Rod’s Story

Name: Rod

Gender: Male

Age: 41

Who is Rod?

Rod is currently living in a residential alcohol and other drug treatment service in Sydney, Australia, and has one young child. He describes his ethnic background as ‘English’: like both his parents, Rod was born in the United Kingdom. His primary source of income is a social security benefit for people living with a disability.* Rod says that being cured of hepatitis C with the new treatment has contributed to a sense of ‘wellbeing and self-worth’.

Brief Outline:

Rod was first diagnosed with hepatitis C in the early 2000s. The doctor who delivered the news didn’t know much about hepatitis C and gave him unclear information. A couple of years later, he had another test and was advised that he should wait until new medications became available before trying treatment. About 15 years later, while completing treatment related to his heroin consumption, a nurse encouraged him to have the new treatment. He followed her advice and found the treatment was ‘really easy’, and was cured of hepatitis C. More recently, Rod acquired hepatitis C again while in prison. He then had another course of the new treatment. As he explains, being cured of hepatitis C is about caring for his body and moving into another stage of life.

Rod's Story:

The first time Rod was diagnosed with hepatitis C was in the early 2000s. He remembers that his girlfriend at the time had been diagnosed with hepatitis C, so he decided to have a test too. According to Rod, the GP delivering his results didn’t give him clear information: ‘I don’t think the doctor knew too much about it […] like, the blood tests came back with hep C, but […] he told me, like, I had something in my blood that was fighting against it […] I didn’t understand anything, I just thought I must have some … it must be my immune system, so I can’t catch it.’ He left unsure whether he actually had hepatitis C.

Rod got tested for hepatitis C again a ‘couple of years later’ and was informed that he definitely had it. He was advised not to have the interferon-based treatment that was available at the time, because he was ‘healthy’ and it seemed ‘better treatment [would] come out in the future’. Regarding his diagnosis, Rod says he ‘didn’t really care’, because he was told that there would be ‘no side effects until [he] got old’ and he thought he was ‘going to die young’ anyway.

In about 2017 or 2018, Rod was completing treatment related to his heroin consumption and a nurse encouraged him to have the new hepatitis C treatment. As he explains, he followed her advice and found treatment ‘really easy’ – there were no side effects and that he ‘didn’t feel anything’ during it. The treatment was successful.

A couple of years later, Rod was serving a prison sentence, and had several issues on his mind at the time. As he explains, ‘I had […] a big jail sentence hanging over my head and yeah, like, I didn’t really, like, care [about hep C].’ During his time in prison, he knew he might be at risk of acquiring hepatitis C again: ‘I was still using in the yard anyway, so I thought maybe I was just going to reinfect myself.’

Rod recalls he started to feel sick and eventually went to see the medical staff. He says a week after seeing medical staff he received a phone call from a specialist in Sydney who informed him that he was ‘probably’ managing the effects of ‘acute hep C’ and that they ‘want[ed] to put [him] back on the treatment straight away’. The second round of treatment was also successful. While he explains that the experience of treatment was ‘good’, he says he didn’t want anyone else in prison to know he was having it because they would then guess he injected drugs.

Finishing hepatitis C treatment was an achievement for Rod. Since his most recent round of treatment he has ‘started feeling really good’. As he explains, for him, treatment was about caring for himself and moving into another stage of his life: ‘It gives me a sense of, like, wellbeing and self-worth, like, I’m doing stuff that’s estimable. I’m letting go of that life […and] I’m actually caring for myself and my body, and trying to tell myself that I’m worth, like, caring about.’

*Services Australia Disability Support Pension.

Rod (M, 41, repeat diagnoses, experience with new treatment [DAAs]) remembers that his first diagnosing doctor didn’t know much about hepatitis C. Some years later, he had another test and was advised to postpone treatment until the new medications were available.

Yeah, I got diagnosed with hep C, like, about 20 years ago, and I don’t think the doctor knew too much about it. He said that […] the blood tests came back with hep C, but [that it was] inactive, and he told me, like, I had something in my blood that was fighting against it. So I just thought that I couldn’t catch it, and then I got tested again a couple of years later and they told me that I had caught it now, but not to do anything about it because I was healthy and that better treatment will come out in the future […] Then I’ve had heaps of test over the years, like hep C. My FibroScans were pretty healthy, and they just kept telling me to wait because there will be better treatments sooner or later.

Rod (M, 41, repeat diagnoses, experience with new treatment [DAAs]) recalls that at one time he didn’t care about acquiring hepatitis C again, as he had other more urgent concerns. He clarifies that he since leaving prison he has been careful to reduce his risk of acquiring it again. (Note: strong language)

Like, I was really happy. I was clean [abstinent] in recovery and I was getting really healthy again, and then I relapsed and went back to jail. I didn’t really give a fuck [about getting hepatitis C]. I had immigration hanging over my head, like, a big jail sentence hanging over my head and, yeah, like, I didn’t really, like, care. But then when I got really sick [with hepatitis C], I did [care…] When I got released, like, I was mindful [about injecting with other people], like, I only used my own equipment, and now that I’m clean again, I am really happy.

Rod (M, 41, repeat diagnoses, experience with new treatment [DAAs]) talks about how a doctor encouraged him to begin treatment.

I had the nurses explaining to me, like, how easy it was […to have] treatment and I went to the [hospital liver clinic] and there was a doctor … can’t think of her last name, really nice lady […] Yeah, she explained everything to me and said it was a good time for me to do it now and, yeah, [I] just stuck with her and got that 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.