Exhausted practical sovereignty and lateral agency: Non-uptake of treatment for hepatitis C in the antiviral era.

ABSTRACT

With the advent of highly effective antiviral treatment for hepatitis C, many people have undergone treatment and been cured. Others, however, have not undergone treatment, even where it is free and readily available. Australia's aim of eliminating the disease by 2030 means this group is of concern to researchers, health professionals and policymakers. This article draws on 50 interviews conducted for a research project on treatment experiences to examine treatment non-uptake in Australia. Informed by Berlant's (2007) work on 'slow death', it analyses experiences of non-uptake to explain the dynamics at work in such outcomes. The analysis is divided into three parts. First, participant Cal describes a lifetime in which hepatitis C, homelessness and prison have shaped his outlook and opportunities. Second, Evan describes intergenerational drug consumption, family contact with the prison system and an equally long history with hepatitis C. Finally, Rose also describes a long history of hepatitis C, complex struggles to improve life and contact with the prison system. All three accounts illuminate the dynamics shaping treatment decisions, calling to mind Berlant's slow death as a process of being 'worn out by the activity of reproducing life' under conditions that both demand self-management, and work against it. In concluding, the article points to Berlant's distinction between 'epidemics' and 'endemics', arguing that its politics apply directly to hepatitis C. In doing so, it highlights the need to address the criminalising, pathologising, capitalist context of 'attrition' (Berlant) that wears out lives even as it fetishises autonomy, responsibility and choice.