#HepCantWait, but the legacy effect of stigma and discrimination ‘doesn’t just go away’

Since late 2019, COVID-19 has been the global health crisis absorbing much of our attention. Efforts to respond to it, including the redeployment of people and resources, have necessarily had impacts on other public health programs and pandemics. The World Health Organization’s ambitious goal to eliminate hepatitis C by 2030 is one program that has been slowed and, in some places, stopped in its tracks by COVID-19. This will have a significant impact: a recent study estimated that even just a single-year delay in the diagnosis and treatment of people with hepatitis C could lead to approximately 44,800 additional liver cancers and 72,300 additional deaths worldwide by 2030.

With the need to shift attention to hepatitis elimination efforts, the theme of this year’s World Hepatitis Day was ‘Hep Can’t Wait’. World Hepatitis Day is an annual campaign to raise awareness of the global burden of viral hepatitis and instigate the social and political will to facilitate prevention, diagnosis and treatment. Taking place on 28 July every year, it’s one of the World Health Organization’s seven global public health days. Given the impacts of COVID-19, this year’s emphasis on turning our attention (back) to rapid, urgent action on hepatitis C is timely. In Australia, billions of dollars and huge amounts of work have already been invested in the elimination of hepatitis C as a major public health threat. The linchpin of this investment has been a national program of near-unrestricted access to new generation direct-acting antivirals (DAAs). These treatments, which have fewer side effects than previous treatments and enable clearance of hepatitis C in over 95 percent of cases, are available to anyone in the community with access to Medicare, including incarcerated people through prison treatment programs.

A number of organisations have set to work on novel approaches to simplify and distribute treatment in the community, find ‘the missing millions’  who remain undiagnosed and develop technological efficiencies, such as ‘one-stop shops’ for testing and treatment, that speed up the process of hepatitis C cure among priority populations, including people who inject drugs. Eliminating hepatitis C is a matter of haste, and the emphasis of this years’ World Hepatitis Day campaign is a regained focus and momentum for that agenda.

However, there are forces at work that may complicate this agenda. Hepatitis C is a heavily stigmatised illness that is closely associated with the criminalised – and also heavily stigmatised practice – of injecting drug use, at least in the Global North. A complex landscape of laws that govern hepatitis C and injecting drug use may continue to reproduce that stigma. Infrastructures, systems and policies devised in a pre-DAAs era may also have ongoing stigmatising and discriminatory effects and raise challenging questions. As GLaD program Research Lead Associate Professor Kate Seear recently asked in a plenary presentation at the 12th Australasian Viral Hepatitis Conference:

“[Should] people [be able to] apply to have their medical records updated to remove reference to their past hepatitis C status? What might the implications be for people having their past status retained in medical records? Should a person have to disclose they once had hepatitis C when applying to obtain insurance? Might a claim to insurance be refused on the basis that they once had hepatitis C?”.

Alongside the exigencies of testing and treatment, these critical questions need answers. Researchers in the GLaD program have been working on these ‘slower moving’ systems as part of a major project on post-cure lives. The project aims to better understand the forces that continue to shape hepatitis C–related stigma and discrimination and to recommend specific reforms.

A key early stage of the project has involved collecting the laws, including statutes and other legal frameworks, that may continue to impact people living with hepatitis C pre- and post-treatment. This ‘speculative legal mapping’ found legal mentions of hepatitis C across laws governing infectious disease notifications, combat sports, discrimination, workers’ compensation, mandatory testing and blood donation. In social security law, the cure for hepatitis C raises questions about whether hepatitis C can be classified as an ‘impairment’ for the purposes of accessing the disability support pension. Hepatitis C also figures in criminal law, where it can be an aggravating factor in sentencing. Our preliminary findings on the changing status of hepatitis C before the law shows that, overall, hepatitis C is being recast as a temporary and largely non-debilitating condition. And yet, the stigma associated with it may be more enduring.

Another part of this project, completed recently, involved talking to people who work with hepatitis C–affected communities, including peers, policymakers, nurses, lawyers and many others about the life trajectories of people after treatment for hepatitis C. While many of these stakeholders remain optimistic about the promise of DAAs, a large number said that hepatitis C–related stigma can persist for people after cure. Several felt that if a person’s previous hepatitis C status remained on their medical records, this could hamper access to health care because of assumptions about their past, present or future drug use. For individuals, a fear of the need to disclose their former hepatitis C status or the legacy of past negative experiences could prevent them from accessing health care and other services. ‘It doesn’t just go away for people when they’ve had those kinds of experiences’, one participant commented, ‘you know – treated as an infectious person.’

A further stage of the project, currently underway, involves talking to people treated for hepatitis C who have themselves experienced life after cure. We are now recruiting participants in Victoria, New South Wales and Queensland. Please click here for more details about getting involved.

If Australia is to reduce this stigma alongside its ambitious target of eliminating hepatitis C, we need to examine – and potentially reform – a broad range of these structures. Hep indeed cannot wait, but neither can reforms to legal, social, policy and cultural dimensions of hepatitis C, especially if they reinforce the types of stigma and discrimination that exclude people from access to equitable health care. Keep an eye on the GLaD website and Twitter account for more project updates.