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Lee’s Story

Name: Lee

Gender: Male

Age: 45

Who is Lee?

Lee is currently living in a residential alcohol and other drug treatment service in Sydney, Australia, and has one adult child and one young child. He describes his ethnic background as ‘Australian’: like both of his parents, Lee was born in Australia. His primary source of income is a social security benefit for people who are unemployed.* He says that his successful experience with interferon-based treatment in 2014 made him feel ‘invincible’.

Brief Outline:

A blood test in 1999 indicated that Lee had hepatitis C antibodies, but later tests suggested that he didn’t have an active disease and had cleared the virus spontaneously. After he shared injecting equipment in prison, however, he was diagnosed with active hepatitis C in 2002 or 2003. He lived with the virus for around 10 years, until he had the older interferon-based treatment in 2014. He was cured of hepatitis C through this treatment, having continued playing and coaching AFL football throughout the treatment period despite significant side effects. For him, completing treatment was a way of dealing with his past.

Lee's Story:

It was the late 1990s when Lee first learnt about hepatitis C. As he explains, he was living next door to a ‘needle exchange’ and sometimes participated in research about drug ‘harm minimisation’ and blood-borne viruses. He recalls staff members from the service would ‘speak to you about hep C or offer you hep C brochures and stuff’.

In 1999, when Lee was 24 he was offered a test for blood-borne viruses at the beginning of a prison sentence, and it showed he had hepatitis C antibodies in his blood. As he explains, ‘I shared a lot of needles and have done lot of unsafe practices, so I was screened, and then about a month later the doctor called me in and said that I had antibodies, and he explained straight away that didn’t necessarily mean I had the virus and that my liver scan and that seemed all right.’

After these results, Lee had a PCR (polymerase chain reaction) test that indicated that while he had acquired hepatitis C in the past, he didn’t have an active case and may have cleared the virus spontaneously.

Lee explains that he regularly shared injecting equipment with ‘complete strangers’ while he was in prison, a practice he continued after leaving. As he puts it, ‘I completed that sentence, which was about 18 months, and then was out for a short while, [and] continued sharing with partners, sharing with anyone.’

Around 2002 or 2003, Lee entered prison again and had more tests, which this time came back positive for active hepatitis C. During this period in prison, he continued to inject drugs and had little access to sterile injecting equipment: ‘I just used every day and we had really limited … we had bleach in prisons [to clean the syringes] but there were periods where we didn’t have very many syringes [so we would share them].’

Lee lived with hepatitis C for about 10 years before he started thinking about treatment in 2014. During this time, he says, he played AFL (Australian Rules Football) at a high level, while also drinking every day. According to Lee, his success with AFL ‘deluded’ him that the hepatitis C wasn’t affecting him. When he sought treatment for his heroin consumption in 2014, he also had more blood tests, and decided to have the interferon-based hepatitis C treatment that was available at the time.

As he explains, AFL football was an important part of his life, and he was worried that treatment would get in the way of his coaching and playing responsibilities and performance: ‘My biggest fear was [that] […] I was 39 then as well, so, like, I was chasing 20-year-olds around [the football field…] After speaking to the specialist [I learned] that the treatment would probably knock me on my arse a couple of days a week, and that was my fear because I was contracted to coach, so that was my income, and the fear was that it would affect that.’

After speaking with his specialist, Lee decided to approach his treatment in a way that would have the least possible impact on his football: ‘I chose to have my [medication] injection every Saturday afternoon after the game and every Monday afternoon at about one in the afternoon. [Then] I would hit a wall and I would spiral and go in[to] complete exhaustion. So, you know, I became aware of that after a while: its regularity. Then I would sleep through Monday afternoon and get up Tuesday morning and I was fine again.’ As he explains, the treatment didn’t have the impact he was worried about: ‘It didn’t affect my energy levels, like, I was 39 and I played my best years of football I ever played, yeah, it had very little effect on me at all.’

Lee’s treatment was successful, an experience and outcome he says made him feel ‘invincible’. He believes it contributed to ‘positive’ feelings about himself, as it was something that he had ‘really stuck to’. Reflecting on his treatment experience, Lee says ‘it was [a] way to deal with […] his past.

*Services Australia JobSeeker Payment.

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Lee (M, 45, repeat diagnoses, experience with old [interferon-based] treatment) recalls being a ‘bit blasé’ after being diagnosed during a period in prison.

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When you go into custody, you are just given the option to be screened for blood-borne viruses. It was just an option, and I was 26 and I shared a lot of needles and have done lot of unsafe practices, so I was screened, and then about a month later the doctor called me in and said that I had antibodies. He explained straight away that didn’t necessarily mean I had the virus, and that my liver count and that seemed all right, and then they did the PCR test and I had cleared [been cured of] the virus. So, yeah, I wasn’t overly concerned when the doctor explained things straight away, and because I had a bit of prior knowledge, yeah, and I was still using drugs in prison at that stage, so I wasn’t … I was a bit blasé to the whole reality of the importance of having a functioning liver.

For others, like Lee (M, 45, repeat diagnoses, experience with old [interferon-based] treatment), who didn’t experience side effects from the interferon, being cured of hepatitis C was connected to feelings of pride that he had completed the treatment with ease and created positive change for himself.

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Part of it made me feel invincible, you know, because I was told that I will be getting all these side effects and every month when I would go in to see the specialist and have the blood work done, they will be like, ‘You know, how are you, and how are you sleeping and how are you eating?’ and I am like, ‘Fine, you know, nothing at all’. So, it made me feel invincible. It also made me feel positive that I was sticking to, you know … like, I did heroin all my life, so I’d never really stuck to anything positive for myself and seen it through – anything, actually, not anything. So yeah, that was a good marker for that, I suppose, a change in behaviour.

Talking about the way that stigma can impact communication about treatment, Lee (M, 45, repeat diagnoses, experience with old [interferon-based] treatment) explains that he feels more able to discuss hepatitis C with peers and other people who are on his ‘level’.

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So, when I started treatment, the specialist that I started the treatment with in 2014 or 2015, whenever it was that I started the treatment, he offered to hook me up with a nutritionist and stuff like that. That was positive because I am like, ‘Oh, this guy is not just giving me drugs and going, “Here, take them home for a week and see what they do to you.”’ He was actually more holistic, I guess. My experiences with the guys at the public health team at the [western suburb] needle exchange in the late ’90s, they were really cool because they were like my peers, they were on my level, so I never did think they were talking down to me. I assumed that some of them are IV drug users themselves, which made it a lot easier to talk about blood-borne viruses and, you know, risk-taking behaviours. Speaking to you about it now, and you have kind of disclosed that this stuff is not something you have experience or knowledge of, it’s only because I have done this so many times that I am able to disclose [to] you stuff so openly, like, the fact that I have had hep C twice and then continually re-expose myself to the possibility of getting it. Maybe talking to you 10 years ago, there would have been a lot of shame around that. So, whereas talking to a peer or talking to a doctor or a pathologist or something about my intravenous drug use and my, you know, concern for the way that I use [injecting drugs] wouldn’t have been so easy as what it is now. It’s easier to talk to someone – when you are a bit shameful around your behaviour – that is on your level, rather than someone that you see as in a position of authority or whatever.