HEPATITIS C TREATMENT & INJECTING DRUG USE

1. HEPATITIS C TREATMENT & INJECTING DRUG USE On a tightrope without a safety net Annie Madden Executive Officer Australian Injecting & Illicit Drug Users League (AIVL)

2. SUMMARY Injecting drug users – who are we talking about? General overview of barriers to hep C treatment for people with a history of injecting drug use; Systemic barriers to hep C treatment access; Briefly - what needs to change?

3. WHO ARE WE TALKING ABOUT? People with a history of injecting drug use Current drug users Vs former drug users AIVL does not believe such distinctions are helpful Does not recognise the complexities and diversity The nuances about how people identify Injecting drug use is not an absolute or static concept – it is ‘fluid’ People move in and out of active drug use – often over many decades Aware of ‘modelling, estimates and projections’ but need to take care with the assumptions and generalisations made

4. WHO ARE WE TALKING ABOUT? Does not account for changes in drug use patterns, preferences, language, policy and laws Does not account for the fact that people can’t be ‘honest’ about their drug using status “It doesn’t matter how you got it you just need access to services and care” - elements of truth in this statement BUT... Can’t deliver an integrated, holistic model of care if don’t take account of the practices, rituals and communities that people engage in. Current injecting drug use & being on pharmacotherapies does matter BUT... Need to focus on removing barriers for ‘people with a history of injecting drug use’.

5. GENERAL OVERVIEW Not ‘why aren’t people coming forward’ BUT... ‘why would they?’ Complex and serious form of treatment delivered through a system that has frequently treated them poorly. Honest often results in punitive measures. Fearful of treatment side-effects. People are dealing with multiple health & social issues – hard to prioritise hep C. Chronic infection – no debilitating symptoms.

6. GENERAL OVERVIEW Overwhelmed by large amounts of information. Conflicting message about treatment, side-effects and likely outcomes from treatment. Perpetually delay treatment – too difficult and unsure who to trust. Fluctuation of symptoms – delayed decisions. Evidence support long periods of treatment contemplation needed; and Willingness to consider but not commence.

7. GENERAL OVERVIEW “Shelve” thinking about treatment due to experiences of health system. Inevitable conflicts and moralising about pain relief. Stress of raising issue of side-effects due to assumptions about “drug-seeking behaviour”. Approaches/responses to pain relief vary between physicians – not all deny access. Management of side-effects improving. Assumptions of “drug seeking behaviour”, denial of pain management & under-treating pain - all creating barriers to treatment access.

8. GENERAL OVERVIEW Service providers – barriers tend to be perceived in clinical terms: Lack of knowledge of treatment Availability and eligibility requirements Vulnerability to poor mental health (interferon) Impact of alcohol use on treatment outcomes Adherence to treatment regimen Potential for re-infection following treatment. Individual – waiting times, cost, work, family inappropriateness of service models, etc. But one re-occurring theme...

9. SYSTEMIC BARRIERS Context in which people live and the factors that shape their health and wellbeing. “Social determinants of health” Don’t go far enough - why do people with a history of IDU experience such extreme disparities in health equity and vulnerability to poor health? Engaging in injecting drug use and individual risk practices are not enough on their own. What are the “causes of the causes”? ‘Stigma & discrimination’ and ‘illegality & criminalisation’.

10. SYSTEMIC BARRIERS Stigma and discrimination forces people away from information, support, services, peers, family & the rest of society. Long term effects of being locked outside of society – health problems, poverty, unemployment, premature death, etc. But what drives stigma & discrimination? Illegality & discrimination – the cause of other ‘social determinants of health’ – the “cause of the causes”.

11. WHAT NEEDS TO CHANGE? EVERYTHING!!!! – No? Minimum: Stop pretending/hoping everyone is a ‘former injecting drug user’ Review our ‘models of access and service delivery’ in relation to hepatitis C – people need access to coordinated & integrated preventative and primary care services that are multidisciplinary in nature , based in meaningful communication between individuals and service providers and incorporates peer education and support as fundamental aspect of a quality & accessible model of service delivery.

12. WHAT NEEDS TO CHANGE? General/Practical - cannot over-emphasise the importance of peer education and peer support. Evidence supports peer education and support – it makes the difference in hep C service delivery and hep C treatment is no exception – seeing increases in uptake. Remove the impact of criminalisation on people with a history of injecting drug use – including harmonising drug control laws with public health outcomes.