Since it was first named in the late 1970s, hepatitis C has been associated with social groups who experience inadequate access to health care. In Australia, this has included First Nations people, imprisoned people, people who inject drugs, and migrants or visitors from parts of the world with high prevalence of hepatitis C and/or without the needle-syringe programs and other forms of harm reduction that prevent blood-borne virus transmission and reduce injecting-related harms.
In the most recent article from GLaD’s three-year national study of hepatitis C cure and post-cure lives, we examine the intersections of hepatitis C with vulnerable populations and healthcare inequalities. When direct-acting antivirals (DAAs) for the treatment of hepatitis C became available, Australia became one of a handful of nations to invest heavily in them; and in 2016, these very effective new treatments were made available via the national prescription medication program, the Pharmaceutical Benefits Scheme, enabling affordable access to them for virtually all people with hepatitis C. The subsidy was intended to make cure universally affordable, and because the drugs were rescheduled from S100 to S85 medications, more widely and easily accessible through GPs, nurse practitioners and community-based clinics, for example.
This healthcare scheme has been celebrated as a policy with the potential to transform the relationship to healthcare for people living with hepatitis C, but has it been successful in that regard? Do people with (a history of) hepatitis C feel entitled to health care in Australia? And does the optimism surrounding Australia’s unique engagement with DAA treatments – and its ambitious goal to eliminate hepatitis C by 2030 – translate to real changes for the health and well-being of people affected by the virus?
These were among the questions our research on the impact of new treatments has explored. Our latest article, led by DruGS research lead Adrian Farrugia, is called ‘We’ve got a present for you’: Hepatitis C elimination, compromised healthcare subjects and treatment as a gift’, and shares findings from the project on the relationship between cure and affected people’s entitlement to health care. Published in the journal of Social Science and Medicine, it draws on 30 interviews we conducted with people from Victoria, New South Wales and Queensland who have been cured with DAAs since they were listed in 2016.
Everyone’s experience of hepatitis C and treatment is different. Our participants included people of different ages, genders, sexualities, ethnicities and locations. Among them were a broad range of experiences of hepatitis C, including people that picked up the virus in different ways, people treated for it multiple times; and different experiences of treatment, too, including in different settings (e.g., hospitals, community health centres, prisons) and at different stages of having the virus. What tended to unite them was that, in most cases, people we interviewed had encountered stigma and discrimination when accessing – or trying to access – health care. And most of them attributed this to the stigma that surrounds hepatitis C, particularly via its relationship with injecting drugs, which attract heavy social disapproval and is criminalised throughout Australia.
For this and other reasons, people affected by hepatitis C already tend to have a compromised relationship with health care – one marked by difficulty, inaccessibility and often discriminatory experiences. And, in our research, we found that people tended to remain stuck in these inequitable relationships with health care, despite Australia’s efforts to make hepatitis C treatment universally available. Indeed, our interviews showed that even though treatment is fully subsidised, concerns about cost – especially cost to the nation – shaped people’s experiences of treatment, and treatment was frequently viewed as a beneficent ‘gift’ from the state. In our article, we break this down into three elements:
- first, people understand treatment access as a form of ‘good luck’;
- second, people are acutely aware of the high cost of (unsubsidised) treatment; and
- third, those who do not ‘succeed’ in their treatment or who re-acquire hepatitis C after cure are sometimes seen as wasting (government and taxpayer) resources, particularly if they remain at risk of picking up the virus again.
Overall, the cost of DAAs loomed large for people treated. In part, this could be attributed to discussions of cost-effectiveness and other cost-related issues in media coverage of the new treatments and their inclusion on the PBS. It may also be informed by comments about cost that are made by treatment and other healthcare providers.
And, importantly, it may relate to the existing dynamics of the relationship people with (a history of) hepatitis C have with health care. That is, it suggests that, despite the accessibility of cure, there are many among this group that do not view themselves as citizens intrinsically entitled to treatment or worthy of public investment in their health. Rather, they view their hepatitis C treatment as an additional burden on the Australian healthcare system and the government and taxpayers that fund it. Their inclusion in public health care through the provision of subsidised DAA treatment is viewed by them as exceptional, rather than routine – as a special ‘gift’ rather than a fundamental entitlement.
And so, while there has been tremendous optimism around the capacity of new treatments to transform affected people’s lives – including many people whose lives have involved a compromised relationship to health care – we argue that treatment alone cannot mend this compromised relationship. Other, more ambitious interventions aimed at alleviating poverty, drug-related stigma, drug-related harms, criminalisation and more are also needed.
You can read the article in full here.
Citation: Farrugia, A., Lenton, E., Seear, K., Fraser, S., Kagan, D., valentine, K. & Mulcahy, S. (2024) ‘We’ve got a present for you’: Hepatitis C elimination, compromised healthcare subjects and treatment as a gift. Social Science and Medicine 340. DOI 10.1016/j.socscimed.2023.116416