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’.
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 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.
Reflecting on how his treatment experience has changed his outlook on life, Steve (M, 49, experience with new treatment [DAAs]) says it meant that he would have more time to spend with his children in the future.
[Curing hep C made me feel] a lot more positive within [my]self, you know, and [that I] might be able to get a few more years and spend them with the kids and stuff like that […] Once upon a time you were stuck with it, like, you know, there was no cure for it, and now there is [a cure], so that’s really good. Yeah, it’s really uplifting to me that you can […be cured of] this now, you know, and you don’t have to worry about infecting your loved ones, you know, relatives or friends. So, it’s a good thing.
According to Steve (M, 49, experience with new treatment [DAAs]) he was given minimal information about the new treatment.
No, no, I wasn’t told hardly anything. I was just handed a bottle and said, ‘Here, take this once a day’. […] I instantly linked it to giving me an extra few years of quality life you know […] I was sort of expecting to maybe feel a bit off like after I started taking it, but no, I didn’t even notice it really.
Given his concerns about stigma, Steve (M, 47, experience with new treatment [DAAs]) says that he was too embarrassed to speak with his family about hepatitis C. Like other people on this website, he was worried that people would connect hepatitis C to injecting drugs.
No, [I didn’t speak with other people about hep C because I was] too embarrassed. No, [I didn’t tell my family either], I just made sure I had my shaving equipment in the room with me and toothbrush and so forth, you know. It goes back to my using [drugs] really. As soon as you tell someone you had hep C, [even] if they don’t know anything about it, they know that you are a user, you know, there are not too many ways you can get it, it’s blood-to-blood contact.