Who is Marty?
Marty lives with his dog in a regional town in New South Wales, Australia, and does peer and advocacy work related to mental health and hepatitis C. He describes his ethnic background as ‘Australian’: like both of his parents, Marty was born in Australia. His primary source of income is a social security benefit for people living with a disability.* Marty describes being cured of hepatitis C in 2014 as a life-changing experience.
Marty was diagnosed with non-A, non-B hepatitis in the late 1980s after he donated blood and returned positive test results for what he was told was a ‘rare antigen’. He spent a lot of the next 20 years in prison, and during a period in prison he was diagnosed with hepatitis C specifically. Around 2014 Marty started to feel lethargic and, after having further tests, found out he had developed liver scarring and cirrhosis. He began interferon-based treatment but experienced severe side effects, so decided to stop after six weeks. However, a clinical trial of the new treatment offered soon after allowed him to try a different medication, and he was cured of hepatitis C in the same year.
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.
Marty (M, 65, experience with both new [DAA] and old [interferon-based] treatments) describes being unconcerned about his diagnosis when he received it in the late 1980s.
I was just going, donating my blood, going home, you know, every three months, and one day I read a letter from the blood bank saying there’s a rare antigen in my blood [and asking] could I duck back in and see them? And seriously I thought I might have had blood type Q and I was going to save a million people or whatever, I had no idea. So, I’ve gone back […] saw a doctor, blah, blah, blah, and he said, ‘Look, mate. We got to tell you. You’ve got non-A, non-B hepatitis’. Which now obviously is hepatitis C. And I went, ‘Oh okay, that’s fine’, and it meant nothing to me, because I wasn’t sick, nothing, nothing. He said, ‘But the only thing is, you can’t donate blood any more’. Like I say, it was just out of sight, so it just didn’t mean anything.
Marty (M, 65, experience with both new [DAA] and old [interferon-based] treatments) acquired hepatitis C in the 1980s. He began the old treatment in 2014, and says it was unpleasant and made him sick. (Note: strong language)
And then, I think, it was 2014, I believe, they said, ‘Your liver is starting to be, you know, pretty well affected’. So, it was their polite way [of telling me], even though they didn’t say it, [that] I was getting, or I had, fibrosis and/or cirrhosis. Still, out of sight [out of mind], you know, not turning up [to appointments]. Anyway, at the end of 2014 […] I googled cirrhosis, Google this, Google that, and I saw that this is going to get fricking serious. So, I went to the liver clinic […] I remember going in and […] they gave me this sort of … it was one of those backpacks that you could put ice in, you know what I mean? 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 […] Anyway, 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.
Marty (M, 65, experience with both new [DAA] and old [interferon-based] treatments) says he delayed having treatment because he didn’t experience any hepatitis C symptoms.
Now, in jail, I also knew I had hepatitis C […] because they did blood tests and my ALTs* and ASTs* 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. So, that’s all I sort of knew, you know. Your ALTs are high, your ASTs are high, all that sort of stuff. Anyway, fast forward, and still no ill effects in jail. Even though I was becoming aware of it because there was an old-timers’ wing, like unit, that they had turned into a hepatitis treatment sort of section (and it was interferon), but the amount of thought I gave it was minimal […] I wasn’t serious then, because there was no ill effects.