Australia is spending billions on the universal rollout of direct-acting antivirals (DAAs) as part of its ambitious goal of achieving virtual elimination of hepatitis C by 2030. These ‘revolutionary’, ‘transformative’ drugs can bring about a sustained virological response – that is, a cure – for hepatitis C in over 90 percent of people treated. They are available on the Pharmaceutical Benefits Scheme for all Australians who are covered by Medicare.
In 2020, the Australian Research Council funded researchers in the GLaD program to conduct a major project into the post-cure lives of people treated for hepatitis C in the context of these ambitious elimination efforts. What does life look like for people after hepatitis C cure? Do people cured of hepatitis C continue to experience stigma and discrimination related to their hepatitis C status? Little is known about the life experience of people after they become ‘hep C free’, including what service-delivery, legal or policy dimensions affect and shape ongoing experiences of stigma and discrimination. As Chief Investigator Associate Professor Kate Seear explains,
‘Stigma and discrimination of people who use or have used drugs remains shockingly prevalent in Australia. 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’.
In addition to hearing about people’s everyday experiences, the project aims to review laws, policies and practices, some of which were established prior to the advent of DAAs, and advocate for necessary reforms.
‘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. ‘It is important to identify these and consider reforms so that the law is keeping pace with the needs and experiences of this major group of Australians with a new disease-free status’.
The project kicked off late in 2020 by mapping legal and policy frameworks that may impact people with hepatitis C, even beyond the point of cure. Some preliminary findings are available here.
To better understand the policy, legal, service-delivery and other contexts, we recently moved into a second stage that involved talking to key stakeholders, such as policymakers, lawyers and peer advocates, on latent and emerging issues relating to hepatitis C in a post-cure world. In March 2021, research officers Emily Lenton and Dr Dion Kagan began conducting interviews with people who work with and for the hepatitis C–affected community in New South Wales, Victoria and Queensland. This has included representatives from:
- Peak state and national hepatitis organisations
- Community-based alcohol and other drugs organisations
- Multicultural community health organisations
- Policymakers in the blood-borne virus, sexual health and AOD areas
- Legal professionals and legal advocates, and
- People working in prison and custodial settings
Many of these stakeholders work as peers, and some have their own lived experience of hepatitis C. We are grateful to our project’s Advisory Board for help finding key stakeholders in each state.
The focus of these interviews are the laws, policies and practices that are relevant to the lives of people who have been cured of hepatitis C, and the views of these stakeholders on needed reforms. Participation involves a confidential 1-hour interview on Zoom.
‘Ultimately, our aim is to improve people’s post-cure experiences, enhance belonging and inclusion and reduce discrimination and stigma,’ says Kate Seear. The project is the first of its kind to review these legal, policy and structural dimensions of post-cure life alongside the lived experience of people who have achieved cure.
Keep an eye on the GLaD website, as we will post preliminary findings from this stage in the near future.