Perhaps more than any other modern epidemic, HIV spread around the world in ways that made it the first, and perhaps still the quintessential epidemic of the global era. Yet, at least initially, it was also an epidemic that seriously called into question notions of technological progress and advancement. With no effective treatments, and little even in the way of palliative remedies, AIDS also opened up a profound crisis in Western biomedicine and medical technology, one that is in some ways difficult to remember after more than a decade of increasingly effective—if not universally accessible—antiretroviral therapies. In much of the world at the time, the response to HIV and AIDS was characterized by fear, stigma, and discrimination against those most vulnerable in the face of the epidemic, and by widespread denial with regard to its likely evolution.
 Pills at the Farmanguinhos pharmaceutical factory in Rio de Janeiro. Bought from the Glaxo Smithkline in 2004, the factory is key to widening access to antiretroviral medicines, the basis for Brazil’s universal AIDS-treatment program. (By Australfoto / Douglas Engle) |
In this context, significant attention has focused on the apparent success that Brazil has demonstrated in responding to HIV and AIDS. In Brazil, as elsewhere, the epidemic emerged in the early 1980s, in the midst of a period of accelerating globalization and economic and political restructuring. This was followed by a relatively widespread mobilization of Brazilian society in response to the epidemic. The country’s National Program on Sexually Transmitted Diseases and AIDS (PNDSTAIDS) has been identified as one of the most progressive governmental AIDS programs in the world. A high degree of openness has characterized the country’s prevention programs, and a truly groundbreaking antiretroviral treatment access program has had a major impact in changing perceptions about the potential for HIV/AIDS treatment in resource-poor settings, notably in the way that many more people are living with AIDS rather than dying in spite of the existence of life-extending medications. Today, the spread of the epidemic in Brazil appears to have stabilized, and a significant decline in deaths due to HIV and AIDS has been recorded since free and universal treatment access was guaranteed in 1996.
Nevertheless, reality on the ground is always more complex than the stories we tell about it. The success story that is told about the Brazilian response to the epidemic is often oversimplified, and it is easy to find examples of ongoing problems, internal contradictions, and other factors that should remind us that whatever Brazil has accomplished is still fragile and could easily be undone. In spite of this, the fact remains that the Brazilian response has been one of the world’s most successful, with important lessons for the field of global health.1
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By historical accident, the aids epidemic took shape in Brazil during a period of widespread social and political change. In the late 1970s, after nearly two decades of military dictatorship, Brazilian society had begun a gradual period of return to democratic government, extending over the course of the 1980s in what came to be known as the abertura, or political “opening.” The military regime had issued a formal amnesty, and a generation of political exiles had begun to return to Brazil to work for the redemocratization of the country’s political life. It was a time when a wide range of social and political movements that had long struggled underground against the dictatorship came out into the open and engaged in a growing debate about reconstructing democratic life.
This context was crucially important to Brazil’s response to HIV/AIDS, as a number of key social movements intersected in seeking to respond to the epidemic in ways that would have a lasting impact on the shape of the epidemic in Brazil. Particularly important in this were the deeply rooted ideologies from the tradition of liberation theology in the Brazilian Catholic Church, the sanitary reform movement in public health during the 1980s, and the newly emerging gay and lesbian and feminist movements that had begun to surface in Brazilian society during the late 1970s and early 1980s. The interaction of these diverse ideas and movements led to the articulation of key ethical and political principles that would come to provide the foundation for Brazil’s widespread social mobilization and relatively successful policy response over the course of ensuing decades—and that through a series of different interactions and mechanisms has gone on to have important implications for the global response to HIV and AIDS. At a time when biomedicine and medical technology offered little to reduce the horrible pain and suffering of those directly affected by HIV and AIDS, grassroots mobilization influenced by all of these social movements made possible a powerful social and political response to AIDS that the Brazilian success story relies on even today, especially in the most fundamental sense of providing a space for action based on shared experience and the reclamation of life.
At least four principles were crucial to that response: (1) the idea of solidarity as central to the social response to an apparently incurable and inevitably fatal disease; (2) the importance of respect for diversity in relation to the communities and populations affected by the idea; (3) the need to guarantee the citizenship of people living with HIV and vulnerable to HIV infection; and (4) the right to health for all Brazilian citizens. Together, these principles provided a framework for a moral response to an epidemic that at the time had no meaningful technical remedy. They emerged and were in large part consolidated prior to the development of more effective treatment options; over time, they have continued to underwrite the policies that have taken shape as a kind of Brazilian model for responding to the epidemic.
If the key ethical, political, and programmatic principles that would guide the Brazilian response to HIV and AIDS were in many ways already clearly articulated during the first decade of the epidemic, they were deepened and further elaborated through practical experience during the second decade of the epidemic, over the course of the 1990s, when what has been described as a “Brazilian model” for responding to AIDS took shape.2 It was during this period, particularly after 1992, that AIDS-related social movements increasingly began to penetrate the institutional machinery of the public health system, first at the municipal and state levels, and then at the federal level, as part of a process of deepening redemocratization. During this period, a growing “pauperization” of the epidemic—its impact on the poorest and most marginalized sectors of Brazilian society—became increasingly clear, while clinical interventions and treatment options became more effective, offering for the first time the possibility of meaningful clinical interventions capable of transforming AIDS into a chronic, but nonetheless manageable, health condition.
In 1991, PNDSTAIDS had taken the rather unusual step of making the therapeutic drug AZT available through the free distribution of medications provided to all Brazilian citizens, independent of their socio-economic status.3 At the time, this was by no means simply a humanitarian gesture; according to the director of PNDSTAIDS, it was intended to remedy serious problems of under-reporting in the epidemiological surveillance system. Because of widespread discrimination, many physicians tended to comply with their patients’ wishes in disobeying case-reporting laws. From their point of view, patients had little or nothing to gain from such reporting, and, potentially, a good deal to lose due to stigma and discrimination if confidentiality were violated. Meanwhile, strong demand for AZT led at least one major pharmaceutical producer to violate patent laws, producing the drug locally at a significantly reduced price. The PNDSTAIDS then jumped at the chance to purchase bulk quantities and made AZT available free of charge—but only to officially reported cases, thus providing an incentive for all of the risks entailed in case reporting. Epidemiologically, this policy had the desired effect of reducing under-reporting, though it drew a good deal of international criticism for both its violation of patents and its “economic inefficiency.”
While the Brazilian policy of free distribution continued to draw international criticism from various quarters, it was nonetheless defended not only by AIDS activists but also by progressive public health officials, who argued that the massive scale-up of prevention programs that was made possible by a 1994 World Bank loan had to be accompanied by a similar commitment, using national funds, to building an integrated program that would also guarantee access to treatment and care. When studies began to demonstrate the potential of combination therapies in the mid-1990s, both activists and policy makers were quick to articulate the need for Brazil to facilitate universal access to the new generation of antiretroviral treatments.
Even before the end of the week-long 11th International Conference on AIDS held in Vancouver in 1996, they had not only staged a demonstration in the pharmaceutical exhibit area at the conference, but had developed a strategy for building a political alliance across party lines—ranging from the left-wing Workers Party to the right-wing Liberal Front Party—in order to provide broad-based support for what would become known as the Sarney Law, named after the center-right senator who introduced the legislation guaranteeing universal access to all available antiretroviral therapies for any Brazilian citizen who needed them. Signed into law before the end of 1996, exactly midway into the first World Bank loan to Brazil for its AIDS prevention and control program, the Sarney Law had a major impact in requiring the Finance Ministry to increase its commitment from national resources for AIDS treatment. Matching funds from the National Treasury in the order of $90 million had already been committed in order to secure the World Bank loan, and this new commitment of funds for antiretroviral treatments created a heavier burden.
One of the key features of this treatment access program was precisely the fact that the conditions necessary to successfully implement it did not exist at the time that it was put into place. Testing equipment necessary to monitor the clinical use on combination therapies were unavailable, and adequate training as well as equipment was lacking throughout the country. Yet the decision was made to move forward as a matter of political will rather than rational planning. The argument made at the time by all sectors involved in AIDS-related work was that Brazil needed to move forward in implementing treatment access as an ethics-based political decision, and to force the rusty machinery of the public health infrastructure to adapt itself in response to this decision. And while this process took time, and is in many ways still a work in progress more than a decade later, it proved to be a remarkably effective strategy.
Importantly, the implementation of the groundbreaking 1996 treatment-access program went hand in hand with a second major innovation, a focus on poverty and structural vulnerability. This was the foundational framework for the project that was developed for the second major World Bank loan, beginning in 1998. In the case of the first loan, the conceptual framework, focused around relatively familiar risk groups and practices, was perhaps less innovative than the political alliance that it created among civil society organizations, service providers, and policy makers. By the time of the second loan, however, poverty had taken on new importance as the overarching theme for proposed activities, and been identified as the driving force behind the evolving shape of the Brazilian epidemic. The symbiotic relationship of this new focus on poverty, together with treatment access, made political sense precisely because the socio-demographic profile of the evolving epidemic would exclude those most affected (i.e., the urban poor) unless the state guaranteed access to treatment.
By the end of the 1990s, the program had emerged as a model response to the epidemic that began to be widely recognized internationally. UNAIDS had issued a book-length report on the response to AIDS in Brazil as part of its Best Practices series.4 Not only had the Brazilian program succeeded in producing generic versions of a number of the most important first-generation antiretroviral medications, but it had also managed to implement treatment access policies across the country in a way that offered proof that health care systems outside the wealthy countries could effectively use complex therapies like antiretroviral treatment. While this latter accomplishment was perhaps less tangible than the manufacture of generic drugs, it was nonetheless a major lesson for other countries with weak health care systems.
The Brazilian treatment program began as a vertically organized bureaucracy guided by PNDSTAIDS with its own administration, staff, logistical systems, and budget. This made it difficult to create horizontal linkages within the Unified Health System (SUS), but was probably the only realistic way to rapidly establish and scale up the program. One of the major challenges in the third decade of the epidemic, however, is to decentralize this program within the SUS and at the state and municipal levels; in a sense, to return from the centralized level to the more local level, where the roots of the Brazilian model had initially emerged.
In addition to seeking to decentralize domestic programs, one of the key developments in the past few years has been a new focus on HIV and AIDS as part of Brazilian foreign policy—and a focus on foreign policy as part of the Brazilian AIDS Program. The foundation for this development had already been laid during the 1990s. As the Brazilian program evolved and consolidated its structure in the mid-1990s, with significant financial support from the World Bank, collaboration with other Latin American countries had become a major focus of attention and was consciously articulated as a priority in order to offer an alternative to the traditional, vertical, North-South dependency relations that had dominated HIV/AIDS program development.
Brazilian support for the creation in 1995 of Horizontec, the Horizontal Technical Cooperation Group for Latin America and the Caribbean, played a major role in facilitating cooperation between the HIV/AIDS programs in the region. While the secretariat for Horizontec moved a number of times after 1999 from its original base in Brazil to other countries, including Cuba, the Brazilian government provided the majority of the resources underwriting regional collaboration. By 2005, the secretariat had returned again to Brazil in recognition of the key Brazilian influence throughout the region. As treatment-access policies began to be adopted by virtually all of the other Latin American countries, through Horizontec, Brazil also began to play an increasingly important role in helping to build the capacity of other Latin American AIDS programs in procuring medications and distributing them through their national health care systems. This included the ongoing provision of generic medications produced in Brazil as part of cooperative relations with a number of regional partners in smaller countries like Bolivia and Paraguay.5
In addition to its extensive technical and financial cooperation with other Latin American countries, the Brazilian government has also pursued active cooperation with the efforts of other countries in parts of Africa and even Asia. A series of accords were signed with other Portuguese-speaking countries like Mozambique and Angola, involving technical cooperation, training, and the exchange of staff. Cooperation around producing and procuring medication has been developed with both India and South Africa. And the exchange of cooperation missions has been an important part of Brazil’s rapidly expanding relations with China. Brazil has allied itself with other developing and poor countries to create a global consensus more favorable to health initiatives. It succeeded, for example, in 2001, when the UN Human Rights Commission declared access to treatment part of the human right to health, and it helped forge a bloc of nations that made the right to treatment a prominent part of the Consensus Statement from the UN General Assembly Special Session on AIDS.
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It is worth noting that the Brazilian program of universal, free access was financially viable in large measure because of the country’s capacity to locally manufacture generic drugs. This created downward pressure on patented drug prices and, importantly, avoided the currency fluctuations that would make it extremely difficult for importing countries to effectively project drug costs. The domestic manufacturing capacity strengthened the Brazilian government’s hand in its negotiations with the multinational pharmaceutical companies by allowing the government to issue a compulsory license in case companies abused their patent monopoly by pricing the drug out of the Brazilian market’s range. This option became all the more important when, with pressure from “Big Pharma,” the United States argued to the World Trade Organization that Brazil’s policy to produce medicines through compulsory licensing broke the international patent agreements of the Trade Related Aspects of Intellectual Property (TRIPS). The WTO accepted these arguments in February 2001. In April of that year, however, the 57th Session of the United Nations Human Rights Commission decided that access to essential medications was a “human right,” especially in light of the urgency of the AIDS pandemic. This victory for treatment access in developing countries with “public health emergencies” was reinforced when the United States rescinded its panel at the WTO.6 The threat to use the principled language of trade agreements on behalf of the universal right to medicines was wielded repeatedly between 2002 and 2007, strengthening Brazil’s negotiating position with various pharmaceutical companies and challenging the restrictive interpretation of the TRIPS agreement within the various negotiations coordinated by the WTO.
 A counselor (right) from the NGO Projecto Esperança comforts an HIV-positive woman in São Paulo. (By Sean Sprague / The Image Works) |
The Brazilian government has also sought to act proactively and strategically to protect PNDSTAIDS from international pressures. While the threat of compulsory licensing was used effectively during this period, for much of the time it was unclear whether or not the Brazilian government would ever really follow through on breaking patents on the basis of classifying HIV and AIDS treatment as a national public health emergency—the justification provided in TRIPS for compulsory licensing.7 It was widely heralded (or decried, depending on one’s point of view) when on May 4, 2007, after months of stalled negotiations between the Brazilian Ministry of Health, headed by José Gomes Temporão, and the Merck pharmaceutical company, Brazilian president Luiz Inácio Lula da Silva decreed the implementation of compulsory licensing of Efavirenz, one of the most widely used medications for the treatment of HIV infection, and used by 38% percent of people on antiretroviral therapy in Brazil.8 Brazil effectively declined the company’s offer to reduce the price of the medication by 30%, and in a precedent-setting decision, moved to produce a generic version.
The Brazilian government and Gomes Temporão deserve huge credit for moving forward and for joining Thailand, the first country to have issued a compulsory license for Efavirenz, in what may possibly become an international movement calling into question the whole edifice of drug pricing, patents, and development. Nonetheless, it was not a decision that the government reached on its own. Persistent and relatively sophisticated advocacy was necessary on the part of treatment activists and their organizations, who reached out to a much broader coalition of activists from a range of different areas (e.g., food security, sustainable development, human rights) in order to work behind the scenes to pressure the Brazilian government.
The Brazilian Interdisciplinary AIDS Association (ABIA) joined the Working Group on Intellectual Property of the Brazilian Network on Integration of Peoples, and took over as the secretariat for that coalition. Long before the government finally chose to move forward, these groups had persistently lobbied and organized diverse organizations and movements to pressure the government to act. The 2005 “Declaration of Civil Society Regarding the Brazilian Negotiations for Voluntary License for AIDS Drugs” issued by the Working Group was supported by 138 international and domestic organizations.9 There were clearly complex alliances over this period, involving people in government as well as activists. In fact, a number of PNDSTAIDS staff members worked closely behind the scenes with civil society activists, as was the case a decade earlier in the campaign to pass the Sarney Law. But it would be incorrect to think that without widespread grassroots mobilization, compulsory licensing would have taken place just two years later. While Brazilian ministers of health have spoken before the UN General Assembly to extol, with some justification, the benefits that have been guaranteed to all Brazilian citizens infected by and living with HIV, Brazilian AIDS activists, quite rightly, remind us that “all this is not something that you are given—it has to be constructed, together,” as part of a social movement aimed not only at responding to an epidemic, but at building a more just society.10
Richard Parker is Professor of Sociomedical Sciences and Director of the Center for Gender, Sexuality, and Health at the Mailman School of Public Health at Columbia University. He is also Director and President of the Brazilian Interdisciplinary AIDS Association (ABIA).
1. A. Berkman, J. Garcia, M. Muñoz-Laboy, V. Paiva, and R. Parker, “A Critical Analysis of the Brazilian Response to HIV/AIDS: Lessons Learned for Controlling and Mitigating the Epidemic in Developing Countries,” American Journal of Public Health 95, no. 7 (2005): 1162–172; J. Cohen, “Brazil: Ten Years After,” Science 313, no. 5786 (2006): 484–87; S. Okie, “Fighting HIV—Lessons From Brazil,” The New England Journal of Medicine 354, no. 19 (2006): 1977–981.
2. Berkman et al., “A Critical Analysis of the Brazilian Response to HIV/AIDS,” 2005.
3. Richard Parker, ed., Políticas, instituições e AIDS: Enfrentando a Epidemia no Brasil (Rio de Janeiro: Jorge Zahar Editora, 1997).
4. UNAIDS, The Brazilian Response to AIDS (Brasília: Ministry of Health, 2000).
5. C. Pimenta, V. Terto Jr., L. Kamel, I. Makmud, and J.C. Raxach (James Mulholand, trans.), Access to AIDS Treatment in Bolivia and Paraguay: International Cooperation and Social Mobilization (Rio de Janeiro: ABIA, 2006).
6. Brazil Ministry of Health, National AIDS Drug Policy (Brasilia: Coordenacão Nacional de DST e AIDS, Ministerio da Saúde, 2002); J. Galvão, “Access to Antiretroviral Drugs in Brazil,” The Lancet 360, no. 9348 (2002): 1862–865.
7. See M.A. Oliveira, J.A.Z. Bermudez, G.C. Chaves, and G. Velásquez, “Has the Implementation of the TRIPS Agreement in Latin America and the Caribbean Produced Intellectual Property Legislation that Favours Public Health?” Bulletin of the World Health Organization 82, no. 11 (2004), available at www.scielosp.org/scielo.php?pid=S0042-96862004001100005&script=sci_arttext; M. Basso and F. Polido, Propriedade intelectual e preços diferenciados de medicamentos essenciais: políticas de saúde pública para países em desenvolvimento (Coleção ABIA, Políticas Públicas, no. 4, Rio de Janeiro: ABIA, 2005).
8. See “Nota de apoio ao Licenciamento Compulsório” (Note in support of compulsory licensing), www.abiaids.org.br/_img/media/Nota_GTPI_Decreto
%20LC%20efavirenz.pdf.
9. The declaration is available for download at www.cptech.org/ip/health/c/brazil/civsoc-brazil05052005.doc.
10. J. Serra, Speech to the UN General Assembly Special Session, 2001; V. Terto Jr., interview, Pills Profits Protest: Chronicle of the Global AIDS Movement, a film by Anne-Christine d’Adesky, Shanti Avirgan, and Ann T. Rossetti (Outcast Films, 2005).
