Colin’s Story
Name: Colin
Gender: Male
Age: 44
Who is Colin?
Colin lives by himself in regional Victoria, Australia and works in a mental health support service. His partner lives nearby and he sees her regularly. He describes his ethnic background as ‘Australian’: he was born in Australia while one of his parents was born in Wales. He says that after completing hepatitis C treatment he felt ‘spick and span’ and ‘sparkling’.
Brief Outline:
Colin is a mental health support worker. He was diagnosed with hepatitis C in 1996, when he was in prison. He commenced interferon-based treatment in 2004 after exiting prison but experienced significant side effects and discontinued treatment after six months. In 2013 he had the new treatment, with the assistance of a supportive doctor, and was cured of hepatitis C. He says he has ‘a lot more clarity’ since then and is in great health now.
He began methadone maintenance treatment shortly after exiting prison in 2004, and his prescribing doctor advised him to do the only available treatment at the time – interferon-based treatment. Colin recollects he wasn’t given much information about potential side effects or the possibility that the treatment might not work.
After starting treatment, he soon experienced significant side effects. He says, ‘[I felt] really depressed, I had a lot of nausea, headaches, sluggish, really off, like, worse than the hepatitis made me feel, like, God yeah, a lot more. I think it did really weird things to my head and my breathing, like, I remember not being able to get a full breath.’ The treatment side effects were so severe that he had to stop working. Six months into treatment, test results showed that he hadn’t been cured of hepatitis C. Colin remembers that he felt ‘angry’ and ‘defeated’ and stopped treatment shortly afterwards.
In 2013 he moved to a new city and did training to work in mental health. He says this experience made him reassess his earlier drug-taking experiences: ‘I did the […peer support training], I moved to [coastal town] and all of a sudden there was purpose and power to my story. It was like the deficit now became an asset.’ Around this time, he began seeing a ‘compassionate doctor’ who informed Colin about the new treatment for hepatitis C. After further monitoring and testing of his liver health, his doctor told him he had a high liver count [elevated liver enzymes] and Colin decided to start the new treatment.*
He recalls, ‘[My doctor] informed me about what was going on and he organised everything, like, he took the driver’s seat […] he showed a vested interest in me getting better […] I think he saw more worth in me than what I had in me at that moment, you know. I probably only had a little spark, but he saw that I was worth […it] and he chased it up, chased it up and chased it up, you know what I mean.’ Although he was advised that he would have to complete 24 weeks of treatment, after eight weeks, further testing showed that his hepatitis C was now undetectable. He finished treatment on the advice of his doctor after 12 weeks.
Colin experienced ‘zero side effects’ on the new treatment and says the two types of treatment he’s tried were like ‘apples and oranges’. After curing hepatitis C, he remembers, he felt ‘spick and span’ and ‘sparkling’.
He describes the new hepatitis C treatment he received as having lasting positive effects on his mental health and feelings of self-worth. He credits treatment with teaching him to prioritise his health needs and self-care, and with giving him the confidence to pursue new intimate relationships. He works in a job he feels passionately about, owns his own home and feels renewed optimism about the future.
*Colin 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 Colin started treatment through a clinical trial or a compassionate access scheme.
Colin (M, 44, experience with both new [DAA] and old [interferon-based] treatments) describes the way his doctor took charge of his treatment and displayed an investment in his future and wellbeing.
I had a really good doctor, really, really compassionate doctor who listened to me, who understood […] He informed me about what was going on and he organised everything, like, he took the driver’s seat, you know what I mean, and [he] really did, you know what I mean. It was more than just bedside manner, like, he showed a vested interest […] He saw more worth in me than what I had in me at that moment, you know. I probably only had a little spark, but he saw that I was worth pushing this through.
Describing an experience in hospital around 2013, Colin (M, 44, experience with both new [DAA] and old [interferon-based] treatments) remembers overhearing staff labelling him an addict while he was seeking treatment after a car accident.
I had had a car accident and I had a blood test, and the nurses knew nothing, like, no drug use was disclosed, that wasn’t the reason for the car accident. As they were wheeling a new person in at 5 o’clock in the morning, the person said, ‘What’s he like?’ and she has gone, ‘He has got hepatitis C, like he is a drug addict, don’t worry, I will make sure he stays away.’ I remember hearing that distinctively at 5.30 in the morning, just thinking, ‘What the hell?’, you know, ‘Don’t worry […] you will be safe.’ … ‘You will be safe’, that’s right.
Colin (M, 44, experience with both new [DAA] and old [interferon-based] treatments) explains that his life has changed significantly since being cured of hepatitis C. For him, being cured meant he felt able to pursue a romantic relationship, and it was also connected to a range of other positive changes in his life.
I hadn’t had any intimate partners for a long time, because I lost a partner when I was 20 and wasn’t in a relationship, actually, had nothing for about 18 years, you know. And then with the hep C, I just thought it was too much of a risk. Like, I had it in my head [that] it was too risky, and stuff like this or whatever, to transmit it on to a partner, and no-one deserves that sort of thing, you know. Getting it off your back, like, I guess as far as intimate partners [go], like, I need connection in my life with someone, you know. I need to share my life with someone, and that made that hell of a lot easier to, I guess, go and pursue that. And I think my family have only been back in my life probably four or five years, you know, and they have definitely … like, they have seen the change and the effort that I put in, you know what I mean. I have worked incredibly hard to get to where I am at.