Race, Policy, and Culture: An Identity Crisis for Sickle Cell Disease in Brazil
Melissa S. Creary, MPH, Doctoral Candidate
Graduate Institute of Liberal Arts
Professor Howard Kushner, Chair
Professor Jeffrey Lesser, Co-Chair
Abstract of Dissertation Prospectus
In 2001, Cândida and Altair, a married couple, started a national organization to increase the rights of sickle cell patients, and thereby gave birth to the sickle cell disease (SCD) movement in Salvador, Bahia, Brazil. Cândida, the wife, who carries sickle cell trait, now heads the municipal SCD unit for Salvador. She, with light skin and wavy brown hair, might be considered white in the United States, but when I asked her why she had created the organization she responded: “Eu sou negra!” (I am black). Her darker-skinned husband, who considers himself a black activist, coordinates the national SCD association and helped craft policy for SCD. As a family, Cândida and Altair shift between multiple roles: genetic carrier, parent, government official, and SCD advocate. Together these two activists have helped shape the racial discourse on SCD by associating the disease with “blackness” on the individual, organizational, and national level.
Sickle cell disease is the most common hereditary hematologic disorder in Brazil and throughout the world. In Brazil, the estimated prevalence is between 2% and 8% of the population. My research explores how patients, non-governmental organizations, and the Brazilian government, at state and federal levels, have contributed to the discourse of SCD as a “black” disease, despite a prevailing cultural ideology of racial mixture. Specifically, this project analyzes how the Brazilian state, advocacy, and patient communities within the nation have, at times, branded SCD an Afro-Brazilian disease. At the state level, I’ll describe the reigning racial ideology and how the development of racialized health policy contests their own viewpoint. On the organizational level, I’ll investigate the alignment of the SCD movement with the black movement of Brazil and the decisions made by some of these organizations to influence health policy using anti-racist motives. Lastly, I will explore the actual embodiment of SCD in the patient population and the “identity crisis” many may experience upon being diagnosed with a “black” disease.
With this framework in mind, I aim to answer the question—How are different actors (re)defining race and health through culture, biology, policy and politics in contemporary Brazil? This multi-level identity crisis is in constant contestation of competing racial frameworks at the micro, meso, and macro level. I will manage these complexities with a flexible notion of biological citizenship that considers frameworks of biology, social determinants, and policy in ways that is uniquely responsive to the cultural and historical specifics of how race, identity, health, and legitimacy operate in Brazil.
To do this, I will spend ten months in Brasília, Salvador, and Rio de Janeiro investigating the construction of sickle cell disease on three different levels: advocacy organization around patient rights, individual patient and family experience, and governmental policy development and implementation. To assess the social, geographical, and political context of my subjects, I will use a series of historical and qualitative methodologies.
My work will deepen and re-think narratives of Brazil’s racial history through the lens of SCD. It also stands to generate a better understanding of the historical genealogy as it informs the current implementation of SCD policy. This analysis can provide lessons to both Brazil and the US on how future policy can be designed. Specifically, whether policy developed around populations (or sub-set of populations) can be measured against and be as effective as policy developed around disease.