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Suffering individuals and the sustainable collective : rare disease drug access and care in Canada McGuire, Marlene (Marlee) Andrée

Abstract

This dissertation is about how public drug payers, pharmaceutical company representatives, policymakers/researchers, patients and families, and patient advocates make and manage meaning around controversial costly ‘orphan’ drugs for rare genetic disease in Canada. Based on 18 months of multi-sited ethnographic fieldwork across Canada, I argue that practices around rare disease drug development and access have created two competing moral/ontological frames. When a drug costs hundreds of thousands to millions of dollars a year, some focus on relieving the ‘suffering individual’ no matter what the costs. Others focus on the importance of the ‘sustainable collective’ to protect the health care system. These individual/collective politics work to control the circulation and use of extremely expensive rare disease drugs within a publicly funded but fragmented health care system. These are framed by social actors as different versions of ‘Canadian values,’ which throws rare disease patients into the epicenter of a difficult politics of deservingness for social investments. My analysis centers around the questions: 1) what do high drug prices do? 2) what are the different politics of care performed in rare disease drug access disputes? 3) how do practices around costly drugs affect and inflect the experience of being ‘rare’ for patients and families? Working at the intersections of medical anthropology and science and technology studies, I show how this individual/collective binary tension is situated in economic conditions of financialized pharmaceutical development and discourses of Canadian nation-making around the public/private tensions of the health care system. The chapters in this dissertation juxtapose ethnography of ‘macro’ level negotiations and practices of rare disease drug resource allocation with the ‘micro’ level experiences of families learning to live with and care for disease among emerging options for treatment. In doing so, I show that this suffering individual/sustainable collective binary works to separate patients from wider questions of collective concern vis-à-vis the health care system and the welfare state. However, paying attention to the ways that the care needs of patients and families get simplified within these politics points to other possibilities for care in drug development and health system relationalities.

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Attribution-NonCommercial-NoDerivatives 4.0 International

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