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Online Options: New national community and clinical trial resources
Vitalvoicesonhepc.org is Australia’s first dedicated website presenting carefully researched personal stories of hepatitis C, treatment and life after cure. The website 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.
Vital Voices sheds light on the stories of people affected by hepatitis C, using original audio, re-enacted video and text clips to present people’s experiences in their own words.
What is hepatitis C? How does it feel to be diagnosed with it? What is it like to have treatment and be cured? In addressing these questions, Vital Voices aims to inform public discussions of hepatitis C, to counter stigmatising misconceptions, and to promote understanding of living with the virus and its treatment. If you are living with or supporting someone living with hepatitis C, there will be stories here which reflect your experience, and which Vital Voices hope can help guide you through the many difficulties and puzzles of the experience.
Drawing on in-depth qualitative interviews, the website presents detailed accounts of hepatitis C, treatment and cure. Also presented are key themes found in the interviews:
Planned and designed with the help of a national advisory panel, Vital Voices aims to showcase the lives of people affected by hepatitis C, emphasising their significance, complexity and vitality.
From Carol’s Story, on Vital Voices: I think the biggest [reason I had treatment would have been when my eldest son and his wife got pregnant with their child. I didn’t want to take any chances, so I spoke to the 1800 number for the Hepatitis line. My niece had hep C too, and just talking to my sister about the antibodies and stuff like that, I worked it all out. I made copies of my blood tests and my liver scans, so that I can compare them or have a look at the different results.
ClinTrial Refer is a new website that has partnered with the Gastroenterological Society of Australia (GESA) to make clinical trials easier to access for people with hepatitis B and hepatitis C.
ClinTrial Refer is an online search tool that displays all GESA clinical trials, as well as other available trials.
ClinTrial Refer provides extensive information about each study, including key eligibility criteria and trial site contact information. You have the option of using the ClinTrial Refer mobile app or the ClinTrial Refer website to search.
Finding a suitable clinical trial can be difficult. ClinTrial Refer has created a free and easy-to-use search tool that can help match patients to studies using filters such as location, medical condition, sponsor, and trial status.
You can download the ClinTrial Refer app by searching for it in your app store, or by visiting web.clintrialreferapp.com/searchTrial/list.
Hepatitis B Voices Australia is a new organisation which looks to empower and support people living with hepatitis B at hepbvoices.au.
Doherty Institute researchers and co-founders have launched the first hepatitis B community organisation wholly led by people with lived experience of hepatitis B in Australia, Hepatitis B Voices Australia. Hepatitis B often trails behind hepatitis C in terms of recognition and support, and remains without an effective treatment.
Hep B Voices Australia was co-founded by Nafisa Yussf, Associate Prof Thomas Tu, Lien Tran, Uyen Vo and Dr Aye Aye Khaing.
The non-profit organisation aims to support, represent and advocate for the health and well-being of people affected by chronic hepatitis B in Australia.
“Lived experience is critical to adequately respond to hepatitis B. The voices of people living with hepatitis B should be integral to all aspects of the hepatitis B response,” Nafisa Yussf said.
“This means people should be part of the design, development, implementation and decision-making of how we respond to hepatitis B.”
The website is in its early stages, but more content is appearing soon.
