Hep C and I have a long history: In 1999, I was quite young and on remand and they must have given me a hep C test. I didn’t even know what they were testing for at the time.

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As a teenager, I’d heard a bit about hep C, knew it was part of injecting drug use culture but not much else. When I was released, I received a letter from the prison telling me I had hep C. All I got was that letter, no follow-up – just them saying, “Here you go, have this.”

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While not surprised to find out I had hep C, I was worried. I believed hep C was quite bad, something serious and incurable, and I was ashamed to be talking to people about it. Apart from not sharing injecting equipment, I decided to forget about it for the longest time.

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There came a point though where I couldn’t ignore the effects of hep C any longer. It had begun to accumulate physically and really impact my mental health. The only treatment available then was interferon based, so I endured a very difficult 12 months where, yes, I managed to be cured of my hep C but not without going through painful and dark times.

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It was later, when I’d been locked up for a second, longer time that I started hearing interferon was a thing of the past and there were new treatments – direct acting antivirals (DAAs). The changes these treatments brought were a game changer. I found out people didn’t have to go through what I did to get cured. When I first heard about the DAA treatments, the prison I was in had great Justice Health nurses. They got out to the wings and were educating us on how much was changing for the better. Some prisoners still associated the old treatment with DAA treatments, but that’s changing as well, especially among younger people. For me, I’ll admit I had some envy for the guys that were able to go through these easier treatments.

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Living with hep C in prison was, and is, a personal journey. Some people aren’t ready to tell others about their hep C status. This can be due to self-stigma or not having great health literacy, a lack of social support or sometimes cultural reasons – but mostly the concern is someone is going to make it an issue. People are wary and don’t want to be “put on show” because that affects every part of your waking day inside. Meaning people kept it to themselves, and some still do, as a form of self-protection.  

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Once the DAA treatments came in, however, some people became increasingly open about their hep C status. They’re like, “Yeah, I’ve got it. I’ll get treated. It’s all good.” Other people were still devastated and could feel very alone after an initial diagnosis. However, as the DAA treatments rolled out, especially where nurses were able to be proactive, you could see things changing for the better.

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Posters about how easy it was to access hep C treatment were everywhere in my prison. Many prisons had testing campaigns where you were encouraged, regardless of any previous treatment or potential hepatitis C risk factors, to get tested.

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People were tested and retested over a 6-month span. When I did it, I got a water bottle or some buy up money and beanies and other stuff. Incentives for getting tested really got my attention, and more people started to see this was for real … and worth a go.

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The messages from nurses and other places like Hepatitis NSW, about how you could be cured in prison with a course of pills over a few months, became clear. And, even if you’re reinfected, you can get treated again. It’s up to you and your nurse or doctor to decide what’s right for you.

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The information’s become better, something aided by people’s awareness of how to access external services available through the free phone-based services. Hepatitis NSW’s Infoline is well known in every NSW prison.
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A lot of people follow up and rely on the advocacy the Infoline can provide. This is especially important in remand centres, where it’s harder to get access to health staff because of the constantly changing populations and tougher conditions compared to most post-sentence prisons.

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When more people started accessing treatment and were sharing their good experiences about the process and outcome, it helped Justice Health encourage others into testing and treatment.

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I think it really bolsters a lot of people’s hopes for the future and themselves.

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While the DAA treatments revolutionised the care for hep C, they also slowly helped people with different levels of health literacy in prison. This not only helps people being treated; it also introduces organic peer education on the treatments and how effective they are.

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It’s prisoners often educating prisoners, not through intentional advocacy but just through everyday conversation. It comes up, and there’ll be people sitting around talking.

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Those conversations go right throughout a prison. Information is a fast-moving commodity in every prison. Things might take a while to stick and perhaps end up with some alternative facts attached, but it keeps on going around. Repeated information becomes accepted knowledge for the wider community.

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Most people, once they’ve settled into a prison, create a peer network. You hang with people you get along with and who are generally accepting of you. Again, it can come down to cultural stuff, to people’s preconceived ideas and how they view themselves. Mostly though, these social networks support each other and don’t care if someone’s got hep C as long as there’s loyalty and respect.

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I reckon Justice Health staff have done a lot to demystify hep C. Being able to provide supporting information is helpful, and then people can go back to a wing where a lot of their peers can reinforce the information Justice Health staff are providing. This creates balanced support to help people more easily come to terms with having hep C.

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It can also extend support from the prison settings to community corrections, often the next step post-release. When I speak to people in those settings, their hep C knowledge is sound, and that’s from being treated and receiving good information while inside.

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Going from prison to the outside world, you’re seeing those people going back to their communities with some vital, factually based knowledge on treatment, on testing, on what hep C is, and they are imparting their knowledge to people in their networks.

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Hopefully that’s helping communities who are harder to reach or perhaps don’t have access to decent services. Some newly released people are, without even realising it, becoming ambassadors, advocating for hep C treatment. This is a great outcome for those people while they’re in custody but then creates beneficial effects for people in their community as well.

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All the parts are in place, whether coming from inside or outside the prisons. Being able to receive good information and effective treatment is a massive win for people in custody. The DAA treatments can offer a solution; people can access treatment with an optimistic sense that, even with everything else that’s going on, hep C treatment is doable.