Diagnosed HIV-positive in 1985, I became an AIDS activist in 1990, a part of the great response Brazilians are building against the epidemic. In Brazil, AIDS medication is distributed free of charge: triple therapy since late 1996 and increasingly good AIDS public services. The government has set high technical standards, established clear clinical guidelines (for the medication it purchases) and an efficient structure for purchasing and distributing medication, and assured that medicines produced in the country are of good quality. Behind this efficient structure created by the Brazilian Ministry of Health's (MoH) National Co-ordination on STD and AIDS, however, lies the highly politically organised Brazilian AIDS social movement, without parallel in the Northern Hemisphere. The demand for access to treatment in Brazil has its roots and its actual sustainability in the strong community formed against AIDS.
The Brazilian AIDS social movement started in the early 1980s and gay groups had been advocating the use of condoms since 1983 (SOMOS and Grupo Gay da Bahia). The social movement includes advocates in community-based organisations (CBOs) --sometimes without any legal identity (formal registration)-- who make political demands on behalf of the societal groups they represent. Advocates can be formal NGOs, networks of people or organisations, or even small groups gathered behind churches in small towns or any other kind of association.

Pressure from communities

Created in 1985 in São Paulo (SP), GAPA (Support Group for AIDS Prevention) was the first formal AIDS NGO working exclusively with AIDS. Today it belongs to a network of 21 organisations (GAPAs) operating throughout Brazil. Three other important milestones were the development of three new organisations in the Brazilian AIDS social movement; they are: one, ABIA (Brazilian Interdisciplinary AIDS Association), an organisation created in 1987 to link the academy and the social movement; two, Grupo Pela VIDDA, established in Rio de Janeiro in 1989 as the first PLWHA support group in Brazil that accepted infected and affected members; and three, the Brazilian Network of PLWHAs (RNP+), founded in 1995, with a present membership of 2,500.
Today, more than 600 NGOs are working with AIDS in Brazil under the umbrella of the State Forum of AIDS NGOs. These organisations are responsible for most of the initiatives and responses the national government is not able to provide. More than just sending delegates to the national fora of AIDS policy making, community activists have been lobbying the government over the last ten years. In the early 1990s, the Grupo Pela VIDDA/RJ and the GAPA/SP sued the federal and state governments to assure access to medication for AIDS patients in hospitals by guaranteeing private or public insurance policies. In the early 1990s, public opinion was not favourable to AIDS patients, who were perceived as guilty for their bad sexual orientation or practice rather than as victims of an epidemic. So too was the opinion at the judicial courts.

The Brazilian AIDS social movement has also worked to provide services for PLWHAs. Among its goals are:

• Provision of free legal assistance to protect PLWHAs' civil rights --especially guaranteeing access to treatment through legal procedures -- and reemployment for those dismissed because of their HIV status. Parallel to the proposition of legal actions, lawyers provided evidence (i.e. clinical research data showing the promising results of the new antiretroviral therapy) to convince judges to decide in favour of PLWHAs.
• To produce a media strategy that would create favourable public opinion regarding AIDS-related topics and convince magistrates of the urgency of the issue.
• To lobby for specific legislation to assure access to treatment covered (at least partially) by the public sector, for inclusion of AIDS medication in the MoH's budget and for compulsory licensing of local production of AIDS medication to lower prices and allow wider access for more individuals.
• To participate in the formulation of public AIDS policy in order to give the view of the social movement and to keep government policies focused on issues relevant to the community.
• To interact with government and private sectors to establish good relations and sustainable responses. Community organisations have hired many of the technicians working on the national AIDS co-ordination programme, thus creating good communication. The focus now is to improve communication with government sectors in addition to the MoH and with state and municipal governments working to decentralise AIDS policies.

The Government response

The Brazilian government consolidated its National Co-ordination on STDs and AIDS, as it is known today, because of direct technical contribution from the community sector and a loan from the World Bank to restructure its National AIDS Programme. The World Bank loan does not cover the expenses of acquiring AIDS drugs however; 100% of the funds comes from the Brazilian taxpayers. If advocacy groups had not built the legal instruments to guarantee inclusion in the federal budget, medication would not be available to those who cannot afford it. The community must remain vigilant, constantly monitoring the budget and the legislation to assure an adequate budget for purchasing drugs.

Conclusion

Although initiatives such as the ones by UNAIDS to involve governments at the global level are important, it is fundamental to create internal mechanisms (legal, budgetary and technical) to guarantee a long-time local response, otherwise they will not be sustainable. International programmes and agencies can promote the political organisation of the civil society in the AIDS field. Communities must have the technical ability to present their responses and take initiatives where governments are not mobilised or skilled to intervene. Well-qualified community technicians are permanently needed and this is possible only if they are funded. If not, they will migrate to the government or private sector, as has been happening in Brazil, debilitating the communities' ability to respond. In the long run, the government's response will be weakened, because it will not be adequately monitored or be accountable to society.

In conclusion, the role of the social movements --not only in Brazil but also worldwide-- has to be enhanced to optimise the quality of the government response and to keep the investments in the fight against AIDS sustainable. More effective participation by community advocates can bring about the needed responses.