Human Rights and HIV/AIDS in Brazil
Specific legal obligations and general human rights principles have helped shape AIDS policies in many countries, and have influenced the way HIV-infected and -affected people are treated. This article examines how human rights principles and laws have informed the national response to HIV/AIDS in Brazil, where effective public health strategies are credited with reducing the overall impact of HIV/AIDS. One central element of Brazil's national AIDS plan is an ongoing government-led campaign against HIV-related stigma and discrimination; another is free universal distribution of antiretroviral drugs to everyone who needs them. The following analysis of these issues is prefaced with an overview of the human rights models that are central to a discussion of the Brazilian experience.
Health and Human Rights
A wide array of players has been calling attention to human rights dimensions of the global AIDS epidemic since its early years. Activists, community leaders, physicians, academics, public officials, and others have found many different ways to relate HIV/AIDS to human rights.
The conceptual and legal framework for considering HIV/AIDS and other health problems as human rights issues has evolved largely through the work of the United Nations (UN). The Universal Declaration of Human Rights (UDHR), adopted by the UN General Assembly in 1948, became the foundation for the subsequent body of international human rights treaties, and stands today as the touchstone of the modern human rights movement. UDHR was intended to define the full body of fundamental human rights principles, among them "the right to a standard of living adequate for the health and well-being of himself and his family, including food, clothing, housing and medical care and necessary social services."
In 1966, the UN General Assembly adopted two treaties that elaborate on many aspects of UDHR: the International Covenant on Civil and Political Rights (ICCPR) and the International Covenant on Economic, Social and Cultural Rights (ICESCR). These treaties bestow specific responsibilities upon ratifying parties under international law. That is, countries are legally obligated to ensure that their citizens enjoy the rights named in the treaties. To date, 160 countries have ratified ICCPR, and 157 ICESCR. Brazil is a party to both.
It is commonly understood that some rights cannot be implemented in absolute terms. A government's commitment to the right of its people to medical care, for example, does not translate into an economically untenable obligation to immediately build and staff health clinics in all under-resourced communities. States are, however, obligated to make measurable ongoing progress on those issues, a concept known as the progressive realization of rights.
The body of human rights described in the international treaties is intended to function as a set of fully interrelated principles, with no rights superseding any of the others. Rights are also understood to inform each other. For example, two rights that have great significance in the field of health are the right to participate in decision-making processes that affect one's well-being and the right to be free from discrimination. Thus, a state's efforts to realize its citizens' right to health should be characterized by the participation of community representatives at national and local planning levels, and by the enactment of interventions that serve all groups of citizens equally.
Background: HIV/AIDS in Brazil
Brazil, the world's fifth most populous country, has an estimated adult HIV prevalence rate of 0.5 percent, with approximately 610,000 adults thought to be living with HIV.1 Brazil's AIDS epidemic first manifested itself in the early 1980s in the urban gay community, particularly in São Paulo, the nation's largest city. The epidemic gradually made inroads into heterosexual populations, and since the mid-1990s, heterosexual sex has been by far the most common mode of transmission.2 This trend has been accompanied by a shift in the gender ratio, with women now accounting for more than one-third of reported AIDS cases.3 At the same time, HIV/AIDS is increasingly burdening poorer populations.4
In 1994, the World Bank estimated that Brazil would have almost 1.2 million cases of HIV infection by 2002. The caseload even now is little more than half that number. This can be attributed to two major factors: the strong commitment of the Brazilian government to implementing a comprehensive multifaceted national AIDS plan, and the deep involvement of civil society in many aspects of HIV/AIDS prevention, care and treatment.
Treatment is one of the most widely discussed components of Brazil's national AIDS plan. Since 1996, the government has distributed combination antiretroviral therapy for free through the national health system (Sistema Único de Saóde, or SUS). Brazil's position as one of the few developing countries with a domestic pharmaceutical industry has contributed to the economic feasibility of this policy, with Brazilian companies manufacturing generic versions of earlier antiretrovirals. The government has negotiated with the pharmaceutical industry for discounts on more recent antiretrovirals that cannot be copied because of patent laws. However, as demand grows for second- and third-line antiretroviral regimens that include imported drugs, the cost of sustaining the treatment program looms as one of Brazil's biggest AIDS-related challenges.
Conditions Supporting a Rights-Based Response in Brazil
AIDS emerged as a public health threat just as the nation of Brazil was beginning to undergo an immense transformation. Beginning in 1964, a series of military dictatorships ruled Brazil. Widespread opposition to this system of governance led to a gradual "redemocratization" process throughout much of the 1980s, driven by a broad-based political and social movement with a strong human rights element. The diverse elements of Brazilian society that banded together to bring about this transition included the sanitary reform movement -- an informal coalition of health professionals, academics, and others "who demanded a public health system responsive to and controlled by the public and who defended the right to health as a fundamental human right to be guaranteed by the constitution."5
Brazil became a party to ICESCR in 1992. When its new constitution was enacted in 1998, it included significant human rights protections for Brazilian citizens, including the right to health. Enshrining the right to health in its constitution could thus be viewed as a significant step in the progressive realization of the right to health as called for in the treaty because this established an important point of reference for all of the country's future health-related legislation.
Well before the new constitution was in place, the human rights dimension of the democracy movement had already greatly informed early efforts to address HIV/AIDS. In the early 1980s, human rights activists and gay rights activists joined forces to quickly mobilize an organized response to the epidemic taking hold in the state of São Paulo. This community-based coalition found allies in the municipal and state public health agencies. It was here that the sanitary reform movement had helped instill a strong human rights-oriented perspective in the government's conception of its health-related responsibilities.6-8 Thus, the HIV/AIDS policies and programs that emerged in São Paulo State -- which became a model for other states and later for the national AIDS program -- embodied a sophisticated understanding of the relationship between health and human rights. This relationship had significant bearing on stigma and discrimination, and on access to medicines.
Stigma and Discrimination
The prominence of human rights perspectives has contributed to widespread opposition to HIV-related stigma and discrimination since very early in the Brazilian AIDS epidemic. According to Dr. Alan Berkman and his coauthors, "A critical number of gay men and human rights activists, as well as men and women infected or affected by HIV, openly confronted the stigma, demanding that the rights of people living with AIDS be respected by the government and by their fellow citizens."9
In the state of São Paulo, community leaders found that this stance resonated with the State Department of Health, which recognized that countering stigma and discrimination would be an important part of the fight against AIDS. Health officials, in fact, drew parallels between the social responses to HIV and Hansen's disease (leprosy). The first person to head the state AIDS program, in 1983, later wrote:
From the beginning, the São Paulo AIDS Program was organized with all the components still existent today, including prevention, epidemiological surveillance, treatment and human rights, in addition to a strong component of linkage with [community organizations].... It was significant that the State Dermatology Division already had a multidisciplinary [Hansen's disease] team emphasizing community involvement and the struggle for the rights of affected individuals. The longstanding experience with Hansen's disease both supported and provided the initial structure needed to set up the AIDS Program. At the time, there was a strong link between AIDS and homosexuality, which also proved problematic. If there had not been a team in place to deal with the issues pertaining to rights, stigma and minorities as a government commitment and responsibility, it might have been much more difficult to create an AIDS Program with the above-mentioned characteristics.10
The São Paulo effort to counter stigma and discrimination was recognized by other states and later by the national program as an essential component of an effective HIV/AIDS plan. Meanwhile, by the late 1980s, community-based NGOs were taking their human rights-based campaign into the legal realm. NGOs filed lawsuits seeking to defend HIV-positive people from discrimination in housing, education, the workplace, and elsewhere. They also used lawsuits to challenge policies that required people to undergo HIV tests in order to qualify for jobs and be admitted to public exams.11
Legislative initiatives emerged to reinforce the courts' often favorable rulings. A 1988 law requires employers to extend workplace disability protection to HIV-positive employees. Laws also prohibit HIV-related discrimination in the workplace, in health care and in access to public facilities, and forbid medical personnel from revealing confidential medical information about HIV-positive people.12 With government encouragement, NGOs provide legal aid to HIV-positive people as part of their ongoing efforts to have the anti-discrimination laws upheld. A 2003 article reported that an estimated 36 NGO legal projects, located throughout the country, were then receiving funds from the Ministry of Health.13
Access to Medicines
The Brazilian movement to provide access to AIDS medicines has also been driven in part by human rights-based arguments put forth by community members and health officials. A landmark 1996 law requiring free distribution of antiretroviral drugs through the public health system had its roots in actions that both of those groups had taken in the 1980s.
As one source explains, "The passing of this law reflected in part the efforts of community groups which had filed lawsuits, beginning in 1988, against state and local governments to guarantee assistance to people with AIDS and treatment with medication for AIDS-related opportunistic infections."14 Although the government was the target of the lawsuits, this did not mean government entities necessarily opposed the campaign for universal treatment. Some public health officials considered such a goal to be very much in line with the principles of the sanitary reform movement, which continued to influence the SUS. Berkman and his colleagues state:
Integral care was a core concept of the sanitary reform movement in Brazil before the debate about the need for linking treatment and prevention emerged within the international AIDS movement. Integrality asserts that prevention must be integrated with care and treatment. The right to health extends to those already ill and in need of treatment, and there is recognition that having people access the health system will improve the whole range of public health initiatives. Integrality also is based on a commitment to the human rights of those afflicted: a prevention-only approach to health violates those rights and the dignity of those in need of care, devalues their lives and adds to the stigma that may accompany illness.15
The director of São Paulo State's first AIDS program suggests that his agency even deliberately helped spur the universal access campaign by purchasing the small amount of AZT that it did in 1989, initially only enough to treat seven percent of people in need of treatment.
It was a deliberate initiative as part of a strategy to create need, to generate demands and to spark involvement by society on the issue of antiretroviral treatment in Brazil. These initiatives helped mobilize public opinion and the community, and in 1990 the Ministry of Health decided to begin purchasing all the AIDS drugs available on the market, including medicines for opportunistic infections.16
The São Paulo State Department of Health set a similar precedent by beginning to distribute protease inhibitors as part of triple combination antiretroviral therapy in 1995, in response to preliminary reports of the efficacy of the new treatment strategy. The national AIDS program followed suit in 1996. At first, in the absence of legislation, the distribution of combination therapy reflected merely a policy rather than a clear-cut legal obligation on the part of Brazil's Ministry of Health. The legal obligation was imposed in November 1996, when Brazil's president signed Law 9313, which required the federal government to provide free AIDS medicines through the public health system to all people who needed them. Human rights arguments provided an important rationale for the enactment of the legislation.
The human rights frame has continued to shape the judiciary's interpretation of the government's treatment-related obligations in significant ways. For example, community advocates sued the federal government in 2000 to challenge the public health system's policy of providing genotyping tests only to patients who were taking protease inhibitors. The judge who heard the case ultimately agreed with the advocates' argument that access to genotyping tests should not depend on the use of protease inhibitors, and should be extended to people taking all forms of antiretroviral regimens. The judge's explanation for his ruling made reference to "all principles that guide the health program, in particular the right to life, as established in the preamble to Article 5 of the Federal Constitution."17
The international community has expressed strong interest in the accomplishments of government and civil society in regard to HIV/AIDS in Brazil, and there has been much discussion about how "the Brazilian model" might provide guidance for other developing countries where AIDS is a major health crisis. Of course the extent to which that model is taken up elsewhere depends in part on factors beyond the control of any single individual or group. As Berkman and his associates observed, "The political crisis of military rule that precipitated the social mobilization of large numbers of Brazilians cannot be artificially recreated in other countries." Likewise, the centrality of human rights principles in the government and civil society response to HIV/AIDS in Brazil reflects a unique convergence of circumstances.
Nonetheless, those seeking to influence how government and civil society address AIDS in other hard-hit countries might still draw powerful lessons from what has happened in Brazil. A striking feature of the Brazilian experience is that human rights principles have been integrated very concretely into multiple facets of the national response to HIV/AIDS. That is, when various players invoke human rights, they are bringing more than philosophical arguments to bear on the challenges they are facing. The Brazilian government has a legal mandate to honor the right to health and other human rights, and this mandate has particularly influenced responses to HIV-related stigma and discrimination and to the treatment needs of HIV-positive people.
Many countries have the same health-related treaty obligations as Brazil, yet have failed to operationalize the right to health to the same extent as Brazil. What sets Brazil apart? Affirming the right to health in the national constitution is an important factor, but again, Brazil is hardly alone in that regard. The concept of the human right to health has influenced Brazil's fight against AIDS in such significant ways because government and civil society took the crucial next steps. Brazil's executive and legislative branches have developed a body of law that provides clear direction on how the right to health is to be actualized The judiciary has provided critical guidance on implementation through rulings that address many different HIV-related issues from a human rights perspective. Finally, the role of civil society cannot be overstated. Since its earliest days, a strong community-based movement has conceptualized its objectives in terms of human rights principles.
Community advocates recognized that opposing HIV-related stigma and discrimination on human rights grounds was imperative. They also asserted that the right to health implies the right to treatment with the best available drugs. While civil society representatives engaged in dialogue with government agencies, they also pursued their rights-based goals through the legal system. Ultimately, the forces of government and civil society working together have shaped a strategy that demonstrates, through its success, both the moral and practical relevance of human rights in the global fight against AIDS.
This article was provided by Gay Men's Health Crisis. It is a part of the publication GMHC Treatment Issues. Visit GMHC's website to find out more about their activities, publications and services.