What is hepatitis C? How does it feel to be diagnosed with it? What is it like to have treatment and be cured? A ground-breaking new website sheds light on the stories of people affected hepatitis C and explores their experiences of treatment and cure.
Launched at the 2022 Viral Hepatitis conference in Brisbane on Tuesday 31 May, VitalvoicesonhepC.org is Australia’s first dedicated website presenting carefully researched personal stories of hepatitis C, treatment and life after cure. Developed from an ARC-funded project, the site has two aims. First, it aims to support people living with hepatitis C in thinking about and/or having treatment. Second, it aims to inform the public about hepatitis C and what can be done about it. Overall, it seeks to push discussion of blood-borne viruses beyond a primary focus on the statistics and emphasise that health issues such as hepatitis C are experienced as part of complex lives, stories and experiences.
VitalvoicesonhepC.org website patron science writer and broadcaster Bernie Hobbs introduced the website at the launch, saying:
This website communicates the vital importance of the transformational new treatments for Australia, while also helping us understand more about the crucial connections between scientific discoveries and the social circumstances that support or impede their benefits.
Drawing on in-depth qualitative interviews, the website presents detailed accounts of living with hepatitis C, having treatment and being cured. Also presented are key themes found in the interviews:
- Being diagnosed with hepatitis C;
- Dealing with stigma and discrimination;
- Perspectives on the new hepatitis C treatment;
And much more. These themes are presented using video re-enactments, original audio recordings and written extracts from the interviews. Planned and designed with the help of a national advisory panel, VitalvoicesonhepC.org aims to inform public discussions of hepatitis C, to counter stigmatising misconceptions, and to promote understanding of living with the virus and its treatment.
As Project Lead Suzanne Fraser explained at the launch, VitalvoicesonhepC.org is one in a series of highly praised, informative and destigmatising websites produced by this team (see Livesofsubstance.org and Overdoselifesavers.org). Overall, the website aims to support treatment uptake, improve treatment experiences and in turn save lives.
As Lead investigator Suzanne Fraser explained, one of the key aims of VitalvoicesonhepC.org, and the team’s research on hepatitis C more generally, was to highlight the social dynamics shaping experiences of the virus and treatment uptake:
Many people are keen to get treatment for their hepatitis C, but issues such as previous experiences of stigma within the healthcare system, insecure housing and struggles with mental health are preventing them from doing so. This new online resource uses people’s own words to counter misconceptions about hepatitis C, and inform people affected by it that a high-quality treatment option is available.