Who is Derek?
Derek lives by himself in Melbourne, Australia and works as a teacher. He has a long history of being involved in HIV activism and related clinical trials, as well as peer work in alcohol and other drug settings. He describes his ethnic background as ‘Aboriginal’: like both of his parents, Derek was born in Australia. For Derek, being affected by a few health conditions means that ‘seek[ing] out as much information as possible […] just becomes your life’.
First diagnosed with HIV and hepatitis C in 1991, Derek was later diagnosed with hepatitis C again two further times (in 1998 and 2012). He remembers he was not given much information about hepatitis C after the first two diagnoses. After spontaneously clearing hepatitis C twice, he was diagnosed again in 2012, and says staff were ‘proactive’ about getting him started on treatment ‘straightaway’. He started interferon-based treatment soon after, and although he expected it to be hard, he experienced few side effects.
In 1998 he was diagnosed with hepatitis C again, but says he still wasn’t given any detailed information about it or his treatment options. He suspects he acquired hepatitis C sexually, and says it was frustrating that health services frequently assumed he acquired it through injecting drugs. Sometime after receiving the second diagnosis, he went back to his doctor. He recalls: ‘He wasn’t really happy with [the second diagnosis], so he gave me a bit of an education, [but] then again my body cleared it again. So, I [wasn’t really] too concerned about it.’
He was diagnosed with hepatitis C a third time in 2012, this time through a hospital. Unlike his first two experiences with diagnosis, he says, staff ‘were proactive’ about getting him started on treatment ‘straightaway’. In Derek’s view this was because ‘there was more information about the fact that your body doesn’t necessarily clear it all the time’. He recollects becoming ‘concerned’ and wanting to be ‘sure’ that he was ‘on top’ of his hepatitis C. Having been involved in clinical trials for HIV medications, he felt like the encouragement to begin treatment ‘was a positive thing’, although he would have preferred a more ‘holistic’ approach to treatment.
‘I think you need to see someone who is holistic […who] talks about all facets of your life and explains how [treatment] can be detrimental in each facet of your life, so given a story and a picture, because then you can make decisions up-front about how you are going to progress [with treatment]’.
He started interferon-based treatment shortly after and although he expected it to be hard, he experienced few side effects. He adopted a very can-do attitude to treatment and said it was like ‘water off [a] duck’s back’. Eventually he was cured of hepatitis C and stopped treatment shortly after.
Derek’s experiences with HIV and hepatitis C have had lasting effects on his life and how he thinks about himself. Although he continues to have an active sex life, he says, ‘I have lived my life deliberately as a single person […] I made a decision early that, you know, I am not going to put anyone else in this situation, and also you get fearful about opening up, so you don’t trust anyone.’
He is open about his HIV status with potential sexual partners and regularly asks about their HIV and hepatitis C status. He says that he encounters limited knowledge of hepatitis C among gay men, something he finds surprising: ‘If I am going to have sex with someone, I always ask them their HIV status and their hepatitis C status, and I find that no-one knows what [their hepatitis C status] is and I find that ludicrous.’
In addition to influencing his relationships with others, HIV and hepatitis C have also shaped his ‘active’ approach to politics and knowledge-seeking. He became an HIV ‘activist very quickly’ and says he ‘used to do things like jump on a bus on a Friday night and go down to Canberra and throw tins of red paint over Parliament House steps because we weren’t getting drug therapies’. He says, ‘When you have had [a health condition] affect you reasonably early, you seek out as much information as possible and that just becomes your life, seeking out information, not necessarily about that topic but about everything.’
Derek says he has a ‘reasonable understanding’ of the new hepatitis C treatment and would seek out further information if he needed treatment in the future. Since being cured of hepatitis C, Derek says, ‘I really encourage people to talk about it and, you know, share their views and not be ashamed of it.’
Derek (M, 52, repeat diagnoses, experience with spontaneous clearance and old [interferon-based] treatment) describes how he felt after being diagnosed with hepatitis C and HIV at the same time in the early 1990s. He explains that attending the hospital for both issues created extra complications.
It was a double whammy. But it [hep C] was not a concern compared to the other issue [HIV] and I must have an interesting immune system because my body overcame it [hep C] the first time of its own volition, and I was left to continue on my journey with the other situation. So, that was the first time I came across it, and to be quite honest, at that time I think the fear was just as great around hepatitis C as it was around HIV. So, dealing with health professionals, […] you had to go to two different areas of the hospital, and you were treated the same in both, but the fear was not about the other item, in each section it was about their own section item [either the hep C or HIV].
Derek (M, 52, repeat diagnoses, experience with spontaneous clearance and old [interferon-based] treatment) recounts how he developed more confidence through HIV and hepatitis C–related advocacy and peer work. His advocacy experiences have shaped his perspectives on his life and the future.
Well […] because I became an activist very quickly and used to do things like jump on a bus on a Friday night and go down to Canberra and throw tins of red paint over Parliament House steps because we weren’t getting drug therapies. It meant that I was an active participant in life. It’s amazing, people who meet me will always make the comment that I am like a walking encyclopedia because I just don’t forget a thing, and they say, ‘How on earth do you know all this stuff?’ When you have had something affect you reasonably early, you seek out as much information as possible and that just becomes your life, seeking out information, not necessarily about that topic but about everything […I am] not scared to be in confrontational situations, not scared to voice my opinion. What have I got to lose? I had everything to lose, and I championed that, so now, I have got nothing to lose, so if I was to die, I have lived a fulfilled life.
While stigmatising attitudes are something Derek (M, 52, repeat diagnoses, experience with spontaneous clearance and old [interferon-based] treatment) has encountered, he says that he rejects those views and encourages others not to be ashamed of having hepatitis C.
Do you know what? It could have [affected how I see myself] if I let it, because lot of people say it’s a dirty disease […] but I have shunned that thought. I have shut the thought out of my mind, because I don’t want to see myself in that way […] I actually went for a job […] as a peer support [worker] with HCV [hepatitis C virus] and HIV. Didn’t get the job, but I really encourage people to talk about it and, you know, share their views and not be ashamed of it.