“Many of us are rare”: the right to health and the moral economy of rare diseases activism in Brazil (1990-2020)

Abstract

This article discusses the different meanings attributed to the right to health in the mobilizations to guarantee care for rare disease patients in Brazil. Since the early 1990s, rare disease patient family associations have been putting agendas to the public authorities, with demands ranging from the recognition of diseases to the development of research and diagnostic tests. The trajectory of the mobilizations to guarantee care for rare disease patients is part of a broader process of social articulation around the possibilities and limits of the Brazilian National Health System. The right to health is at the center of this process, being the Subject of varied debates and interpretations in the political, health, and legal arenas, involving arguments guided by scientific evidence, legal principles, and moral values. We argue that these variations in the directions of the right to health have involved concomitant processes of strengthening networks of rare disease actors and institutions, and of maturing the healthcare system, both converging towards the establishment of a “moral economy of rare disease patients”. This moral economy is centered on the idea that the public health relevance of these diseases cannot be identified by epidemiological evidence, but rather by individual and family experience. We used a wide scope of documentation: texts from newspapers and magazines widely circulated in the country, legislative material, publications in specialized journals, and website materials from rare disease patient organizations in Brazil.