Hep C-Related Stigma and Discrimination in a Post-Cure World Since 2016, the entire landscape of hepatitis C has been transformed. That was the year new treatments called direct-acting antivirals, or DAAs, became available. DAAs can cure chronic hepatitis C infection in more than 95% of cases. In these seven years, over 95,000 people living with hepatitis C have been treated in Australia—more than half of the estimated number of people in the country with hepatitis C, which is a lot of lives transformed and many potentially saved. Because of its prevalence among people who have injected illicit drugs, chronic hepatitis C is a heavily stigmatised condition. This is certainly the case in Australia, where this group are the key population affected by the virus, and where illicit drug injecting is criminalised in most jurisdictions. People who contract the virus often go on to experience discrimination and stigma, often in extreme and damaging forms. This has been most documented in healthcare settings, where it can disturb or block access to some of the most basic and vital forms of care. Stigma can injure or kill. Stigma and discrimination is also a legal issue, and can rear its head in contexts where people apply for insurance, citizenship, and more. It has been such a common experience in their life for some that it starts to seem ordinary. So what changes have DAAs brought in the stigma and discrimination associated with hepatitis C? Does their advent herald a transition to a truly ‘post-cure world’? What does life look like for people after treatment,
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and does the stigma and discrimination that often accompanies it go away when they clear the virus? Or do people with a history of hepatitis C still experience stigma and discrimination? If so, where does it occur and in what ways? Are there systems and mechanisms from before the advent of DAAs that need updating? Which laws, policies and practices need reform so that people with or treated for hepatitis C can live better, less burdensome lives? Researchers at the Gender, Law and Drugs (GLaD) program at La Trobe University, Melbourne, wanted to know the answers to these questions, and for three years have been running the Post-Cure Lives Project. This operates through a number of different methods of data collection and analysis, such as interviews with people who have experienced DAA treatments, and interviews with people who work with affected communities across law, policy and service provision, including in drug user organisations, legal services, and government departments developing and implementing new policy on hepatitis C. For the first time ever, the project mapped the laws and legal statutes, and the state and Commonwealth policies relevant to the virus
