Lived experiences of treatment for hepatitis C in Australia: An online resource for people considering treatment, members of the public, healthcare workers and other professionals -project completed

Treatment of hepatitis C has been revolutionised in recent years with the introduction of interferon-free direct-acting antiretroviral medications that have far fewer side effects and much higher success rates than past treatments. With the advent of these new treatments, the Australian Government has adopted the World Health Organization’s ambitious goal of eliminating hepatitis C by 2030. Efforts to eliminate hepatitis C depend on consistently high rates of treatment uptake. Reaching all those affected by hepatitis C, informing them about new treatment options, and making sure care and aftercare are adequate, are ongoing challenges. While hepatitis C elimination is an important public health goal, not enough is known about experiences of hepatitis C, its treatment and health experiences post-treatment, in this new age in which hepatitis C elimination seems possible.

Funded by the Australian Research Council (2020-2021) this qualitative project conducted in-depth interviews with individuals affected by hepatitis C to better understand the issues surrounding treatment uptake in an era dedicated to elimination. It then presented these (anonymised) stories in textual, audio and re-enacted video form on a publicly accessible website. Entitled Vitalvoicesonhepc.org, this website was launched in 2022, and was introduced by Bernie Hobbs, prominent Australia science writer and broadcaster.

Vitalvoicesonhepc.org 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, 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. Planned and designed with the help of a national advisory panel, Vitalvoicesonhepc.org showcases the lives of people affected by hepatitis C, emphasising their significance, complexity and vitality.

The project team comprised:

Chief investigators

Partner investigators

  • Dr Michael Edwards, National Drug and Alcohol Research Centre, University of New South Wales
  • Elizabeth Birbilis, Department of Health and Human Services

Project staff

  • Dr Adrian Farrugia, Australian Research Centre in Sex, Health and Society, La Trobe University
  • Dr Renae Fomiatti, Australian Research Centre in Sex, Health and Society, La Trobe University

Publications to date

Further publications are currently in development or undergoing peer review.

Fraser, S., Moore, D., Farrugia, A., Fomiatti, R., Edwards, M., Birbilis, E. & Treloar, C. (2022). Exhausted practical sovereignty and lateral agency: Non-uptake of treatment for hepatitis C in the antiviral era. International Journal of Drug Policy, 107, 103771.

Farrugia, A., Fomiatti, R., Fraser, S., Moore, D. Edwards, M., Birbilis, E. & Treloar, C. (2022). Hepatitis C as a ‘gathering’: Attending to the social and material relations of hepatitis C treatment. Sociology of Health and Illness, 44(4-5), 830–847.

Presentations

Fomiatti, R. (2021). Post-crisis entanglements in the time of direct-acting antiviral treatment for hepatitis C. Paper presented at TASA ‘Hope and Empathy Conference’, online, October. 

Farrugia, A. (2021). Hepatitis C cure as gathering: Attending to the social and material relations of hepatitis C cure. Paper presented at the TASA ‘Hope and Empathy Conference’, online, October. 

Farrugia, A. (2021). Waiting to live free of hepatitis C: Personal experiences of cure in the elimination era, Paper presented for World Hepatitis Day, online, October.

Farrugia, A. (2021). The centre or the periphery? Social relationships and hepatitis C treatment in the elimination era. Paper presented online at the 12th Viral Hepatitis Conference, online, 30 May – 1 June.

The project also benefitted from the expertise of an advisory panel:

  • Dr Susan Carruthers, Peer Based Harm Reduction WA
  • Dr Nico Clark, North Richmond Community Health Medically Supervised Injecting Room
  • Mr Sione Crawford, Harm Reduction Victoria
  • Mr Steven Drew, Hepatitis NSW
  • Ms Kay Dufty, LiverWELL/Hepatitis Victoria
  • Ms Melanie Eagle, LiverWELL/Hepatitis Victoria
  • Ms Carrie Fowlie, Hepatitis Australia
  • Dr Marianne Martinello, Prince of Wales Hospital and St Vincent’s Correctional Health and Kirby Institute
  • Mr Piergiorgio Moro, Centre for Culture, Ethnicity & Health
  • Mr Sonam Paljor, Multicultural HIV and Hepatitis Service
  • Ms Bianca Prain, Centre for Population Health, NSW Government
  • Ms Kerry Walker, Hepatitis NSW, New South Wales, Australia