A note of caution amidst a ‘revolution’ in hepatitis C treatment
As new treatments for hepatitis C reshape the landscape, new data from UNSW underscore the need to address issues including discrimination, stigma and engaging marginalised communities.
Tens of thousands of Australians have been cured of Hepatitis C since new treatments were made universally available last year, and a report released last month said Australia is on track to eliminate hepatitis C by 2026.
But while new treatments continue to dramatically reshape the landscape, data from the Centre for Social Research in Health’s (CSRH) Annual Report of Trends in Behaviour 2017: Viral Hepatitis in Australia underscores the need for caution.
Addressing stigma in healthcare settings, engaging marginalised communities in prevention, and continuing to trial innovative models of care will all be imperative if the ‘new era’ of treatment is to fulfil its promise, the report says.
It also notes the challenges of dealing with hepatitis B: about one third of people living with the disease are yet to be diagnosed and only 6% have been treated.
The report was presented on 10 August at the Australasian Viral Hepatitis Elimination Conference (AVHEC) in Cairns.
The Annual Report of Trends in Behaviour presents data from a selection of the behavioural and social research conducted by the CSRH. It is designed to inform prevention, diagnosis and treatment by critiquing and questioning the assumptions that sometimes underlie research, policy and practice around viral hepatitis.
Key issues in the 2017 report on viral hepatitis include:
- The need to continually innovate harm reduction programs in ways that reflect how transmission happens in the everyday
- Exploring best models of care for affected communities
- The impact of stigma on the capacity of affected communities to navigate treatment systems
- Understanding and preventing hepatitis C transmission within heterosexual couples
- Examining strategies beyond equipment distribution
- Gaps in the way that hepatitis C prevention sector understands and addresses risk
Lead author Dr Joanne Bryant, Senior Research Fellow at the CSRH, said the report particularly highlighted the challenges of testing, diagnosis and care of Aboriginal people with hepatitis C.
“While we found that Aboriginal Australians living with hepatitis C were generally satisfied with their care, they were often subject to stigma and discrimination, which can create a barrier in accessing healthcare,” Dr Bryant said. “Policies and programs need to be culturally tailored to address the unique needs and experiences of Aboriginal people living with hepatitis C and their communities.”
The report found that most hepatitis C infections occur early in people’s drug using pathways but many young people had limited knowledge about the availability of sterile injecting equipment.
In a survey of 210 socially marginalised young people at risk of transitioning to injecting drug use, a third (34.3%) of participants thought they knew where to obtain sterile needles, fewer (24.3%) could correctly identify a service, and the sources most commonly identified – hospitals (27.8%) and pharmacies (25.0%) – were not specifically needle distribution services.
“These findings suggest that needle distribution policies should focus less on getting ‘at-risk’ young people to visit primary needle and syringe programs and more on improving services that they already know about, such as hospitals and pharmacies, or finding ways of bringing sterile needles to them, such as through peer distribution,” Dr Bryant said.
The report also notes that despite the majority of needle or syringe sharing occurring between sexual partners, the framing and delivery of harm reduction in Australia has little capacity to recognise intimate partnerships, including addressing the hepatitis C risks specific to them.
“Not only might more effective harm reduction strategies be achieved by moving to a practice framework that addresses the social context of injecting, including the experience of couples, the broader drug treatment and hepatitis C care sectors might also benefit from recognising the importance that partnership plays in the lives of couples who inject drugs,” Dr Bryant said.
The report also examines risks factors, attitudes and knowledge of hepatitis B, and highlights that about one third of people living with the diseases are yet to be diagnosed and only 6% have been treated.
Stigma remains a factor influencing decisions about care and treatment of people living with hepatitis. But for those diagnosed with liver cancer, the report says lack of English-language proficiency can be a barrier to accessing health services and understanding the implications of a cancer diagnosis.
“Our recommendations include a directory of Chinese-speaking medical practices and Chinese language interpretation services, the development of Cantonese and Mandarin language health promotional materials, and identifying opportunities to support family doctors and liver specialists,” Dr Bryant said.
Professor Carla Treloar, Director of the CSRH, said ‘Viral transmission happens in complex ways that are impacted by social context and the relationships of people at risk of acquiring viral hepatitis. Within the exciting context of new generation hepatitis C treatments, there remains the need to continually innovate harm reduction programs in ways that reflect how transmission happens in the everyday.’
The report is available here.