Health advocacy, citizenship, and social activism: analysis, history, and achievements of the Acre Association of Patients with Hepatitis

Abstract

This study reports the trajectory of the first nongovernmental organization (NGO) created by patients with hepatitis in Brazil, from its inception to its achievements. The objective of this experience report was to describe the struggle faced by the patients with chronic hepatitis in Acre to obtain the healthcare services they required. Acre is a Brazilian state with the highest number of hepatitis cases. Considering this magnitude, active involvement of patients with hepatitis was necessary to attain improvements in healthcare services and access to free treatment. To gain access to comprehensive healthcare services, as established by law, these patients used various strategies, including government appeals, social mobilization, media, and lawsuits. In doing so, they organized into an NGO, became empowered, and while seeking their rights which were constitutionally established yet denied in practice, exercised activities pertaining to citizenship and health advocacy.