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In the tumultuous 1980s, as Brazil returned to democracy, homosexual groups launched a movement to fight the spread of AIDS. Since then, civil society throughout the region has been strengthening its role in the decision-making processes related to the disease.

By Mario Osava

RIO DE JANEIRO - Many in Brazil complain about the precariousness of the country's public health system. Like other countries in Latin America, corporations and the middle-class are forced to pay for costly insurance with private health providers if they want decent coverage. However, there is one exception, one that many consider a model for the entire region: Brazil's National AIDS Programme.

Founded in 1985, just three years after the first AIDS case was reported in Brazil, official policy has achieved unprecedented results. It reduced the mortality rate of the disease by 50 percent (between 1995 and 1999) and slashed AIDS-related hospitalisations by 80 percent (from 1997 to 2000).

What is the secret behind this success? Much of it has to do with non-governmental organisations (NGOs). The efforts of more than 600 civil society groups working to fight AIDS have been key to reinforcing Brazil's response to the epidemic, a fact even the government health authorities recognise. The NGOs have given the government programme "values like solidarity, inclusion, non-discrimination and the fight against prejudice," says Veriano Terto Junior, a sociologist and researcher with the Brazilian Interdisciplinary Association of AIDS (ABIA), founded in 1986.

Gays make themselves heard during a recent "World AIDS Day" in Brazil.

The first response to the HIV/AIDS crisis arose from organised group of homosexuals, who launched information campaigns, promoted public debate and pressed the government to take appropriate measure to fight the epidemic.

The state of Sao Paulo began designing a local initiative in 1983, and two years later the first NGO focused specifically on HIV/AIDS was created: the Group of Support and AIDS Prevention (GAPA).

As Brazil underwent a political transition after a 21-year military dictatorship, the governmental platform in favour of democracy and human rights was influenced by the activism of the gay groups, according to Terto Junior. "Those with AIDS were not merely patients, and civil society was not merely a passive bystander in that process," he said.

Official recognition of the role played by the NGOs was consolidated when the Ministry of Health helped organise the fifth National Meeting of AIDS NGOs, in 1992. By 1994, the ministry was financing projects drawn up by these organisations, selected through a grant programme.

Representatives of the NGOs now participate on the National AIDS Commission, established in 1986 to advise the government in defining and executing its policies to combat HIV/AIDS.

"The NGOs have greater access to specific communities than governmental agencies do because they are more closely related, they understand the subcultures, their language and customs," observed sociologist Rosemeire Munhoz, assistant coordinator of the sexually transmitted disease programme at the Ministry of Health.

The Brazilian experience has inspired civil society movements in other Latin American countries where, little by little, they are gaining ground.

"The Peruvian government should follow the example of Brazil, which finances the efforts of the NGOs and distributes antiretroviral medications to the ill," commented Julio César Cruz, president of PROSA, an organisation in Peru that provides support for HIV-positive individuals.

It was not until 1996 that this Andean country saw cooperation between the government and the NGOs, says Marcos Cueto, a doctor specialising in infectious diseases. He identifies two phases in the Peruvian fight against AIDS. The first (1983-1987) was a period of "apocalyptic panic" and repression against gays and prostitutes, and the second (1988-1995) was centred on the Special Programme to Control AIDS (PECOS), which failed because it limited its efforts to "high risk groups", Cueto said.

In 1997, the Peruvian congress passed a law that penalises discrimination against people with HIV/AIDS and establishes medical standards for handling the disease. It was not until then that many hospital employees were made aware that the virus is not transmitted by simple physical contact.

"The change in attitude among the official agencies was a consequence of the NGOs' efforts," says Ana Rosasco, former director of the AIDS Network Peru, an umbrella for 11 autonomous organisations.

The campaign to fight society's prejudices against people with HIV/AIDS received an important boost in 1998 when TV personality Ernesto Pimentel and well-known footballer Eduardo Esidio publicly acknowledged that they were HIV positive. Both decided to continue with their careers. But Peruvians with AIDS still have a long way to go to achieve full recognition of their rights, Rosasco pointed out.

PROSA's Cruz, HIV-positive for 10 years, charges that the Peruvian government "does not provide the necessary antiretroviral medications and is too sparing in distributing those intended to treat the infections associated with AIDS."

The lack of prevention and treatment efforts means there is a high risk of expansion of the epidemic, which currently involves 11,602 people with full-blown AIDS and 60,000 asymptomatic HIV carriers in Peru.

The NGOs in the region centre their activism around different objectives. But prevention efforts and the demand for "medications for all" is one of their principal goals.

Organisations working to defend women, young people, prostitutes, or street children, for example, include AIDS education designed for the needs of these particular populations.

NGOs of gays, lesbians, transvestites and transsexuals continue to step up their efforts to inform their sector of society about the risks of the disease.

In Brazil, the Group of Support and AIDS Prevention (GAPA) established itself as the point of reference in the fight against HIV/AIDS. Today, there are 20 GAPA offices throughout the country.

And in spite of the ongoing lack of financial resources, the NGOs are multiplying their activities.

The GAPA office in Florianópolis, capital of Santa Catarina state in southern Brazil, operates an orphanage for 72 children, a hospice for adults, a psychological support hotline for people with HIV, a condom distribution programme, and AIDS prevention training for sex workers, whether men or women, says Mary Almeida, coordinator of the NGO.

* Abraham Lama (Peru) contributed to this article.