New research raises concerns about hepatitis C post-cure life

We are pleased to announce the next publication from our ARC-funded project, ‘Addressing hepatitis C-related legal, policy and practice discrimination in a post-cure world’.

Co-authored by GLaD program lead Kate Seear, with Suzanne Fraser, Sean Mulcahy, Dion Kagan, Emily Lenton, Adrian Farrugia and kylie valentine, and published in the international journal Social and Legal Studies, the article is titled ‘Echoes and antibodies: Legal veridiction and the emergence of the perpetual hepatitis C subject’.

In this paper, we argue that although there is great optimism within medicine about the transformative potential of new curative drugs for hepatitis C, a focus on medical cure overlooks the entrenched discrimination and stigma associated with both hepatitis C and injecting drug use and the role of law in re/producing it. Drawing on interviews that we conducted with key stakeholders such as policymakers, lawyers, and representatives from peer organisations (N=30) regarding latent and emerging issues with hepatitis C post-cure life, as well as analysis of legal issues shaping post-cure experiences, this paper explores the possibility that legal processes complicate the linear trajectory of progress and transformation that medical cure promises.

Several participants we interviewed expressed concerns that hepatitis C can linger in people’s lives well after the point of biomedical cure. This happens in a range of ways, including via bureaucratic systems and legal mechanisms that register and then encode a person’s hepatitis C status in medical records – records that are not updated once people have been treated and cured. According to our interviewees, records of one’s past hepatitis C status can have ongoing significance for those who have been cured. For instance, one of our interviewees was asked whether they could identify any ongoing challenges for people post-cure. They replied:

I could with living with hepatitis C and how that could be branded on different medical records that travel, or a nurse may say, ‘this patient has had hepatitis’, so in all those indiscreet ways, someone’s viral identity is shared against their knowledge, which can affect care and judgement. But post-cure, maybe if it’s on medical records, maybe there is some sort of echo of that over time. It may cause the dentist to say something to someone or—so I think it could have an echo, a blocking effect with different health services or healthcare, and again I think probably on a personal level it’s about someone’s relationship with their viral identity, and them being free about the discussion or not of that. How much do they identify as being hep C positive before they were cured? I think all of those factors could play into a post-cure positioning.

(emphasis added)

These accounts problematise the neat, simplistic binary of ‘infected’ and ‘cured’ subjects (see also Fraser and Treloar, 2006) presumed to be established by new treatments for hepatitis C.

One particular issue that came up several times in our interviews concerned the meanings attributed to hepatitis C antibodies. Although new treatments can cure hepatitis C, hepatitis C antibodies remain detectable in the blood of people who have had the virus. According to our interviewees, the presence of these antibodies is often misunderstood or misinterpreted, including in legal contexts, which means people are often treated as if they continue to have hepatitis C. Although it is possible to treat these misunderstandings as simple errors readily capable of correction, we offer a different reading here, arguing that specific and unique legal processes allow antibodies to be treated as the virus, and as a source of risk and danger. In this sense, the law helps to make new versions of hepatitis C, with major implications for those affected. Put simply, legal processes remake hepatitis C, and permit the making of legal subjects who are simultaneously (medically) ‘cured’ and (legally) ‘marked’ as perpetual hepatitis C subjects.

The complicated picture of post-cure life documented in the paper resonates with emerging findings from around the world. However, our work adds important new insights to work on post-cure life, by underscoring the significance of both the legal apparatuses and legal structures that enable hepatitis C and its subjects to be acted upon in particular ways, even after the point of medical cure.

At the conclusion of the paper, we argue that we must grapple with the forces that are remaking hepatitis C and hepatitis C subjects in an era of cure, including because these forces can perpetuate post-cure stigma and discrimination. We also argue that these forces have implications for Australia’s pursuit of the elimination agenda, and must be taken seriously if elimination is to be achieved.

Citation: Seear, K., Fraser, S., Mulcahy, S., Kagan, D., Lenton, E., Farrugia, A. and valentine, k. (Early online). Echoes and antibodies: Legal veridiction and the emergence of the perpetual hepatitis C subject. Social and Legal Studies.