Sickle Cell Disease in Bahia, Brazil: The Social Production of Health Policies and Institutional Neglect

Clarice Mota, Leny A. B. Trad and Lisa Dikomitis
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Clarice Mota: Institute of Collective Health, Federal University of Bahia, Salvador - BA 40170-110, Brazil
Leny A. B. Trad: Institute of Collective Health, Federal University of Bahia, Salvador - BA 40170-110, Brazil
Lisa Dikomitis: Kent and Medway Medical School, University of Kent and Canterbury Christ Church University, Canterbury CT2 7FS, UK

Societies, 2022, vol. 12, issue 4, 1-20

Abstract: A disease is considered neglected when it is not given due priority in health policies despite the social relevance of that disease, either in terms of the number of individuals affected by it or its morbidity or mortality. Although the causes are structural, neglect in health does not occur in a vacuum. In this paper, we explore how sickle cell disease (SCD) is constructed and neglected in Brazil, based on insights from our long-term participatory qualitative research in the state of Bahia. We present five overarching themes relevant to the social production of SCD, and associated health policies in Brazil: (1) The achievements and setbacks to overcome neglect in SCD, (2) Continuity of comprehensive SCD care; (3) Social movements of people with SCD; (4) Biocultural citizenship; and (5) Academic advocacy. We conclude that it is insufficient to merely recognize the health inequities that differentiate white and black populations in Brazil; racism must be understood as both a producer and a reproducer of this process of neglect. We conclude with a set of recommendations for the main SCD stakeholder groups committed to improving the lives of people living with SCD.

Keywords: global health; neglected diseases; black populations; qualitative research; participatory research; decolonization; advocacy; social production; health policy (search for similar items in EconPapers)
JEL-codes: A13 A14 P P0 P1 P2 P3 P4 P5 Z1 (search for similar items in EconPapers)
Date: 2022
References: View references in EconPapers View complete reference list from CitEc
Citations: View citations in EconPapers (1)

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