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Society for Medical Anthropology
Oral Presentation Session
Marlee McGuire
University of British Columbia
Children with the severe form of the rare ‘inborn error of metabolism’ Mucopolysaccharidosis Type II (MPS II) experience what is characterized biomedically as ‘cognitive decline.’ Their bodies don’t produce enough of an enzyme that metabolizes naturally occurring sugar sulfates in the body. Those then accumulate—in joints and organs and eventually, the brain. Skills they once had, words they once knew, slowly slip away. A clinical trial of a therapy hypothesized to halt or even reverse this process is currently underway. If approved by regulatory agencies, the price of the therapy is expected to exceed $700,000 per year. Drawing on ethnographic fieldwork conducted on this trial in Canada, I look at the logics and phenomena of accumulation (of both capital and of polysaccharides) that coalesce to form a tightly knit equivalency between ‘cognitive decline’ and death. Evocative patient and family stories of this deadly linear trajectory are called into being by industry to justify profit-based logics—and these stories of suffering individuals do cultural work in their silencing of concerns about inequities and high drug prices. Families of children in the trial uphold these logics to make sure conditions supporting treatment remain, but at the same time, they resist the ableist abhorrence of the cognitively different other. They hope for a reversal of damage, but they also insist on the value of their child as they are in the social world. These seemingly contradictory subjectivities show how complexly situated caring practices happen amidst ideologies of cure and cognitive capacity.