‘Doctors do not know about Cystic Fibrosis’: Examining structural vulnerability in the management of rare diseases in India

Sibille Merz and Ramila Bisht

Social Science & Medicine, 2025, vol. 380, issue C

Abstract: Individuals living with rare diseases have conventionally been understood as being particularly vulnerable, which often promotes a negative and stigmatising interpretation of vulnerability. In this article, we embrace the framework of structural (health) vulnerability to gain a deeper understanding of the circumstances and factors contributing to adverse outcomes in the specific context of a Global South country, India, and a particular rare disease, Cystic Fibrosis (CF). By drawing on published materials and preliminary data from an evolving ethnographic research project, we contend that it is crucial to examine global power dynamics and the unequal distribution of resources to contextualize the precarious conditions experienced by Indians living with CF. Epistemologically, this stems from pervasive racialised assumptions ingrained in CF knowledge production, constituting a form of hermeneutic injustice, while economically, India's position in the global bioeconomy restricts access to potentially beneficial treatments derived from advanced clinical research. Moreover, reduced investment in healthcare by the Indian Central Government, notably evident in its rare disease policy, leaves CF patients reliant on philanthropy, which is susceptible to shifting interests and priorities. Therefore, we argue that focusing on structural (health) vulnerability is essential for shedding light on the distinct challenges faced by individuals living with CF in India, as well as in other locations in the Global South.

Date: 2025
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DOI: 10.1016/j.socscimed.2025.118175

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