Danny’s Story

Name: Danny

Gender: Male

Age: 32

Who is Danny?

Danny lives with his partner and two young foster children in Sydney, Australia. He describes his ethnic background as ‘Aboriginal’: like both his parents, Danny was born in Australia. His primary source of income is a social security benefit for primary carers of young children.* While Danny initially filled his treatment prescription when he was diagnosed with hepatitis C, he learnt that he had spontaneously cleared the virus before starting the treatment.

Brief Outline:

During a period when Danny was partying and consuming drugs regularly, he started to feel unwell and received a hepatitis C diagnosis. He sought treatment immediately but decided to have another test before starting it. This second test showed that he had cleared the hepatitis C without treatment. While he is still ‘really confused about the situation’, he says he felt ‘amazing’ on receiving the news. Since then he has had regular hepatitis C tests, ‘just to make sure’ he doesn’t get it again.

Danny's Story:

Danny remembers being diagnosed with hepatitis C ‘about four years ago’ in 2016 when he was 28 years old. At the time he was ‘living that party, drug lifestyle’ and started to feel unwell, ‘a bit sick’. He recalls that during this period of his life he got regular blood tests and told doctors that he was ‘an injector, so can you check for everything, including hep C?’ As he explains, he wanted to be ‘sure in [his] head’ that he didn’t have hepatitis C or other blood-borne viruses.

Quite soon after having tests that showed he didn’t have any blood-borne viruses, he started to feel unwell and decided to visit the doctor again. The doctor first questioned why he neeed another test, given that he was ‘just here a week ago’, so Danny explained that he had recently reused a syringe and was worried he had acquired a blood-borne virus.

As Danny told the doctor, ‘You’re going to hate me when I tell you this, but I injected with the same syringe more than two times’. As he recalls, the doctor ‘kind of growled at [him] and said it was wrong, and all that sort of stuff’. Danny remembers that he ‘blamed [himself] completely’ for the potential diagnosis.

Danny recalls feeling ‘a bit upset’ after finding out he had acquired hepatitis C, but says he ‘didn’t react badly’ because he knew it could be cured. He describes his thinking at the time: ‘It […] doesn’t matter. I can deal with this. The medication will clear it, it’ll be all right’. While he was confident that treatment would resolve the problem, he also remembers that he ‘didn’t want to touch anybody’ while he had hepatitis C.

He also recalls that during this time he spoke to his cousin about the diagnosis. He remembers her being very upset with him at first and saying the diagnosis was because he had been ‘doing the wrong thing’, but she also comforted him by saying, ‘It’s going to be all right […] The medication will help you [… and] you’ll be healthy again’.

While Danny filled his treatment prescription immediately after his diagnosis, he didn’t start taking the medication straight away. The doctor had explained to him that it’s possible for the body to clear hepatitis C without treatment, so Danny decided to wait a little while and go back for a further test. The results of this test suggested that he had cleared the hepatitis C without treatment. As he explains, he is still ‘really confused about the situation’, but says he felt ‘amazing’ on receiving this news and asked himself, ‘How does this happen?’

After this experience, Danny now gets tested about monthly ‘just to make sure’ he has not acquired hepatitis C again.

*Services Australia Parenting Payment.

Danny (M, 32, no treatment experience, experience with spontaneous clearance) describes having a ‘feeling inside’ that he should have a hepatitis C test after injecting drugs in prison.

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I just had this feeling inside, and so I went to my clinic. I said, you know, ‘This is what’s happened, and I think that I may have hepatitis C. Can you check for me?’ And my doctor said, ‘Yes, I’ll check for you’. [He] called me back a couple of days later and said I needed to go in and speak to him, and then he told me that, yes, I was hep C positive […] I don’t know how I knew, but I just could feel that my body wasn’t right. And, yeah, he told me that I was positive for hepatitis [C].

Danny (M, 32, no treatment experience, experience with spontaneous clearance) recalls isolating at home after receiving his diagnosis.

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I put myself in a bubble where I stayed home and didn’t communicate with anybody from the outside world. When I went back for my second test, when I thought I was hep C positive, I went […] and got my heroin or whatever, and I came home and I used by myself. At that stage, I bought a whole bunch of syringes so that I would not have that problem [of running out of equipment] again. But like, yeah, I just, I knew that I was going to be sick from it.

While Danny (M, 32, no treatment experience, experience with spontaneous clearance) hasn’t had treatment, he explains that he considered it partly because he felt ‘embarrassed’ about having hepatitis C and HIV.

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I just felt like, ‘I need to get rid of this before anybody knows that I am not a clean user all the time’. You know, I like … I just, I felt embarrassed for having it, and so I wanted to get rid of it as soon as possible […] I felt very low and very, you know, not good. I just wanted to get rid of it straightaway, because I was very sexually active, right up until this happened, and I wanted to get back to that.

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.