Hepatitis C Treatments: A Personal Perspective

1. 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?