Paces of Costly Care: Rare Disease Drug Access in Canada

ABSTRACT

Pharmaceutical industry representatives and public drug plan managers hold competing visions of drug access, ones I theorize as “fast” and “slow” care paces. The relationship between free market imaginaries and population-based biopolitics is negotiated through these paces from within the flexible political category of rare disease. In this article, I explore expensive rare disease drug access in Canada’s universal health system through a temporal lens. I show how two families navigate these powerful negotiations, asserting themselves as deserving of resources while finding ways to consider life and death outside of this clash between health system pragmatics and pharmaceutical promise.