'I'm not hep C free': afterlives of hepatitis C in the era of cure

Abstract

Since the advent of more effective, new-generation treatment for hepatitis C, immense resources have been devoted to delivering cure to as many people with the virus as possible. The scale-up of treatment aims to prevent liver disease, liver cancer and onward transmission of hepatitis C, but social research shows that people also approach treatment with its social promises in mind, including the hope that it might reduce or eradicate stigma from their lives. Such hopes reflect broader ideas about medical cure, which is seen as an end point to illness and its effects, and capable of restoring the self to a (previous) state of health and well-being. But what does cure mean among people for whom treatment does not produce an end to the social effects of a heavily stigmatised disease? While new treatments promise to eliminate hepatitis C, accounts of post-cure life suggest that hepatitis C can linger in various ways. This article draws on interviews with people who have undergone treatment with direct-acting antivirals (n=30) in Australia to explore the meanings they attach to cure and their experiences of post-cure life. We argue that dominant biomedical understandings of cure as an 'ending' and a 'restoration' can foreclose insight into the social and other effects of illness that linger after medical cure, and how individuals grapple with those afterlives. Drawing on recent conceptual re-framings of cure from medical anthropology and disability studies, we suggest that thinking at the limits of 'curative reason' helps to better address the afterlives of chronic illness. In the case of hepatitis C, reconceptualising cure could inform improved and less stigmatising ways of addressing people's post-cure needs. And in the era of hepatitis C elimination, such reconceptualisation is increasingly important as the cohort of people undergoing treatment and cure expands worldwide.

Keywords: Medical humanities; Qualitative Research; philosophy of medicine/health care; sociology.