Marty’s Story

Over the next 20 years he served probably ‘18 years in jail’ across multiple sentences, and during a period in prison his non-A, non B hepatitis was renamed hepatitis C. He explains, ‘Now, in jail, I also knew I had hepatitis C. Well, it was [called] hepatitis C now, because they did blood tests, and my ALTs and ASTs [liver enzymes] were pretty high, but all they could do was tell me that I had the virus. There was nothing they could do, but again, it didn’t feel or seem serious, because I didn’t, at that stage, have any ill effects.’

In 2002 Marty was released from prison and began accessing methadone maintenance treatment. Over the years, health professionals at his methadone clinic conducted routine blood tests to monitor his liver health, but he recalls he still wasn’t concerned about it. It was around 2014 that he started to experience symptoms – lethargy – and, after having further tests, found out he had developed liver scarring and cirrhosis. He remembers that at this time he began researching his diagnosis and considering treatment.

‘I Googled cirrhosis, Googled this, Googled that, and I saw that this is going to get fricking serious. So, I went to the liver clinic at [a regional] hospital, saw a nurse […and was] prescribed interferon […] They gave me this sort of … it was one of those backpacks that you could put ice in. It keeps things cooler and everything was in there, you know, the injection, all the rest of it, the interferon, I’m talking about, and I was excited. I’m thinking, “Well, you know, I’m going to cure this!”’

Unfortunately, he explains, the interferon caused terrible side effects: ‘I’d gone home, done the injections, I was on it for six weeks, and I’m telling you, for me, interferon was deadset lower than shark shit. It was the worst thing I’ve ever tried. It made me sick.’

He also experienced faecal incontinence, which left him feeling ‘totally humiliated’. In the end he decided he’d ‘rather have the disease’ and stopped treatment after six weeks. He says although he was given booklets about interferon, he wasn’t given information about its low success rates, the length of the treatment or possible side effects.

Soon after, a clinical trial of the new treatment became available and a nurse encouraged Marty to register for it. While he describes feeling sceptical because of his previous experience, he agreed and began a 24-week course of treatment. He remembers experiencing ‘absolutely no side effects’ and telling the nurse ‘it’s not working’. However, after eight weeks, he was told that the treatment had worked, and he’d been cured of hepatitis C.

For Marty, being cured of the virus felt like an ‘achievement’. He says that ‘it was life changing’ and made him feel better about himself. He remembers his neighbour throwing a big party for him in celebration: ‘[I] walked out to the backyard. There’s a big sign there, Congratulations! Platters of fruit and all the rest of the stuff. Yeah, and it was, like, sort of, a big congratulations on [curing] the virus. She’d done that for me, you know what I mean? Yeah, so I mention that because, you know, for someone like me, you don’t expect stuff like that.’

Marty continues having liver health tests twice a year to monitor the cirrhosis but feels confident it won’t get worse. He says his experience of hepatitis C informs his peer work and health promotion advocacy. He feels positive about the new treatment and is hopeful that other people will access treatment too.

*Services Australia Disability Support Pension.