Addressing hepatitis-C-related legal, policy and practice discrimination in a post-cure world

2020-2023

Kate Seear, Suzanne Fraser, kylie valentine, Adrian Farrugia

Dion Kagan, Emily Lenton, Sean Mulcahy, Andrew Whalley

Hepatitis C is a major public health challenge linked to profound discrimination, including in law and policy. Significantly improved treatments called direct-acting antivirals (DAAs) were introduced in 2016, with the ability to cure hepatitis C in over 95 percent of cases. The Australian Government has invested billions of dollars in DAAs, setting the ambitious goal of achieving virtual elimination of hepatitis C in Australia by 2030. However, questions remain about the stigma and discrimination faced by people who have undergone treatment, and those who continue to be affected by hepatitis C.

This project reviews the laws, policies and practices that impact people with hepatitis C in Australia, identifying opportunities for reform that may reduce experiences of stigma and discrimination. It explores people’s experience of new treatments, and their experience of life post-cure, including whether hepatitis C-related stigma and discrimination persists and which forces shape ongoing stigma and discrimination. The project is aimed at supporting better legal, social and policy outcomes for Australians cured of hepatitis C.

Download the Post-Cure Lives report here.

Partners & funding

This project is funded by the Australian Research Council.

Associated publications

• Seear, K., Fraser, S., Farrugia, A., valentine, k. (2021). Beyond a “post-cure” world: Sketches for a new futurology of hepatitis C. International Journal of Drug Policy 94. doi.org/10.1016/j.drugpo.2020.103042
  This article outlines key assumptions about medical cure, establishes the importance of addressing post-cure lives and outlines a theoretical framework for examining hepatitis C futures.
• Seear, K. & Lenton, E. (2021). Becoming posthuman: Hepatitis C, the race to elimination and the politics of remaking the subject. Health Sociology Review 30(3): 229-243. doi.org/10.1080/14461242.2021.1971102
  This article examines the effects of the race to eliminate hepatitis C on subjects by tracing a series of shifts in the landscape of hepatitis C policy and practice, including changes regarding consent to testing.
• Seear, K., Fraser, S., Mulcahy, S., Kagan, D., Lenton, E., Farrugia, A. & valentine, k. (2022). Echoes & Antibodies: Legal veridiction and the emergence of the perpetual hepatitis C subject. Social & Legal Studies. doi.org/10.1177/09646639221115698
  This article examines legal processes pertaining to hepatitis C and argues that laws and legal processes undermine claims about a singular, post-cure world, in which people are imagined as no longer marked by hepatitis C, or subject to stigma and discrimination.
• Seear, K., Mulcahy, S., Kagan, D., Lenton, E., Fraser, S., valentine, k. & Farrugia, A. (2023). Complicating cure: How Australian criminal law shapes imagined post-hepatitis C futures. Sociology of Health and Illness. doi.org/10.1111/1467-9566.13562
  This article explores how Australian criminal law continues to constitute hepatitis C as serious and disabling in ways that complicate the imagined transformation and progress of biomedical cure.
• Mulcahy, S., Seear, K., Fraser, S., Farrugia, A., Kagan, D., Lenton, E., Elphick, L., & Holas, N. (2022). Insurance discrimination and hepatitis C: Recent developments and the need for reforms. Insurance Law Journal. https://doi.org/10.26181/22091411.v1
  This article examines Australian case law on insurance and hepatitis C alongside recent reform to HIV insurance law. It argues that DAAs have made legal assumptions around the risks associated with hepatitis C outdated and proposes reforms to tackle discrimination.
• Mulcahy, S., Seear, K., Fraser, S., Farrugia, A., Kagan, D., Lenton, E. & valentine, k. (2023). Performing Hepatitis C, Problematising “Cure”: The Construction of Hepatitis C (Cure) in Social Security and Migration Law. Law and Literature. https://doi.org/10.1080/1535685X.2023.2221950
  This article investigates the construction of hepatitis C in legal proceedings and how the introduction of direct-acting antiviral treatments have re-shaped conceptualisations of hepatitis C from something that is viewed, in legal contexts, as a ‘disability’ to something that is seen as readily ‘curable’.
• Kagan, D., Seear, K., Lenton, E., Farrugia, A., valentine, k., Mulcahy, S. (2023)  ‘I’m not hep C free’: Afterlives of hepatitis C in the era of cure, Medical Humanities. http://dx.doi.org/10.1136/medhum-2023-012653
  This article draws on interviews with people who have been treated for hepatitis C to explore the meanings they attach to cure, their experiences of post-cure life, and the social and other effects of hepatitis C that may linger after cure.
• Kagan, D., Lenton, E., Mulcahy, S., Seear, K., Farrugia, A., valentine, k., Edwards, M. & Jeffcote, D. (2023). Hepatitis C-related stigma and discrimination in a post-cure world: Summary report of project findings and recommendations. La Trobe University, Bundoora.
  This report details findings and recommendations from an Australian Research Council-funded project entitled ‘Addressing hepatitis C-related legal, policy and practice discrimination in a post-cure world’. The report details people’s experiences following hepatitis C treatment, and the laws, policies and practices that shape stigma and discrimination after treatment.

Researchers at ARCSHS are working on more academic publications from this project. They will feature here as they are published.

Media highlights

Listen to a showcase of new social research on hepatis C including findings from the post-cure lives project. Produced in collaboration with researchers from the DruGS program at ARCSHS and Hepatitis Australia.

Listen to a documentary podcast about hepatitis C in the age of curative treatment including findings from the post-cure lives project. Produced by researchers from the GLaD program at ARCSHS and with Hepatitis Australia.

Report launch

This is a recording of ‘Hepatitis C–related legal, policy & practice discrimination in a post-cure world: Report launch and findings from a national qualitative study’, which was held on Monday 14 August 2023. ARCSHS shared the findings from a three-year Australian Research Council-funded study (DP200100941) on people’s experiences following hepatitis C treatment, and the laws, policies and practices that shape stigma and discrimination after treatment. The event includes reflections on life after treatment, highlights from the project’s findings, and a panel discussion of the project’s recommendations among people who work in the sector.

Website

For latest information on the project, please visit the Gender, Law and Drugs Program website and Twitter.