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

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.

Àgô Sankofa: an overview of the progression of sickle cell disease in Brazil in the past two decades

“…The victims of this disease, the black population in general, and the researchers and investigators seeking ways to control this disease need assurance from the current national administration that the sickle cell program will not be allowed to die a slow death due to financial attrition, attenuated interest, and willful neglect, leading to the phasing out of another minority project 9 (Roland B. Scott, 19789 apud Oransky, 2003, p. 973). Despite the contextual and historical differences, low interest, budget cuts, political maneuvers, and neglect remain as the Brazilian SCD social history records 10 .…”

Àgô Sankofa: um olhar sobre a trajetória da doença falciforme no Brasil nos últimos 20 anos

“…Apesar das diferenças contextuais e históricas, permanecem o baixo interesse, os cortes orçamentários, as manobras políticas e a negligência como registros da história social da DF no Brasil 10 .…”

Cultural Competence in Healthcare and Healthcare Education

“…Mota, Trad and Dikomitis [15] conducted participatory qualitative research in the state of Bahia in Brazil to understand how sickle-cell disease was neglected in health policies. The authors found that there were many issues surrounding the organisation and implementation of good care for patients with sickle-cell disease, and generated recommendations for different stakeholders.…”