Dis/abling cure: Medical humanitarianism and the transition from management to therapy for Thalassemia-affected in India Samiksha Bhan

Online Guest Lecture
Academy Joint Project „Transition in Rare Diseases“
by Malgorzata Rajtar (Poland) and Eva-Maria Knoll (Austria)
Dis/abling cure: Medical humanitarianism and the transition
from management to therapy for Thalassemia-affected in India
Samiksha Bhan
(PhD candidate Max Planck Institute for Social Anthropology)

Tuesday 24 March 2026, 4:00-5:30pm CET online
Rare Disease Social Research Center
Institute of Philosophy and Sociology, Polish Academy of Sciences
Join us on zoom:
https://zoom.us/j/97410346801?pwd=uXT3dhrTQIxszIoRhAJBi5Hl6fJY4w.1
Meeting ID: 974 1034 6801 – Access code: 702889

The expanding diagnosis of rare diseases has introduced new therapeutic interventions in the global South. These interventions become part of ‘medical humanitarianism’ (Asad and Kay 2014) when they are delivered by transnational experts in partnership with local institutions and NGOs in low-and-middle income countries. In this presentation, I follow the provision of the curative bone marrow transplant (BMT) to patients affected by transfusion-dependent thalassemia in India. Drawing from ethnographic fieldwork and secondary research on health professionals, NGO staff and a family’s encounter with the transplant, I show that in addition to curative success, BMT becomes part of a clinical strategy to transition from management to therapy due to the limited availability of blood transfusion services. As humanitarian logics meet clinical need, I ask what kind of transitions are demanded from patients and their families. While medical anthropologists have extensively followed the double bind of care as
an exploitative and life-sustaining force (Williamson et. al. 2023), I advance thinking with ‘dis/abling cure’ might illuminate how cure becomes available and presented as the only choice when care is limited.

Samiksha Bhan is a PhD candidate at the Max Planck Institute for Social
Anthropology, Germany. Her research lies at the intersection of medical
anthropology, postcolonial STS and disability studies. Her dissertation
approaches genetics as a postcolonial medical intervention being targeted
to India’s most marginalized communities. Focusing on healthcare
providers and patients of rare blood diseases – thalassemia and sickle cell
anemia – Bhan argues that mapping genes is not only a techno-scientific
practice but also mobilizes families and their capacities to care for the
sick. Before finishing her Phd in Anthro-pology, Bhan studied Sociology
at the Delhi School of Economics and English Literature and Literary
Studies at the University of Delhi, India. She currently serves as the
Contributing Editor for Platypus, the official blog of the AAA’s
Committee for Anthropology of Science, Technology and Computing

classic-editor-remember:

block-editor