On the occasion of the High-Level Meeting on ending AIDS by 2030, to take place in New York from 8 to 10 June 2016, a group of international human rights experts call on States to seize the opportunity to recommit to and ensure the full respect, protection and fulfillment of human rights in the efforts to end the AIDS epidemic by 2030.
Unprecedented health response with human rights at the core
Driven by the urgency of the right to life and powered by the Millennium Development Goal to halt and begin to reverse the AIDS epidemic, the global response to HIV succeeded in reducing the number of new HIV infections by 35% since 2000. In sub-Saharan Africa, the region most affected by the epidemic, new infections declined by 41% between 2000 and 2014. The world has moved from no treatment access in 1996 to 15 million people with access to treatment in 2015.
The AIDS response has demonstrated the importance and feasibility of overcoming entrenched socio-political, gender-related and legal barriers that block effective responses to HIV, to both enable better health and to advance human rights. Two decades after the introduction of the International Guidelines on HIV/AIDS and Human Rights, a Human Rights Council Resolution 30/8 (2015) has reaffirmed that the full realization of human rights and fundamental freedoms for all is essential to the global AIDS response2.
Participation and meaningful involvement of key populations
The human rights principles of non-discrimination, equality, participation, access to justice and accountability, have been crucial in making the AIDS response effective. Since the GIPA principles, Greater Involvement of People Living with HIV/AIDS, the meaningful participation of civil society and key populations, in particular at the community level, has been a vital tool in enabling an effective response these past decades.
Using the language and power of human rights, people living with HIV and human rights defenders have secured important legal and judicial victories against HIV-related discrimination and human rights violations. Their demands for social justice have led to increased access to medicines, law reform and the inclusion of human rights programmes in HIV responses.
However, human rights defenders, including those living with HIV/AIDS, working to advance social justice and secure rights in the AIDS response across the world still face stigma, discrimination and violence. States should publically recognize the importance of their work, and must do more to ensure safe and enabling environments for defenders to operate. Human rights defenders and civil society should be ensured safe and reprisals-free access and participation not only in the UN and other multilateral fora but also at regional, national and local levels. If individuals and organizations cannot safely demand their own human rights and the rights of others living with HIV/AIDS, the full enjoyment of their rights, including their right to health, will be severely undermined.
AIDS is an unfinished business
Effectively realizing the right to health in the global AIDS response means not only securing access to health care but equally addressing the underlying determinants of health, in particular discrimination and stigma. Social inequalities and exclusion shape health outcomes and contribute to the increasing disease burden borne by marginalized groups. In addition, a health condition such as HIV/AIDS may involve exposure to compounded forms of discrimination that reinforce existing inequalities.
The HIV epidemic continues to be a metaphor for great inequalities within and between countries. Specific populations and communities – often the most fragile and marginalized – continue to be left out and bear the brunt of the epidemic. HIV-related discrimination and violence faced by certain sectors of the population make it more likely that they will end up living in situations of poverty. And those who come from deprived socioeconomic backgrounds are often subject to multiple forms of discrimination, which make it extremely difficult to lift themselves out of poverty.
Key populations at higher risk of HIV, have disproportionately high rates of HIV infection and yet, have poorer access to essential HIV services: people who inject drugs are 24 times more likely to acquire HIV, sex workers are 10 times more likely to acquire HIV, men who have sex with men, who globally are 24 times more likely to acquire HIV than adults in the general population, transgender people, who are 18 times more likely to acquire HIV, and prisoners, who are five times more likely to be living with HIV than adults in the general population.
The epidemic continues to be attended by human rights violations fuelled by discrimination, violence, punitive laws, policies and practices. HIV-related discrimination is often deeply interwoven with other forms of discrimination based on gender, race, disability, drug use, sexual orientation and gender identity, immigration status, being a sex worker, prisoner or former prisoner.
Ending the AIDS epidemic in a way that leaves no one behind requires bold policies and reforms that reach out to populations that are deeply marginalized and criminalized. However, in certain parts of the world, we continue to witness a trend towards the opposite—with increased criminalization and exclusion of key populations, fueling stigma and violence against them.
Discrimination in healthcare settings
The enjoyment of the highest attainable standard of health is a fundamental human right that includes non-discriminatory, affordable and acceptable access to quality health care services, goods and facilities. Yet, around the world, even where healthcare services are in place, people face various forms of discrimination and violence in relation to health care.
Punitive laws, policies, and practices impede, and sometimes altogether bar, the disadvantaged and marginalized from accessing information, as well as health goods and services that are critical to the prevention, treatment, and care of HIV. There is a large body of evidence which clearly demonstrates that punitive frameworks drive people away from health services, particularly those who are most in need.
Evidence also shows that healthcare settings are among the most frequent environments where people experience HIV-related stigma, discrimination, and even violence. One in eight people living with HIV report having been denied health care. Some of the most common manifestations of discrimination in health care include denial of health care and unjust barriers in service provision; inferior quality of care; disrespect, abuse, and other forms of mistreatment; extreme violations of autonomy and bodily integrity such as forced abortions and sterilizations; undue third party authorizations for accessing services; mandatory treatment; and compulsory detention.
This discrimination is an unacceptable breach of human rights and, moreover, negatively affects public health outcomes. Health care settings should prohibit HIV mandatory testing or treatment; respect patient privacy and confidentiality; link those affected to additional services or support networks; educate and support their workforce to provide quality care in a safe and non-judgmental way; set up grievance mechanisms to ensure redress and accountability; and ensure the participation of those affected in health-related policies and programmes that affect them.
Gender inequalities and HIV/AIDS
Globally, women and girls are still the most affected by the AIDS epidemic and women living with HIV generally report higher levels of stigma, discrimination and violence than men living with HIV. For instance, adolescent girls and young women account for one in four new HIV infections in sub-Saharan Africa. Young women who experience intimate partner violence are 50% more likely to acquire HIV than women who have not3.
Legal barriers, such as third party authorization to access health services, harmful cultural practices, and forced or early marriage, prevents many adolescents and young women from accessing their rights to sexual and reproductive health4. This in turn can lead to higher levels of unsafe abortion; unwanted pregnancies; and HIV infection. Laws that recognize adolescent girls’ autonomy and bodily integrity and protect their confidentiality encourage and empower adolescents to seek and demand the services and information required to protect themselves.
A variety of discriminatory practices occur in reproductive health settings affecting women living with HIV. For example, pregnancy-related discrimination includes inaccurate information, inappropriate treatment or failure to provide care during labor, and forced or coerced sterilization. This discrimination can have particularly detrimental effects on women’s health and the efforts to eliminate mother to child transmission of HIV, as women who have faced HIV-related stigma and discrimination are less likely to access pre- and post-natal treatment and care.
Violence against women, harmful gender stereotypes and multiple and intersectional forms of discrimination based on sex and gender lead to the violation of women’s sexual and reproductive health rights. The ability of women and girls to protect themselves from HIV continues to be compromised by gender inequalities, including unequal legal, economic and social status, insufficient access to education, health care and services, including for sexual and reproductive health, inability to exercise sexual and reproductive rights as well as all forms of discrimination and violence in the public and private spheres, including sexual violence and exploitation.
Drug policy and access to harm reduction services
The SDGs include an ambitious global target to end AIDS by 2030 but this target requires governments to stand up against the stigma, discrimination and criminalization that have driven the spread of HIV for decades, and embrace evidence- and rights-based responses.
People who inject drugs are among those who have been left furthest behind by the global response to HIV. While people who inject drugs are at increased risk of contracting the virus because they lack access to safe injecting equipment and evidence-based health services; at the core of their suffering is the pernicious stigma associated with drug use, and the focus on highly punitive policies of criminalization as the primary means of addressing drug issues at the global level. Women who inject drugs experience higher infection risk factors and are exposed to greater risks of violence and discrimination in prisons, the community and in health care settings. This has only served to fuel the epidemic among drug users, and it is unsurprising that the world has missed the previous target of halving HIV among people who inject drugs by 2015 – by a staggering 80%.
Responding to the HIV risks linked to unsafe injecting is crucial if we hope to end AIDS. We know risks can be minimized, even avoided altogether, by providing access to harm reduction services – such as sterile needles and syringes, and opiate substitution medications such as methadone5.Recent studies show that HIV-related deaths and new HIV infections could be cut by over 90% by 2030 if just 7.5% of the global funding for drug enforcement were redirected to scaling-up harm reduction6. Yet, despite this fact, many governments continue to neglect or even oppose harm reduction programmes, and instead opt to pursue outdated, unscientific policies of abstinence and criminalization as their main response.
We know harm reduction works. It saves lives. It saves money. It promotes rights. The high Level Meeting on AIDS provides an excellent occasion to get things right when it comes to addressing the global response to HIV. States must commit to removing the punitive frameworks that fuel mass incarceration, HIV epidemics, and negative health outcomes7. They must adopt a new target to prevent HIV among people who inject drugs, and they must commit to ensuring availability and access to treatment informed by evidence and delivered within a human rights framework, including by ensuring unfettered access to opioid substitution treatment and scaling up funding of harm reduction programmes.
An opportunity to be seized: leave no-one behind
The full realization of human rights in the response to HIV/AIDS is therefore crucial to ending the epidemic by 2030 as committed in the 2030 Agenda for Sustainable Development. Ending AIDS is not just critical to realizing health for all. It will also advance and depend on progress in many of the Sustainable Development Goals such as gender equality, peace, justice and inclusive institutions and partnerships for the goals.
The High Level Meeting on ending AIDS by 2030 represents a critical opportunity for advancing the highest attainable standard of health. To end AIDS, human rights obligations and political commitments need to be translated into concrete strategies, programmes and actions at global, regional and country levels.
We call on States to:
- remove punitive laws, policies and practices, including overly broad criminalization of HIV transmission, third-party notification requirements, mandatory testing and others that block key populations’ access to healthcare services, goods and information;
- prevent and address violence against key populations;
- increase human rights and legal literacy for people living with, at risk of and affected by HIV, and provide access to legal services for them to challenge violations of human rights;
- eliminate HIV and key populations-related stigma and discrimination in all settings, especially health-care, workplace and educational settings;
- eliminate discrimination and violence against women and girls, including gender-based, sexual and intimate partner violence, harmful traditional and customary practices, abuse, rape and other forms of sexual violence, and ensure that they can access comprehensive sexual and reproductive health information, education, and services;
- adopt a new target to prevent HIV among people who inject drugs, and commit to ensuring availability and access to evidence-based treatment, including harm reduction programmes and include a gender perspective which recognizes the unique needs of women;
- strengthen human rights capacities of law makers, law enforcement and the judiciary; and health care workers;
- ensure health services meet the right to health framework criteria of availability, accessibility, acceptability and quality and are delivered without discrimination;
- promote and protect human rights defenders working on HIV-related issues, including those working with criminalized populations; and
- establish and strengthen redress and accountability mechanisms.
We have an historic opportunity not to be missed: to put an end to AIDS within our lifetime. The international community has made great progress in the fight to end HIV/AIDS, but there remain great challenges ahead and important work to be done. The present challenge is to reach the many who are still being left behind.
1. The UN Special Rapporteurs on the right of everyone to the enjoyment of the highest attainable standard of physical and mental health; on the situation of human rights defenders; on extreme poverty and human rights; on violence against women, its causes and consequences; and the Working Group on discrimination against women in law and in practice.
2. See report on the Panel discussion held in March 2016 on the progress and challenges in addressing human rights issues in the context of efforts to end the HIV/AIDS epidemic by 2030 (A/HRC/32/35).
3. UNAIDS, Gap Report (2014).
4. UNDP ‘Background Paper: Strategy Meeting to Advance the Findings and Recommendations of the Global Commission on HIV and the Law on Young Women and Girls’ (2015).
5. Case Information Sheet: Kurmanayevskiy et al v Russia; International Centre on Human Rights and Drug Policy and the Canadian HIV/AIDS Legal Network (2016).
6. The Case for a Harm Reduction Decade: progress, potential, and paradigm shifts (Harm Reduction International, March 2016).
7. See Joint open letter of the Rapporteur on the right to health and other experts with occasion of UNGA Special session on world drug problem, April 2016.