New research: hepatitis C-related discrimination in a post-cure world

Project leader: Associate Professor Kate Seear

Hepatitis C has long been a major public health challenge in Australia. This challenge may become a thing of the past, however, with the advent of new drugs for the treatment of hepatitis C. These drugs have been heralded as ‘revolutionary’, with the potential to both eliminate hepatitis C and transform the lives of people with the condition.

Australia has committed to eliminating hepatitis C by 2030. This goal risks being undermined if other associated problems are not urgently addressed, however. Most important is the persistent discrimination, social exclusion and stigma associated with hepatitis C and injecting drug use. Stigma and discrimination increase social isolation and alienation, impede diagnosis and treatment and increase the risk of new infections.

At present the cure for hepatitis C is often posed as able to radically transform people’s lives and lead to a revolutionary ‘new’, ‘future’ life, where people who once had hepatitis C or use drugs are no longer denigrated. These hopes are subject to undermining by persistent stigma and discrimination.

A major new project now launching at ARCSHS aims to explore these issues, focussing on post-cure lives. The project aims to identify and analyse the forces that adversely impact on post-cure lives, and develop practical strategies and reforms to reduce post-cure stigma and discrimination. Funded by the Australian Research Council for three years, it is entitled ‘Addressing hepatitis C-related legal, policy and practice discrimination in a post-cure world’. The project will be conducted by an interdisciplinary team led by Associate Professor Kate Seear (ARCSHS, La Trobe University), working together with 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 Kate Seear 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. There are a multitude of laws and policies that were devised in a pre-cure world, which may shape the lives of people who have undergone treatment, and stigma and discrimination of people who use or have used drugs remains shockingly prevalent in Australia. Our study will produce new knowledge on these issues. Ultimately, our aim is to improve people’s post-cure experiences, enhance belonging and inclusion and reduce discrimination and stigma.

This project will begin by systematically mapping legal, policy and practice frameworks that may impact on people beyond cure of hepatitis C, with the aim to review those laws and policies, and advocate for legal, policy and service reforms needed in a post-hepatitis C world. Following this, the project will conduct semi-structured interviews to explore the views of key stakeholders such as peer advocates and policymakers on latent and emerging discrimination-related challenges in a post-cure world. People with lived experience will also be interviewed to explore whether the many, deeply entrenched social, political and structural dynamics that have shaped and limited their lives prior to treatment remain, and if so what reforms they would like to see.