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

Mota, Clarice, Trad, Leny A. B., Dikomitis, Lisa (2022) Sickle Cell Disease in Bahia, Brazil: The Social Production of Health Policies and Institutional Neglect. Societies, 12 (4). Article Number 108. ISSN 2075-4698. (doi:10.3390/soc12040108) (KAR id:100043)


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.

Item Type: Article
DOI/Identification number: 10.3390/soc12040108
Uncontrolled keywords: global health; neglected diseases; black populations; qualitative research; participatory research; decolonization; advocacy; social production; health policy
Subjects: R Medicine > R Medicine (General)
Divisions: Divisions > Division of Natural Sciences > Kent and Medway Medical School
Funders: University of Kent (
Depositing User: Manfred Gschwandtner
Date Deposited: 15 Feb 2023 11:56 UTC
Last Modified: 16 Feb 2023 09:46 UTC
Resource URI: (The current URI for this page, for reference purposes)

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