/doi/10.1111/jgs.13230/full (accessed September 8 , 2017).

[30] Gitlin et al., “Managing Behavioral Symptoms in Dementia Using Nonpharmacologic Approaches: An Overview,” JAMA, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3711645/ (accessed August 16, 2019).

[31] Jessop, Tiffany et al. “Halting Antipsychotic Use in Long-Term Care (HALT): A Single-Arm Longitudinal Study Aiming to Reduce Inappropriate Antipsychotic Use in Long-Term Care Residents with Behavioral and Psychological Symptoms of Dementia,” 29.8 (2017): 1391–1403; and Testad, et. al, “The value of personalized psychosocial interventions to address behavioral and psychological symptoms in people with dementia living in care home settings: a systematic review,” International Psychogeriatrics, Vol. 26, Issue 7 (July 2014),

https://www.cambridge.org/core/journals/international-psychogeriatrics/a... (accessed August 9, 2019).

[32] Sung, Huei‐Chuan et al., “A Group Music Intervention Using Percussion Instruments with Familiar Music to Reduce Anxiety and Agitation of Institutionalized Older Adults with Dementia,” International Journal of Geriatric Psychiatry 27.6 (2012): 621–627.; Blackburn, R., and Bradshaw, T., “Music Therapy for Service Users with Dementia: A Critical Review of the Literature,” Journal of Psychiatric and Mental Health Nursing 21.10 (2014): 879–888. https://www.ncbi.nlm.nih.gov/pubmed/25303405 (accessed August 16, 2019).

[33] Kevin R. Scott and Anna M. Barrett, “Dementia Syndromes: Evaluation and Treatment,” Expert Review of Neurotherapeutics, vol. 7(4) (2007), https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2536654/pdf/nihms43078.pdf (accessed September 8, 2017); Desai and Grossberg, “Recognition and Management of Behavioral Disturbances in Dementia,” Primary Care Companion Journal of Clinical Psychiatry, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC181170/.

[34] Li, Junxin, and Porock, Davina, “Resident Outcomes of Person-Centered Care in Long-Term Care: A Narrative Review of Interventional Research.” International Journal of Nursing Studies 51.10 (2014): 1395–1415, https://www.ncbi.nlm.nih.gov/pubmed/24815772 (accessed August 16, 2019); Terada, Seishi et al., “Person-Centered Care and Quality of Life of Patients with Dementia in Long-Term Care Facilities.” Psychiatry Research 205.1-2 (2013): 103–108, https://www.ncbi.nlm.nih.gov/pubmed/22974519 (accessed August 16, 2019); Buchanan, Jeffrey A. et al. “Non-Pharmacological Interventions for Aggression in Persons with Dementia: A Review of the Literature,” The Behavior Analyst Today 8.4 (2007): 413–425, https://psycnet.apa.org/fulltext/2008-05985-003.html (accessed August 16, 2019); Dimitriou, T-D et al. “Non-Pharmacological Interventions for Agitation/aggressive Behaviour in Patients with Dementia: a Randomized Controlled Crossover Trial.” Functional Neurology 33.3 (2018): 143–147, https://www.ncbi.nlm.nih.gov/pubmed/30457967 (accessed August 16, 2019).

[35] World Health Organization (WHO), “Strategies to end the use of seclusion restraint and other coercive practices,” WHO Quality Rights Guidance and Training Tools, WHO/MSD/MHP/17.9, http://who.int/mental_health/policy/quality_rights/guidance_training_too... (accessed August 8, 2019).

[36] Ibid.

[37] Quality of Care Amendment (Minimising the Use of Restraints) Principles 2019, amendments to the Quality of Care Principles 2014.

[38] World Health Organization, Strategies to end the use of seclusion, restraint and other coercive practices, 2017 https://apps.who.int/iris/bitstream/handle/10665/254809/WHO-MSD-MHP-17.9... p. 16 (accessed September 30, 2019).

[39] In 2018, Human Rights Watch documented the use of antipsychotic drugs in older people in nursing facilities in the United States in the report “They Want Docile.” The US prohibits chemical restraint. https://www.hrw.org/report/2018/02/05/they-want-docile/how-nursing-homes... (accessed August 27, 2019).

[40] Nicola Gage, “Spriggs Family Searches for Answers after Father was Overmedicated at Oakden Mental Health Facility,” ABC News, January 18, 2017, https://www.abc.net.au/news/2017-01-18/sa-father-overmedicated-at-oakden... (accessed August 14, 2019).

[41] Carnell, K., Paterson, R., “Review of National Aged Care Quality Regulatory Processes,” Australian Government Department of Health, https://agedcare.health.gov.au/quality/review-of-national-aged-care-qual..., p. 50 (accessed August 8, 2019).

[42] Anne Connolly, “4 Corners: Who Cares?,” ABC, September 17, 2018 9:35 p.m. Australia,  https://www.abc.net.au/4corners/who-cares/10258290 (accessed August 7, 2019).

[43] As cited in Australian Senate Community Affairs References Committee, “Quality and Equity in Aged Care,” June 2005, https://www.aph.gov.au/Parliamentary_Business/Committees/Senate/Communit... P. 53 (accessed August 8, 2019).

[44] “Finding into Death without Inquest – Margaret Elizabeth Barton, Coroners Court of Victoria,” February 4, 2019, https://www.coronerscourt.vic.gov.au/sites/default/files/2019-02/Margare..., (accessed August 11, 2019).

[45] Australian Law Reform Commission, “Elder Abuse – A National Response,” 2017 https://www.alrc.gov.au/publications/elder-abuse-report p.251 (accessed August 8, 2019).

[46] Carnell and Patterson, Review of National Aged Care Quality Regulatory Processes of 2017, https://www.health.gov.au/sites/default/files/review-of-national-aged-ca..., p. 118 (accessed August 8, 2019).

[47] Review of National Aged Care Quality Regulatory Processes Report https://agedcare.health.gov.au/quality/review-of-national-aged-care-qual... p. 45 (accessed August 8, 2019).

[48] Office of the Public Advocate (Queensland), “Legal frameworks for the use of restrictive practices in residential aged care: An analysis of Australian and international jurisdictions, June 2017, https://agedcare.royalcommission.gov.au/publications/Documents/backgroun... (accessed August 20, 2019).

[49] Westbury, J.L., et al. “RedUSe: reducing antipsychotic and benzodiazepine prescribing in residential aged care facilities,” Medical Journal of Australia, May 14, 2018, https://www.mja.com.au/journal/2018/208/9/reduse-reducing-antipsychotic-..., (accessed August 7, 2019).

[50] Subject to the certain conditions, under the Pharmaceutical Benefits Scheme, pursuant to the National Health Act 1953.

[51] Westbury, J.L., et al., “RedUSe: reducing antipsychotic and benzodiazepine prescribing in residential aged care facilities.”

[52] Westbury, J.L., et al., “Psycholeptic use in aged care homes in Tasmania, Australia,” Journal of Clinical Pharmacy and Therapeutics, April 2010, https://www.ncbi.nlm.nih.gov/pubmed/20456737 (accessed August 7, 2019).

[53] See Australian Commission on Safety and Quality in Health Care, “Antipsychotic Medicines Dispensing 65 Years and Older,” 2015,  https://www.safetyandquality.gov.au/sites/default/files/migrated/SAQ201_... (accessed August 8, 2019); Hollingworth SA, et al., “Patterns of antipsychotic medication use in Australia 2002–2007,” https://www.ncbi.nlm.nih.gov/pubmed/20307170 (accessed August 8, 2019); Snowdon, J., et. al, “Patterns of psychotropic medication use in nursing homes: surveys in Sydney, allowing comparisons over time and between countries,” International Psychogeriatrics  (2011); and Hollingworth, S.A., et al., “Psychiatric drug prescribing in elderly Australians: time for action,” Australian and New Zealand Journal of Psychiatry  (2011).

[54] See, for example, LS Schneider et al., “Effectiveness of Atypical Antipsychotic Drugs in Patients with Alzheimer’s Disease,” New England Journal of Medicine, vol. 355(15) (2006), https://www.ncbi.nlm.nih.gov/pubmed/17035647 (accessed September 8, 2017); Philip S. Wang et al., “Risk of Death in Elderly Users of Conventional vs. Atypical Antipsychotic Medications,” New England Journal of Medicine, vol. 353 (2005), http://www.nejm.org/doi/full/10.1056/NEJMoa052827#t=article (accessed September 8, 2017); “Public Health Advisory: Deaths with Antipsychotics in Elderly Patients with Behavioral Disturbances,” US Food and Drug Administration, April 11, 2005, https://www.fda.gov/Drugs/DrugSafety/PostmarketDrugSafetyInformationforP... (accessed September 8, 2017); Office of Inspector General, “Medicare Atypical Antipsychotic Drug Claims for Elderly Nursing Home Residents,” https://oig.hhs.gov/oei/reports/oei-07-08-00150.pdf p. 3; “Information for Healthcare Professionals: Conventional Antipsychotics,” U.S. Food and Drug Administration, June 16, 2008, https://www.fda.gov/Drugs/DrugSafety/PostmarketDrugSafetyInformationforP... (accessed September 8, 2017).

[55] See US Food and Drug Administration, “Prescribing Information,” https://www.accessdata.fda.gov/drugsatfda_docs/label/2009/020272s056,020... (accessed August 16, 2019).

[56] Office of Inspector General, “Medicare Atypical Antipsychotic Drug Claims for Elderly Nursing Home Residents,” https://oig.hhs.gov/oei/reports/oei-07-08-00150.pdf (accessed August 16, 2019).

[57] Martin Steinberg and Constantine G. Lyketsos, “Atypical Antipsychotic Use in Patients with Dementia: Managing Safety Concerns,” American Journal of Psychiatry, vol. 169(9) (2012), https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3516138/pdf/nihms421959.pdf (accessed October 10, 2017); American Psychiatric Association (APA), The American Psychiatric Association Practice Guideline on the Use of Antipsychotics to Treat Agitation or Psychosis in Patients with Dementia, (Arlington, Virginia: APA, 2016), http://psychiatryonline.org/doi/pdf/10.1176/appi.books.9780890426807 (accessed September 8, 2017).

[58] “Antipsychotic drugs such as risperidone and quetiapine are often used to manage behavioural symptoms of dementia.” Juanita Westbury, “Chemical Restraint Has No Place in Aged Care, But Poorly Designed Reforms Can Easily Go Wrong,” The Conversation, February 26, 2019, http://theconversation.com/chemical-restraint-has-no-place-in-aged-care-... (accessed August 19, 2019).

[59] Australian government’s Department of Health Therapeutic Goods Administration, “Medicines Safety Update Volume 6 Number 4, August 2015,” August 2, 2015,

 https://www.tga.gov.au/publication-issue/medicines-safety-update-volume-... (accessed July 1, 2019); See chart of antipsychotics for older people with dementia in Australia.

[60] Letter from David Hallinan, A/G deputy secretary, ageing and aged care, general manager, policy and advocacy, Australian government Department of Health, to Human Rights Watch, October 7, 2019 (see Annex I).

[61] Risperdal Product Information, https://www.ebs.tga.gov.au/ebs/picmi/picmirepository.nsf/pdf?OpenAgent&i... (accessed August 15, 2019).

[62] “Olanzapine is not approved for the treatment of patients with dementia-related psychosis.” Olanzapine AN Product Information, https://www.ebs.tga.gov.au/ebs/picmi/picmirepository.nsf/pdf?OpenAgent&i... (accessed August 15, 2019); “Quetiapine is not approved for the treatment of elderly patients with dementia-related psychosis or behavioural disorders,” Seroquel Product Information, https://www.ebs.tga.gov.au/ebs/picmi/picmirepository.nsf/pdf?OpenAgent&i... (accessed August 15, 2019).

[63] Prescribing Information on the US Food and Drug Administration’s website: “[Risperidone] is not approved for use in patients with dementia-related psychosis.” https://www.accessdata.fda.gov/drugsatfda_docs/label/2009/020272s056,020... (accessed August 27, 2019).

[64] Amneal Pharma Australia Pty Ltd, Olanzapine AN Product Information, “In placebo-controlled clinical trials of elderly patients with dementia-related psychosis, the incidence of death in olanzapine-treated patients was significantly greater than placebo-treated patients (3.5% vs 1.5%) respectively. Risk factors that may predispose this patient population to increased mortality when treated with olanzapine include age >80 years, sedation, concomitant use of benzodiazepines, or presence of pulmonary conditions (e.g. pneumonia, with or without aspiration).” Found on the website of the Australian government’s Department of Health Therapeutic Goods Administration, https://www.ebs.tga.gov.au/ebs/picmi/picmirepository.nsf/pdf?OpenAgent&i... (accessed August 30, 2019).

[65] Ibid., Olanzapine AN Product Information, “Olanzapine is not approved for the treatment of patients with dementia-related psychosis.”

[66] Janssen, Risperdal, Risperdal Oral Solution Product Information, “Elderly patients with dementia treated with atypical antipsychotic medicines have an increased mortality compared to placebo in a meta-analysis of 17 controlled trials of atypical antipsychotic drugs, including RISPERDAL. In placebo-controlled trials with RISPERDAL in this population, the incidence of mortality was 4.0% (40/1009) for RISPERDAL treated patients and 3.1% (22/712) for placebo treated patients. The mean age (range) of patients who died was 86 years (range 67-100).” Found on the website of the Australian government’s Department of Health Therapeutic Goods Administration, https://www.ebs.tga.gov.au/ebs/picmi/picmirepository.nsf/pdf?OpenAgent&i... (accessed August 30, 2019).

[67] Australian government’s Department of Health Therapeutic Goods Administration, “Medicines Safety Update Volume 6 Number 4, August 2015,” August 2, 2015,

 https://www.tga.gov.au/publication-issue/medicines-safety-update-volume-... (accessed July 1, 2019).

[68] AstraZeneca, Seroquel Product Information, “A meta-analysis of seventeen placebo controlled trials with dementia related behavioural disorders showed a risk of death in the drug-treated patients of approximately 1.6 to 1.7 times that seen in placebo-treated patients. The clinical trials included in the meta-analysis were undertaken with olanzapine, aripiprazole, risperidone and quetiapine.” Found on the website of the Australian government’s Department of Health Therapeutic Goods Administration, https://www.ebs.tga.gov.au/ebs/picmi/picmirepository.nsf/pdf?OpenAgent&i... (accessed August 30, 2019).

[69] Ibid., “Quetiapine is not approved for the treatment of elderly patients with dementia-related psychosis or behavioural disorders.”

[70] Australian government’s Department of Health Therapeutic Goods Administration, “Medicines Safety Update Volume 6 Number 4, August 2015,” August 2, 2015,

 https://www.tga.gov.au/publication-issue/medicines-safety-update-volume-... (accessed July 1, 2019); See chart relating Australian government approvals of antipsychotics for older people with dementia.

[71] CRPD Committee, General Comment No. 1, para. 41, citing CRPD arts. 15-17.

[72] Human Rights Watch interview with [name withheld], Southern Queensland, March 21, 2019.

[73] Human Rights Watch interview with [name withheld], Southern Queensland, March 21, 2019.

[74] Human Rights Watch interview with [name withheld], Victoria, March 25, 2019.

[75] Human Rights Watch interview with [name withheld], Queensland, March 17, 2019.

[76] Human Rights Watch interview with [name withheld], Southern Queensland, March 17, 2019.

[77] Human Rights Watch video conference interview with Raylene Liddicoat, June 3, 2019.

[78] Human Rights Watch interview with Michal Browne, Southern Queensland, March 18, 2019.

[79] Human Rights Watch interview with Michal Browne, Southern Queensland, March 18, 2019.

[80] Human Rights Watch interview with [name withheld], Northern Queensland, March 19, 2019.

[81] Human Rights Watch interview with [name withheld], Southern Queensland, March 21, 2019.

[82] Human Rights Watch telephone interview with Dr. Harry McConnell, July 5, 2019.

[83] Human Rights Watch interview with Denise Fenech, Queensland, March 22, 2019.

[84] Human Rights Watch video conference interview with Raylene Liddicoat, June 3, 2019.

[85]“Akthasia,” Lexico Dictionary, https://www.lexico.com/en/definition/akathisia (accessed August 19, 2019).

[86] Human Rights Watch telephone interview with Deanne Morris, January 23, 2019;  Report into the medication management of Pamela Passlow by Dr Juanita Breen, July 2, 2019, on file with Human Rights Watch.

[87] Human Rights Watch telephone interview with Dr. Harry McConnell, July 5, 2019.

[88] Human Rights Watch video conference interview with Raylene Liddicoat, June 3, 2019.

[89] Human Rights Watch interview with Veronica, New South Wales [exact location withheld], July 17, 2019.

[90] Human Rights Watch interview with Veronica, New South Wales [exact location withheld], July 17, 2019.

[91] Human Rights Watch video conference interview with Dr. Harry McConnell, July 5, 2019.

[92] Human Rights Watch telephone interview with Juanita Breen (Westbury), January 23, 2019.

[93] Human Rights Watch interview with [name withheld], Southern Queensland, March 17, 2019.

[94] Human Rights Watch interview with [name withheld], Southern Queensland, March 21, 2019.

[95] Human Rights Watch interview with [name withheld], Southern Queensland, March 21, 2019.

[96] Human Rights Watch interview with Mark Viney, Southern Queensland, March 18, 2019.

[97] Human Rights Watch interview with facility manager, Queensland, July 19, 2019.

[98] Human Rights Watch interview with Veronica, New South Wales [exact location withheld], July 17, 2019.

[99] Australian Law Reform Commission, “Review of State and Territory Legislation: Informed Consent to Medical Treatment,” 2017) https://www.alrc.gov.au/publications/10-review-state-and-territory-legis... (accessed August 17, 2019); it further notes that “Any new approach to informed consent would need to be reflected in guidance such as the Australian Charter of Rights in Healthcare, the National Safety and Quality Health Service Standards, the National Framework on Advance Care Directives, publications on communication with patients and the national codes of conduct of health practitioners.”

[100] COAG Health Council, A National Code of Conduct for Health Care Workers, 2015, https://www.aasw.asn.au/document/item/735.

[101] Letter from David Hallinan, A/G deputy secretary, ageing and aged care, general manager, policy and advocacy, Australian government Department of Health, to Human Rights Watch, October 7, 2019, p.3 (see Annex I).

Inquiry into Quality of Care Amendment (Minimising the Use of Restraints) Principles 2019, https://www.aph.gov.au/~/media/Committees/Senate/committee/humanrights_ctte/activity/Quality%20of%20Care/Health%20department%20answers%20to%20QoN.pdf?la=en (accessed September 23, 2019).

[102] Ibid.

[103] Aged Care (Single Quality Framework) Reform Act 2019, Federal Register of Legislation, March 25, 2019. https://www.legislation.gov.au/Details/C2018A00102.

[104] Aged Care Quality and Safety Commission, Guidance and Resources for Providers to support the Aged Care Quality Standards, Standard 1(3)(c), https://agedcarequality.govcms.gov.au/sites/default/files/media/Guidance%20and%20resources%20for%20providers%20to%20support%20the%20Aged%20Care%20Quality%20Standards%20v3.pdf p. 17. (accessed 9/23/2019).

[105] Ibid., p. 19.

[106] See Section V on International Standards, below.

[107] Human Rights Watch interview with [name withheld], Southern Queensland, March 21, 2019.

[108] Human Rights Watch interview with [name withheld], Northern Queensland, March 19, 2019.

[109] Human Rights Watch telephone interview with Susan Ryan, New South Wales, June 24, 2019.

[110] Human Rights Watch interview with Mark Viney, Southern Queensland, March 18, 2019.

[111] Human Rights Watch interview with [name withheld], Southern Queensland, March 21, 2019.

[112] Human Rights Watch interview with Silvio Proy, Victoria, March 25, 2019.

[113] Human Rights Watch interview with Edgard Proy, Victoria, March 25, 2019.

[114] Human Rights Watch interview with Mark Viney, Southern Queensland, March 18, 2019.

[115] Human Rights Watch telephone interview with Susan Ryan, New South Wales, June 24, 2019.

[116] Human Rights Watch telephone interview with Susan Ryan, New South Wales, June 24, 2019.

[117] Human Rights Watch video call interview with [name withheld], July 13, 2019.

[118] Human Rights Watch interview with [name withheld], Southern Queensland, March 17, 2019.

[119] About Us, Australian Government Aged Care Quality and Safety Commission, April 12, 2019, https://www.agedcarequality.gov.au/about-us; Aged Care Quality and Safety Commission Rules 2018. Federal Register of Legislation, 2018, https://www.legislation.gov.au/Series/F2018L01837; Aged Care Legislation Amendment (Single Quality Framework Consequential Amendments and Transitional Provisions) Instrument 2019, Federal Register of Legislation, March 25, 2019. https://www.legislation.gov.au/Details/F2019L00515.

[120] About Us. Australian Government Aged Care Quality and Safety Commission. 12 April 2019. https://www.agedcarequality.gov.au/about-us.

[121] About Us. Australian Government Aged Care Quality and Safety Commission. 12 April 2019. https://www.agedcarequality.gov.au/about-us.

[122] The Complaints Process. Australian Government Aged Care Quality and Safety Commission. January 24, 2019. https://www.agedcarequality.gov.au/making-complaint/complaints-process (accessed August 16, 2019).

[123] Resolving concerns about aged care, Australian Government Aged Care Quality and Safety Commission, https://www.agedcarequality.gov.au/sites/default/files/media/acqsc_resol... (accessed August 16, 2019).

[124] Ibid.

[125] Letter from David Hallinan, A/G deputy secretary, ageing and aged care, general manager, policy and advocacy, Australian government Department of Health, to Human Rights Watch, October 7, 2019 p. 6 (see Annex I).

[126] Australian Health Practitioner Regulation Agency, “Other Health Complaints Organizations,” April 2019, https://www.ahpra.gov.au/notifications/further-information/health-compla... (accessed August 14, 2019). Referrals to Other Organizations. Australian Government Aged Care Quality and Safety Commission, December 21, 2018. https://www.agedcarequality.gov.au/making-complaint/referrals-other-orga... (accessed August 14, 2019).

[127] See, for example Queensland Courts, Coroners Court, https://www.courts.qld.gov.au/courts/coroners-court (accessed October 2, 2019).

[128] For example, in Queensland and Victoria the conduct must be “unprofessional conduct,” “unsatisfactory professional performance” or “professional misconduct.” Health Practitioner Regulation National Law (Qld), sec. 5; Health Practitioner Regulation National Law (Vic) sec. 5; in New South Wales, the conduct must be “unsatisfactory professional conduct” or “professional misconduct” Health Practitioner Regulation National Law (NSW), sec. 139B and 139E.    

[129] Aged Care Complaints Commissioner, Annual Report 2017-2018, https://www.agedcarequality.gov.au/sites/default/files/media/aged_care_c... (accessed August 14, 2019).

[130] Resolving concerns about aged care, Australian Government Aged Care Quality and Safety Commission.

[131] Letter from David Hallinan, A/G deputy secretary, ageing and aged care, general manager, policy and advocacy, Australian government Department of Health, to Human Rights Watch, October 7, 2019 p. 2 (see Annex I).

[132] Right to seek review of complaint decision or Commission’s process factsheet, Australian Government Aged Care Quality and Safety Commission, December 31, 2018, https://www.agedcarequality.gov.au/resources/right-seek-review-complaint....

[133] Human Rights Watch interview with [name withheld], Queensland, March 17, 2019.

[134] Human Rights Watch interview with [name withheld], Southern Queensland, March 21, 2019.

[135] Human Rights Watch interview with [name withheld], Southern Queensland, March 21, 2019.

[136] Email provided to Human Rights Watch from [name withheld], dated November 7, 2017.

[137] Human Rights Watch interview with [name withheld], Southern Queensland, March 21, 2019.

[138] Human Rights Watch interview with Mark Viney, Southern Queensland, March 18, 2019.

[139] Human Rights Watch interview with [name withheld], Victoria, March 25, 2019.

[140] Human Rights Watch interview with [name withheld], Victoria, March 25, 2019.

[141] Human Rights Watch interview with [name withheld], Victoria, March 25, 2019.

[142] Human Rights Watch interview with [name withheld], Victoria, March 25, 2019.

[143] Human Rights Watch interview with Julie McAdams, Victoria, March 24, 2019.

[144] Human Rights Watch correspondence with Julie McAdams, August 5, 2019.

[145] Human Rights Watch interview with [name withheld], Victoria, March 27, 2019.

[146] Council of Attorneys General, National Plan to Respond to the Abuse of Older Australians (Elder Abuse) 2019-2023 https://www.ag.gov.au/RightsAndProtections/protecting-the-rights-of-older-australians/Documents/National-plan-to-respond-to-the-abuse-of-older-australians-elder.pdf, p. 3 (accessed September 20, 2019).

[147] Prime Minister’s Media Release, “Royal Commission of Inquiry into Aged Care Quality and Safety,” September 16, 2018, https://www.pm.gov.au/media/royal-commission-aged-care-quality-and-safety (accessed August 7, 2019).

[148] Royal Commission into Aged Care Quality and Safety, Terms of Reference, https://agedcare.royalcommission.gov.au/Pages/Terms-of-reference.aspx (accessed August 14, 2019).

[149] Julie Power, “Staff Ignored Requests for Heart Medicine, Aged-Care Commission Hears,” The Sydney Morning Herald, May 6, 2019, https://www.smh.com.au/national/staff-ignored-requests-for-heart-medicin... (accessed August 14, 2019).

[150] See, Royal Commission into Aged Care Quality and Safety, Publications, https://agedcare.royalcommission.gov.au/publications/Pages/default.aspx  (accessed August 12, 2019).

[151] Aged Care Quality and Safety Commission, Guidance Resources for Providers to Support Aged Care Quality Standards, https://www.agedcarequality.gov.au/sites/default/files/media/Guidance%20... p. 62 (accessed August 28, 2019).

[152] Aged Care Quality and Safety Commission, Guidance Resources for Providers to Support Aged Care Quality Standards p. 63.

[153] Ibid. “Organisations providing clinical care are expected to make sure it is best practice” p. 188; “the organisation should have systems to manage how restraints are used.” p. 184.

[154] Department of Health, Aged Care Quality Standards, https://agedcare.health.gov.au/ensuring-quality/quality-indicators-for-a... (accessed August 8, 2019).

[155] Australia Department of Health, Aged Care Quality Standards.

[156] Ibid.

[157] “Ramping Up Inspections Not Enough to Improve Aged Care Experts Warn,” The Guardian, January 3, 2019, https://www.theguardian.com/australia-news/2019/jan/04/ramping-up-nursin... (accessed August 8, 2019).

[158] ACQSC, “Sector Performance Data,” https://www.agedcarequality.gov.au/sector-performance (accessed August 16, 2019).

[159] Letter from David Hallinan, A/G deputy secretary, ageing and aged care, general manager, policy and advocacy, Australian government Department of Health, to Human Rights Watch, October 7, 2019 p.1 (see Annex I).

[160] Parliamentary Joint Committee on Human Rights Hearing August 20, 2019, https://www.aph.gov.au/Parliamentary_Business/Committees/Joint/Human_Rights/QualityCareAmendment/Public_Hearings (accessed September 20, 2019).

[161] Quality of Care Amendment (Minimising the Use of Restraints) Principles 2019, amendments to the Quality of Care Principles 2014. Protections regarding physical restraint include a health practitioner’s assessment; exhaustion of and documentation of alternatives; that physical restraint is the least restrictive choice; and informed consent of the person involved or their representative, unless necessary in an emergency. Quality of Care Principles 2014 (Cth), sec. 15F(1).

[162] Letter from David Hallinan, A/G deputy secretary, ageing and aged care, general manager, policy and advocacy, Australian government Department of Health, to Human Rights Watch, October 7, 2019 p. 3 (see Annex I).

[163] See Parliamentary Joint Committee on Human Rights Hearing August 20, 2019, “Inquiry Into Quality of Care Amendment (Minimising the Use of Restraints) Principles 2019,” https://www.aph.gov.au/Parliamentary_Business/Committees/Joint/Human_Rights/QualityCareAmendment/Public_Hearings (accessed September 20, 2019).

[164] Ibid.

[165] See Parliamentary Joint Committee on Human Rights, “Inquiry Into Quality of Care Amendment (Minimising the Use of Restraints) Principles 2019,” https://www.aph.gov.au/Parliamentary_Business/Committees/Joint/Human_Rights/QualityCareAmendment/Public_Hearings  (accessed August 12, 2019).

[166] Letter from David Hallinan, A/G deputy secretary, ageing and aged care, general manager, policy and advocacy, Australian government Department of Health, to Human Rights Watch, October 7, 2019 p. 1. See Annex I.

[167] Ibid., p. 3.

[168] Letter from Tim Hicks, general manager, policy and advocacy, Leading Age Services Australia, to Human Rights Watch, July 3, 2019. See Annex V.

[169] Aged Care Act 1997, Federal Register of Legislation, C2019C00199, Chapter 4.1 Division 54-1(b).

[170] See UN Committee on Economic, Social and Cultural Rights (CESCR), General Comment No. 14: The Right to the Highest Attainable Standard of Health (Art. 12 of the Covenant), August 11, 2000, E/C.12/2000/4, available at: https://www.refworld.org/docid/4538838d0.html  (accessed September 28, 2019), para. 129d).

[171] Letter to Prime Minister Scott Morrison, dated December 15, 2018, http://anmf.org.au/images/uploads/Joint_Letter_To_ScottMorrison.jpg (accessed September 19, 2019).

[172] John R. Bowblis, “Staffing Ratios and Quality: An Analysis of Minimum Direct Care Staffing Requirements for Nursing Homes,” Health Research Services Research, vol. 46(5) (2011), https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3207189/pdf/hesr0046-1495.pdf (accessed September 10, 2017); NB Lerner et al., “Are Nursing Home Survey Deficiencies Higher in Facilities with Greater Staff Turnover,” Journal of the American Medical Directors Association, vol. 15(2) (2014), https://www.ncbi.nlm.nih.gov/pubmed/24139163 (accessed September 10, 2017); HY Lee et al., “The Effects of RN Staffing Hours on Nursing Home Quality: A two-stage model,” International Journal of Nursing Studies, vol. 51(3) (2014), https://www.ncbi.nlm.nih.gov/pubmed/24182619 (accessed September 10, 2017).

[173] Human Rights Watch telephone interview with Elsa, July 13, 2019.

[174] Human Rights Watch telephone interview with [name withheld], Queensland, March 22, 2019.

[175] Human Rights Watch interview with Veronica, New South Wales [exact location withheld], July 17, 2019.

[176] Australian Nursing and Midwifery Federation, “National Aged Care Survey 2019,” http://anmf.org.au/documents/reports/ANMF_Aged_Care_Survey_Report_2019.pdf (accessed August 7, 2019).

[177] Human Rights Watch interview with [name withheld], Northern Queensland, March 19, 2019.

[178] Human Rights Watch interview with Kate, New South Wales [exact location withheld], July 17, 2019.

[179] Human Rights Watch interview with Juanita Breen (formerly Westbury), January 23, 2019.

[180] Gozalo, Pedro et al., “Effect of the Bathing Without a Battle Training Intervention on Bathing‐Associated Physical and Verbal Outcomes in Nursing Home Residents with Dementia: A Randomized Crossover Diffusion Study,” Journal of the American Geriatrics Society 62.5 (2014): 797–804. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5584541/ (accessed August 16, 2019).

[181] Letter from Pat Sparrow, chief executive officer, Aged and Community Care Services, to Human Rights Watch, July 7, 2019. See Annex IV.

[182] International Covenant on Civil and Political Rights, adopted December 16, 1996, G.A. Res. 2200A (XXI), 21 U.N. GAOR Supp. (No. 16) at 52, U.N. Doc A/6316 (1966), art. 7; Convention against Torture and Other Cruel, Inhuman or Degrading Treatment or Punishment, adopted December 10, 1984, G.A. Res. 39/46, Annex 39, U.N. GAOR Supp. (No. 51) at 197, U.N. Doc. A/810 at 71 (1948), art. 37; Convention on the Rights of Persons with Disabilities (CRPD), adopted December 13, 2006, G.A. Res. 61/106, Annex I, U.N. GAOR, 61st Sess., Supp. (No. 49) at 65, U.N. Doc. A/61/49 (2006), art. 15.

[183] CRPD, art. 1.

[184] Committee on the Rights of Persons with Disabilities, Concluding observations on the initial report of Australia, adopted by the Committee at its tenth session (2-13 September 2013), U.N. Doc CRPD/C/AUS/CO/1, para. 35.

[185] Ibid., para. 36.

[186] UN Human Rights Council, Report of the special rapporteur on torture and other cruel, inhuman or degrading treatment or punishment, Juan E. Méndez, A/HRC/22/53, February 1, 2013, http://www.ohchr.org/Documents/HRBodies/HRCouncil/RegularSession/Session22/A.HRC.22.53_English.pdf , para. 28.

[187] Ibid., para. 32.

[188] Ibid., para. 22.

[189] Ibid., para. 32.

[190] Ibid.

[191] Ibid., para 63.

[192] International Covenant on Economic, Social and Cultural Rights, G.A. Res. 2200A (XXI), 21 U.N. GAOR Supp. (No. 16) at 49, U.N. Doc. A/6316 (1966), art. 12; CRPD, art. 25. 

[193] UN Committee on Economic, Social and Cultural Rights (CESCR), General Comment No. 14: The Right to the Highest Attainable Standard of Health (Art. 12 of the Covenant), August 11, 2000, E/C.12/2000/4, available at: https://www.refworld.org/docid/4538838d0.html  (accessed September 28, 2019), para. 43.

[194] Ibid., para. 49.

[195] See CRPD, art. 25 (“States Parties recognize that persons with disabilities have the right to the enjoyment of the highest attainable standard of health without discrimination on the basis of disability.” Article 25(d) further specifies that states shall: “[r]equire health professionals to provide care of the same quality to persons with disabilities as to others, including on the basis of free and informed consent” [emphasis added].).

[196] CRPD Committee, General Comment No. 1, para. 41, citing CRPD arts. 14 and 25.

[197] Ibid., para. 42, citing CRPD arts. 15-17.

[198] CRPD Committee, General Comment No. 1, para. 21.

[199] UN Human Rights Council, Report of the special rapporteur on the right of everyone to the enjoyment of the highest attainable standard of physical and mental health, Dainius Puras, A/HRC/35/21, March 28, 2017, https://documents-dds-ny.un.org/doc/UNDOC/GEN/G17/076/04/PDF/G1707604.pd... (accessed September 10, 2017), para. 63.

[200] UN General Assembly, Report of the special rapporteur on the right of everyone to the enjoyment of the highest attainable standard of physical and mental health, A/64/272, August 10, 2009, http://www.refworld.org/docid/4aa762e30.html (accessed September 10, 2017), para. 9; UN Human Rights Council, Report of the special rapporteur on torture and other cruel, inhuman or degrading treatment or punishment, Juan E. Méndez, February 1, 2013, http://www.ohchr.org/Documents/HRBodies/HRCouncil/RegularSession/Session..., para. 28.

[201] UN Human Rights Council, Report of the special rapporteur on torture and other cruel, inhuman or degrading treatment or punishment, Juan E. Méndez, February 1, 2013, http://www.ohchr.org/Documents/HRBodies/HRCouncil/RegularSession/Session..., para. 28.

[202] UN Human Rights Council, Report of the special rapporteur on the right of everyone to the enjoyment of the highest attainable standard of physical and mental health, Dainius Puras, March 28, 2017, https://reliefweb.int/sites/reliefweb.int/files/resources/G1707604.pdf, para. 65.

[203] Ibid.

[204] Joint Parliamentary Human Rights Committee, Human Rights Scrutiny Report 13 of 2018, December 4, 2018

https://www.aph.gov.au/~/media/Committees/Senate/committee/humanrights_c... para 2.134 (accessed August 29, 2019).

[205] Joint Parliamentary Human Rights Committee, Human Rights Scrutiny Report 9 of 2018, 11 September 2018, https://www.aph.gov.au/Parliamentary_Business/Committees/Joint/Human_Rights/Scrutiny_reports/2018/Report_9_of_2018, paras 1.36 and 1.41 (accessed August 29, 2019).

[206] Guardianship Regulations 2016 (NSW).

[207] Ibid. secs. 9, 45.

[208] Office of the Public Advocate, “Legal frameworks for the use of restrictive practices in residential aged care: An analysis of Australian and international jurisdictions,” June 2017, (see https://www.justice.qld.gov.au/__data/assets/pdf_file/0005/524426/restri...) (accessed September 19, 2019).

[209] Royal Commission into Aged Care Quality and Safety, Restrictive Practices in Residential Aged Care in Australia, Background Paper 4, May 2019, https://agedcare.royalcommission.gov.au/publications/Documents/backgroun..., p. 1; Office of the Public Advocate (Queensland), Legal frameworks for the use of restrictive practices in residential aged care: An analysis of Australian and international jurisdictions, June 2017, https://www.justice.qld.gov.au/__data/assets/pdf_file/0005/524426/restrictive-practices-in-aged-care-final.pdf,

pp. 6-7; Secretary, Department of Health and Community Services v J.W.B. and S.M.B. (Marion’s Case) (1992) 175 CLR 218.

[210] See, for example, Equal Opportunity Act 2010 (Vic), sec. 6(a), 7-9, 44 and 53; Anti-Discrimination Act 1977 (NSW), sec. 49ZYA, 49ZYN and 49ZYO; Anti-Discrimination Act 1991 (Qld), sec. 7(f), 8-11, 46 and 83 and  Equal Opportunity Act 2010 (Vic), sec. 6(e), 7-9, 44-45 and 53; Anti-Discrimination Act 1977 (NSW), sec. 49A-49C, 49M and 49N; Anti-Discrimination Act 1991 (Qld), sec. 7(h), 8-11, 46 and 83. 

[211] Age Discrimination Act 2004 (Cth), secs. 28 and 29.  

[212] Ibid., sec. 14.

[213] Ibid., sec. 15.

[214] Disability Discrimination Act 1992 (Cth), sec. 4; ibid., secs. 24 and 25. 

[215] Ibid., sec. 5.

[216] Ibid., sec. 6.

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

President Mohamed Ould Ghazouani

Islamic Republic of Mauritania

Nouakchott, Mauritania

Re: Women’s Rights and Gender-based Violence

Dear President Ould Ghazouani, 

Human Rights Watch is an international nongovernmental organization that documents human rights violations and advocates for change in over 90 countries. Over the past two years, we have engaged constructively with the Mauritanian government over key issues that included women’s rights and freedom of speech. We met with the ministers of justice, interior, social affairs, childhood and family and with the president of the national human rights commission to discuss our findings and recommendations. 

We are writing at the beginning of your presidency to urge you to take decisive steps to improve women’s rights and to tackle the prevalence of gender-based violence nationally. 

In 2018, Human Rights Watch in consultation with Mauritanian NGOs conducted extensive research on gender-based violence and published its findings in a report entitled “They Told Me to Keep Quiet: Obstacles to Justice and Remedy for Sexual Assault Survivors in Mauritania,” issued on September 5, 2018. We found that:

  • Taboo, societal pressure, and stigma surrounding gender-based violence deters women and girls who are affected from breaking the silence;
  • Women and girls who report rape incidents to the authorities risk prosecution for engaging in sexual relations outside marriage (also known as zina);
  • Survivors must navigate a system that discourages them from making complaints and provides inadequate victim-support services; and 
  • Civil society organizations, that have limited means, too often inadequately fill in the existing protection gap throughout the country that should be filled by the government. 

Human Rights Watch has shared its findings with the Mauritanian government and urged it to:

  • Cease prosecutions and detentions for so-called zina cases and decriminalize the offense; 
  • Adopt a law on gender-based violence in line with international standards; and
  • Allocate adequate funding to create specialized prosecutorial units, implement periodic gender-responsive trainings of law-enforcement officials, ensure greater access to medical care and forensic examinations for survivors, open shelters throughout the country equipped to house and provide direct support services to survivors, and increase financial support to civil society organizations currently supporting survivors. 

In May 2019, Human Rights Watch researchers returned to Nouakchott to interview one of the survivors and activists whose experience and expertise informed our research for the report. We met again with Rouhiya (name changed to protect her identity), a young woman who was sexually abused repeatedly by her father and was pregnant as a result of rape by him at the time of her initial interview. Absent shelters in Nouakchott and absent government support, Rouhiya remains forced to live in her abusive home, taking care of her newborn, with a father who continues to be physically violent. Women’s rights activists we spoke to continue to deplore the lack of government action and lawmakers’ refusal to adopt a gender-based violence law that would provide a framework for accountability and protection, and institutionalize support services for survivors, such as Rouhiya. 

Human Rights Watch is deeply concerned that the National Assembly rejected the draft gender-based violence law in December 2018, for the second time. The draft law, supported by the ministry of justice and approved by the Senate in 2016, included key input from civil society leaders, aimed at creating a new protection framework for survivors. It especially provided key definitions and criminal sentences for rape and sexual harassment, authorized civil society organizations to bring cases on behalf of survivors, allowed judges to issue restraining orders against alleged perpetrators and obligated the government to create shelters with short and long-term accommodation options. Despite these positive features of the draft law, we regret that the bill does not repeal provisions of the Penal Code criminalizing consensual sexual relations, defines rape and sexual assault too narrowly and maintains references in the penal code to forms of punishments amounting to cruel, inhumane and degrading treatment, such as death by stoning or flogging. While your newly formed government defines Mauritania’s new policy orientations, we urge you to demonstrate your commitment to women’s rights by making such law reform a priority. 

We would welcome a meeting with you and with senior members of your administration to further discuss our recommendations on women’s rights and more specifically on the draft gender-based violence law and remain at your disposal for any questions or clarifications. We would be grateful to hear back from you concerning the availability of yourself and of other pertinent officials to meet with a Human Rights Watch delegation. 

A response to our request can be directed to my colleague, XXXXXXX, Middle East and North Africa coordinator, via email at  XXXXXXX. 

Sincerely, 

Sarah Leah Whitson

Executive Director

Middle East and North Africa Division

Human Rights Watch

Posted: January 1, 1970, 12:00 am

Aminetou Mint Ely [center, holding phone], president of the Association of Women Heads of Family and staff of a support center for survivors of gender-based violence, run by the association, Rosso, Mauritania, February 7, 2018. 

© 2018 Candy Ofime/Human Rights Watch

(Tunis) – Mauritania’s President Mohamed Ould Ghazouani should prioritize women’s rights during his administration, Human Rights Watch said today in a letter to the new president. In particular, he should take steps to reduce the high incidence of gender-based violence and ensure that victims have access to justice.

After extensive research on the ground in 2018 and 2019, Human Rights Watch found that the lack of strong laws on gender-based violence and of institutions to provide assistance to victims, along with social pressures and stigma, dissuade women and girls from seeking help and remedies when they are abused. The authorities provide inadequate medical, mental health, and legal support services to victims, letting nongovernmental organizations fill the protection gap as best they can with limited means. In addition, survivors of rape who complain to authorities risk prosecution for engaging in sexual relations outside marriage if they cannot convince the court that they were raped.

“President Ould Ghazouani should set a new tone for his presidency by demonstrating zero tolerance for gender-based violence,” said Sarah Leah Whitson, Middle East and North Africa director at Human Rights Watch. “Mauritania’s women should not have to suffer rape and other forms of violence in silence.”

The authorities in Mauritania should stop prosecuting or detaining men and women in cases of sexual relations outside of marriage, known as zina. Human Rights Watch said the government should also decriminalize this offense, to harmonize Mauritanian laws with international conventions protecting the right of privacy and personal autonomy.

Ould Ghazouani should press parliament to pass a pending 2016 draft bill on gender-based violence. He should ensure that the law defines rape in terms broader than the definition in the current draft, and that it criminalizes all other forms of sexual violence.

The president should also support eliminating from the penal code all punishments that amount to cruel, inhuman, and degrading treatment, such as death by stoning or flogging – even though Mauritania has an effective current moratorium on carrying out such punishments.

The government should allocate more funding to assisting victims of violence, such as by establishing short-term and long-term shelters, and by creating specialized prosecutorial units to pursue sexual violence cases.

Mauritania should also remove all its remaining reservations to articles 13(a) and 16 of the international Convention on the Elimination of All Forms of Discrimination against Women, which relate to eliminating discrimination involving family benefits and requiring equality in marriage and family matters.

Posted: January 1, 1970, 12:00 am

A foreign worker climbs scaffolding at the Al-Wakra Stadium that is under construction for the 2022 World Cup, in Doha, Qatar. 

© 2015 AP Photo/Maya Alleruzzo
 
UPDATE:

 

In response to this press release, Qatar’s Government Communications Office stated on October 10 that labor inspectors shut down 300 work sites for violating the existing regulations on prohibited working hours between 15 June and 31 August 2019. On October 11, 2019, a study prepared by the FAME Laboratory and commissioned by the ILO, the Ministry of Labor, and the Supreme Committee for Delivery and Legacy revealed the ineffectiveness of the summer working hours ban, found that individuals working outdoors are “potentially performing their job under significant occupational heat stress conditions for at least four months of the year,” and made recommendations for improving heat stress mitigation plans. While Qatar’s Ministry of Labor had disseminated enhanced guidelines on heat stress aimed at workers and employers in mid-April, these guidelines are not comprehensive or obligatory for employers and do not come with any enforcement mechanisms.

(Beirut) – Qatar should thoroughly and urgently investigate and publicize the underlying causes of migrant worker deaths in light of new medical research concluding that heatstroke is a likely cause of cardiovascular fatalities among these workers in Qatar, Human Rights Watch said today. Qatari authorities should also immediately adopt and enforce adequate restrictions on outdoor work to protect workers from potentially fatal heat-related risks.

Research published in the Cardiology Journal in July by a group of climatologists and cardiologists explored the relationship between the deaths of more than 1,300 Nepali workers between 2009 and 2017 and heat exposure. They found a strong correlation between heat stress and young workers dying of cardiovascular problems in the summer months. An October Guardian analysis of official weather data over a nine-year period also emphasized that workers laboring outside of the times prohibited by a summer working hours ban in Qatar are still regularly being exposed to potentially fatal levels of heat stress.

“The sudden and unexpected deaths of often young and healthy migrant workers in Qatar have gone uninvestigated by Qatari authorities, in apparent disregard for workers’ lives,” said Sarah Leah Whitson, Middle East director at Human Rights Watch. “Qatar cannot claim to uphold migrant workers’ rights as long as it ignores urgent and repeated calls for lifesaving reforms that protect workers from the heat.”

According to a second Guardian investigation published on October 7 that relied on data obtained from official Nepali and Indian sources, the cause of death of 676 of at least 1,025 Nepalis who died in Qatar between 2012 and 2017 and 1,345 of 1,678 Indians who died in Qatar between 2012 and August 2018 was attributed to “natural causes.” Using data largely derived from death certificates issued in Qatar, the causes listed included cardiac arrest, heart attack, respiratory failure, and “sickness,” terms that obscure the underlying cause of deaths and make it impossible to determine whether they may be related to working conditions, such as heat stress. Human Rights Watch did not independently verify this data.

When such deaths are attributed to “natural causes” and categorized as non-work-related, Qatar’s labor law denies families compensation, leaving many of them destitute in the absence of their often-sole income provider.

In 2014, a report the Qatari government commissioned by the international law firm DLA Piper noted that the number of worker deaths in Qatar attributed to cardiac arrest, a general term that does not specify cause of death, was “seemingly high.” The report presented two key recommendations in that regard that authorities have not carried out. One recommendation was to reform laws to mandate autopsies or post-mortem examinations into “unexpected or sudden deaths.” The second was for an independent study into the “seemingly high” number of deaths vaguely attributed to cardiac arrest.

Guidance by other countries on the completion of death certificates shows that a cause of death reported only as “cardiac arrest” is highly problematic. For instance, the United States Center for Disease Control and Prevention (CDC) offers guidance to doctors that “The mechanism of death (for example, cardiac or respiratory arrest) should not be reported as the immediate cause of death as it is a statement not specifically related to the disease process, and it merely attests to the fact of death.”

In 2017, a Human Rights Watch report further demonstrated the inadequacy of Qatar’s time-and date-bound heat mitigation strategy in addressing the very real heat-related risks that outdoor workers face due to very high temperatures in Qatar outside these hours and times of year. It also found that the Qatari authorities’ failure to perform autopsies or post-mortems on deceased foreign workers when the cause of death was unclear was a significant problem.

Yet, two years on, Qatar continues to enforce a demonstrably rudimentary summer working hours ban that only prohibits outdoor work between 11:30 a.m. and 3 p.m. from June 15 to August 31. Moreover, Qatar has not made public meaningful data on migrant worker deaths for six years that would allow an assessment of the extent to which heat stress is a factor.

In contrast, Qatar’s 2022 FIFA World Cup organizers, the quasi-governmental Supreme Committee for Delivery & Legacy, in 2016 mandated work-to-rest ratios, commensurate with the risk posed by heat and humidity, for the small percentage of workers exclusively building stadiums for the tournament. These measures are an improvement over the general government regulations. But they don’t take into account the effect of sunlight, which, according to the Wet Bulb Globe Temperature (WBGT) heat stress index, significantly increases the risk of heat stress. The WBGT measures the combined effect of temperature, humidity, wind speed, and solar radiation on humans.

The Supreme Committee has also been more transparent about reporting worker deaths for projects under its purview. But the data falls short of providing an accurate assessment of the causes of worker deaths: out of a total of 10 worker deaths on World Cup projects between October 2015 and July 2017, it listed 7 of these deaths as non-work-related deaths resulting from “cardiac arrest” and “acute respiratory failure.” Of the 10 worker deaths recorded between February 2018 and January 2019 and labeled as non-work-related, it attributed 9 to acute heart failure or acute respiratory failure.

Qatari authorities should immediately replace the limited midday summer work ban with a legally binding requirement based on actual weather conditions consistent with international best practice standards. This should include rest-to-work ratios commensurate with the risk from heat and humidity exposure, access to shade, plentiful hydration, and the prohibition of work during all times of unacceptable heat risk. The authorities should engage heat stress specialists in drafting legislation, which should include meaningful sanctions for noncompliance.

Authorities should also release data on migrant worker deaths from the past six years, broken down by age, gender, occupation, and cause of death, amend its law on autopsies to require medical examinations and allow forensic investigations into all sudden or unexplained deaths, and pass legislation to require that all death certificates include reference to a medically meaningful cause of death.

India, Nepal, Bangladesh, and other labor-sending countries should insist that Qatar carry out investigations into worker deaths, make comprehensive data publicly available, and put in place reforms to protect workers from heat, Human Rights Watch said.

“There are no excuses for Qatar to drag its feet on an issue as important as why migrant workers are dying,” Whitson said. “Instead of turning a blind eye, FIFA, as well as other sporting associations choosing to stage international sporting events in Qatar, should be insisting that all workers toiling away in intense weather conditions to build the infrastructure necessary to host such mega events are adequately protected.”

Posted: January 1, 1970, 12:00 am

In Australia, staff at aged care facilities are giving older people with dementia drugs to control their behavior where the drugs were not required to treat medical symptoms, a practice known as chemical restraint. Restraining older people with drugs has grave consequences, increasing risks of stroke, pneumonia, and even death. Relatives of older people subjected to this practice described a dramatic deterioration: formerly energetic, talkative people stopped walking, eating, and, in some cases, became unable to speak, overcome by the sedative effects of the drugs. Older people and their families face obstacles to recognizing and complaining about chemical restraint, and can face threats and intimidation from aged care facilities when challenging the practice. Recent changes to restraint policies in aged care do not go far enough and leave older people in aged care in Australia dependent on the good faith of an aged care system that is not equipped to meet their needs.

 

Ray Ekins, 78, has dementia and was prescribed olanzapine, an antipsychotic prohibited for use in older people with dementia. His daughter Susan asked his geriatrician about significant changes in his mood and behavior. He told her that her father was old, and she and Ray would just have to accept it. Susan moved Ray to a new facility in 2014 which helped to wean him off the drugs. 

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