Advancing the Right to Health in the AIDS Response: An Evolving Movement and an Uncertain Future

Benjamin Mason Meier, Rebekah Thomas, and Kent Buse

The Joint United Nations Programme on HIV/AIDS (UNAIDS) is focusing its 2017 World AIDS Day campaign on the right to health. This groundbreaking campaign, My Health, My Right, provides an opportunity to reflect on the advancements of the right to health in the AIDS response and the challenges for human rights in the years to come. Celebrated on December 1^st each year, World AIDS Day has provided an opportunity since 1988 for policymakers, practitioners, scholars, and advocates to come together to raise awareness in support of people living with and affected by HIV. The right to health has long been crucial to this movement. Given its dramatic development under international law, this right has provided an evolving basis to implement human rights in HIV prevention, treatment, care, and support.

As a basis for global justice under international law, the right to health stands as a central normative framework for global health. The human rights framework offers universal attributes by which to conceptualize government responsibilities for health and cross-cutting principles by which to assure non-discrimination and equality, participation, and accountability in health policies, programs, and practices.[1] With the 1946 Constitution of the World Health Organization (WHO) serving as the first legal declaration of a human right to health, states declared that “the enjoyment of the highest attainable standard of health is one of the fundamental rights of every human being,” defining health positively to include “a state of complete physical, mental, and social well-being and not merely the absence of disease or infirmity.”[2] From this birth of human rights for global health, the UN General Assembly codified the right to health under the 1966 International Covenant on Economic, Social and Cultural Rights (ICESCR), establishing government obligations to progressively realize “the right of everyone to the enjoyment of the highest attainable standard of physical and mental health.”[3]

The advent of the AIDS movement in the 1980s would operationalize human rights in public health. As various governments reacted to this novel epidemic through traditional public health policies—including compulsory testing, named reporting, travel restrictions, and isolation or quarantine—these measures often incited fear, prejudice, and discrimination and, as a consequence, undermined public health efforts.[4] Drawing on the emerging activism of people living with and affected by HIV, WHO sought to apply individual human rights to public health policy—viewing human rights violations as counterproductive to public health goals, abandoning coercive tools of disease prevention, and applying human rights to focus on vulnerabilities leading to HIV transmission. WHO’s Global Programme on AIDS, launched in 1987, shaped formative efforts to examine health and human rights as “inextricably linked” in the AIDS response.[5] In the absence of medical treatment, WHO’s first Global Strategy for the Prevention and Control of AIDS emphasized rights-based access to information, education, and services as a means to support health autonomy and personal responsibility among vulnerable individuals.[6] This focus on human rights would expand as UN leadership for the AIDS response transitioned to UNAIDS.

The 1994 establishment of UNAIDS reflected a governance imperative to coordinate the multi-level, multi-sectoral, and multi-stakeholder response necessary to meet this singular public health threat, recognizing human rights as intrinsic to curbing the epidemic. Drawing on the 1994 Paris Declaration on “Greater Involvement of People Living with HIV/AIDS,” UNAIDS extended efforts to ensure the participation of affected communities in rights-based policy development and implementation through its Programme Coordinating Board.[7] Supported by states through AIDS-related resolutions in the UN Commission on Human Rights, UNAIDS collaborated with the UN High Commissioner for Human Rights to advance 1998 International Guidelines on HIV/AIDS and Human Rights to elaborate the human rights implicated by vulnerability to HIV.[8]

Interpreting the right to health to reflect these new understandings of public health, the UN Committee on Economic, Social and Cultural Rights (CESCR)—the UN treaty body charged with both interpreting and monitoring the ICESCR—issued a General Comment in 2000 to interpret the right to health to address “underlying determinants of health”—beginning in preventive and curative care and expansively encompassing underlying rights to food, housing, work, education, equality, privacy, and information.[9] As a basis for public health, the CESCR examined disease prevention and health promotion efforts to progressively realize the right to health, ensuring the availability, accessibility, acceptability, and quality of health systems and services. These recommendations for underlying determinants of health would require sweeping rights-based reforms of health systems. However, where such reforms were beyond the willingness or capacity of many countries, the escalating devastation of HIV-related mortality galvanized affected communities to demand access to treatment as central to the right to health, shifting HIV advocacy from comprehensive population-level policy to the immediate task of ensuring access to essential antiretroviral medicines for the dying individual.

This right to health advocacy advanced under law through national litigation, seeking to hold states accountable under the human right to health for individual access to treatment. Drawing on previous claims in courts in Latin America and Southeast Asia, the South African Constitutional Court heard an early rights-based challenge for access to medicines in the seminal 2002 case Minister of Health v. Treatment Action Campaign.[10] Where this legal challenge successfully held the government responsible for expanding drug access to reduce the transmission of HIV from mother-to-child, such activism propelled litigation in national courts throughout the world. Pressing states to guarantee treatment access as an immediate matter of life-or-death, these legal claims expanded to challenge the monopolistic practices of the international patent regime and seek distributive justice through global health.[11] These national human rights challenges have thus become intertwined with international funding debates on “universal access” through global governance, mobilizing vast increases in health resources and contributing to a dramatic scale-up of HIV treatment—from just 685,000 people in 2000 to nearly 21 million in 2017.[12]

Yet the right to health would come to support efforts beyond treatment, with global institutions framing a rights-based approach to HIV prevention, treatment, care, and support that ensures non-discrimination and equality, participation, and accountability. Joining “zero new HIV infections” and “zero AIDS-related deaths,” UNAIDS declared “zero discrimination” a central platform of its 2016-2021 Strategy, acknowledging the vulnerabilities that push people beyond the reach of health services and offering a model for people-centered approaches to global health.[13] To develop rights-based programming that is responsive, equitable, and evidence-informed, policymakers are seeking to ensure meaningful engagement with civil society, strengthening partnerships with people living with and affected by HIV, young people, and women. Promoting inclusive participation as a human rights imperative, these partnerships are generating transparent policy deliberations that not only seek to engage and empower stakeholders in the design and implementation of HIV programs, but also to hold duty-bearers accountable for the creation of rights-based policies.

Where innovative rights-based approaches to the AIDS response have provided a framework for implementing the right to health, the realization of health-related human rights is seen as inherent in meeting the health-related Sustainable Development Goals (SDGs). In commemorating the importance of the right to health on World AIDS Day, UNAIDS Executive Director Michel Sidibé has declared that:

The world will not achieve the Sustainable Development Goals—which include the target of ending AIDS by 2030—without people attaining their right to health. The right to health is interrelated with a range of other rights, including the rights to sanitation, food, decent housing, healthy working conditions and a clean environment.[14]

The incorporation of human rights norms and principles into the SDGs holds the promise of taking AIDS “out of isolation,” providing a framework to achieve universal health coverage and other health-related targets and moving toward a rights-based approach to global health governance.[15]

This World AIDS Day focus on the right to heath and the accompanying UNAIDS report, Right to Health, provide a path forward for considering determinants of health as legal obligations under the right to health. While the goal of universal access has mobilized unprecedented support, HIV targets are increasingly out of reach for many countries, and in the current political and economic climate, there are growing concerns that cutbacks in support may lead to a reversal of the prevention and treatment gains engendered by the realization of human rights. In meeting the challenges to come, rights-based approaches must stand not only to promote the realization of, and accountability for, the human right to health, but also the interdependent human rights that implicate interconnected determinants of health.

Benjamin Mason Meier is an Associate Professor of Global Health Policy at the University of North Carolina at Chapel Hill, USA.

Rebekah Thomas is the Technical Officer for Human Rights in the Gender, Equity and Human Rights Team at the World Health Organization.

Kent Buse is the Chief of Strategic Policy Directions at the Joint United Nations Programme on HIV/AIDS.

The views expressed in this blog do not necessarily reflect the views of WHO or UNAIDS.

[1] Magnusson R. et al. (2017). Advancing the Right to Health: The Vital Role of Law. Geneva: World Health Organization.

[2] Constitution of the World Health Organization. Geneva: World Health Organization; 1948, preamble.

[3] International Covenant on Economic, Social and Cultural Rights (ICESCR), G.A. Res. 2200A (XXI), 993 (1966)., art. 12.

[4] Kirby, M. (1996). Human rights and the HIV paradox. Lancet, 348, 1217-1218.

[5] Gruskin S., Mills E.J., and Tarantola D. (2007). History, principles, and practice of health and human rights. Lancet 370, 449-455.

[6] World Health Organization. (1987). World Health Assembly Resolution 40.26, Global Strategy for the Prevention and Control of AIDS, 5 May.

[7] Joint United Nations Programme on HIV/AIDS (2000). Enhancing the Greater Involvement of People Living with or Affected by HIV/AIDS (GIPA) in Sub-Saharan Africa: A UN Response: How Far Have We Gone? New York: UN: United Nations.

[8] Office of the United Nations High Commissioner for Human Rights and the Joint United Nations Programme on HIV/AIDS (1998). International Guidelines on HIV/AIDS and Human Rights. New York and Geneva: United Nations.

[9] UN Committee on Economic, Social, and Cultural Rights, General Comment No. 14, The Substantive Issues Arising in the Implementation of the International Covenant on Economic, Social, and Cultural Rights, UN Doc. No. E/C.12/2000/4

(2000).

[10] Minister of Health & Others v. Treatment Action Campaign & Others, 2002 (5) SA 721 (CC).

[11] Meier B.M. and Yamin A.E. (2011). Right to health litigation and HIV/AIDS policy. Journal of Law, Medicine & Ethics 39, 81-84.

[12] Jürgens R., Csete J., Lim H., Timberlake S., and Smith M. (forthcoming) The Global Fund to Fight AIDS, Tuberculosis and Malaria: Funding Basic Services and Meeting the Challenge of Rights-Based Programs. In Meier, B.M. and Gostin, L.O. (eds.) Human Rights in Global Health: Rights-Based Governance for a Globalizing World.

[13] UNAIDS. 2017. 2016-2021 Strategy: On the Fast Track to End AIDS. Geneva, Switzerland; WHO and UN. 2017. Joint UN Statement on Ending Discrimination in Healthcare Settings. Available at: http://www.who.int/mediacentre/news/statements/2017/discrimination-in-health-care/en/

[14] World AIDS Day Message from UNAIDS Executive Director, http://www.unaids.org/en/resources/presscentre/pressreleaseandstatementarchive/2017/november/2017_wad_exd_message.

[15] Sidibé M., Nygren-Krug H., McBride B., and Buse K. (forthcoming). The Future of Global Governance for Health: Putting Rights at the Center of Sustainable Development. In Meier, B.M. and Gostin, L.O. (eds.) Human Rights in Global Health: Rights-Based Governance for a Globalizing World.