Rohan’s Story
Name: Rohan
Gender: Non-Binary
Age: 36
Who is Rohan?
Rohan lives alone in Sydney, Australia, and works in an LGBTIQ health organisation. They describe their ethnic background as ‘Australian’: like both of their parents, Rohan was born in Australia. Rohan prefers to say that they have ‘cleared’ hepatitis C rather than ‘cured’ it, as it reminds them that they ‘still need to be careful not to get reinfected’.
Brief Outline:
Rohan works in an LGBTIQ health organisation. They were diagnosed with hepatitis C in 2010 after a regular test related to their HIV. The diagnosis was a shock to Rohan, who didn’t know much about hepatitis C at the time. After an unsuccessful experience with interferon-based treatment in 2010, Rohan tried the new treatment in 2016 and was cured of hepatitis C.
Rohan didn’t know much about hepatitis C when initially diagnosed with it: ‘I kind of knew a little bit. That maybe it was associated with injecting drug use, and that’s pretty much all I knew.’ They think they may have acquired hepatitis C through sex, but this has not been confirmed, as they ‘weren’t able to really do successful contact tracing’ at the time.
Stigma played a big role in Rohan’s experience: ‘I felt, like, a lot of internalised stigma. I felt really confused. I felt a bit angry, because, like, no-one was really talking about hep C among people living with HIV.’
Rohan recalls that concerns about their HIV status and repeated suggestions from their doctor led them to do interferon-based treatment in the same year they got their diagnosis: ‘I really wanted to just get rid of the virus. I just felt like, you know, one virus was okay to cope with, but having two was just way too much […] I felt like there was actually quite a bit of pressure from my specialist to be, like, trying to get this treatment as soon as possible, because my genotype was hard to treat.’
Interferon-based treatment caused serious side effects for Rohan, and they decided to stop after six months. The period on treatment wasn’t successful. This was a disappointing experience for Rohan, who explains, ‘When it came back that I still had hep C […] I just kind of felt really shit. I felt like really down on myself. I felt like it was my own failing.’
A couple of years after this experience with interferon-based treatment, Rohan spoke to a specialist about trying treatment again. They remember the specialist advising that ‘it’s not worth it’ and they were ‘better off waiting for these [new] drugs in the pipeline’.
In response to this advice, Rohan waited a few years, and finally tried the new treatment in 2016. They recall feeling ‘very optimistic’ about the treatment, especially because of its differences from previous treatments: ‘[There were] kind of three key messages [that] I was aware of, which was, you know, shorter time, less side effects and highly effective. So, for me, that was really promising.’
The treatment was effective and Rohan no longer has hepatitis C, but they continue to reflect on the idea of cure: ‘I can understand the word “cure” […but] maybe “cleared” for me reminds me that I still need to be careful not to get reinfected, whereas “cured” for me feels almost like I can’t get it ever again […] I mean, at the same time, like, I’m always going to have hep C antibodies in my body as well, even though I haven’t got an active virus. So, yeah, [I like to say that] I’ve cleared the virus.’
Like Harriet, Rohan (NB, 36, experience with both new [DAA] and old [interferon-based] treatments) explains that they received a diagnosis when getting regular tests for a different issue – this time HIV. They recall feeling confused and angry about the diagnosis
In 2010, I’d received a HIV-positive diagnosis in around April-May, and then so I was engaged in care and I was still doing six-monthly testing for all STIs and to monitor my HIV vitals. It was probably around November in that same year that I got a call to come into the clinic to talk about some liver results. At the time, I didn’t really understand how, like, HIV and the liver were connected, and it turns out, like, it wasn’t actually about my HIV, you know. I was sat down and I was told that I was hep C positive, and that was actually, like, a really big shock to me. It was more of a shock than my HIV diagnosis, because I understood that, like, what I was doing with sex was risky for HIV, and so it wasn’t, like, that surprising based on my behaviour. But in terms of hep C, I kind of knew a little bit [about it], that maybe it was associated with injecting drug use, and that’s pretty much all I knew. And at that time, even though some of my sex partners had injected drugs, I hadn’t injected drugs, and we weren’t able to really do successful contact tracing either. So, there was, like, a whole lot of confusion around that for me, and I think dealing with, like, two viruses just, like, was really, really intense. I felt like a lot of internalised stigma. I felt really confused, I felt a bit angry because, like, no-one was really talking about hep C among people living with HIV.
Rohan (NB, 36, experience with both new [DAA] and old [interferon-based] treatments) explains that they spoke with their parents about their (interferon-based) medication because they had to store it in their fridge. As Rohan also had HIV, this created a tension around disclosure.
I sort of, like, was really … didn’t really tell many people, like, only very close friends and my parents mostly because, like, I was going up to see them and I would’ve had to keep the treatment in the fridge […but] I hadn’t told them about HIV at that stage, so I was, like, talking to them about hep C but not about HIV […] I think, like, maybe because the hep C, like, I was being treated and so it’s, like, it’s hard to, like, not disclose that, and I think, like, as well, this HIV was a lifelong condition and hep C was curable and, like, maybe yeah.
Rohan (NB, 38, experience with both new [DAA] and old [interferon-based] treatments) says that the break they took from drinking while living with hepatitis C helped them realise that it contributes to their anxiety. While Rohan considered returning to drinking following treatment, they decided to stop altogether.
Yeah. I mean, I didn’t drink alcohol when I was living with hep C, just because like … mostly because I didn’t have a high tolerance. It was also, like, making my liver, that was already under pressure, having to work, and, like, I got a really bad taste and kind of a bit of a reflux when I was drinking alcohol. So, when I [was cured of] it, I was like, ‘Oh, cool. I can drink again now.’ […] What I realised is that actually, like, alcohol causes me anxiety, yeah, and I always thought, like, when I was younger, I was, like, smoking cannabis and drinking and I was just, like […] ‘Oh, it’s the cannabis’, and actually, no, cannabis doesn’t give me anxiety, it’s the alcohol. So, I just don’t really drink, because I don’t like the anxiety after it