December 1 2024 marks World AIDS Day. Dr Helena de Moraes Achcar, a postdoctoral researcher at the Fundação Getúlio Vargas, São Paulo, uses Brazil as a case study to examine the ongoing significance of, and challenges faced by those still in the fight against HIV/AIDS. A revitalization of grassroots community leadership, she argues, is necessary to end AIDS as a global public health threat.
Established by the World Health Organization (WHO), World AIDS Day has been observed every December 1 since 1988. The date serves as an important reminder that, despite progress in terms of prevention and treatment, we must remain committed to preventing new HIV infections and to guaranteeing the rights of the 39.9 million people living with HIV worldwide. Statistics show there are still too many people left behind: in December 2023 only 30.7 million had access to antiretroviral therapy (ARV), short of the 34 million target for 2025.
In a moment of declining political engagement, activists and the Joint United Nations Programme on HIV/AIDS (UNAIDS) have called for urgent support to let communities lead in the response against HIV/AIDS, especially if the goal of world leaders is to end AIDS as a public health threat by 2030. History shows that successful AIDS policies have been driven by grassroots engagement and leadership from within civil society. But there are many challenges to address if the AIDS movement is to resume its protagonism and leadership.
Brazil presents a strong case study here. Its internationally recognized AIDS programme, which provides free, universal access to antiretroviral therapy, was a result of national non-governmental organizations (NGOs) engaging in the fight. By providing legal assistance to people living with HIV, AIDS NGOs forced the state to recognize their right to treatment. Amongst other victories, the movement was responsible for prevention campaigns and for raising awareness about the importance of issuing compulsory licenses for domestic production of ARV. They have also shown that an effective AIDS response depends on strengthening the health system, although the public health system is still significantly underfunded.
Over the last 15 years, however, Brazil’s AIDS movement has faced challenges that impact advocacy initiatives such as protests, media campaigns, lobbying and social participation in policymaking. Like elsewhere in the world, human rights (the very core of the movement’s anti-AIDS agenda) have been under attack by repressive lawmakers. The far-right government elected in 2018 closed spaces of civil-society participation in policymaking, censured campaigns that targeted gay men and sex workers, and downgraded AIDS policy to a lower status within the Ministry of Health. Although this has been recently reversed by President Lula da Silva’s centre-left government, conservatives within congress remain a challenge when it comes to advancing a human-rights agenda and the fight against AIDS.
Even before the rise of the far right, the movement saw funding for political activities being significantly reduced. In the 1990s and 2000s there were important loans from the World Bank, and funding from the federal government and international foundations. But over time, AIDS has been deprioritized internationally and nationally. This is partly explained by the fact that with new pharmaceutical technologies for treatment and prevention, such as the triple therapy and pre-exposure prophylaxis (PrEP), AIDS has become a chronic disease and the cause has lost its urgency and appeal.
At the same time, a new discourse on the possibility and immanency of a cure for HIV/AIDS has been promoted by powerful actors such as UNAIDS, the Global Fund, the U.S. President’s Emergency Plan for AIDS Relief (PEPFAR), and the United States Agency for International Development (USAID) By promising a ‘magic bullet’ approach based on biomedical solutions, this discourse has discouraged donor support for political activism and initiatives that tackle structural problems – poverty, gender inequality, stigma, etc. – that perpetuate HIV.
According to many activists, it has been very difficult to mobilize people to engage in the cause. This is partly explained by the fact that many people living with HIV today can live a normal life without the fear of death. But perhaps more important is that the profile of the epidemic has changed. Today, new cases of HIV happen mostly within the most vulnerable part of the population in Brazil. The ‘pauperization’ of AIDS means that those who are left behind are also those who are usually the most difficult to mobilize because of their lives. Living at the margins of society, they lack the most basic services and conditions such as housing, food, jobs, etc. Activism is rarely their priority.
Ultimately, it is not only external factors such as pauperization, governments and funding that have affected the movement’s mobilization. The very structure of the movement – its cleavages and grievances based on class, gender and race – should be critically considered. Part of what divides the movement in Brazil is the struggle around what is legitimate anti-AIDS activism. Those who are closer to the communities, providing support such as counseling to people living with HIV, tend to look suspiciously at those lobbying politicians in Congress, often referred to as the owners of the movement. The latter, on the other hand, will point to the de-politicization of the former, and their lack of political education or training. Acknowledging power relations within civil society is necessary in order to create unity. A cross-class, galvanizing vision would also help build alliances with organizations outside the movement who fight common issues such as poverty and tuberculosis, for example. Literature on social movements shows that, in order to re-mobilize the AIDS movement, creating a common identity is fundamental to its success. For this year’s World AIDS Day, our hope is that grassroots communities will garner more support to resume their leadership in this global health fight.