Who is Dave?
Dave lives alone in Sydney, Australia, and has a long history of involvement in advocacy and peer-based work with various alcohol and other drug and hepatitis organisations. He describes his ethnic background as ‘Australian’: like both of his parents, Dave was born in Australia. His primary source of income is a social security benefit for people living with a disability.* As he explains, he was ‘very, very happy’ to be cured of hepatitis C with the new treatment.
Dave found out he had hepatitis C after receiving a blood donation in the mid-1990s. He has had both the new treatment and the older, interferon-based treatment. After two unsuccessful experiences with the older treatment, he was cured of it in 2012 with the new treatment. Dave was ‘ecstatic’ with the treatment outcome and describes it as life-changing.
However, he recalls that soon after he began hearing about ‘hepatitis C’ and realised the virus could cause serious health problems. He remembers, ‘I started reading stuff around this new thing they were calling hepatitis C. I quickly figured out that that’s what I had. I just basically did some research and found out that for some people it can be lethal, and it is treatable, so I decided to go onto treatment when I felt quite stabilised in my life’.
In 2006 he decided to participate in a trial of a new treatment at the time, the interferon-based treatment, because he ‘was looking forward to trying to [cure] it’, despite knowing that the success rates were limited. The treatment ran for 48 weeks and, as he recalls, he was ‘double-dosed interferon for the first 12 weeks and then maintained [on] the ribavirin, which was, I think, six tablets a day: three in the morning and three at night’. He remembers it being a complex regimen, dependent on body weight and the careful timing of medication doses.
Thinking back, Dave recalls experiencing ‘a lot of side effects’. As he puts it, ‘It’s like giving yourself an injection of the flu every Saturday night, and it only lasts for 24 hours, but it was really debilitating. It was a lot of energy loss, a lot of brain fog. The ribavirin […] gave me a short temper and a really poor concentration span. I couldn’t sort of copy words off the blackboard or the whiteboard at uni. I had to keep looking up any words that had more than four or five letters, and I couldn’t remember the run of letters. It just made it very difficult to study’. He was disappointed to find out that the treatment wasn’t successful, but he says he ‘did get some benefits’ from the first round of treatment. His viral load was lowered and his liver function was ‘quite good’.
About two years later, Dave participated in a second trial for interferon-based treatment, which, again, lasted 48 weeks. He remembers having severe side effects again and describes feeling like he ‘lost the plot’. As he explains, ‘I got massively depressed, and I was put on antidepressants at the time, as there were suicidal ideations’. Unfortunately, this round of the old treatment didn’t cure him either. He says his specialist apologised to him: ‘I remember [my physician] saying, “Dave, I am sorry, you didn’t quite [cure] it. There have been benefits, but you have still got hepatitis C in your system”’. Dave remembers his ‘parting comment’ to his doctor was: ‘When you get a magic pill, ring me up’.
Four years later, around 2012, Dave received a phone call from his specialist, who said, ‘We have the magic pill!’ He started a 12-week course of the new treatment, and he recalls he had ‘no side effects’. After six weeks of treatment, Dave says he was told, ‘It looks good, it looks like you have [been cured]’. He had tests six months later to confirm the cure, and he recalls feeling ‘ecstatic’ when the cure was confirmed. As he puts it, ‘I did not sort of jump up and down and click my heels and show emotions in the hospital, but I was very, very happy. I was cured of a disease that could have killed me’. Dave says he was lucky to have a doctor with a ‘really good bedside manner’, who explained things clearly, as well as having the same ‘caring’ treatment nurse for all three treatments.
Being cured of hepatitis C led Dave to decide that a different kind of life might be possible for him. Through his experiences of hepatitis C, injecting drug use, advocacy and campaigning, he has met peers and politicians, doctors and writers. As Dave explains, these experiences mean ‘[I’ve] made a lot of connections with people who I’d never thought would be in my life’.
*Services Australia Disability Support Pension.
*Dave does not remember that exact date he began the new treatment. While the treatment became most widely available in Australia in 2016, it is likely that Dave started treatment through a clinical trial or a compassionate access scheme.
According to Dave (M, 54, experience with both new [DAA] and old [interferon-based] treatments), the new treatment was much simpler than the old treatment. He also says he was more confident when he began the new treatment, due to its high success rates.
I thought, okay, you have had a crack at this twice on the interferon and it didn’t work. But they have come out with this new medication that’s only 12 weeks long, it’s only a tablet, it’s not an injection into your belly any more, the side effects don’t look anywhere as near as bad as what you were previously used to, and the success rate, the rate of sustained [virological] response, was much higher than interferon. It was in the high 90s and the interferon was, like, 70 to 75 [percent], you know, and I had spoken to people who had taken the Harvoni [medication] and they said, ‘Oh, Dave, it’s great, it’s just, you know, you got to remember to take your meds, that’s all you got to do’
Dave (M, 65, experience with both new [DAA] and old [interferon-based] treatments) describes concerns shared by several participants when he explains that he has other health conditions still needing treatment.
I do have an old back injury, but that’s not going to change. It’s being treated, I am living with it. I am doing physio for it, so yes, I need a hip replacement, but other than that, I am quite healthy. My dental health, my teeth are looked after quite well. I regularly see the optometrist every two years and get an update for my glasses. I went through physio for my back and stuff, and I exercise quite regular. I do my exercises reasonably regularly […] I look after my health. I don’t drink a lot. I am not using IV drugs. I will have a joint at a party [but] I won’t go looking for it. I am in the process of giving up smoking again.
Dave (M, 65, experience with both new [DAA] and old [interferon-based] treatments) wants to raise awareness of the new treatment and regularly encourages others to have it.
I am very much involved in consumer advocacy for people who inject illicit drugs, and hepatitis C is part of that. I firmly believe that we can actually cure hepatitis C and rid ourselves of it in Australia, and I just want to encourage more and more people to take that treatment, because a lot of them will still think the treatment is from the old way, you know, from the dark ages […The new treatment] works [and hep C is] curable. I would encourage people to do it. As I said before, we can rid Australia of hepatitis C […] It’s so easy nowadays […] I want to get more people aware that this new treatment is available, and it works and not to fear it. Try it, do it, because it will be the best thing you’ve done for yourself.
Dave (M, 65, experience with both new [DAA] and old [interferon-based] treatments) says that the new treatment was ‘quite easy’ to incorporate into everyday life, and he explains that he encourages others to have it too.
It was just a bottle of tablets that was sitting next to my vitamins, which I had every morning. I took them at seven [pm], every night I took them at seven, so quite easy […] I have friends who still have hepatitis C and I try and encourage them to get treatment […] Good hep C treatment [should be] available to everybody whether they are using drugs or not […] It should be freely available to everybody.
Since completing treatment, Dave’s (M, 65, experience with both new [DAA] and old [interferon-based] treatments) life has changed in several significant ways. He speaks about getting involved in a campaign promoting hepatitis C treatment, but also says that he continues to face other health issues.
I have made a lot of connections with people who I’d never thought would be in my life, and a lot of that has come through working [on a campaign to increase treatment uptake]. I am meeting politicians […] I am talking to people about sort of expanding drug treatment facilities. I am a team leader of a group of people with lived experience who are part of a campaign. I am also co-editor of […] a newsletter [for a service…] I also edit a […] Facebook page [on treatment]. None of that would happen if I hadn’t stopped using [drugs], and none of that would have happened if I hadn’t sort of [been] cured [of] hepatitis C […] Yeah, getting rid of hep C and putting down the IV drug use has greatly changed my life […] I realised how old I am, you know. There is not another 50 or 60 years in front of me. I am sort of going to have to accept that, you know, and my body is sort of breaking down. I am going to need another hip replacement in a few years’ time, on the other hip. I have a back injury […] I crushed a lot of vertebrae in my back, but I can work around that sort of stuff, you know […] My life has changed completely.