Today is World AIDS Day. This year’s theme, “Communities make the difference,” recognizes how support at the grass-roots level is critical to HIV/AIDS programs worldwide, providing advocacy, education and support.
About 37.9 million people are living with HIV around the world, and many marginalized groups face discrimination or receive inadequate care. With AIDS programs in many countries under attack, community advocacy plays a critical role in tackling the AIDS epidemic.
How Brazil became a success story
In the global fight against AIDS, Brazil stands out for the pathbreaking set of AIDS policies it adopted in the 1990s. One of the first countries to guarantee all citizens access to lifesaving antiretroviral drugs, Brazil was also one of the first to implement needle-exchange programs and to make human rights a main focus of government AIDS policies.
How did these policies unfold? My new book, “State-Sponsored Activism,” draws lessons from Brazil about the role of community advocacy in sustaining AIDS policy achievements.
Just as remarkable is the untold story of how Brazil maintained and implemented its progressive AIDS policies over the next two decades. For national policymakers to transform broad policy guidelines into concrete government programs, they had to overcome the constant threat of political opposition. Religious conservatives in Brazil’s legislature, for example, proposed discriminatory legislation that contradicted the government’s human rights guidelines, including a bill that would require hospitals to publish the names of anyone diagnosed with HIV. Governors and mayors, unmotivated to invest in local AIDS services, left matching federal AIDS funding to languish in untouched bank accounts.
Many national health programs in Brazil suffered from these kinds of challenges to policy implementation. But most of Brazil’s health programs were much less successful in surmounting these obstacles. By 2010, Brazilians commonly spoke about national AIDS policy as “the health-care system that actually works.”
Advocacy helped shape — and sustain — successful AIDS policy
In researching my book, I learned that continued, sustained advocacy by civic activists was an overlooked factor behind Brazil’s overall success in implementing AIDS programs. Lawsuits filed by members of the AIDS movement catalyzed nearly all of the judicial decisions that reinforced Brazil’s national AIDS policies. Behind much of the legislation to strengthen benefits and protection for people affected by AIDS were congressional AIDS caucuses, organized by members of the movement at the national and state levels. When the media publicized instances of AIDS policy failures, it was often activists who had brought the issue to the attention of the news media.
Social-movement pressure can be an important factor in getting governments to adopt new policies. But the international development community tends to see the implementation of AIDS policy as a technical challenge, driven forward by bureaucrats and politicians. The successes of Brazil’s AIDS policies, however, suggest that advocacy from activists also has been critical for sustaining change.
Of course, funding helped sustain AIDS advocacy
The data suggest there has been plenty of global funding for civic AIDS organizations — much of it directed toward helping civic organizations provide services. What donors often overlook is the significant time and energy that the leaders of these organizations must dedicate to managing these short-term service projects, including reports for those funders. Nonprofit organizations, with small budgets and limited staff, would then have little time or resources to dedicate to AIDS advocacy.
Brazil’s AIDS organizations, by contrast, tapped into project funding from global and national sources that specifically promoted their ability to do advocacy. AIDS organizations across the country received legal aid funding to take human-rights-abuse cases to court. Experienced AIDS advocacy organizations received project funding to help them train newer organizations in advocacy. This type of funding directly helped Brazilian organizations participate in AIDS-linked activism.
An important point to note is that Brazil’s AIDS organizations received advocacy funding from the national AIDS program itself. National civil servants, confronting myriad political threats to AIDS policy from inside government, set aside some of their budgets to support advocacy.
Funding to cover meeting and travel costs, and to help coordinate collaboration on AIDS-related events and activities, proved critical to maintaining a strong national advocacy coalition.
When advocacy groups regularly convene, for instance, experienced activists across the country can give new grass-roots leaders information, training and resources to leverage in making demands on government. Strong national coalitions, in turn, help to sustain activism because they allow advocacy organizations to pool resources and defend their policy goals.
National funding was particularly important for sustaining advocacy in Brazil because global funding for civic AIDS organizations had largely disappeared from Brazil by the early 2000s. After witnessing the initial successes of AIDS advocacy in Brazil, global donors shifted their focus to “needier” countries. In so doing, global donors threatened to undermine the very successes they had helped create.
AIDS policy faces greater challenges than ever
In 2019, Brazil’s national AIDS program and civic activists face a new threat: President Jair Bolsonaro opposes LGBTQ rights and appears to rank AIDS programs as a lower priority. At the same time, HIV cases have risen sharply among young Brazilians and other vulnerable populations.
What’s happening in Brazil echoes new challenges to AIDS policy elsewhere. Globally, a number of political leaders are attacking human-rights-based approaches to AIDS prevention and treatment. Brazil’s AIDS policy successes — and the role of continued advocacy to sustain AIDS policy success, and continued funding for civic mobilization that helps sustain that advocacy — may help frame a model for the next chapters in the global fight against AIDS.
Jessica Rich is an assistant professor of political science at Marquette University and the author of “State-Sponsored Activism: Bureaucrats and Social Movements in Democratic Brazil.” (Cambridge University Press, 2019). You can follow her on Twitter at @jajrich.