James’s Story

Name: James

Gender: Male

Age: 56

Who is James?

James lives with his wife in Melbourne, Australia, and works in the entertainment industry. He describes his ethnic background as ‘Australian’: like both of his parents, James was born in the United Kingdom. Having had successful interferon-based treatment in 2015, James thinks of his hepatitis C as ‘done and dusted’.

Brief Outline:

James was first diagnosed with hepatitis C when he lived in the United Kingdom around 2000 but didn’t have treatment until he emigrated to Australia in 2015. He says that hepatitis C ‘didn’t impede’ his life. James was cured of hepatitis C with the older, interferon-based treatment and says he experienced minimal side effects while taking the medication. He no longer thinks about hepatitis C, explaining that ‘It’s just one of the many things that have happened in my life’.

James's Story:

After suddenly developing a skin condition in his forties, James sought treatment from his GP and decided to ask for a complete health check: ‘I said, “Look, while I’m here” – I was 40 years old at the time […] and I believe in being quite upfront with doctors – and I said, “This is what I’ve done with my life [referring to injecting drugs], you know, [and I’ve] never been to the doctor’s, I feel pretty healthy, but I’d better have […] a check over while I’m here.” And, you know, they just did all the checks, and it came back with, yeah, hep C positive.’

After being diagnosed with hepatitis C in the United Kingdom around 2000, he says he ‘felt a bit gobsmacked in a way […but also that] it wasn’t a sort of a huge life-changer’. As he explains: ‘Nothing was intrinsically different. I just found I had something, and it wasn’t like it was cancer or something, which, you know, gave me six months […to live] – this is hepatitis, which seemed to be, from my understanding, a very long-term thing. It wasn’t an immediate threat.’

James was open at work about having hepatitis C and says he received a lot of ‘support’ from his ‘friends and colleagues’. His life didn’t change much after being diagnosed, as he was busy supporting his daughter in her first year at university and working on his relationship with his partner. According to James, hepatitis C ‘wasn’t the main sort of feature’ of his life.

He recalls that treatment wasn’t appealing at the time because of the limited success rates. As he observes, ‘The ribavirin-interferon [had a] 50% success rate.’ At that time he was wary of treatment: ‘For a hell of a lot of people, it really knocks them for six, but there’s lots of research going on and before too long, other treatments might be available.’ He reflects that those considerations ‘would’ve influenced [his] decision not to act immediately.’

James explains that after emigrating to Australia 2015, he was referred to do the older, interferon-based treatment at a public hospital. Compared to the approach to treatment in the United Kingdom, James says, health professionals in Australia were ‘very positive and informative’.

He knew the success rates for interferon were low and that side effects were likely, but he says he thought to himself at the time, ‘Well, you know, I’m doing this treatment. I’m not going to have any effects and I’m going to [get rid of] it.’ He had treatment for 48 weeks, experienced minimal side effects and was cured of hepatitis C. This result also prompted him to seek support around his alcohol and other drug consumption, and he gave up drinking.

Reflecting on his experience of treatment and cure, James says he no longer thinks about the virus. As he puts it, ‘I don’t really think about hepatitis, because it’s just one of the many things that have happened in my life […] I had hepatitis C, but I wasn’t debilitated by it at all […] it’s done and dusted and in no way shape or form [does] the fact that I have had hepatitis impact or, you know, [have] relevance on my life really.’

For James (M, 56, experience with old [interferon-based] treatment), diagnosis wasn’t a ‘huge life-changer’, because he didn’t see it as an immediate problem.

Nothing was intrinsically different. I just found I had something, and it wasn’t like it was cancer or something, which, you know, gave me six months less [to live] or something, you know. This is hepatitis, which seems to be, from my understanding, a very long-term thing. It wasn’t an immediate threat, if that makes sense […] So, you know, my life has sort of been up [and down], you know, I’ve had worse things affect my life, to be quite honest. So, yeah, it was just something that I took in my stride and just something to be sorted out at some stage.

Reflecting on his how his partner responded to his hepatitis C, James (M, 56, experience with old [interferon-based] treatment) explains that her familiarity with it meant he didn’t feel the need to hide anything.

Yeah, so it was fully accepted, [I] didn’t have to hide anything at work or from my wife. She actually had it herself once. This is before we were married. This is sort of years ago. Her and her partner got it. She cleared it herself and her partner had to undergo interferon treatment, and I think he got knocked around a bit by it, but […was cured of] it, ultimately. So, it’s not as though she was totally unaware […] So even though, you know, injecting wasn’t a big thing in her life, you know, we both had that, you know, so nothing needed to be hidden. There was no judgement or anything like that for that. All my surroundings just made it easier for me probably than it would’ve [been] for somebody else.

James (M, 41, experience with old [interferon-based] treatment) says that he no longer thinks about hepatitis C since he has been cured. He says that given his successful treatment outcome, hepatitis C is no longer relevant to him, and it only occurs to him when he sees the local GP who managed his treatment.

No […I don’t think about hepatitis C] at all, actually […] When I take my wife to our local GP, obviously they know me [and know that I’ve had hep C] because they helped me get [treatment], you know. In fact, he was the one who referred me [to treatment]. Anyway […] it’s not an issue now, so we don’t ever currently discuss it. It’s just not applicable to me. It’s sort of, you know, it’s done and dusted and in no way, shape or form [does] the fact that I have had hepatitis impact or [have] relevance [for] my life really, so it just never comes up. I just don’t even think about it, you know, unless I hear the words ‘hep C’ and I go, ‘Oh yeah, you know, I had that and I [was cured of] it.’

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.