Social research project on hepatitis C and post-cure lives

In Australia, a new generation of direct-acting antivirals (DAAs) for the treatment of hepatitis C have been rolled out in a globally unique program of unrestricted, nationwide access. The new drugs, heralded as ‘revolutionary’, bring about a sustained virological response to hepatitis C in over 90 percent of people treated. By the end of 2019, approximately 82,000 Australians living with hepatitis C had received the new treatments. The national target is virtual elimination of hepatitis C by 2030.

For those living with and affected by hepatitis C, this is said to be game-changing. For medical practitioners and health workers, the public health challenge posed by hepatitis C may become a thing of the past. However, initially high treatment rates have recently plateaued and other issues remain, including the prospect of ongoing discrimination and stigma for people who have or have had hepatitis C, many of whom use (or previously used) drugs. As well as social isolation and diminished quality of life, discrimination and stigma matter because they can stifle access to diagnosis, treatment and healthcare, and can undermine the transformative potential promised by new treatments. As researchers at the University of New South Wales pointed out recently, ‘unlike DAA therapy, there is no miracle cure for these problems.’

A major new project launched in late 2020 aims to address these issues, focusing on the post-cure lives of people with hepatitis C. Led by GLaD program lead Associate Professor Kate Seear, the project, ‘Addressing hepatitis C–related legal, policy and practice discrimination in a post-cure world’, will identify and analyse the forces that impact on the post-cure lives of people with hepatitis C and suggest practical strategies and reforms that work to reduce stigma and discrimination. The project is funded by the Australian Research Council (ARC).

Kate Seear is a leading Australian researcher on the social dimensions of hepatitis C and the author, with Professor Suzanne Fraser, of Making Disease, Making Citizens: The Politics of Hepatitis C. As she explains:

The advent of a medical cure for hepatitis C has been heralded as a revolutionary moment for people living with the condition. Although new treatments offer many benefits, we need to be careful not to assume that a medical cure will alone radically transform people’s lives. Stigma and discrimination of people who use or have used drugs remains shockingly prevalent in Australia.

The project kicked off by mapping legal and policy frameworks that may impact people with hepatitis C even beyond cure. ‘There are a multitude of laws and policies that were devised in a pre-cure world, and that may continue to shape the lives of people who have undergone treatment,’ Kate explains. The study aims to review those laws and policies, and advocate for legal, policy and service reforms. ‘Ultimately, our aim is to improve people’s post-cure experiences, enhance belonging and inclusion and reduce discrimination and stigma,’ says Kate.

Funded by the ARC for three years, the interdisciplinary project team also includes Professor Suzanne Fraser (ARCSHS, La Trobe University), Associate Professor kylie valentine (Social Policy Research Centre, UNSW) and Dr Adrian Farrugia (ARCSHS, La Trobe University) as chief investigators. Dr Michael Edwards, from the National Drug and Alcohol Research Centre at UNSW and Mr Danny Jeffcote, the Program Manager of AOD Response at Community Health Service, Victoria are partner investigators. Other ARCSHS staff and members of the GLaD program contributing to the project include Emily Lenton, Dr Sean Mulcahy and Dr Dion Kagan. The project is also served by an advisory panel made up of peer advocates, healthcare workers, lawyers, service providers and policymakers working in the harm reduction, hepatitis and blood-borne virus prevention and treatment sectors.

With the legal and policy mapping recently completed, the research team are now interviewing expert stakeholders across Australia on discrimination-related challenges in a post-cure world. Later in 2021, they will start interviews with people with lived experience of hepatitis C treatment.

You can read the first publication from the project here. And, as well as traditional academic outputs, one of the project’s planned outputs is a podcast exploring people’s experiences of post-cure life. Keep an eye on the GLaD website for more information about our podcast series.