From resistance to receptivity: Transforming the HIV/AIDS crisis into a human rights issue

The Joint United Nations Programme on HIV/AIDS (UNAIDS) estimates that 33 million people worldwide are HIV-positive.1 The AIDS epidemic presents one of the greatest challenges to public health systems around the world, straining national budgets and medical expertise worldwide. Not only is AIDS incurable, but it also disproportionately afflicts people in their early adult years. The very people who should be contributing to the economic, political, and social development of the state are instead falling ill and dying. This has huge social and economic costs. It also harms governance and democratization.2 In response, states, nongovernmental organizations (NGOs), and intergovernmental organizations have taken an active role in providing access to treatment, education, and prevention programs. Given the magnitude and effects of the AIDS epidemic, this is not surprising. What is surprising, though, is that, instead of predicating their actions simply on public health grounds, advocates for people living with HIV/AIDS (PLWHAs) increasingly argue that education programs and treatment access are matters of human rights. For example, UNAIDS declares, "The risk of HIV infection and its impact feeds on violations of human rights, including discrimination against women and marginalized groups. . . . Over the past decade the critical need for strengthening human rights to effectively respond to the epidemic and deal with its effects has become evermore clear. Protecting human rights and promoting public health are mutually reinforcing."3 The International Federation of Red Cross and Red Crescent Societies specifically advocates human rights as a cornerstone of its AIDS prevention programs. Protecting rights, it argues, will empower vulnerable groups to demand education, economic opportunities, and protection from violence. This, in turn, will reduce HIV transmission.4 Amnesty International notes that human rights abuses contribute to HIV's spread and undermine treatment efforts, and Human Rights Watch finds that such abuses fuel transmission, which in turn leads to additional abuses and discrimination.5 Similarly, Physicians for Human Rights encourages medical professionals to both treat the disease and call attention to its underlying causes.6 In this approach, health care workers can use their public credibility to highlight violations of economic, social, and cultural rights and the ways in which those violations increase a person's vulnerability to infection. Historically, disease containment has not involved human rights strategies but has instead relied on "coercion, compulsion, and restrictions."7 Reciprocally, diseases have not typically been the subject of human rights activism. Today's emphasis on human rights in HIV/AIDS treatment and prevention therefore represents a major and contentious shift in public health policy and human rights advocacy. Why did public health officials move away from traditional strategies and turn to human-rights-based strategies for confronting AIDS? Why did human rights NGOs accept HIV/AIDS as a rights issue? By examining these changes, we can see how the meaning of the area of human rights itself has evolved and how strong advocates in critical positions can catalyze change. In the first section of this chapter I identify three human rights approaches to AIDS. Next I explain how advocates began promoting rights arguments against the public health orthodoxy of the mid-1980s. This effort started at the national level, led by public health officials and domestic AIDS activists particularly in the United States. As discussed in the third section, similar rights-based approaches to AIDS were brought to international organizations by a few well-placed individuals, most importantly Dr. Jonathan Mann, initial director of the World Health Organization's (WHO) Global Program on AIDS (GPA). Mann's advocacy faced stiff opposition from WHO bureaucrats imbued with traditional public health attitudes, but the battle in this key international organization helped inform the world about the advantages of integrating human rights into AIDS policy. In this context and under pressure from their own AIDS advocates, key states began adopting their own rightsbased policies concerning the disease in the early 1990s, as discussed in the following sections on Brazil and South Africa. By the mid-1990s, conventional human rights NGOs, long reluctant to embrace AIDS as a rights issue, also began changing their attitudes, as discussed in the chapter's final section.