Evan’s Story

Name: Evan

Gender: Male

Age: 45

Who is Evan?

Evan lives alone in Melbourne, Australia, and has one adult daughter. He describes his ethnic background as ‘Australian’: like both of his parents, Evan was born in Australia. His primary source of income is a social security benefit for people living with a disability.* He has had hepatitis C for over 20 years but currently doesn’t plan on having treatment.

Brief Outline:

Evan was diagnosed with hepatitis C around the late 1990s. He has had hepatitis C for over 20 years, but doesn’t intend to have treatment at this point, as he doesn’t feel unwell. In the years he has had hepatitis C, Evan has focussed on other health issues, including mental health concerns. Since acquiring hepatitis C, he makes sure never to share injecting equipment with others.

Evan's Story:

Evan recounts that he acquired hepatitis C in the late 1990s, when he was in his early twenties. He reused the injecting equipment of his mother, who had hepatitis C: ‘I got it […] at my mum’s, it [was] through one of her used needles. That’s the only time I’ve ever shared equipment’. He says that he was diagnosed just under a year after sharing the injecting equipment. He recalls a night when he decided to go to the hospital because he was feeling sick: ‘I was really unwell and […] I just said, “If I am still feeling like this tonight, I am going to the [hospital]”. I was still feeling [sick] that night and, yeah, I went to the [hospital] and I think […] they admitted me straight away, and I stayed for about a week […] They did blood tests and everything, and they said, you know, “You have got a hep C flare up”’.

Due to his familiarity with hepatitis C at the time, Evan’s diagnosis didn’t concern him much: ‘I suppose if I was going to pick a word, I would say, [the diagnosis] didn’t appear to faze me much. [I] didn’t think, “I am going to die” or anything, because I knew my mum [had] had it forever, so just thought, “Okay”’.

While Evan has had hepatitis C for over 20 years, he says that he doesn’t have any plans to have treatment, because he doesn’t feel sick and he doesn’t drink alcohol. As he puts it: ‘I am not sick, yeah, I feel all right, and I don’t drink. The only thing I do, I don’t know whether it’s relevant or not, but the alcohol is probably relevant, but the only thing I do is I smoke cigarettes and I will use [heroin] twice a month’.

Over the years Evan has told a few regular doctors about his hepatitis C, and he says they haven’t directly encouraged him to have treatment. He thinks he informed his current doctor about his hepatitis C in an early appointment but they have ‘never discussed’ treatment: ‘[I] probably told him [about the hepatitis C] at the start [… and] I have had blood test[s] for things, because six years ago I got type 2 diabetes, but nothing has ever been said about [hepatitis C treatment …] I don’t think they have ever said, “Do a hep C test” or anything, yeah’.

While living with hepatitis C, Evan has primarily focussed on other health concerns, including some related to his mental health: ‘With my previous doctor […] it was always severe depression and personality disorder, but I think I would argue that one and just say, ‘We all have […some ups] and some downs’. But […] yeah, [the] mental illness thing has been there the whole time’.

*Services Australia Disability Support Pension.

Evan (M, 45, no treatment experience) describes spending around a week in hospital after being diagnosed with hepatitis C. He told his mother about the diagnosis and recalls that she didn’t seem worried about it.

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By memory, it was just in the emergency department, so I have gone in really sick, all yellow and admitted as being a drug user, and they have just said that, ‘You have got a hep C flare-up, you just have a hep C flare-up, and we are going to admit you and we are just going to do blood tests and watch your levels and will let you go when you are all right’. So, I ended up there maybe a day over a week or just shy of a week, so like six or eight days […] I told my mum […] Didn’t really seem to faze her, yeah, if I am honest.

Also focussing on injecting, Evan (M, 45, no treatment experience) describes being careful about using new equipment and making sure to keep it separate when injecting with other people.

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Well, everything has to be my own equipment, everything has to be brand new, like, I won’t, yeah, I won’t share a spoon, you know, [or have] two people drawing out together, or any of that sort of stuff. I won’t do anything like that, and [I] sort of got this from my mum, because I don’t know, maybe you learn […] Why do we put two sugars in coffee? Because we saw adults do it, so we think two sugars have to go in a coffee.

Evan (M, 45, no treatment experience) explains that while he is unsure whether he agrees with his mental health diagnoses, his mental health is the focus on his meetings with his doctor. This means that, for him, hepatitis C is one of a number of health issues needing attention.

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Yeah, mental health […] Yeah, it was always severe depression and personality disorder, but I think I would argue that one and just say, ‘We all have […some ups] and some downs’. But let’s say, it’s usually been about that […] I remember when I was 23 or 24 […] it seemed to be mostly what we were dealing with every time I’d go see him – apart from doing my prescribing, when it needed to be done.

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.