Oral Presentation Session
Reviewed by: Society for Medical Anthropology
Of interest to: Practicing and Applied Anthropologists, Teachers of Anthropology in Community Colleges, Students, Those Involved in Mentoring Activities
Primary Theme: Ethics
Secondary Theme: Technology
A daily tablespoon of corn starch, a low protein diet, carnitine supplements, Omega 3 fish oil pills, a biologic enzyme replacement therapy that costs $500,000 per year: what links these different substances and practices is that they are all treatments for rare genetic metabolic disease. The conditions that get labeled ‘rare’ or ‘orphan’ constitute a diverse and growing group of up to 8000 genetic conditions that are chronic, disabling, and sometimes fatal. Biomedical care practices in rare disease have been substantially altered in recent years—from a clinical practice of testing and tinkering with different dosages of vitamins and therapeutic diets to one that also includes prescribing and monitoring the use of controversial expensive therapies. Newborn genetic screening programs facilitate earlier treatment of the afflicted, but they equally raise new ethical questions and introduce new inequalities in terms of access and money. In all contexts, patients and their families grapple with being ‘rare,’ particularly as these interventions and technologies open new moral frames for cultural projects of belonging and care.
Part 1 of the panel series “What Does It Mean to ‘Care for Rare’? Anthropological Interventions and Imagination in Rare Disease” attends to the cultural dynamics of resource allocation that assemble around expensive treatments for rare disease—frequently labeled as ‘orphan drugs’ as they are considered to be ‘orphans’ of a market system that orients towards the common. This session opens up and examines the highly affective and contentious category of pharmacological treatment. Papers in this session each examine how rarity becomes defined, enacted, and contested in relation to resource allocation towards low-evidence ‘orphan drugs’ that cost upwards of $850,000 USD per year. In conversation with Part 2 of the panel series, what is common amongst these papers about ‘rarity’ is an imaginative anthropological orientation toward the interplay between institutions, relationalities of disease, and the symbolic dimensions of therapeutic intervention. Rarity emerges as an analytical category for exploring how bodies, experiences, and ethics and economies of care both configure and become configured by cultural frameworks.
What does it mean to ‘care’ about rare disease in an era of hypervaluation in local contexts around the world? In Brazil, particular forms of uncertainty and instability are produced in a context where judicialisation for the right to health for expensive rare disease drugs is increasingly common. In Canada, rare disease patients and families struggle to negotiate a sense of value within the power-laden binary of ‘suffering individuals’ on the one hand and ‘scarcely resourced collectives’ on the other. In the United Kingdom, orphan drugs and the symbolism of innovation and care they carry become embedded in competing state-making logics, ‘conjugated’ with genomics in particular ways. In a comparative frame of India and China, rare disease patients act to become visible to the state, forming complex alliances in the process. In wider European discussions, specific ways of caring become articulated in relation to either disease burden or the inherent value of life, offering an opportunity to rethink drug prices as a ‘matter of care’.