Bureaucratic disorders: biomedical nationalism, pharmaceutical citizenship and access to drugs for rare diseases in the United Kingdom

Speaker: Dr Samuel Taylor-Alexander # Law-Mason Institute, University of Edinburgh

30th Nov 2015

15:30 - 17:00

Staff Room, 6th floor, Crystal Macmillan Building, George Square, University of Edinburgh

At 2.30pm on Tuesday 16 June, 2015, members of the House of Commons slotted into the green leather seats at Westminster Hall to debate “access to drugs for ultra-rare diseases.” In this paper I take the debate as a starting point for describing how “pharmaceutical citizenship” and what I call “biomedical nationalism” are coupled. I analyse the debate alongside legal and policy analysis, interview material (from patient organization members, policy makers, and physicians), and observational data from policy and laboratory settings. This allows me to identify two competing, bureaucratic logics at play in the realm of rare diseases. The first is a civilizing logic that renders as backward the nation state that is unable to care for its citizens. This logic is grounded in the present and the values of the Welfare state. It is aimed toward the immediate deployment of public resources in order to secure individual and national wellbeing. The second is a neoliberal logic that seeks to harvest and capitalize on the economic potential of biological disease. This logic is speculative, grounded in the future and part of a broader project in which the nation state is run like a corporation. While both of these logics pose rare diseases as a matter of national concern, they also highlight the conjugation of genomics and rare diseases. I conclude by reflecting on the consequences of this conjugation.

Speaker bio: