I should have been asked about my access needs from the start: Trauma, ...
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My name is Hunter and I work for Harm Reduction Victoria (HRVic), the local drug user organisation. Our work follows the philosophy ‘nothing about us without us’, meaning that we work toward the inclusion and representation of drug users in all things that affect our health. Harm reduction is also a core part of our value system – it’s a way to respond to drug use which prioritises working with people where they’re at, pragmatism, and reducing harm and risk rather than abstinence.
HRVic is a membership-based, not-for-profit organisation that formed in 1987 in response to the emergence of HIV in Victoria. In Australia, we were lucky that the government made an early decision resource affected communities to respond to HIV. This meant that people who inject drugs (PWID), sex workers and men who have sex with men were able to form their own peer-based organisations with funded programs to prevent HIV transmission.
We have a fairly unique situation with regard to HIV and PWID in Australia – early funding for peer-based organisations and needle and syringe programs has meant that HIV rates among PWID have always remained low.
This is how peer-based drug user organisations started in Australia, but these days our work goes far beyond HIV. HRVic currently has programs working on overdose, festival harm reduction, pharmacotherapy (methadone & suboxone), and blood borne viruses (BBVs) more broadly. I work on HRVic’s BBV programs and these days hepatitis C is our main focus.
Unfortunately, drug using communities haven’t had as much success with hepatitis C as we have with HIV. Current research says that around 6 out of 10 PWID in Victoria have been exposed to hepatitis C and nationally 9 out of 10 hepatitis C transmissions every year happen in drug using communities. Hepatitis C damages the liver gradually over time, and can lead to liver cancer and death. Along with hep B, this is the number one reason for liver transplant in Australia. Hopefully it’s becoming clear why so much of our work as drug user peer educators is focused on hepatitis C.
On top of the risks that come with injecting drugs, there’s a range of social issues that put the health of drug users at risk and add to the complexity of hepatitis C. I think the most important of these issues are stigma and discrimination and our current drug laws.
A few years ago, our national peak organisation – the Australian Injecting and Illicit Drug Users League (AIVL) – did research on drug users’ experiences of stigma. They found that the most common sources of discrimination against drug users were medical professionals, and that experiences of discrimination was widespread and common. The fear of being stigmatised discourages people from seeking medical help when they need. Drug use being illegal makes users even more reluctant to come forward and seek medical attention, and many who do will hide their drug use and the risk of contracting hepatitis C.
Before March 2016 the treatment available for hepatitis C wasn’t that great. It involved tablets and injections, with severe side effects often compared to chemotherapy, that were only available through liver specialists. Many saw others going through this treatment – losing hair and lots of weight, deteriorating mental health and sometimes suicidal thoughts.
On top of this, the treatment took up to a year, had a low success rate, and people had to stop using drugs before they could be treated. Combine this with the social and legal barriers I mentioned above, and we have a situation where most people living with hepatitis C haven’t been successfully treated and hepatitis C treatment itself has a pretty bad reputation. For some PWID, the medical system in general has a bad reputation.
In March 2016 a new type of treatment became available in Australia. These new treatments are much more effective, have few to no side effects, and are available through GPs to anyone 18+ with a Medicare card – including people currently using drugs. They also have a success rate of 95-98%. Governments and health organisations around the world believe that we now have the tools to eliminate hep C, and this is what the theme for World Hepatitis Day refers to.
In Australia, we’ve treated tens of thousands of people since 2016, but this is still a minority of the people living with hepatitis C. To eliminate hepatitis C, we particularly need to treat current PWID, since injecting is the most common way the virus is spread. To do this we need to face the challenge of not only promoting improved treatments but also building trust between a marginalised group of people and a system that has let them down or even harmed them in the past.
Image: HRVic poster resource on new Hep C treatments (available here)
Spreading the word about the new treatments is a great place to start. Let people know that there are few side effects, that they can still be using, and that GPs can now prescribe. If you’ve had a positive treatment experience, share that with your community!
There is still a long way to go. As I’ve mentioned above, there are a lot of potential barriers between people and hepatitis C treatment. In my work, I find that lots of people know they have or are at risk of hep C but they have other things going on in their lives that are more urgent – housing, legal issues, child protection, food, etc. These people can’t find the time to get tested or treated, or they don’t trust that the new treatments are any better than the old and they don’t think doctors will treat them with respect and dignity.
There aren’t any easy answers, but at HRVic we think the best results will come from building trust and relationships long term, and being there when people are ready.