IDEAS home Printed from https://ideas.repec.org/a/gam/jsoctx/v12y2022i4p108-d865485.html
   My bibliography  Save this article

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

Author

Listed:
  • 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
    as

    Download full text from publisher

    File URL: https://www.mdpi.com/2075-4698/12/4/108/pdf
    Download Restriction: no

    File URL: https://www.mdpi.com/2075-4698/12/4/108/
    Download Restriction: no
    ---><---

    References listed on IDEAS

    as
    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).
    Full references (including those not matched with items on IDEAS)

    Citations

    Citations are extracted by the CitEc Project, subscribe to its RSS feed for this item.
    as


    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.

    Most related items

    These are the items that most often cite the same works as this one and are cited by the same works as this one.
    1. Clare Shelley-Egan & Jim Dratwa, 2019. "Marginalisation, Ebola and Health for All: From Outbreak to Lessons Learned," IJERPH, MDPI, vol. 16(17), pages 1-12, August.
    2. Sverdlik, Alice & Kothiwal, Kanupriya & Kadungure, Artwell & Agarwal, Siddharth & Machemedze, Rangarirai & Verma, Shabnam & Loewenson, Rene, 2024. "Understanding the interplay of occupational, public health, and climate-related risks for informal workers: A new framework with findings from Zimbabwe and India," Social Science & Medicine, Elsevier, vol. 348(C).
    3. Rayane Cristina Souza & Pedro Agnel Dias Miranda Neto & Jessflan Rafael Nascimento Santos & Sílvio Gomes Monteiro & Maria Cláudia Gonçalves & Fabrício Brito Silva & Rodrigo Assuncao Holanda & Julliana, 2019. "Sickle Cell Anaemia Prevalence among Newborns in the Brazilian Amazon-Savanna Transition Region," IJERPH, MDPI, vol. 16(9), pages 1-8, May.
    4. N. Jensen & A. H. Kelly & M. Avendano, 2021. "The COVID-19 pandemic underscores the need for an equity-focused global health agenda," Palgrave Communications, Palgrave Macmillan, vol. 8(1), pages 1-6, December.
    5. Kelly, Ann H. & Lezaun, Javier & Löwy, Ilana & Matta, Gustavo Corrêa & de Oliveira Nogueira, Carolina & Rabello, Elaine Teixeira, 2020. "Uncertainty in times of medical emergency: Knowledge gaps and structural ignorance during the Brazilian Zika crisis," Social Science & Medicine, Elsevier, vol. 246(C).
    6. Baffoe-Bonnie, Marilyn S., 2022. "Lived experience with sickle cell disease: Predictors of altruistic participation in clinical research," Social Science & Medicine, Elsevier, vol. 313(C).

    Corrections

    All material on this site has been provided by the respective publishers and authors. You can help correct errors and omissions. When requesting a correction, please mention this item's handle: RePEc:gam:jsoctx:v:12:y:2022:i:4:p:108-:d:865485. See general information about how to correct material in RePEc.

    If you have authored this item and are not yet registered with RePEc, we encourage you to do it here. This allows to link your profile to this item. It also allows you to accept potential citations to this item that we are uncertain about.

    If CitEc recognized a bibliographic reference but did not link an item in RePEc to it, you can help with this form .

    If you know of missing items citing this one, you can help us creating those links by adding the relevant references in the same way as above, for each refering item. If you are a registered author of this item, you may also want to check the "citations" tab in your RePEc Author Service profile, as there may be some citations waiting for confirmation.

    For technical questions regarding this item, or to correct its authors, title, abstract, bibliographic or download information, contact: MDPI Indexing Manager (email available below). General contact details of provider: https://www.mdpi.com .

    Please note that corrections may take a couple of weeks to filter through the various RePEc services.

    IDEAS is a RePEc service. RePEc uses bibliographic data supplied by the respective publishers.