Each year on the 28th of July, people around the world come together to mark World Hepatitis Day. One of the World Health Organization’s nine officially mandated public health days, its aim is to raise awareness of the global burden of viral hepatitis and to galvanise the attention and resources to take action.
This year’s theme is ‘Hepatitis Can’t Wait’, foregrounding the urgency of international efforts to eliminate hepatitis B and C. For almost three years now, COVID-19 has been at the centre of our attention, and as we pointed out this time last year, this has impacted other urgent public health programs, including addressing viral hepatitis. In Australia, for example, COVID-19 has interrupted hepatitis screening and monitoring, particularly in the harder-hit states of New South Wales and Victoria. But hepatitis C transmissions continue – particularly in prisons where people don’t have access to harm reduction strategies such as needle and syringe programs. An estimated one in five people living with chronic hepatitis C in Australia remain undiagnosed. Given COVID-19 is ongoing, the campaign for this year’s World Hepatitis Day places emphasis on turning our attention (back) to action on viral hepatitis through unified and concerted efforts. As the Hepatitis Australia webpage says:
The theme passionately demands urgent action from all stakeholders and the population. It aims to unite the global and national community to demand decision makers prioritise the elimination of viral hepatitis.
To mark World Hepatitis Day this year, researchers in the GLaD and DruGS programs at ARCSHS got together with Chief Executive Officer of Hepatitis Australia Carrie Fowlie to share and discuss findings from three recent social research projects on hepatitis C. The discussion, which you can stream here, was hosted by GLaD Research Lead Kate Seear, and chaired by GLaD researcher Dion Kagan.
As part of the conversation Adrian Farrugia shared findings from a recent project on people’s lived experiences of treatment for hepatitis C in Australia. The project has highlighted how even with much more manageable treatments, people affected by hepatitis C often face difficulties juggling priorities and processes in a context of limited resources and support.
Adrian also identified some of the ongoing barriers to treatment that people with hepatitis C continue to encounter, including obstacles in the healthcare and criminal justice systems, insecure housing, stigma and discrimination and mental illness. As he explains:
Even in a context shaped by these highly effective treatments, and this work towards universal availability, these barriers continue to impact the lives and treatment experiences of people affected by hepatitis C.
The project led to the establishment of Australia’s first dedicated website presenting carefully researched personal narratives of hepatitis C, treatment and life after cure. VitalvoicesonhepC.org includes the stories of 50 people, and information on a range of specific topics such as treatment or treatment decisions.
Also featured in the podcast were findings from another recent project on how telehealth has been used in hepatitis C care, particularly during COVID-19. Renae Fomiatti shared highlights from the project, which explored both the benefits and drawbacks of hepatitis C telehealth, and some of the recommendations the project made on how best to offer it in the future.
Given we now have access to much more tolerable and effective treatments, there has been a lot of attention paid to diagnosing and treating people for hepatitis C. However, an understanding of the lives and needs of people after cure is only beginning to emerge. GLaD researchers Emily Lenton and Sean Mulcahy shared findings on the podcast from a project exploring the post-cure experiences of people treated for hepatitis C. While experiences are extremely diverse and many of them are positive, many people also report ongoing issues following treatment, including stigma and discrimination related to hepatitis C. For example, as Emily explained, hepatitis C can remain on digital medical records, even after cure, and this can affect the quality of care people receive.
The post-cure project also investigated how the law can shape post-cure experiences. As Sean reported, the law continues to impact people with a history of hepatitis C in various ways, including in their ability to access insurance and the Disability Support Pension. Stigma and discrimination also emerged as an ongoing issue. Sean explains:
What we’ve found is that medical cure doesn’t necessarily cure the discrimination and stigma that’s attached to hepatitis C. Yet, perversely, it may be more difficult for people who have been cured of hepatitis C to access the protections of discrimination law due to different definitions of ‘disability’ under federal, state and territory law.
As the post-cure lives project team recently argued, Australia’s forthcoming national hepatitis C strategy must meaningfully address post-cure lives, and this includes a range of issues, including privacy, named notifications and medical records.
The findings from these projects offer some critical insights for the national strategies, which will become available for consultation soon. As Carrie Fowlie reflected, the current national strategies do acknowledge legal issues but their focus on them – and on opportunities for reform – needs some strengthening. Likewise human rights, which are a ‘core principle’ of the national hepatitis strategy, but need to be tied to more ‘tangible actions’, including ‘a really clear statement in the national strategies about implementing harm reduction and needle and syringe programs in prisons, and that [the current lack of these programs] is a direct violation of human rights as they stand for people in prison at the moment.’
Carrie rounded out the conversation with a broader set of reflections on how this research ties into current conversations in the community-based response to hepatitis C, and the emphasis in those conversations on whole-of-person responses. A key message coming from communities, as she explained,
is advocacy about really thinking about the whole person and their whole life course, and the context in which they’re in. And I think a lot of the research that you’ve been doing about seeking to elevate the voices of different communities, where they’re at, their experiences, but the different contexts they’re in, is really critical to that.
Carrie also reflected on the importance of engaging with post-cure life. Although we need to continue encouraging as many people as possible to access curative treatment, she said, and remain ‘forward looking’ with technologies like telehealth, for example, that reduce barriers in this process, it’s ‘critical’ that we don’t forget about people once they’ve been treated:
Because people have experienced hepatitis C treatment doesn’t mean that we forget about them, you know, they still matter, and they still count, and we still stand with them.
The GLaD team is grateful to everyone who contributed to this conversation to mark World Hepatitis Day in 2022. Listen here and please share widely.