Stigma and Discrimination in a Post-Cure World – Part 1

Readers of this blog will know hepatitis C well as a blood-borne virus which can lead to cirrhosis, liver failure and other major health problems. Along with hepatitis B, it is the primary cause of liver cancer in Australia—the fastest growing cause of cancer death in the country.

However, 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. In Australia they were introduced under the Pharmaceutical Benefits Scheme (PBS), at an estimated initial cost to the federal government of $3 billion. DAAs can cure chronic hepatitis C infection in more than 95% of cases. And so, since 2016, over 95,000 people have been treated with them in Australia, and at least 94% of these people were cured. That’s 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.

Such stigma and discrimination can happen at work, and in intimate and family relationships, but has been most documented in healthcare settings, where it can disturb or even block access to some of the most basic and vital forms of care. This means that 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. Among some people with, or treated for, hepatitis C, it has been such a common experience in their life with the disease that it starts to seem ordinary.

So what about the DAA treatments for hepatitis C, far simpler and more effective to administer than previous treatments, and been hailed as ‘ground-breaking’ and ‘game-changing’ for hepatitis C and people affected by the virus. What changes have these revolutionary curative treatments caused 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, 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?

Also, given there are forms of structural discrimination, inequity and stigma baked into laws, policies, and service practices, are there systems and mechanisms from before the advent of DAAs that need updating? Which laws, policies and practices are in need of 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 Australian Research Council-funded project, led by Associate Professor Kate Seear, with a team of five chief and associate investigators, and three project staff, has been investigating these questions through a number of different methods of data collection and analysis. This included interviews with people who have experienced these treatments across three states in Australia, 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 to then analyse how they shape hepatitis C-related stigma—either in ways that reduce or amplify it—and whether they are in need to reform.

All of the work has been focused on the goals of better understanding the experience of hepatitis C in the era of cure, in what ways hepatitis C-related stigma and discrimination persists, and how to tackle it. Although the focus has been on the unique context of Australia, the project’s findings will have worldwide application and ramifications, particularly as other countries follow Australia’s lead in working to scale up the provision of DAA treatment and pursuing the World Health Organization’s global goal to eliminate hepatitis C.

In August 2023, the GLaD team released their summary report from the project.  It includes an overview of findings, as well as a list of recommendations for reforms to law, policy and practice in Australia. These recommendations all aim to reduce the stigma and discrimination related to the virus, to make life better for people with (a history of) hepatitis C in various ways, and to support viral elimination.

The team were excited to launch the report at an event that included reflections on life after treatment, highlights from the project, and a robust discussion of its recommendations and how they might be implemented among a range of stakeholders in the sector. The report is now available to download and read here. We’ll have a look at the results in our next blog post.

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