Brazil

Associação Brasileira Interdisciplinar de AIDS

Adalton Fonseca, Gustavo Matta, Denise Pimenta, Mariana Sebastião, Raiza Tourinho

The Associação Brasileira Interdisciplinar de AIDS (ABIA) (or ABIA) is a 36-year-old non-governmental organisation based in Rio de Janeiro, Brazil. Their work is focused on interdisciplinary and participatory research and advocacy related to HIV/AIDS policy, treatment, and prevention and to health and human rights more broadly. ABIA was created during the democratisation process in Brazil in the 1980s. Its work with LGBTQIA+, anti-racist, and feminist movements directly influenced Brazilian political processes around HIV/AIDS policies and treatment, and shaped the global HIV response. Across its work, ABIA’sIts activities are structured around a democratic and participatory approach that centres human rights and sexual, racial, and gender equity.

Approach to shifting power to communities and fostering equitable knowledge exchange

The organisation’s main theoretical influences are rooted in Paulo Freire’s pedagogical practices and stem from the Latin American concept of Collective Health. In the Freirian tradition, education is understood as a social and a political process that transforms students from passive receivers of knowledge into active actors able to critically understand their contexts and structures of oppression and act to change them. Collective Health is an epistemological and political movement in defence of the right to health, which holds as its central element the interdisciplinarity of knowledge, practices, and policies. The new field fosters dialogue between epidemiology, social sciences and humanities, and policy and planning. Collective Health operationalises social participation as a fundamental tool in health research and in the health system.

As one of ABIA’s leaders reflected: 

“ABIA has always invested heavily in knowledge production. We've always believed that knowledge isn't solely generated in universities. It's generated on the front lines, in activism, and in political mobilisation. It depends on what your purpose is. If your purpose is activism, political pressure, mobilising society, then knowledge production in a space like ABIA can be even more strategic. What's produced in academia is important, but it's more of a backdrop, providing the foundation for political action, but not as driven by the purpose of political mobilisation.”

ABIA works with different social groups affected by HIV/AIDS in three strategic areas: advocacy, research, and education. Its partners include LGBTQIA+ movements, youth networks, women’s movements, black and anti-racist movements, and (more recently) social movements linked to climate change. As an institution with a deeply democratic approach, ABIA involves civil society and communities from the beginning of the research or project design, identifying critical needs and strategies to dialogue with different key actors.

Successes, challenges, and lessons learned through engaging communities

The major success of ABIA has been its ability to engage in meaningful and influential intersectoral dialogue, involving social movements, scientists, intellectuals, health professionals, the justice system, government representatives, progressive politicians, and funders, to address pressing health and social issues.Through facilitating open and honest dialogues amongst diverse actors, the organisation has been able to move toward collaborative learning and change.

 The current major challenge the organisation faces is tied to the reality that HIV/AIDS has dropped from the political agenda in Brazil, largely due to the emergence of the extreme right in Brazilian politics and the reduced global investment in the HIV response, particularly since the COVID-19 Pandemic. 

In this context, ABIA's survival has become dependent on international donations from more progressive funders who can  see the interconnectedness between the defence of systems and structures guaranteeing collective health and a healthy democracy. Drawing lessons from their long experience, ABIA’s leadership considers that to remain relevant and impactful, it needs to be able to adapt to different political and social contexts and to adopt an intersectional approach by including different audiences, especially vulnerable populations, in discussions on health, democracy, and human rights.

Pathways for change

For 30 years, ABIA contributed to changing the scientific, political, and cultural environment related to HIV/AIDS prevention, treatment, and social protection in Brazil. Many of these contributions are not visible or quantifiable, as they involve awareness-raising and reducing stigma. However many Brazilian laws and initiatives – and even the Constitution – were decisively influenced by ABIA’s work. These include:

  • Prohibition of the commercialization and controlling of blood and its derivatives: Until the 1980's blood was commercialised by private companies and there was no regular public quality control and treatment to avoid blood transfusion infections. Based on research led by ABIA, an important new regulation was inserted in the Brazilian Federal Constitution of 1988 to prohibit the sale of blood and protect public interests.

  • Introduction of new legislation about HIV treatment adherence: Research conducted by ABIA as part of the Adhesion Project examined the relationship between adherence to combination therapies and safer sexual behaviour, and described the impact of these therapies on the lives of people living with HIV/AIDS. Findings shaped key provisions of The Declaration of the Fundamental Rights of Persons Carrying the AIDS Virus.

  • Introduction of a new law to allow production of generic antiretroviral drugs: ABIA’s research and advocacy efforts propelled the Brazilian government to, first, break the patent for the antiretroviral drug Efavirenz and then to formalise the Generic Drugs Law in 1999.

ABIA’s organisational model for community participation and engagement, based on a fundamental commitment to democracy and human rights, has a great deal to teach other health research organisations about how to centre social participation in practice.

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