Many of us are rare: the right to health and the moral economy of rare diseases activism in Brazil (1990-2020)
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Show full item recordEditorial
Universidad de Granada
Materia
Enfermedades raras Economía moral Derecho a la salud Rare diseases Moral economy Right to health
Date
2022-12-31Referencia bibliográfica
Araújo Neto, L. A., & Teixeira, L. A. (2022). “Many of us are rare”: the right to health and the moral economy of rare diseases activism in Brazil (1990-2020). Dynamis, 42(2), 423–447. [https://doi.org/10.30827/dynamis.v42i2.27716]
Sponsorship
Fundação Carlos Chagas de Amparo à Pesquisa do Estado do Rio de Janeiro (FAPERJ)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 health
care 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.