Who is Cal?
Cal lives alone in a squat in Sydney, Australia, and has three adult children. He describes his ethnic background as ‘Australian’: like both of his parents, Cal was born in Australia. His primary source of income is a social security benefit for people living with a disability.* While he hasn’t had treatment yet, he says that his ‘mental state’ would ‘improve dramatically’ if he was cured of hepatitis C.
Cal was diagnosed with non-A, non-B hepatitis in the early 1990s, when he was 17. He remembers calling his mother straight away, and she started researching hepatitis and treatment options for him. Over the years several people have encouraged him to have treatment, but a range of issues have gotten in the way. He says that he has heard that the new treatment has no side effects, but is worried that he would forget to take it.
As Cal explains, his mother started researching hepatitis after finding out about his diagnosis: ‘From [that moment on], Mum just went gung-ho into [finding out about] the hep C. She’s the one who told me when it got named hep C [instead of non-A, non-B hepatitis]. Yeah, Mum is really well-educated on it. She wanted to find out as much as she could on it.’
A few people have encouraged Cal to have treatment over the years he has been living with hepatitis C. He says that his mother would mention it to him every time they met, and health professionals at different services also suggested treatment. As he explains, he has considered treatment a few times, but a number of issues have gotten in the way.
According to Cal, over the years he has ‘sort of [gotten] complacent’ about his hepatitis C: ‘[I] got comfortable with it, maybe. The scared little boy sort of went away, you know what I mean, and I just ended up coping […] I just ended up living with it, sort of thing, and pushed it to the back of my mind over the years.’ He also says that his drinking and other drug consumption meant he thought it was unlikely he would finish a course of the interferon-based treatment (the old treatment) given its length and likely side effects.
More recently, several people who had have tried the new treatment suggested Cal should also give it a go. As he puts it: ‘I’m really surprised [by] the amount of people who tell me about it, you know, and [say that it has] no side effects at all […and the] virus [is cured…] so quickly. So it sounds like they have really nailed the treatment, haven’t they?’ He says he’s considering treatment but, because of his other responsibilities, he’s worried he might forget to take it: ‘My only concern is, yeah, forgetting, you know… like, with the methadone, also [I have to] report to the police […] every day, so [I need] a way of remembering and […taking it] at the same time every day.’
While he hasn’t had treatment yet, Cal says that he thinks his ‘mental state’ would ‘improve dramatically’ if he were cured of hepatitis C. He explains that while his sister hasn’t treated him differently since his diagnosis, he is especially worried about bleeding around his nephew: ‘It’s paranoia, I suppose, but you don’t want blood going everywhere, anyway, but even if it’s a little cut or whatnot, you know [it’s worrying] … My sister knows I have hep C and she has a little son and, you know, like, she let me mind him when she wanted to go up the road, so she never made me feel any different.’
*Services Australia Disability Support Pension.
Cal (M, 50, incomplete treatment experience) was 17 when he was diagnosed with hepatitis C, and he says that he should have had his mother with him at the time. He recalls the doctor saying that he had 20 years left to live, but he thinks this may have been a strategy to scare him.
[The doctor explained that] it attacks your liver. And I’m trying to take this in, but, like, on the other hand, I’m freaking out and, like, totally freaking out. I should have had mum with me probably, but I didn’t know that was going to happen, you know, and, like, because of my drinking and because I smoked as well, but because I was a heavy drinker […] he said, ‘Because you’re drinking as well, it’s not good for your liver, you know, both in combination, you know’. That’s why he sort of said [that I had about] 20 years [left to live]. I don’t know whether he was trying to scare me out of drinking at that age or what, you know, but yeah, he didn’t really explain too much. I wasn’t really listening too much after that point, you know, because I was just sort of freaking out. I just wanted my mum, sort of thing.
Cal (M, 50, incomplete treatment experience) recounts how he called his mother immediately after receiving his hepatitis C diagnosis when he was 17. He explains that she would research and tell him what she found.
I was in tears when I came out of there, so I just went straight to the phone, public phone, and rang her up and she […] came straight down, and it took a while to calm her down, I remember, and then from then, Mum just went gung-ho into [worked hard to find out about] the hep C. She’s the one who told me it when it got named ‘hep C’. Yeah, Mum is really well educated on it. She wanted to find out as much as she could on it […] Once she [was away for about six months], I didn’t hear from her for a bit, like, she had to go and get her head together or whatever, and then, like, she was still doing, you know, looking and researching. So every time Mum and I would catch up, she’d always have something new to tell me about […] all the treatments and whatnot. I sort of … I didn’t know too much, because I wasn’t looking into it, but [I] just [learnt more] from hearing it from my mum, you know.
While Cal (M, 50, no treatment experience) says he wanted to have treatment to ‘make the best’ of his time in prison, he describes finding it hard to complete treatment because of cycles of imprisonment and bail (conditional release).
Yeah, [I wanted to start treatment while I was in prison in] 2014 […] I thought, ‘I am going to make the best of this and start treatment’ because I could have been in there for a while. Then I ended up being bailed. But I wanted to continue on [the treatment after I left prison but…] I ran into a few hurdles […] I was staying at […] the homeless place where I was bailed to and, yeah, […] they were making life hard for me. I don’t know whether it was over the charge that I was on from the court or, you know, but right from the start, I was copping hassles with them, and […] they kicked me out […This made me] breach my bail and so I ended up just going, ‘What’s the point?’, you know, and I didn’t chase it up [any] more.