Anthony’s Story

Name: Anthony

Gender: Male

Age: 36

Who is Anthony?

Anthony lives alone in temporary accommodation in Sydney, Australia. He describes his ethnic background as ‘Australian Irish’: he was born in Australia while one of his parents was born in Ireland. His primary source of income is a social security benefit for people who are unemployed.* He has never had hepatitis C and his last related test was over a year ago.

Brief Outline:

Anthony learnt about hepatitis C in 2006, just before he started injecting drugs, because his girlfriend had acquired it. While he recognises that people who inject drugs and those with hepatitis C encounter stigma, he says he doesn’t ‘worry about people’s opinions’. For him, acquiring hepatitis C would be ‘upset[ting]’, but he would ‘work it out’ and have treatment to ‘get rid of it’.

(Note: strong language)

Anthony's Story:

Anthony first learnt about hepatitis C in 2006, just before he started injecting drugs. He explains that his girlfriend had hepatitis C, and this is how he first heard about it. He recalls feeling worried about his girlfriend’s health after finding out that she had hepatitis C. He says that given the new more effective treatment wasn’t available at the time, hepatitis C was something many people thought of as something you’ve ‘got for life’ and that it means ‘you’re […] sick’. He says he also worried that people would ‘look down’ on her for having it.

Discussing the issue of stigma, Anthony says that it’s less of a problem since the new treatment has become available. He feels that in the past people with hepatitis C were often seen as ‘dirty’ by other people. He says that attitudes have begun to change because it’s now ‘easier to get rid of’ it. According to Anthony, he isn’t worried about stigma personally, because he doesn’t pay attention to ‘what people think’ of him. As he puts it: ‘Well, if people think you’ve got hep C, then, like, they might put you down or [want you to] feel embarrassed, but I don’t worry about things like that. I don’t worry about people’s opinions, you know what I mean, like, people’s opinions don’t mean shit to me’.

While stigma doesn’t worry him a great deal, Anthony has experienced discrimination related to his injecting drug consumption. When healthcare professionals speak to him, he says that he can ‘pick up’ on ‘whether they are looking down on [him]’. He finds that ‘even though they are there to help’, ‘they can look down on [him]’. He explains when this happens, he ‘won’t see them again’.

After these kinds of negative experiences, Anthony is glad to have a regular GP he likes. Anthony has been seeing the GP for about 18 months and says he is good because he ‘listens’ and ‘understands what [he is] saying’.

Anthony hasn’t had a hepatitis C test for over a year and, reflecting on the possibility of acquiring the virus, he explains that if it were to happen, he would be unhappy but would seek treatment: ‘I’d be upset with myself for getting it. Once you’ve got it, you’ve got to act on it and go forward, you know, like, to get rid of it […] If I’ve got it, I’ll deal with, I’ll work it out and go forward with it’.

*Services Australia JobSeeker Payment.

Hepatitis C tests are a routine part of Anthony’s (M, 36, no treatment experience) healthcare. He says that he usually asks for them and that the virus doesn’t worry him.

[I get tested] now and again. I’ve been tested probably maybe about eight times […] That’s for everything, so once I get tested, I ask them to test for everything, you know […] Most of the time I ask to get tested […] I don’t worry about [hep C] … I [would] only worry about it if I got it and then [I’d decide what to do…] go[ing] forward. I don’t worry about ifs and buts […] Yeah, I’ve had the finger prick [test] where they blood-test you […] That was all right, but I think the other one is better because the blood testing is a bit annoying, because they had to do it so many times you know […] Because my blood wouldn’t come out when they were testing, you know. Like, they’d prick me, but my blood wasn’t coming out.

Anthony (M, 36, no treatment experience) advises people who share injecting equipment to regularly have hepatitis C tests.

Just get yourselves tested regularly. Like, if you are going to be sharing injecting equipment, then get yourself tested regularly, and then you go from there, you know. If you’ve got it, you’ve got it, and you find the […] course of drugs you need to get rid of it, you know […] It’s only a blood test, you know.

Anthony (M, 36, no treatment experience) advises people living with hepatitis C to focus on their own health and disregard other people’s negative opinions. (Note: strong language)

Just, like, don’t worry about what people think, and worry about yourself and getting […cured]. Worry about yourself. Don’t worry about what people think [or] about stigmas and all that sort of thing, you know. If people’s opinion … like, I’ll be honest, everyone’s got an opinion and opinions are like arseholes, everyone’s got one, you know.

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.