Rusty’s Story

Name: Rusty

Gender: Male

Age: 70

Who is Rusty?

Rusty lives alone in supported accommodation in a regional town in New South Wales, Australia. He describes his ethnic background as ‘Australian’: like both of his parents, Rusty was born in Australia. His primary source of income is a social security benefit for people living with a disability.* Rusty thinks he has had hepatitis C twice (the first time, he was diagnosed with non-A, non-B hepatitis) and spontaneously cleared the virus both times.

Brief Outline:

Rusty was diagnosed with non-A, non-B hepatitis many years ago. After a backpacking trip when he’d occasionally injected drugs, he began feeling unwell. He went to the local hospital and was diagnosed at the time with non-A, non-B hepatitis. He decided to rest at home and eventually recovered. Although he took precautions to minimise transmission risks while injecting afterwards, in his mid-fifties he thought he had hepatitis C again. He decided to try the new treatment but was informed that he didn’t have active hepatitis C. Given his experience, he thinks he cleared the hepatitis C again spontaneously. Rusty says that if he got hepatitis C again, he would try the new treatment.

Rusty's Story:

Rusty was diagnosed with non-A, non-B hepatitis many years before receiving a hepatitis C diagnosis. Following a backpacking trip in South-East Asia, when he’d occasionally injected drugs, he started feeling unwell. He recalls that after returning to Australia he started working as a fruit-picker in regional New South Wales. During this time he started to feel ‘completely nauseous’, ‘had no energy’ and ‘found it very hard to get up and get out of bed and do anything’. As he says, ‘[I] just felt like crap’. He went to the local hospital and was diagnosed with non-A, non-B hepatitis.

Although staff encouraged Rusty to have treatment, he ‘didn’t want to go into the hospital’ and decided just to rest at home. As he recounts, ‘I went back to where I was staying, which was a shearing shed, and spent the next three to four weeks on my back […] and it slowly improved. And for some strange reason I got rid of it. It’s just the way my system works, and I don’t know why. It just went, and I didn’t have it any more’. A doctor told him spontaneous clearance was ‘very rare […] but it does happen’. After testing for the presence of the virus, the doctor told him, ‘You must be one of those people’.

Afterwards Rusty took precautions to minimise transmission risks when he was injecting, but in the early 2000s he thought he may have hepatitis C again. He says, ‘I was very particular about sharing needles, but you only have to make one mistake, and […] I shared a needle with somebody because I didn’t have one at the time’. He recalls ringing that person up ‘because I was feeling really crook’, and they told him they had hepatitis C. He didn’t seek a formal diagnosis, but Rusty says he thought ‘here we go, I’ve picked up hep C again’. After seeing friends who ‘got really sick’ and ‘looked like death warmed up’ when going through interferon-based treatment, he decided to wait and see whether he would feel better. He stayed at home with his partner, who looked after him while he felt unwell.

Rusty explains that he stopped experiencing symptoms, and in 2019 he decided to have treatment after hearing about the new medications. He was asked to have another blood test before starting, and he recalls being told that he didn’t ‘have to worry about it’. As he puts it, the health professionals delivering the news ‘didn’t go into any detail’ about his results, and Rusty ‘wasn’t concerned to go into any detail’ because he was ‘just happy that [he] didn’t have it’. He frequently gets blood-borne virus and liver health tests now and currently does not have hepatitis C.

Rusty says that if he got hepatitis C again, he would try the new treatments, as he has read they’re ‘successful with no bad side effects’. With the new treatments available, he says he won’t beat [him]self up over it’ if he gets hepatitis C again. Overall, he thinks the new treatments are ‘pretty good’ and that ‘we are very lucky in this country that we have access to that sort of thing’.

*Services Australia Disability Support Pension.

With blood tests related to diabetes a routine part of Rusty’s life (M, 70, repeat diagnoses, experience with spontaneous clearance and no treatment experience), he sometimes asks doctors to check for hepatitis C as well given that he injects drugs.

When I go and have my blood tests done for my diabetes, and I ask them to look out to see if I’ve got hep C, but I’ve never … well, maybe once or twice I’ve gone to a doctor and said, ‘I’ve had hep C, can you just check that out alone’. Maybe a couple of times, but not a great amount of times, you know, because I’ve never felt sick enough. I’ve always thought, you know, I know people who have had to have their livers taken out and new livers put in, they were so bad from hep C, you know, and […] I’m just lucky [not to need that]. I’m just lucky like that.

Rusty (M, 70, repeat diagnoses, experience with spontaneous clearance and no treatment experience) discusses how his partner was very upset when he told her that he had hepatitis C in the early 2000s, and she suggested he expected her to care for him.

[When I told my partner I had hepatitis C] it impacted [her] and she went off her head, you know. She wasn’t a drug user or anything, you know. She just went off her head and thought I was completely stupid and that I should know enough about it not to get it. She went off her brain [saying], ‘What do you want me to do? Do you want me to look after you, now that you’ve gone and got hep C, you want me to look after you?’ She did [look after me] anyway, but she wasn’t very happy about it.

Focussing on the importance of raising awareness about hepatitis C treatment, Rusty (M, 70, repeat diagnoses, experience with spontaneous clearance and no treatment experience) offers advice to health services on the best places to distribute information.

There’s always information, there’s always education. Just get as much education and information out there as you can, and [have information in] places like methadone clinics and injecting centres and needle exchanges. Just hand out information to people to read, you know, and, you know […] It’s up to the individual to do something about it, you know what I mean, you can just supply information for them, even if only helps one in 10 or one in 100, well, that’s good, you know […] All you can do is supply information.

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.