The perspective of a person with hepatitis C on new treatments and treatment as prevention Jack Wallace, Research Fellow. Australian Research Centre in Sex, Health and Society

2 Introduction/Disclaimers My history Why I’ve been asked.

3 One individuals perspective on new treatments. La Trobe University There is a strong level of interest among my cohort of people with hepatitis C about the changes to hepatitis C treatments The horror stories of interferon Peg-interferon The possibilities of combination therapy Dumping of liver biopsy Fibroscan IL28 New interferon free treatments

4 An individuals perspective on new treatments. The questions: Reimbursement? Access? Are they as good as the sales pitch?

5 Treatment as prevention – Context National Hepatitis C Strategies - Prevention gaps 24 hour access Criminalisation of drug use Self administration Provision of information and education about safe injecting Providing equipment other than needles and syringes Peer distribution Reduced stigma Raised general community awareness about hepatitis C

6 Treatment as prevention – Context Hepatitis C treatment access and uptake for people who inject drugs: a review mapping the role of social factors. Magdalena Harris and Tim Rhodes Issues taking precedence over hepatitis C treatment or prevention Poverty Homelessness Funding and maintaining an illicit drug dependency Fear of arrest and incarceration Needle and syringe access OST provision and restrictions Managing childcare and possible child removal Stigma and social isolation Distrust of police and health care services Self management of acute and ongoing health concerns (such as soft tissue infections, drug withdrawal, overdose and depression) Interpersonal violence

7 Treatment as prevention: Some implications (Good testing rates) Failure of treatment services Nothing stopping people who inject being treated already except access to health services, stigma and discrimination Treatment no longer clinically indicated Barriers to access for people generally Ethics Motivation for participating Is the primary benefit to the individual or public? Hepatitis C as a benign infection What consent/coercion? What happens to people who are offered to participate, and who don’t Self-perception - more stigmatisation; guilt; shame

8 Treatment as prevention: The questions Does hepatitis C treatment as prevention change the relationship of hepatitis C with people who inject drugs Why fear if you can be treated easily? How often is a person allowed to be treated? Will people who inject take more risks in injecting because hepatitis C becomes a treatable illness? Does hepatitis C treatment become like antibiotics? How does affect treatment access to other people with hepatitis C who do not fall into the group being treated - a lot of whom want to be treated What impact does this have for the rest of their lives Confidentiality now and in the future

9 Treatment as Prevention: The costs People become patients Loss of autonomy Treatment as prevention = hepatitis B vaccination Chronic infection Prevention as a clinical issue The lack of advocacy for other issue Better access to clean injecting equipment Broadening access to treatment services – the move of treatment into general practice or community based health services Is this the best way of reducing the public health burden of viral hepatitis in Australia?

Thank you