Steve’s Story

Name: Steve

Gender: Male

Age: 49

Who is Steve?

Steve is currently living in a residential alcohol and other drug treatment service in Sydney, Australia, and has three adult children. 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.* He says that being cured of hepatitis C with the new treatment has made him feel ‘a lot better spiritually’.

Brief Outline:

Steve was diagnosed with hepatitis C in about 2005. He was ‘devastated’ by the news and especially concerned that it would impact on the health of his family. He was offered the older, interferon-based treatment but decided against it in case the side effects affected his ability to work. In 2017, while he was serving a prison sentence, welfare staff encouraged him to have the new treatment, and he decided to take the ‘opportunity’. He found the treatment ‘pretty easy’ and ‘didn’t even notice it’. His treatment was successful, and since then he says that he has more ‘pride’ in himself and ‘more energy’.

Steve's Story:

In 1996 Steve found out that he’d acquired hepatitis C. It was a period in which he was regularly injecting drugs. As he explains, the people who were selling him heroin at the time would store it in a balloon in their mouths and he would then break open the balloon to take the heroin. Because he hadn’t shared injecting equipment at the time, he spoke to a GP about how he could have acquired hepatitis C, and concluded it may have been via these balloons: ‘I was actually exposing myself to the hep C virus by doing that, and I didn’t realise that until the doctor actually told me this, and that’s how I contracted hep C.’

Steve recalls that he had a blood test at his local GP to test for hepatitis C, HIV and sexually transmissible infections. He remembers feeling ‘devastated’ when he found out he had hepatitis C, thinking he ‘had been handed a death sentence’. After the diagnosis, he ‘started research[ing] it more and finding out exactly what [he] was facing’, because, he explains, he was concerned about the risk to his family: ‘I started with my GP and then I got online and […], yeah, found out a bit more about it, how it was transmitted, like, how you could pass it on. I had three children, I was worried about passing it on to them, worried about passing it on to my wife.’

Around this time, he was offered the available interferon-based treatment but decided against having it because of the negative impact its side effects could have had on his daily life: ‘I was told that it [the treatment] makes you really sick […] I didn’t want anything to do with it. Yeah, I wasn’t up for being sick, I had to go to work and still function from day to day.’

In 2017 Steve was serving a prison sentence and, as he recalls, he had previously found out that he had liver scarring from his hepatitis C. As he explains, he decided to take the ‘opportunity’ to have the new treatment while in prison after a staff member encouraged him and relieved his worries about negative side effects: ‘One of the welfare ladies in the prison system […] encouraged me to do it, but I had concerns, like, was I going to get sick like the interferon and all sort of stuff, and they laid my fears to rest saying, “No, you are not going to get sick from this, you won’t even sort of notice it, and you will feel a lot better after it”, which I did.’

Steve recounts that he had no difficulty remembering to take the medication while he was in prison: ‘It was pretty easy to remember to take it, like, you know, [I] just had the bottle sit on my bench in my cell and so I would get up in the morning, have a cup of coffee, take the medication at the same time and off you go for the day.’ He says the ‘nursing staff were really good’ and checked in on him every week while he was having treatment. He had no side effects and ‘tolerated’ the treatment very well. Overall, he says, he ‘didn’t even notice it, really’.

Once he left prison, he went to his GP to have a blood test to find out the results of the treatment. As he puts it, ‘[the test] came back that I had […been cured]. It was good, it was fantastic news, because I already had it by that stage, I had it for 20-something years, and I knew the damage that I had done to my liver, you know, was substantial, and it was really good [news].’

For Steve, being cured of hepatitis C was an important experience and it has had a lasting effect on his sense of self and quality of life: ‘I feel a lot better spiritually, like, you know with self-esteem, the pride in myself.’ He also explains he now has ‘more energy’. In the past he sometimes ‘struggled even to get out of bed’, but a couple of months after treatment he began to feel ‘better’ in himself.

*Services Australia Disability Support Pension.

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.