Robbie’s Story

Name: Robbie

Gender: Male

Age: 40

Who is Robbie?

Robbie lives in a share house in Melbourne, Australia, with his partner and a flatmate. He describes his ethnic background as ‘Australian’: he was born in Australia while one of his parents was born in the United Kingdom. His primary source of income is a social security benefit for people living with a disability.* Robbie says that his life didn’t change much after being cured of hepatitis C in 2016, but it was ‘worth doing’.

Brief Outline:

After experiencing serious health problems in the early 1990s, Robbie decided to get tested for hepatitis C and found out that he was positive. Some years later, he started treatment while in prison. At the time treatment was based on interferon. He recalls having minimal side effects aside from feeling a bit ‘grumpy’. The six-month course of medication wasn’t successful, but many years later, around 2016, he had the new treatment, which was successful.

Robbie's Story:

Robbie was diagnosed with hepatitis C in the early 1990s after he requested a test from his doctor. He remembers feeling ‘pretty sick at the time […] just throwing up, crook stomach all the time, sleepy’. He was living with his grandmother at the time, and she encouraged him to ‘get onto it and get to the doctor’.

Unlike many people, Robbie found the experience of interferon-based treatment ‘wasn’t too bad’ and he had minimal side effects. He just felt, he says, a ‘bit grumpy’. After six months of treatment, however, he was advised that it hadn’t been successful. As Robbie puts it, ‘Yeah, I was spewing that it didn’t work. The doctor didn’t really explain a great deal, just that it didn’t work and, yeah, [that I would] have to follow it up [later]’.

Around 2016, when Robbie was in his late thirties, his methadone prescriber, based at a community health centre, told him about the new treatment. The doctor explained that, ‘There was a new treatment out, and it worked for others pretty good, and if you want to try, give it a go’. Robbie decided to try the new treatment and did so with his friend who was also his flatmate. As he recalls, while they continued the treatment for the prescribed three months, tests showed they’d ‘both got rid of it within a month’.

According to Robbie, while hepatitis C treatment was ‘worth doing’ and he’s ‘glad that [he] got rid of it’, things ‘just basically stayed the same and [treatment] hasn’t really changed [his] life’. He continues to get regular scans to monitor his liver health.

*Services Australia Disability Support Pension.

Robbie (M, 54, experience with both new [DAA] and old [interferon-based] treatments) explains that he first requested a test because he had been feeling sick.

At least 20 years ago […I] went to the doctor […] and had the test done and found out that I had hep C then […] It was a long time ago […] I think I asked for it to be done because I was pretty sick at the time […] Just throwing up, crook stomach all the time, yeah, sleepy […I] had symptoms […I told] my grandmother [about the diagnosis], because I was living with my grandmother at the time […] She was all right, just yeah, [she said,] ‘Get onto it and get to the doctor’.

Given his disappointing experience with interferon-based treatment, Robbie (M, 54, experience with both new [DAA] and old [interferon-based] treatments) says that he recommends the new treatment to other people living with hepatitis C.

Yeah, I was spewing [disappointed] that [the interferon] didn’t work. The doctor didn’t really explain a great deal, just that it didn’t work and, yeah, that I have to follow it up [again in the future]. So then I heard of this new treatment many years later, just the tablets, and went to the doctor and saw him about it, and he put me on the program […] I tell others about the program, if I hear they have hep C or anything like that, to do the program and see how they go, because it, yeah, worked for me […I tell them that] all this is is a matter of taking a tablet.

Robbie (M, 54, experience with both new [DAA] and old [interferon-based] treatments) had the new treatment at the same time as his friend.

[My friend and I] heard about this new program, the tablets, and then the friend I’m staying with, we both got on it and both got rid of it within [the first] month […We heard about it] from the doctor […who said] that there was a new treatment out and it worked for others pretty good, and if you want to try, give it a go, yeah. So we did and it worked […] Yeah, it went for three months and, yeah, I stayed on the program for the whole three months, even though [the hep C] was gone within the first month.

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.