Making Time for Blood: Patient Communities and Infrastructure in the Care of Thalassemia in India

This project is about the experiences of people – practitioners, families, and patients – involved in care-giving practices for thalassemia and sickle cell anaemia, a group of blood-related diseases caused by inherited abnormalities of haemoglobin in the body. Diagnosed in infancy or early childhood, these diseases are chronic unless treated by a bone marrow transplant, which is the only curative treatment to date but also quite expensive. Without it, patients require regular transfusions of blood in order to lead a “normal” life. Based on fieldwork in governmental and non-governmental clinics, as well as with thalassemia patient communities, I will focus on how individuals learn to live with a chronic condition through engagement with infrastructure and biological substances – blood, cells, and DNA.

Thalassemia enjoys little presence within public health discourse in India, which is often dominated by the “big” causes of death, especially, cancer, heart disease, and diabetes. However, the scientific literature reveals that thalassemia remains the single largest autosomal disorder worldwide, a considerable burden of which is carried by the Indian population. It also remains one of the few single-gene disorders that has been successfully mapped within the human genome, extensively studied as an instance of “haemoglobinopathy”, medicalized in both high- and low-income countries – sometimes at the cost of stigmatizing particular communities – and put forward by patient groups as a chronic condition that requires state support. The advances of biomedicine and molecular genetics are thus embodied by those at risk of genetic diseases, though hardly in value-neutral terms. In keeping with this historical context, I turn to the lived experiences of thalassemic patients and families as they partake in the political economy of health schemes, molecular diagnostic tests and surgical procedures, and the moral economy of blood donations, screening programmes, and genetic counselling.

Drawing on phenomenological anthropology, my research dwells into how patients embody a disease that revolves around politically, ethically, and, sometimes, economically charged substances. How and when do individuals “become” patients and/or citizens in the temporalized space of the clinic? Finally, what do their interactions with state-led programmes for the prevention and control of thalassemia reveal about the changing relations between laboratory science, health policies, and disease identities in India? The project contributes to the growing literature on Science, Technology and Society, the politics of care, and kinship and new genetics. In addition to illustrating how patients of genetic diseases negotiate relatedness, everyday politics, and the circulation of gifts in the bio-economy, this project will contribute more broadly to the study of the history and present of medical genetics in India.