A new UNSW Sydney report released today says health care systems must remain relevant to and respectful of people living with hepatitis C if Australia is to meet elimination targets.

The UNSW Centre for Social Research in Health’s (CSRH) Annual Report of Trends in Behaviour 2018: Viral Hepatitis in Australia found that despite tens of thousands of people benefitting from highly effective treatments in recent years, prevention and treatment models must do more to meet the needs and experiences of people living with hepatitis C.

The report, which was released at the 11th Australasian Viral Hepatitis Conference in Adelaide, found stigma in health care remains a major barrier to treatment.

Professor Carla Treloar, Director of CSRH, said: “Attention to patient-centred models of health care remains critically important to ensure that treatment is relevant to people who are living with hepatitis C.”

The report found that stigma directly impacts the capacity of affected people to have access to treatment systems. In an online survey of 123 people who had lived with hepatitis C, more than half of the recipients (56%) reported experiencing stigma related to their hepatitis C in the last 12 months.

That statistic is mirrored in representative samples from the general population that found half of the respondents said they would, to some extent, behave negatively toward a person living with hepatitis C. 

“Specific perspectives and experiences of marginalised communities are critical to ensuring that treatment models are relevant, and that high treatment uptake is maintained,” said Professor Treloar.

“One of the most important factors relating to treatment uptake is the stigma and discrimination experienced by people with hepatitis C, both in relation to the general public and health care settings.”

Lead author Dr Joanne Bryant, Senior Research Fellow at CSRH, said the report also highlights the importance of prevention of the infection, and this remains critically important to eliminating hepatitis C in Australia.

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.

Other key issues from the 2018 report include:

  • Ensuring models of care best meet the needs of affected communities
  • Innovative harm reduction programs that reflect how transmission happens in the everyday
  • Understanding and preventing hepatitis C transmission within heterosexual couples
  • The intersection of public health and criminal law, considering ways in which the laws in the drugs field have public health effects.

Dr Bryant also said the report particularly highlights the importance of building culturally relevant models of care.

The Deadly Liver (DLM) program is targeted at Indigenous people who inject drugs and is a composite program encompassing health promotion, peer referral, and incentives to improve engagement with testing and treatment services.

“The project shows that engaging people in health education activities can result in much higher levels of treatment and testing,” said Dr Bryant.

“The DLM reported that 79% of those participating in education activities went on to attend screening, 50% returned to receive test results and 20% received additional treatment.”

What’s more, CSRH found that while stigma remains a critical factor influencing decisions about seeking treatment for people living with hepatitis C, for those living with hepatitis B who are of Chinese descent, the English language often creates barriers.

CSRH is now developing a stigma indicator for the hepatitis B virus, conducting a qualitative study exploring how Chinese-Australians living in Sydney understand the infection and stigma.

Read the full Annual Report of Trends in Behaviour 2018: Viral Hepatitis in Australia.