The trouble with normalisation – new research on the mainstreaming of hepatitis C care and its impact on stigma

New generation direct-acting antivirals (DAAs), which can cure hepatitis C in up to 95% of cases, have brought significant changes to hepatitis C healthcare in Australia. Among these changes, there has been a shift from tertiary to community-based models of testing and treatment. Whereas hepatitis C care was previously the boutique province of hospital-based gastroenterologists, hepatologists and infectious disease specialists, the new and less complex treatments are now administered across a range of primary healthcare settings in the community, including GPs, community clinics, prisons, alcohol and other drug treatment services, and more. A key part of this expansion involved the re-listing of DAAs, which meant the authority to prescribe them was expanded from specialists to GPs, and then more recently to nurses.   

As Australia is committed to eliminating hepatitis C by 2030, huge efforts and resources have been poured into getting treatment out to as many people as possible. As well as expanding the authority to prescribe, efforts are underway to ‘normalise’ hepatitis C in mainstream healthcare. Historically, certain conditions – including HIV and hepatitis C – have been approached as ‘exceptional’, which means that unusual conditions are applied to their management. For example, for both HIV and hepatitis C, special rules were put in place around how testing could be conducted. This included the provision of informed consent to people being tested, pre- and post-test counselling, and careful handling of people’s personal information. In part, these exceptionalist approaches were put in place to protect people from the stigma that might arise around the testing and diagnosis of these heavily stigmatised viruses.

Now, with wider distribution of treatment and aims to eliminate hepatitis C, exceptionalist healthcare approaches to the virus are shifting through a process known as ‘normalisation’. Normalisation involves the integration of hepatitis C testing, treatment and data collection into general healthcare processes and settings. No longer approached as exceptional, the virus becomes part of normal, routine public health practice.

And, as well as changing who is able to test and treat for hepatitis C and how they go about it, some have suggested that normalisation can also change the social meaning of hepatitis C, including in ways that reduce the stigma associated with it. But can normalisation ameliorate hepatitis C-related stigma when such stigma is so inextricably linked with the stigma surrounding injecting drug use?  

Our latest article looks more closely at normalisation and its potential to reduce stigma. It draw on interviews with 30 stakeholders who work with hepatitis C affected community in policy, service delivery, research and more. In the article, we look at the history of exceptionalist approaches and consider why these were implemented. We note that in the case of HIV, as treatments improved and became more widely available, processes of normalisation accelerated, including in changes to testing policies. As healthcare shifted, so too did public conversations, and all along there has been research and debate on the ethics of public health approaches to HIV. However, when it comes to the exceptionalist approaches applied to hepatitis C, we know surprisingly little. How, then, can we evaluate current calls to normalise hepatitis C in healthcare? How does it (allegedly) function to reduce hepatitis C-related stigma?

In our interviews, stakeholders said that changes to hepatitis C care are having an impact on the social meaning of the virus, creating optimism around the availability of cure. And yet, they also said that stigma and discrimination remain stubbornly persistent despite the availability of cure. Some identified normalisation as able to ameliorate stigma and discrimination, and some advocated for further normalisation as a specific stigma-reduction strategy. One of our participants, for example, said:

We can mainstream the treatment in a sense now. That’s […] the route to stigma reduction, through normalisation… The fact that it’s moved from being a specialist prescriber to being something that’s more widely available to be prescribed is probably the biggest stigma reduction strategy that you could have hoped for in the last little while.

However, while the revolution in hepatitis C care is viewed by some as a means to bring the virus into the space of ‘normal’, ‘routine’, ‘mainstream’ healthcare practice, our interviewees also indicated that injecting drug use remains stubbornly fixed in the space of the exceptional, and addressing this requires other strategies beyond normalisation alone. As we conclude:

The attachment of stigma to hepatitis C because of its association with criminalised and stigmatised practices such as illicit drug use cannot be addressed by improvements in treatment efficacy alone.

The article is called ‘The trouble with normalisation: Transformations to hepatitis C healthcare and stigma in an era of viral elimination’ and is out now in the Sociology of Health and Illness. You can access it here.

Citation: Kagan, D., Seear, K., Lenton, E., Farrugia, A., valentine, k., Mulcahy, S. & Fraser, S. (2023). ‘The trouble with normalisation: Transformations to hepatitis C health care and stigma in an era of viral elimination’, Sociology of Health and Illness.