Dave’s Story

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.