Sean’s Story

Name: Sean

Gender: Male

Age: 42

Who is Sean?

Sean lives alone in temporary accommodation in Sydney, Australia. He describes his ethnic background as ‘Australian’: like both of his parents, Sean was born in Australia. His primary source of income is a social security benefit for people who are unemployed.* Sean says that his life didn’t change much after he was cured of hepatitis C in 2019 and that he doesn’t care whether he has it or not.

Brief Outline:

While Sean wasn’t diagnosed with hepatitis C until 2001, he says he thinks he acquired it as a teenager in the late 1990s. He remembers being advised not to have treatment at the time of his diagnosis, and lived with hepatitis C until 2019, when he was nearing the end of a prison sentence and decided to have treatment. According to Sean, treatment wasn’t a ‘big thing’ to him and being cured of hepatitis C hasn’t had a significant effect on his life.

Sean's Story:

Sean remembers quite clearly how he acquired hepatitis C. He describes how when he started injecting drugs as a teenager, people ‘used to leave syringe boxes […] with clean fits [syringes] in them’ in places known for drug consumption. He remembers visiting a public toilet in about 1999 and using a syringe from one of these boxes, thinking that it hadn’t been used before. After injecting, he realised that the packet of the syringe had already been opened before he used it. He explains that he ‘didn’t share needles or nothing at that stage’, so thinks that was the only way he could have acquired it.

It was several years later, in about 2001, that a blood test in prison showed he had hepatitis C. He recalls that you could get information about hepatitis C in prison if you asked the health workers: ‘You’ve got to speak to public health nurses and drug and alcohol nurses, but if you didn’t chase [information], they didn’t come and tell you.’

Sean recounts that during this time he decided not to have treatment: ‘I didn’t want to do that other [interferon-based] treatment because I thought there wasn’t a very high rate of success […] and I got told at that stage [that] I had one of the strains that wasn’t very good with the treatment. I also got told that my liver function was better than somebody my age that didn’t have hep C.’

Sean recalls seeing information about the new treatment in prison a few years later (around 2020) and thinking he ‘might as well do[it]’ because it was available. He says that while he had a few headaches during treatment, he didn’t ‘look at it like a big thing’, and he describes treatment as a ‘solution’ to a ‘problem’.

Sean remembers being advised that he would ‘have more energy’ and ‘feel better’ after being cured of hepatitis C, but says that it hasn’t had a significant effect on his life. He is currently unemployed and living in temporary emergency accommodation and explains that his life ‘isn’t that great’ and that he ‘couldn’t give two shits whether’ he has hepatitis C or not.

*Services Australia JobSeeker Payment.

Despite concerns about reacquiring hepatitis C, Sean (M, 42, repeat diagnoses, experience with new treatment [DAAs]) says that some settings, such as prison, constrain harm reduction efforts and increase risks associated with injecting.

I would feel pretty stupid if I caught it again, you know, I really would […] because I know enough about it to not get it […You] just say, ‘No’ to using a friggin’ syringe that 20 people have used before you […But it’s harder in jail], there is no equipment in jail. There is none, and you know what, I’ve seen people … you can buy a watch, okay, […and], you know, the watch pin that goes in between the watch and the […wrist]band, I’ve seen people take out the watch thing, because they figured out that this watch pin was hollow, right … [laughs] and that was an aluminium piece. So, they would sharpen up this watch pin and make a syringe out of it, just so they had a clean one, and it’s, deadset, it’s like a friggin’ nail in your arm every time.

Sean (M, 42, repeat diagnoses, experience with new treatment [DAAs]) says that part of the reason he had regular tests for hepatitis C was to ensure he could explain his status to intimate partners, including those who might want to have children.

I chose to [have regular tests], like, I didn’t look at it like a thing you can only get from injecting drugs. Like, I knew it was a very small chance of getting it any other way [such as through sex], but what if I got a partner who doesn’t use [injecting drugs], you know, and I’ve got to explain to her, ‘Hey, I’ve got hep C’? [Or] she wants to make me have a kid, and then I’ve got an infection at the time, and she doesn’t know enough about it, you know? I’ve only been released from custody [since] 2018 […] Before that I was with a partner who used [injected illicit drugs] and she wanted to try and have a kid and that, and she did hep C treatment, and I didn’t [want to have a child] at that stage.

Sean (M, 42, repeat diagnoses, experience with new treatment [DAAs]) discusses how his life hasn’t improved a great deal since being cured of hepatitis C in 2019. (Note: strong language)

[My life hasn’t changed], not because of not having hep C, no […] My life isn’t that great, and I couldn’t give two shits whether I have it or not, you know. Yeah, I’ve got a pretty bleak outlook, you know […] I’ve just got a lot of stuff going on. You know, [my ex-partner], she’s my wife, I’m married to her, and I don’t even know where she is […] No idea where she is. I just know that she’s a mess and I can’t find her.

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.