Gina Jae

Current events have brought into stark relief how both the burden of disease and the benefits of efficacious treatments are unequally shared. When not only preventable illness but also the means for its relief are introduced to stratified societies, existing inequities in access to material resources, political power, and rights to employment, safety, and care not only reproduce but widen already disparate health outcomes. This project applies such a lens to the biomedical care and treatment of sickle cell disease among children in the US and France. Providing a finely grained historicity of how scientific and clinical understandings of a disease process coproduce the possibility for its treatment and cure, this book details how biopolitical concerns for risk, scarcity, and futurity have intersected over time and across race, class, and citizenship to produce the unconventional practice of hematopoietic cell transplantation as a treatment for children with sickle cell disease. This study offers anticipatory politics as an analytic paradigm that recognizes anticipation as a form of care and identifies affect and praxis as key components of scientific knowledge production and clinical work. In detailing how health care institutions successfully recruit families to intensify treatment, this research also suggests ways to make effective interventions more equitably available.