Non-uptake of treatment for hepatitis C in the antiviral era: A qualitative analysis

With new hepatitis C treatment regimes a vast improvement on interferon-based regimes, many people have undergone treatment and been cured. Alongside this group, however, are those who have not taken up treatment, even where it is free and readily available. With Australia’s aim of eliminating the disease by 2030, this group are of concern to researchers, health professionals and policymakers.

This presentation draws on 50 interviews conducted for a research project on treatment uptake. Informed by Berlant’s (2007) work on ‘slow death’ and the ‘wearing out of populations’ under late capitalist neo-liberalism, it focuses on three cases of non-uptake to explain the dynamics at work in such apparently inexplicable and individually disadvantageous outcomes.

The analysis is divided into three parts, each focusing on one participant to highlight specific issues. First, 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 efforts to improve life in difficult circumstances and contact with the prison system. All three accounts illuminate the processes shaping decisions about treatment, calling to mind Berlant’s slow death as a condition of being ‘worn out by the activity of reproducing life’ under conditions that both demand self-management, and directly work against it.

In concluding, the presentation points to the distinction between ‘epidemics’ and ‘endemics’ drawn in Berlant’s piece, arguing that the politics of this distinction apply directly to hepatitis C. Offering a novel interpretation of the conditions of hepatitis C’s reproduction, it steps out the need to address the criminalising, pathologising capitalist carceral context of ‘attrition’ (Berlant) that wears out lives even as it fetishises individual autonomy, responsibility and choice.