Introduction

Brazil's response to the HIV/AIDS epidemic has been viewed worldwide as one of its most successful policies. This chapter discusses the crucial and evolving role of civil society organisations (CSOs) in the Brazilian response to the AIDS epidemic. Specifically, we explore the responsibility of civil society in shaping AIDS public policy during the late 1980s and 1990s, and these groups’ evolving and increasing participation on two key issues for HIV/AIDS prevention and treatment: first, policies and interventions aiming to reduce illicit drug-related harms; and, second, initiatives to inform the debate on intellectual property that could hinder the availability of AIDS drugs in the 2000s.

Many different policies could be highlighted in the broad context of the Brazilian response to HIV/AIDS, but our choice of these two aspects is far from incidental. Policies aiming to reduce illicit drug-related harms have been a focus of constant debate in Brazil and elsewhere, for instance, the debate in the US Congress over reenactment of the federal ban on syringe and needle exchange programmes, which was repealed in the early years of the Obama administration.

Similarly, patent protection for drugs to treat AIDS has also been the subject of discussions that have sometimes degenerated into litigation and panels between Brazil and other countries and firms. At the time of writing, civil leaders from Brazil, together with CSOs from Colombia, Peru and Ecuador, have submitted a formal complaint against the European Union for repeated seizures of AIDS drugs and precursors moving through European harbours during shipment from India to Latin America.

For the purpose of this chapter, these two policy cases illustrate the evolving capability of CSOs to influence government decisions: in the former case, as service providers and pressure groups; and, in the latter, by closely informing decision-makers about highly technical aspects of pharmaceutical regulations. Note that these are two facets of interest group participation. Prevention initiatives such as needle exchanges demand legitimacy, while intellectual property is a much more information-intensive arena. AIDS patient groups in Brazil have been able to adjust their capabilities and engage in both respects in an unprecedented example of civil society engagement in a national HIV/AIDS response.