Cal’s Story

Name: Cal

Gender: Male

Age: 50

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.

Brief Outline:

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.

Cal's Story:

In the late 1980s, when Cal was 17, he began injecting drugs. He remembers deciding to have what he thought of at the time as a ‘routine’ blood test and his doctor informing him that he had ‘non-A, non-B hepatitis’. He describes the moment of diagnosis as ‘confusing’: ‘I just said, “Well, what does that mean?” and he just said that I’ve got around 20 or 30 years to live with this thing, and I was only 17 [at the time]’. Cal didn’t know that this information would be proven to be inaccurate in the future, and after receiving this news was ‘in tears’ and ‘really upset’. He went ‘straight to the public phone’ to ring his mother, who came and met him immediately. He says he was in ‘shock’ because he ‘didn’t think [he] would have anything’, and he remembers it ‘took a while to calm’ his mother down.

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.

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[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.

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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).

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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.

Hepatitis C Quick Reference

While the new direct-acting antiviral (DAA) treatment for hepatitis C is generally straight forward, the personal experiences of people affected by it can be more complex. Below are a few key points about testing, treatment and health after cure.

Acquiring hepatitis C

Hepatitis C is a ‘blood-borne virus’. This means it is acquired through blood-to-blood contact. This can happen in several different ways. In some countries such as Australia, hepatitis C is commonly acquired through sharing injecting equipment. In other countries, hepatitis C is more commonly acquired through medical procedures or forms of skin penetration such as tattooing, body piercing or acupuncture, when unsterilised equipment has been used.

Hepatitis C testing

Two tests are used to diagnose hepatitis C. The first is an ‘antibody test’. This is used to identify exposure to hepatitis C. A positive antibody test shows that exposure has occurred, but not whether hepatitis C is still in the body. The presence of hepatitis C is determined with a PCR test. A PCR test looks for hepatitis C in the bloodstream by detecting the genetic material specific to the virus. A negative PCR test means the body has ‘cleared’ hepatitis C without treatment. A positive PCR test means hepatitis C is still present and medical advice is needed to discuss the possibility of future tests and treatment.

Treatment

The current form of hepatitis C treatment is called direct-acting antiviral (DAA) treatment. It is taken in tablet form, with around 95% of people cured on completion. This treatment replaced the old interferon-based treatment. The new treatment was a significant improvement for people with hepatitis C because it is relatively short (cure usually results within eight to 12 weeks) and has minimal side effects. The old treatment by comparison was much longer, less likely to result in cure and had many debilitating side effects. Because the old treatment was unreliable and debilitating, many people with hepatitis C chose not to have it, and instead waited for the development of better treatment. Many of these people have now been cured using the new treatment.

After treatment

After hepatitis C cure it is still possible to test positive for hepatitis C antibodies (see the two tests described above). This is because the antibody test only determines whether hepatitis C has ever been in the body. Only a PCR test can determine whether hepatitis C is still active in the body. Importantly, it is possible to acquire hepatitis again after cure. There are no limits to how many times testing or treatment for hepatitis C can be accessed in Australia. This means that treatment is always an option even for people who have had it in the past.