SEATTLE, Washington — When HIV emerged as a global pandemic, governments were slow to respond to the urgent need for a swift public health response. To fill the gap, civil society stepped in and communities came together to develop strategic responses to a growing need for health resources. In Brazil, civil society’s response to the virus was incredibly unique due to the political and social environment of the country in the 1980s.
The 1980s was an incredibly transformative time for Brazil as an almost 20-year dictatorship ended. This brought democratization and allowed civil society to gradually build back up. One of the key steps Brazil took after the fall of the dictatorship was to establish a new constitution. The creation of this new constitution in 1988 aided the country’s orientation towards the provision of universal healthcare and the reorganization of Brazil’s public health system. In addition to the building of structural support, activists came together to demand recognition of human rights as a part of public health.
Civil Society Response to HIV/AIDS
Newspapers started to describe a mysterious emerging disease that soon became known as AIDS. Brazil documented its first case of AIDS in 1980. By 2003, the total number of cases was up to 310,310. As AIDS emerged as an urgent public health issue, people from all areas of civil society came together to act.
In 1996, Brazil enacted a law as part of its National Health System that all people living with HIV and AIDS will have free access to antiretroviral therapy (ART). This monumental achievement would not have happened without the advocacy of civil society and social movements within Brazil.
Impact of the Brazilian Interdisciplinary AIDS Association (ABIA)
A community-based organization that helped reach key milestones and continues to address the needs and human rights of the aforementioned populations through programming and community collaboration has been the ABIA. The initial purpose of ABIA was set up to offer services to people who were HIV positive but were not receiving resources from the Brazilian government and to apply pressure for state action. Herbert de Souza (otherwise known as Betinho) formally founded ABIA in 1987 as a national organization. ABIA was also the first Brazilian organization in which the president disclosed their positive HIV status. ABIA is distinctive in the way that it was made up of a conglomerate of “academics, doctors, religious leaders, state and municipal health authorities and gay activists.”
During the 1980s, de Souza mostly focused on ABIA’s efforts on economically and sexually marginalized Brazilian men. The first strategic response that ABIA staged to reduce transmission in the late 1980s and early 1990s was based on information and education dissemination, which the government failed to provide. ABIA also focused on ensuring blood safety, which was of immediate concern in Brazil. In the late 1980s, ABIA’s strategy started to change. This was a result of the release of epidemiological data that reflected the spread of the epidemic among women with a ratio of four to one.
ABIA Under Richard Parker
In 1991, Herbert Daniel took the position of ABIA’s executive director up until his death in 1992. After, Richard Parker took up the position. Under Parker’s direction, ABIA began to not only focus on the sexual practices of gay and bisexual men but turned its attention to how women’s reproductive health needs also affected the trajectory of the disease. One of ABIA’s projects during the 1990s was Triple Jeopardy. Due to ongoing support from the Ford Foundation, ABIA recruited the anthropologist Jane Galvão to aid in the ongoing projects through the partnership with SOS Corpo and ECOS.
The implementation of the project involved a diversity of input from researchers, women’s health and AIDS activists, policymakers and health practitioners. Over the six years of the project, ABIA organized seminars and workshops. Out of these, came the first empirical publication on women and AIDS in Brazil: “Quebrando o Silencio: Mulheres e AIDS no Brasil.” In 1993, ABIA formed a partnership with Grupo Pela Vidda (Group for Life). It was the first group formed by people living with HIV. It was aimed at combatting the government’s lack of response to the disease.
ABIA continues to be a model for engaging with people with HIV and key stakeholders in effective partnerships. Brazil is a case that has been used as an example of success. But, it is clear that its success has been due to the unique combination of improved government structures and rebuilding of civil society through a framework and demand for human rights. The efforts of Brazilian activists, lawyers, researchers, academics and advocates can teach many lessons. In the face of continuing efforts to fight HIV when many countries remain unstable, marginalized populations have increasing social vulnerabilities. Access to treatment remains a battle.
– Danielle Barnes