Translating Transplant Practices for Sickle Cell Disease in the US and France: National Commitments, Institutional Regimens, Private Sentiments

Columbia University Health Sciences, New York NY

Investigators

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Abstract

? DESCRIPTION (provided by applicant): This pre-doctoral research examines how healthcare centers are making a risky, expensive, yet potentially curative procedure available to children affected by sickle cell disease (SCD), a disabling genetic disorder common to minority and immigrant populations in the United States and France. Although hematopoietic cell transplantation (also known as bone marrow, umbilical cord blood, and stem cell transplantation) has been available to children with SCD for nearly three decades in the US, only a few hundred cases have been documented in the medical literature. Remarkably, a disproportionate number of these cases have taken place in France. Given that private and state-funded insurers in the US universally cover hematopoietic cell transplantation for children with sickle cell disease (who are also federally mandated to receive access to healthcare) other factors need to be considered to explain this disparity, in addition to the question of healthcare cost and access. Using ethnographic methods, including participant observation, in-depth interviews, oral histories, and archival research, this proposal systematically considers the health policy, institutional, and interpersonal contexts that are producing transplant research design, clinical experience, and ethical practice at the level of the healthcare institution. Data collection is being carried out in local healthcare contexts in the US and France at sites that share leadership in SCD research and clinical care; serve vulnerable populations, including historically underserved minorities, immigrants, and children; and yet are experiencing divergence in their transplant practices. This study is an ecological examination of medical innovation and its translation to clinical practice and designed to identify potentially modifiable social and health system determinants and patient-centered outcomes to mitigate disparities when introducing novel treatment options. Building upon her clinical background and ongoing doctoral work in anthropology, the candidate proposes enhanced mentorship and training in hematology, social epidemiology, and mixed methods research to prepare her to become independent public health researcher and medical anthropologist with strengths in clinical investigation and interdisciplinary research in the care of SCD affected populations.