Will to Live

AIDS Therapies and the Politics of Survival

João Biehl

• Publisher: Princeton University Press
• Year: 2021
• ISBN:
  9781400832798
• Topic: Social Sciences
• Subtopic: Cultural & Social Anthropology
• Index: Social Sciences

Will to Live tells how Brazil, against all odds, became the first developing country to universalize access to life-saving AIDS therapies--a breakthrough made possible by an unexpected alliance of activists, government reformers, development agencies, and the pharmaceutical industry. But anthropologist João Biehl also tells why this policy, hailed as a model worldwide, has been so difficult to implement among poor Brazilians with HIV/AIDS, who are often stigmatized as noncompliant or untreatable, becoming invisible to the public. More broadly, Biehl examines the political economy of pharmaceuticals that lies behind large-scale treatment rollouts, revealing the possibilities and inequalities that come with a magic bullet approach to health care. By moving back and forth between the institutions shaping the Brazilian response to AIDS and the people affected by the disease, Biehl has created a book of unusual vividness, scope, and detail. At the core of Will to Live is a group of AIDS patients--unemployed, homeless, involved with prostitution and drugs--that established a makeshift health service. Biehl chronicled the personal lives of these people for over ten years and Torben Eskerod represents them here in more than one hundred stark photographs. Ethnography, social medicine, and art merge in this unique book, illuminating the care and agency needed to extend life amid perennial violence. Full of lessons for the future, Will to Live promises to have a lasting influence in the social sciences and in the theory and practice of global public health.

Chapter One

Pharmaceutical Governance

Globalization and Statecraft

“Brazil’s response to HIV/AIDS is a valuable case study of innovative interactions between state and civil society, prevention and care, economic imperatives and ethical values, large-scale action and targeted programs,” Fernando Henrique Cardoso, Brazil’s eloquent former president, told me in an interview in May 2003. I met with Cardoso in Princeton, at the Institute for Advanced Study, where he was participating in a meeting of the board of trustees. After leaving the presidency, Cardoso had been traveling the international lecture circuit and had taken a professorship at Brown University.

The AIDS program was one of the most successful social initiatives consolidated during his administration. In years past, Cardoso has used the program as evidence of the transformation of the state and of social policy that he spearheaded.¹ “I always said that the government must open itself to society. This must be a fluid relationship. Social movements ought to be part of the design and implementation of social programs. That’s how the neediest can be reached. AIDS is the greatest example.”

The new state-society synergy reflected in the country’s AIDS policy has developed in the wake of Brazil’s democratization and the state’s attempt to position itself strategically in the context of globalization, Cardoso argued: “We cannot do politics as if globalization did not exist. Globalization is not in the future; it is here now. I did not want it, but there is no other alternative. This is structural. This new phase of capitalism limits all states, of course, including the United States, but it also opens up new perspectives for states. The old producing state had no ways to capitalize or compete. You must have competition in a market that is global and not local. As we privatized and broke monopolies, we also had to create new agencies and rules to oversee the market, for you cannot allow the state not to have voice in these areas.”²

Brazil had registered one of the highest rates of gross domestic product (GDP) growth in the world from the beginning of the century until 1980, but from then on the economy had practically stood at a standstill, with hyperinflation and a stream of exchange devaluations that finally declined under the Cardoso administration. In the previous fifty years, the Brazilian state had increasingly intervened in the production of goods and services, but this was no longer resulting in growth. By 1990, Brazil had the largest foreign debt in the world: $112.5 billion. The country’s transition from a twenty-year military dictatorship to a democratic regime occurred under the weak, still centralized, and clientelistic government of José Sarney (1985–89) and later the neoliberalizing administration of Fernando Collor de Mello, who was impeached in 1992 under allegations of corruption and abuse of power. Itamar Franco became interim president, followed by Cardoso. In 2003, Luis Inácio Lula da Silva from the Workers’ Party (Partido dos Trabalhadores, PT) became Brazil’s new president (he has been reelected for a second term).

Cardoso said that both he and the new president “in the end say the same thing,” that is, “that globalization is asymmetric and that it does not eliminate the differences imposed on nations. We have to take concrete steps toward decreasing this asymmetry, mainly at the trade level so that we can have access to markets, and also to control financing mechanisms.” He made the case that Lula’s government was basically following the same “ultra-orthodox” economic line of his administration—“there is no other alternative”—but that, “surprisingly,” the new government lagged in social program innovation: “The proposals they have are centralized, very vague, mismanaged, and don’t match with what Brazil already is.” Cardoso was proud of the ways the AIDS program—with its multisectoral partnerships and high-tech delivery capacity—had pushed the envelope of what was governmentally possible.³

In this chapter, I discuss the history of the Brazilian AIDS policy against the background of economic globalization, paying particular attention to the role of science and technology in the design and implementation of responses.⁴ I balance Cardoso’s account with that of other policy makers, AIDS activists, scientists and health professionals, and representatives of the pharmaceutical industry. As I highlight changes the Brazilian AIDS policy underwent over time, I explore how this policy has become paradigmatic of new state-society-market interactions.

The AIDS policy is a product of intense negotiations. Its final form responds to diverse economic and political interests, as well as to the alternatives crafted by citizens. How do these key public- and private-sector actors interact, and how do they theorize their actions? What are the factual grounds of their rhetoric of agency and partnership? How do they measure the success of their lifesaving goals, and how do they conceive social inclusion and ethics? How does governance through model therapeutic policies affect statecraft and politics writ large?

The Social Science of a Transforming Regime

The AIDS policy evolved in a paradoxical space, caught between a downsizing of central government and the desire of politicians to create, in Cardoso’s own words, “new rules for the political game.” During our May 2003 conversation, Cardoso insisted that, even though the external environment today leaves less room for governments to shape national economies, states do not necessarily “disaggregate.”⁵ Rather, he spoke of the state as contingent in nature and of his own political efforts to find new ways, beyond protectionism, to frame the rules of accountability and to find a state voice vis-à-vis the market. “One cannot judge a priori or simplistically whether globalization is good or bad. One must see and decide in practice what is good and what is bad about it. We had to open the economy, keep a strict budget, and stop using inflation as a tool for capitalization. The state guarantees competition and also pushes for changes in the local productive basis.”

Instead of decrying the generalized vulnerability that comes with the free flow of capital, Cardoso emphasized the country’s overall gain from economic globalization, particularly regarding its technological infrastructure: “The products you make must meet global standards. The car can no longer be a cart, as former president Collor used to say. It must be for export. So you must remodel your production. The same product you sell outside, you sell inside. The producer complains for he will have to invest more, but the consumer wins with that.”

Speaking as someone who “successfully” shepherded Brazil toward the global market, Cardoso insisted that the state retains sovereign power: “It is a question of responsibility. Nobody orders you to do these reforms. To say that the World Bank or the International Monetary Fund [IMF] forces you to limit public spending, for example, is a phantasmagoria of those who don’t know how things work. These institutions bring experiences to the negotiating table, and a country like Brazil has enough weight to accept them or not.”

As I interviewed Cardoso and other policy makers, I was struck by the ethos of power and innovation they conveyed and by their extensive use of social scientific idioms to describe their work and vision. While speaking of political alternatives under the constraints of global trade rules, they frequently mentioned terms such as contingency, assemblages, governmentality, flexibility, and scales—terms by now familiar to many social scientists studying contemporary politics.⁶ They had politicized these concepts, and this discursive practice needs to be critically assessed.

The rhetoric of state agency and the abstractions that Cardoso articulated—a mobilized civil society and activism within the state—are part of a new political discourse. This performative language belongs to a public sphere strongly influenced by social scientists, as well as by politicians who do not want to take responsibility for their decisions to conform to the norms of globalization. For example, Cardoso makes no specific reference to the measures his administration took to open the economy, such as changes in intellectual property legislation and the privatization of state industries. This political discourse does not acknowledge the economic factors and value systems that are built into policy making today.

I asked Cardoso how he saw the reform of the state in light of the country’s historical social inequality. He spoke bitterly against what he called “anachronistic revolutionary paradigms,” as if sensing a criticism in my question: “There is no real way to break with all that is here. So you must evolve, right? The overall progress you get from evolutionary social policies is slow; wealth distribution does not happen rapidly, it happens over time. So you must improve and make social policies addressing popular interests. And this is what we were doing.”

Thus, in his “pragmatic” approach to globalization, Cardoso articulates a market concept of society. Citizens are consumers and have “interests” rather than “needs.” The government does not actively search out particular problems or areas of need to attend to—that is the work of mobilized interest groups. “There has never before been so much NGO action within the government as has occurred in the past ten years. In all our social programs there was some kind of social movement involved.”

During his two administrations, centralized decision making, clientelism, and corruption—as he saw it—had been replaced by joint state and grassroots activities informed by public opinion, particularly in the fields of education and health. According to Cardoso, these elements of cooperation and nongovernmental involvement are key for maximizing the state’s regulatory power and equity in the face of the market’s agency in resource allocation and benefits. The work of NGOs and their international counterparts gave voice to specific mobilized communities and helped to consolidate his idea of public actions that were “wider and more efficacious than state action.”

In these conditions, lawmaking is the main arena of state action—and putting new laws into practice is an activist matter. Cardoso lauds the signing of the AIDS treatment law in November 1996 and “even the agrarian reform law. They said nothing would pass.” In mobilizing for a law and approving it, the state realizes its social contract. In Cardoso’s vision, specific policies and legislation replace a wider social contract. In practice, people have to engage with lawmaking and jurisprudence to be seen by the state; as a result, the implementation of the law becomes subject to a whole range of exclusionary dynamics related to economic considerations and specific social pressure.⁷

In fact, empowered by the national AIDS program, activists successfully forced the government to draft two additional legal articles that would allow compulsory licensing of patented drugs in a public health crisis, and this legislation created a venue for state activism vis-à-vis the pharmaceutical industry. To make the antiretroviral treatment rollout economically feasible, the government had to invest in the production of generic drugs and engage in political battles over pricing with major pharmaceutical corporations. Besides successfully bargaining down the price of drugs essential to the AIDS cocktail, Brazil also won a 2001 confrontation with the U.S. government over patent legislation. All these initiatives created an international dialogue on intellectual property and medicines, and in the process, Brazil helped to constitute a southern trade bloc at the World Trade Organization (WTO) aimed at creating a worldwide system of drug price differentiation.

For Cardoso, the AIDS policy is thus emblematic of how state-society partnerships can actually create mechanisms to facilitate a more equitable international situation: “The idea that nothing can be done because rich countries are stronger is generally true, but not always. You can fight and, in the process, gain some advantages. You must penetrate all international spheres, try to influence and branch out. . . . The question of solidarity must be continuously addressed.” Brazil’s struggle for drug price reduction, he says, “shows that under certain conditions you can gain international support to change things. All the nongovernmental work, global public opinion, changes in legislation, and struggles over patents are evidence of new forms of governmentality in action . . . thereby engineering something else, producing a new world.”

In what follows, I describe the practices of activists and the state, as well as the unexpected events that led to this innovative policy amid political and economic restructuring. The voices of these various players, at times discordant, highlight the strengths, weaknesses, and controversies surrounding Brazil’s AIDS policy. The sustainability of the “model policy” is not a given. It has to be constantly negotiated in the marketplace. Its continuity lies largely in the capacity of the new government to grasp fully the pharmaceutical modus operandi it inherited from the Cardoso administration, to navigate it intelligently, and to manage it toward equity.

AIDS, Democratization, and Human Rights

HIV/AIDS emerged in Brazil in the early 1980s, concurrent with the demise of the military state. Its growth coincided with the country’s democratization amid a ruined economic and social welfare system (Czeresnia 1995; Galvão 2000; Parker and Daniel 1991; Parker et al. 1994). The economy’s “miracle years” were over. During the military years, Brazil had experienced fast industrial growth based on a policy of import substitution. But the combination of the 1982 onset of the international debt crisis and a fall in raw material prices forced sharp reductions in imports, public expenditures, and private investments in the country, as in all of Latin America (Adelman 1988). Income fell, unemployment rose, and the public health care system and sanitation services were left to deteriorate. Living conditions worsened for those left behind by development plans and affected by epidemics supposedly once eradicated, such as dengue fever and malaria. In this context of economic decline, a progressive multi sectoral mobilization—including political parties, universities, labor unions, and NGOs—united around democracy in Brazil, culminating in the drafting of a new constitution in 1988.

The struggle for a universal health care system brought the general population into the debates over democratization, and political rights have indeed become equated, for many, with medical rights. “Health,” the new constitution reads, “is a right of every individual and a duty of the state, guaranteed by social and economic policies that seek to reduce the risk of disease and other injuries, and by universal and equal access to services designed to promote, protect, and restore health” (Constitution of the Federative Republic of Brazil 1988). The constitution granted all citizens the right to procure free medical assistance from public services and from government-reimbursed private providers. The principles of universality, equity, and integrality in health services were supposed to guide the new unified Brazilian health care system, known as Sistema Único de Saúde, or SUS (Fleury 1996). In practice, however, the right to health care would have to find ways to be realized amid decentralization and fiscal austerity. In 1989, for example, the federal government spent $83 on health per person, but in 1993, this amount plunged to only $37.⁸ The private nonprofit and for-profit health care sector would end up delivering the bulk of medical services, including government-subsidized inpatient care. Today, high-cost treatments tend to dominate funding at the expense of health promotion and disease prevention programs.

In this section and the next, I examine the ways activists mobilized and successfully put HIV/AIDS on the political agenda. Operating at the level of identity politics, translocal solidarities, and civic participation, these activists established AIDS as a problem of social justice and demanded that the state fulfill its constitutionally mandated biopolitical obligations. They made their biographies public, carried out prevention and assistance work, and moved from micro- to macro-interventions. According to sociologist Herbert de Souza (Betinho), this movement from “anti to pro” does not imply reducing individualities “to a nameless condition without particularity, but to personalizing and to diversifying the public” (1991, p. 9). Participation in an emergent global public sphere and in policy making also implied a professionalization of activism, and heated debates ensued over the representativeness and political autonomy of AIDS activists, as well as over the scope and reach of interventions.

Epidemiological surveillance services registered the first HIV/AIDS cases in 1982: seven homosexual or bisexual men (later, one HIV/AIDS case from 1980 was found in São Paulo). In 1984, 71 percent of all HIV/AIDS cases were among men who had sex with men; injecting drug users and hemophiliacs were also affected. The virus was most prevalent in urban centers—as of 1985, 89 percent of the reported cases came from São Paulo and Rio de Janeiro (Castilho and Chequer 1996). Over the following two decades, this epidemiological profile rapidly and dramatically changed (Bastos and Barcellos 1995, 1996; Cassano, Frias, and Valente 2000).

For example, in May 2000 the homosexual/bisexual mode of transmission accounted for less than 30 percent of the total number of AIDS infections registered since the beginning of the epidemic; transmission through intravenous drug use accounted for 20 percent (MS 2002). By the late 1980s and early 1990s, heterosexual transmission had become predominant, and the number of women infected grew considerably. In 1985, there were twenty-five men for every woman with HIV/AIDS; by 1990, the ratio had reached 6:1, and in 2000 it arrived at 2:1. The feminization of the epidemic also led to a gradual growth of mother-to-child HIV transmission. In 1990, vertical transmission was responsible for 47 percent of HIV infections among children; in 2002, this number had risen to 90 percent.

The epidemic has also rapidly spread among the poor and otherwise disadvantaged. In 1985, for example, 79 percent of the reported HIV/ AIDS cases involved individuals who had at least a high school education; by 2000, 73.8 percent were illiterate or had only finished elementary school (Fonseca et al. 2000; see also Cassano et al. 2000).

By 1985, still early in the progression of the virus, all five regions of the country had already reported HIV/AIDS cases. The Health Ministry and the media, however, kept treating HIV/AIDS as an issue confined to homosexuals in the country’s largest urban centers, posing no threat to the “general population.” According to pioneer AIDS activist Herbert Daniel, since its beginnings, Brazil regarded HIV/AIDS as “...