Sector highlight: Addressing hepatitis C-related legal, policy and practice discrimination in a ‘post-cure’ world

Professor Kate Seear, research lead in the Gender, Law and Drugs (GLaD) program at the Australian Research Centre in Sex, Health and Society (ARCSHS) at La Trobe University and one of Health+Law’s expert advisors, commenced a three-year research project in 2020 addressing legal, policy and practice discrimination related to hepatitis C in a ‘post-cure’ world.

Professor Seear said: 

‘Our project focused on what we call 'post-cure life', by which we mean the experiences of people who have undergone treatment for hepatitis C and cleared the virus. We were particularly interested in what happens after cure, both in terms of the physical or embodied experience of no longer having hepatitis C, and the other social aspects of life after cure. Is it possible to fully leave the virus behind? Or does the virus linger in some ways? Do people continue to experience challenges in connection with hepatitis C, including stigma or discrimination as a result of having once had the virus? Do people understand those who have previously had hepatitis C to be contagious, or infectious? And how do these understandings relate to drug use, if at all? There is a longstanding and close association between hepatitis C and injecting drug use and we know that drug use is a highly stigmatised and criminalised activity. So we were particularly interested in examining how all of these factors and forces interact and shape people's experiences.’  

The GLaD project reviewed law and policies that impact people living with hepatitis C in Australia and identified opportunities for law, policy and practice reform to reduce stigma and discrimination. They sought to understand more about the experience of new hepatitis C treatments, including whether hepatitis C-related stigma and discrimination persists post-cure. 

While the Health+Law research focuses on hepatitis B and HIV, the two central premises of GLaD’s research into hepatitis C reflect the values and concerns underpinning Health+Law’s approach.  

Professor Seear added: 

‘The first is that although medical advances may work to eliminate the presence of hepatitis C in the bodies of individuals, they may not eliminate the multiple and deeply entrenched social problems that accompany people’s experiences of hepatitis C as a social identity. The second is that Australia’s significant investment in medical cure must be accompanied by commensurable investment to address the interlocking social, policy and legal challenges that continue to affect the lives of people treated for and cured of hepatitis C.’ 

In August 2023, GLaD published a summary report on their research, which is available here: Hepatitis C-related stigma and discrimination in a post-cure world.  

GLaD have also released a documentary podcast called After Cure, which explores experiences of hepatitis C in the new era of curative treatment. After Cure shares the stories of three people from different parts of Australia, documenting their experiences of living with hepatitis C, getting treated with direct-acting antivirals, and life after cure.  

These outputs mark a significant contribution to Australia’s understanding of blood-borne viruses and their wide-ranging impacts on individuals and the community. 

Learn more about the project and listen to the podcast here.