Ricky’s Story

Name: Ricky

Gender: Male

Age: 35

Who is Ricky?

Ricky lives with his aunty and her children in Sydney, Australia. He describes his ethnic background as ‘Aboriginal’: like both of his parents, Ricky was born in Australia. His primary source of income is a social security benefit for people living with a disability.* Ricky has hepatitis C currently, and is focussed on healthy eating, including ‘eat[ing] vegetables, plenty of red meat and drink[ing] plenty of water’, but he says he ‘would like to go on treatment’ in the future.

Brief Outline:

Ricky was diagnosed with hepatitis C a month before his interview in 2020. He remembers that he ‘freaked out’ when he first heard the news, but he spoke to a friend who helped calm him down. While he intends on getting treatment in the future, he is currently focussed on healthy eating and learning more about hepatitis C.

Ricky's Story:

A month before his interview in 2020, Ricky went to the doctor and ‘asked for hep C, hep B [and] HIV’ tests, which ‘came back positive for hep C’.

Reflecting on the diagnosis, he says that ‘hearing the words hepatitis C’ made him feel ‘ashamed’ and ‘very self-conscious’, and gave him ‘bad anxiety’. He worried about what others would think of his diagnosis and if ‘they’re going to judge’ him for it. For Ricky, these concerns were due to the association between hepatitis C and injecting drugs, and he explains that he’d ‘been injecting for a while’.

A friend advised him to ‘just relax’ about his diagnosis and said that it would be a ‘good idea’ to speak to his family about it. Ricky lives with his aunty and her children. He says he wasn’t sure how to approach the issue as his family ‘might flip out’, and was unsure about raising his diagnosis at all because while ‘you’ve got to be honest with people’, if you ‘tell them that you are hep C positive […it might] scare them away, because they don’t want to get the virus’.

Thinking about this issue, he recalls responding to news of friends or acquaintances having hepatitis C in a similar way: ‘When they used to tell me they were hep C positive, I would freak out. I guess it scared me, [so] I know what it’s like.’

He also describes feeling ‘worried’ about his hepatitis C because he shared a bathroom with his family: ‘When I go to the showers, I take my toiletry bag with me and I make sure that my toothbrush [is] in there and, if I’m using razors, [I make sure to] put all my razors back in there. I have another bag for all my dirty blades, because I use [them in the bathroom] with the nephews. So I [also…] make sure they are in the bin so no-one cuts themselves.’

At the moment, Ricky is focussed on diet and healthy eating, including ‘eat[ing] vegetables, plenty of red meat and drink[ing] plenty of water’, but he says he ‘would like to go on treatment’ as soon as he has learnt more about his diagnosis and hepatitis C more generally.

*Services Australia Disability Support Pension.

Thinking about his own responses to hepatitis C in the past, Ricky (M, 35, no treatment experience) says that he is worried that having the virus might scare other people away from him.

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[Speaking to other people about hep C] frightens me, because you’ve got to be honest with people [but] If you tell them that you are hep C positive [I worry that] it’s going to scare them away, I guess, because they don’t want to get the virus themselves. I remember before I started [injecting drugs] and when [people] used to tell me they were hep C positive, I would freak out, I guess. It scared me, [so] I know what it’s like […] Just freaked me out, hearing the words ‘hepatitis C’ … gave me really bad anxiety.

As he explains, Ricky (M, 35, no treatment experience) spoke to a friend almost immediately after receiving his diagnosis. His friend suggested that he also speak with his aunt, whom he lives with, but he was worried that she wouldn’t respond well.

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I told my mate [about the diagnosis] and he said, ‘Just relax, but maybe it’s a good idea to tell your aunty.’ […But] I’m just worried she might flip out […] She’s been positive with me, like, you know, I’ve […] gone [off track] a few times, but I’m back on track. She’s picked me up so many times […] I’m a bit worried about my aunty, and when I go to the showers and that, I take my toiletry bag with me and I make sure that my toothbrush is in there, and if I’m using razors, put all my razors back in there or I have another bag for all my dirty blades, because I use them [in the same bathroom that my] nephews [use]. So I just […] put it in the bag [or] make sure they are in the bin so no-one cuts themselves.

While he hasn’t had treatment himself, Ricky (M, 35, no treatment experience) emphasises the importance of positivity when thinking about hepatitis C treatment.

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Stay strong, I guess, and stay positive, and don’t let things get to you […] Stay focussed and listen to the doctor or to the nurse or whoever […] and listen to all the instructions, and don’t read into [your diagnosis] too much, or don’t overthink it, and don’t think negative. Be positive about it, I guess.

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.