title: Negotiating access to medical treatment and the making of patient citizenship: the case of hepatitis C treatment.
abstract: Drawing on qualitative interview accounts with people who have injected drugs, we deploy ideas of biological and therapeutic citizenship to explore how the negotiation of access to hepatitis C treatment enacts patient citizenship potential. We find that the patient citizenship made through hepatitis C treatment divides those who are deserving from those who are not, largely in relation to their presentations of self-control, responsibility and recovery regarding drug use. Accessing treatment requires that patients negotiate their entitlement by reflexively producing the patient citizen role expected of them. In this context of rationed treatment expectation, access to treatment is constructed in relation to gratitude rather than entitlement. Rationed treatment expectation also interplays with a utilitarian approach to hepatitis C expertise. Accounts of the bio-effects of hepatitis C and its treatment as uncertain further weaken the potential for shared illness identity and biosocial membership as well as contributing to treatment delay. We conclude that the construction of hepatitis C treatment as a negotiation of 'recovery towards normality' positions people who continue to use or inject drugs as beyond patient citizenship. Our findings underscore the situated limits of therapeutic and biological citizenship, emphasising that these processes are unavoidably forces of governance.
authors.affiliation: Centre for Research on Drugs and Health Behaviour, London School of Hygiene and Tropical Medicine, London, UK; National Center for HIV Social Research, University of New South Wales, Australia.
authors.forename: Tim
authors.initials: T
authors.lastname: Rhodes
authors.forename: Magdalena
authors.initials: M
authors.lastname: Harris
authors.forename: Anthea
authors.initials: A
authors.lastname: Martin
mesh_terms: D000328:Adult; D005260:Female; D006297:Health Services Accessibility; D006526:Hepatitis C / Q000628:therapy*; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D008875:Middle Aged; D017008:Negotiating; D010349:Patient Compliance; D012924:Social Conditions; D012944:Social Support; D015819:Substance Abuse, Intravenous
keywords: biological citizenship; expert patient; hepatitis C; injecting drug use; therapeutic citizenship