World Hepatitis Day: A Q&A With HCV Peer Worker Tony
Monday, 28 July 2025
July 28 marks World Hepatitis Day, a day to raise awareness and promote action on viral hepatitis. In honour of today, we sat down with one of NUAA’s Hep C Peer Support Workers, Tony.
Tony shared with us his journey with Hep C, incredible knowledge, and the importance of having peers in roles like his.
How did you find out you had Hep C and what was your gut reaction to the diagnosis?
So, I first found out that I had Hep C. Well, two things happened. It was about 1986. I'd been living with HIV for about two years and I was in rehab, and a part of entry to rehab in those days was doing tests for Hep C, HIV, and all of that. So, it was the doctor who broke it to me. I'm going to say it broke it to me, though I took it pretty gently I've got to say. In light of having HIV, I thought that non-A, non-B, as it was, I thought that because I hadn't been jaundiced I wouldn't be sick. Because I felt no symptoms. And I also thought that I’d probably be dead, you know, in very few years. So the long term effects of Hep C, I thought was something that I would avoid. I was dead wrong, of course, 'cause I'm 60 now, and that was when I was 20, 21.
My gut reaction was ‘I'll deal with it later’, and what led me there, because I had no knowledge of hepatitis at all… my knowledge of hepatitis was having friends who had been very sick, probably with Hep B, and had been jaundiced and been in hospital. But it was very limited. We still shared needles in those days, or a couple of years prior anyway, but we were still sharing. If somebody had hepatitis we’d just asked that they kept their syringe separate from ours. Doesn't that sound terrible now? But, there was no harm reduction, and no knowledge about Hep C or HIV.
What was it like getting treatment?
I didn't do treatment. I had experience with HIV treatment, and I was terrified. Because the treatments in the early years were terrible. They were highly toxic. It's a very similar story and a very similar sort of, parallel to Interferon and the direct acting antivirals that we have today. A lot of fear, based on the reality of what I'd seen, which was that people would start medication and then they'd die. That was kind of engrained to me, and I felt like we were being pushed onto medication in those days. I felt like we were being guilted into it, especially people at public clinics, they would have Hep C specialist nurses there telling us that we needed to have fine needle biopsies, and that we needed to stop using so that we could do the treatment. No one ever asked if we wanted to do the treatment, they just told us to.
So with the usual anxieties that are tied up to stigma and discrimination, those anxieties kicked in, and I didn't trust the health system. I'd slipped through everything that was supposed to catch me as a young person, as a young queer person, as a person with HIV, as a homeless boy, I just fell through every rung in the infrastructure. I did not have a lot of faith in it. I felt like the only time they reached out to me was when they wanted a guinea pig.
Then I finally made the decision. I finally made the decision to go on the medication, I think about the same time that I went on to HIV medication, which was in the early to mid 90s. I was prepared, I thought. So I did the preliminary tests, and they were negative. So I'd cleared it. I didn't even know that that was a thing in those days. I went through quite a bit of anxiety thinking about whether to go on the meds or not, decided I was going to do it, and then was relieved when I didn’t have to.
When did you start working as NUAA’s HCV Peer Support Worker?
I started working as NUAA’s HCV support worker about 10 years ago. That was at the Rankin Court Methadone Maintenance Unit, which is where I was, and still am actually, a consumer. Someone working outreach joined the queue that day and was passing out flyers for a job that was going at NUAA. I'd worked in harm reduction before, I'd worked for ACON, and I'd done work in other states. So I decided I'd go for it. I've got to say, other people had more faith in me in those days than I did. But I got it, and it was pretty amazing.
I felt this huge burden of carrying other people's stories, and other people's truths with me. The only way I can do that is to be authentic, you know, to myself, and speak from my own experiences. So no, I didn't do Hep C medication, but yes, I did make the decision to do it, to try. I have experience in Direct-acting Antivirals. When they came out, around 2016. I had been employed about a year before that. It was really exciting because, in all honesty, as a peer worker, I could not have promoted Interferon to my peers. I would have done it with warnings and doubts. I couldn't have done it any other way. So when the new meds came out and I started speaking to people who’d done them and were doing them, and it looked pretty fantastic. I felt like I could promote that, and I was proud to promote that, you know? It was really good timing in a whole lot of different areas.
I found that I had quite a bit of knowledge that I'd picked up over the years on the ways the treatments worked and what people could expect. I was just from a tribe, I guess, that was always big on sharing knowledge and insight. That's the way we'd always done it in the group of drug users that I came up in.
What happened then was that I was trained to carry out the tests, the Dried Blood Spot and the Point of Care technology. The pinprick made a massive difference. I still can't get blood. The doctors can't get blood these days from me without an ultrasound, that's my reality, and it was a barrier. To be able to offer that to people, that I could just take a little bit of blood from their finger and get them their results pretty quickly, in those days it was a couple of weeks, then it changed to an hour, and then offer treatment. Treatment that I believed in, and I felt would be a good thing for community. It was something that I really took pride in. So for all my doubt and self-doubt and everything, I did take pride in those few years, absolutely. I loved having something that I could offer my community. I’m not academic, I don't even have a finished high school education. I never felt like I could give much in the groups and discussions around the forming of harm reduction and needle exchange, and services. But here, as a peer, I felt like I had insights to offer. Genuine insights. People knew me, they knew my story, and I had a bit of trust which is awesome.
Why is it so important to have peers in roles like yours?
I believe in what I do, and if I don't, I can't, you know? It's a simple process, and it's a friendly process, and I hope that I can offer it to people who need testing and want testing in a way that is new to them. I know that peer workers like me have actually made a huge difference in people's lives, and that's what makes life worth living, I think.
This is our community, this is people that we love and care for. There’s proof that peer workers work. I can look around and see the faces. When I think, I can recall faces of people who were pretty wound up, and upset, and scared, who now don't have Hep C on their radar. Also, the amount of people who've assumed that they were positive and put off testing because of that, only to find out that they were negative, or that they had had it and they cleared it, is massive. I've seen it lift like a cloud from people's personal sky. It lifts and it takes with it all that, that unsure fear.
It's important to have peers in health, in mental health, in drug and alcohol. In all of these areas where we talk about stigma and discrimination being a barrier to people's health and well-being, there's a gap that can be filled with peer workers. That can bring surety, comfort, knowledge and insight to people who may not have had that.
In my life, in those days, I was amongst people who were drug users, sex workers, activists, street people and artists. If I had been a statistic and been someone that passed when I was very, very young, I think my experience with love would have been these people that I met in rooms where we tried to help each other, and tried to find change for each other.
What does getting tested for Hep C involve? What happens if someone gets a positive result?
Getting tested, as I mentioned, just involves a finger-stick. It feels like you're being flicked with a rubber band. When somebody comes in for a test we go over what might happen, and that if the result is positive, we will offer treatment. We'll offer a supported treatment plan, which means that we'll meet them wherever we can — at their OST, or they can pick up from us, or we can make arrangements for them to pick up somewhere else if they're living rough or homeless, just to give an extra layer of security to the whole process.
Is there anything else you’d like people to know about Hep C?
What I'd like people to know is that we don't just offer treatment, we offer a cure. Early intervention with treatment seems to wipe out a lot of the pretty horrible things that can happen to people in with Hep C, like liver cancers and fibrosis.
What is your advice for people uncertain or nervous about getting tested for Hep C?
If you're nervous or uncertain about getting tested for Hep C, speak to me, or speak to other peers, and speak to people who've done it. Get as much information as you can. If you need help understanding it, come and see a specialist like me, a peer, or your doctor, or a specialist at your NSP. No one is going to be able to settle all of your nerves or your doubts, but we can make it easier, and we can give you a bit of a map and a bit of a plan.