‘I’m not hep C free’ – new research explores the afterlives of hepatitis C

Since more effective treatments for hepatitis C became available in Australia in 2016, huge energy and resources have been devoted to delivering cure to as many people with the virus as possible. This upscaling of treatment aims to prevent liver disease, liver cancer and onward transmission of hepatitis C, and is part of Australia’s ambitious policy to realise the World Health Organization’s goal of eliminating hepatitis C by 2030. These efforts will save lives and improve the health and wellbeing of many individuals, but how do new treatments affect people’s social experience of the virus? There are complex and entrenched social, legal and equity issues associated with hepatitis C, shaped through its connection with the heavily stigmatised and criminalised practice of injecting illicit drugs. What impact do the new-generation, curative treatments have on those aspects of living with the virus?  

The GLaD team have been exploring this and other questions in our research on post-cure lives. Among other things, this three-year project has explored the impact of new treatments – called direct-acting antivirals, or DAAs – on people’s lives, including after cure. Drawing on interviews with 30 people from Victoria, New South Wales and Queensland who had all undergone treatment since DAAs were listed in 2016, our latest article, ‘“I’m not hep C free”: the afterlives of hepatitis C in the era of cure’, published in the journal of Medical Humanities, shares new findings from that project.  

Everyone’s experience of hepatitis C and treatment is different. Our participants included a diverse range of people of different ages, genders, sexualities, ethnicities and locations. Among them were also a broad range of experiences of the virus, including people that picked it up in different ways, people treated for it multiple times, people who had lived with it for varying lengths of time, and people treated in different settings (e.g., hospitals, community health, prisons). Nonetheless, there were common themes among their experiences, including that many of them continued to encounter hepatitis C-related stigma and discrimination after treatment.

Other social research from the era of new treatments had already shown that, as well as seeking to clear the virus, many people approach treatment with its social promises in mind, including the possibility that it might reduce or even eradicate of stigma and discrimination from their lives. Such hopes reflect broader social ideas about biomedical cures, which is that they put an end to illness and its effects. This is the idea that, upon cure, illness is over, and what takes its place is a person restored to their (former) healthy, no-longer-ill self, looking toward a future free of illness. But what if a virus has afterlives? What does cure mean for people when treatment does not bring about an end to the (social and other) effects of a disease?

For example, a number of our participants said that their history of hepatitis C remained on their medical records and that this continued to be a problem for them when they attended healthcare settings. Their history of hepatitis C was, they felt, interpreted by healthcare workers as evidence that they were someone who injected drugs, and this led to various types of discriminatory treatment, including long and difficult battles to achieve a diagnosis, being accused of ‘drug seeking’ by their treating physicians, having treatments withheld, having symptoms – including severe pain – not believed or taken seriously. It sometimes included unnecessary and stigmatising infection control measures, as one participant explained: ‘I’ve had people double glove themselves’. Even in contexts where healthcare staff were informed that she had cleared hepatitis C, such treatment continued:

Even now, it’s still an issue. Even though I say, “No. I’m hep C free”, still nothing changes.

There were other ways that hepatitis C stuck around in people’s lives after treatment, as we have also reported on in other outputs from the project. Some people described family and friends who continued to treat them like a ‘risky’ or ‘infectious’ person. For others, there were personal negative feelings about living with the virus – embarrassment, shame, trauma associated with earlier parts of their life – that remained after treatment.  

So, while new treatments promise to eliminate hepatitis C, people’s lived experiences suggest that hepatitis C can linger in various ways, and this has ongoing implications. Many of our participants, for example, said they remained cautious about disclosing their history of hepatitis C. Some said they never disclosed it in healthcare settings, for fear of a stigmatising response, delays or disruptions to care, or withheld treatment. In such accounts, we can see that the entanglement of hepatitis C-related and injecting drug-related stigma may remain ongoing, even after the virus is cleared though treatment.

Importantly, among those we interviewed there were those who said they didn’t necessarily want to leave all aspects of their experience of hepatitis C behind them. As they explained, living with the virus – in some cases for many years – was part of who they were, and had shaped them in significant ways that they saw as valuable and didn’t necessarily want to forget.  

Our paper argues that the dominant biomedical understanding of cure as an ending can foreclose insight into these ways hepatitis C can linger after treatment, and that we need to think differently about what ‘cure’ means, beyond considering it as a definite end. We look at some of the strategies people use to manage these ‘afterlives’ of hepatitis C and argue that supporting people to grapple with any ongoing effects of a curable disease is important, particularly in a time of elimination, where treatment is becoming more widely available and the international cohort of people living post-cure lives will only continue to grow.

You can read the article here.  

Citation: Kagan, D., Seear, K., Lenton, E., Farrugia, A., valentine, k., Mulcahy, S. ‘I’m not hep C free’: Afterlives of hepatitis C in the era of cure, Medical Humanities. http://dx.doi.org/10.1136/medhum-2023-012653