From invisibility to political power: Policy lessons from a decade of Brazil’s Social Forum for Infectious and Neglected Diseases

Neglected tropical diseases (NTDs) cluster among populations living in poverty and facing overlapping social, environmental, and political vulnerabilities. Brazil has one of the most significant NTD burdens in the Americas, yet affected populations have historically had limited influence on national health agendas. In 2016, amid democratic backsliding and fiscal austerity, civil society, researchers, and affected communities created the Brazilian Social Forum for Combating Infectious and Neglected Diseases (FSBEDIN) to strengthen political participation. Using documentary analysis of Forum letters (2016–2025), institutional records, and participant observation, we show how FSBEDIN evolved from a crisis-driven initiative into a recognized actor in Brazilian health governance. The Forum has linked disease-specific movements, expanded the presence of affected leaders in health councils and technical committees, supported leadership training, and helped catalyze the creation of a National Movement for Neglected Diseases. It also advances an agenda that connects NTD control to democracy, social justice, and pharmaceutical sovereignty. We argue that FSBEDIN offers practical lessons for implementing the World Health Assembly resolution on social participation and the WHO 2030 NTD roadmap. We propose policy measures for governments, the WHO, and development partners to institutionalize meaningful involvement of affected communities as a non-negotiable standard for NTD programs.Author summary: Neglected tropical diseases (NTDs) mainly affect people living in poverty, who are often discriminated against and far from decision-making spaces. Technical solutions (drugs, diagnostics, and guidelines) are insufficient if those most affected remain invisible in policy-making. In Brazil, people living with Chagas disease, leishmaniasis, leprosy, and other infections, together with community organizations, researchers, and health professionals, created the Brazilian Social Forum for Combating Infectious and Neglected Diseases (FSBEDIN). Over the past decade, the Forum has become a space where affected leaders learn, organize, and negotiate directly with governments and international partners. It has helped bring NTDs and their social consequences onto national agendas and supported the creation of a National Movement for Neglected Diseases. This Policy Platform shows how this experience can guide other countries. We argue that NTD programs should not be considered successful if affected communities are absent from decision-making. We outline practical steps for governments, the WHO, and donors to fund, protect, and measure meaningful participation as a core component of NTD policy.