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

Author

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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)

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.

Suggested Citation

  • Clarice Mota & Leny A. B. Trad & Lisa Dikomitis, 2022. "Sickle Cell Disease in Bahia, Brazil: The Social Production of Health Policies and Institutional Neglect," Societies, MDPI, vol. 12(4), pages 1-20, July.
    • Handle: RePEc:gam:jsoctx:v:12:y:2022:i:4:p:108-:d:865485
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    References listed on IDEAS

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    1. Hogan, Vijaya K. & de Araujo, Edna M. & Caldwell, Kia L. & Gonzalez-Nahm, Sarah N. & Black, Kristin Z., 2018. "“We black women have to kill a lion everyday”: An intersectional analysis of racism and social determinants of health in Brazil," Social Science & Medicine, Elsevier, vol. 199(C), pages 96-105.
    2. Wellington Santos Silva & Roberto Ferreira De Oliveira & Sanzia Bezerra Ribeiro & Isabel Batista Da Silva & Edna Maria De Araújo & Abrahão Fontes Baptista, 2016. "Screening for Structural Hemoglobin Variants in Bahia, Brazil," IJERPH, MDPI, vol. 13(2), pages 1-6, February.
    3. Creary, Melissa S., 2018. "Biocultural citizenship and embodying exceptionalism: Biopolitics for sickle cell disease in Brazil," Social Science & Medicine, Elsevier, vol. 199(C), pages 123-131.
    4. João Nunes, 2016. "Ebola and the production of neglect in global health," Third World Quarterly, Taylor & Francis Journals, vol. 37(3), pages 542-556, March.
    5. Berghs, M. & Dyson, S.M. & Gabba, A. & Nyandemo, S.E. & Roberts, G. & Deen, G., 2020. "“You have to find a caring man, like your father!” gendering sickle cell and refashioning women's moral boundaries in Sierra Leone," Social Science & Medicine, Elsevier, vol. 259(C).
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    Cited by:

    1. Costas S. Constantinou & Panayiota Andreou & Monica Nikitara & Alexia Papageorgiou, 2022. "Cultural Competence in Healthcare and Healthcare Education," Societies, MDPI, vol. 12(6), pages 1-4, November.

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