Who is Alexander?
Alexander lives alone in temporary accommodation in Melbourne, Australia. He describes his ethnic background as ‘Australian’: he was born in Australia while both of his parents were born in Russia. His primary source of income is an is a social security benefit for primary carers of young children.* Alexander was relieved to start treatment after being given short-term accommodation early in the COVID-19 pandemic, but when he became homeless again he was unable to finish treatment.
Alexander was diagnosed with hepatitis C in 1996 when he was in prison and says that while he wanted to be cured of it, over the years he was ‘never that concerned’. When the COVID-19 pandemic began, he was homeless, but he was moved into a hotel as part of the government’s pandemic response. With the assistance of homelessness support staff, he started the new treatment. However, soon after this, the short-term housing assistance ended and he became homeless again. Not having stable housing got in the way of his efforts to complete treatment and he eventually stopped.
Most of what he knows about the virus, he learnt through education courses in prison. As he explains: ‘They always do, sort of like, a little talk to know […the] diseases […] that [are] common within the prison system, and […] how to prevent it and keep yourself safe.’
While Alexander wanted to have treatment in custody – a place he says felt ‘structured’, and where he felt ‘healthy’ – in retrospect he is relieved he didn’t, as treatment was based on interferon at the time. He remembers other people’s ‘brutal’ experiences of interferon-based treatments: ‘I’ve seen some really healthy people […] get absolutely, just completely buckled in, you know, and, yeah, the headaches and nosebleeds and depression. It was just horrible to see.’
When the COVID-19 pandemic began, Alexander was homeless, and in 2020 was moved into a hotel as part of the government’s pandemic response. Suddenly he found himself with regular access to support and doctors, and decided that the ‘timing’ was right to have treatment. He says his aims for treatment were ‘to [cure] hep C’ and to ‘be a bit healthier physically’.
Shortly after starting the new treatment, his short-term housing assistance ended. He needed to leave the hotel, and became homeless again. Not having stable housing got in the way of his efforts to complete treatment. He says, ‘I left the facility […] and it was just hard for me to keep up with taking the medication. Although it’s a simple thing, you’re just taking one pill every morning, I would forget, you know, and not being able to come home to the same place every day or leave the same place every day [was hard].’
Alexander is hoping to start treatment again when he has stable housing. As he puts it: ‘If I knew when I was […] going into somewhere stable for a while where I’d be able to, you know, have my medication there for me to take all the time, you know, it would make it easier.’
*Services Australia Parenting Payment.
Alexander (M, 45, experience with new treatment [DAAs]) also describes being given little information about hepatitis C and the tests he had when he started treatment in 2020.
I was on the treatment a few months ago, this new medication that they’ve got for hepatitis, and they did some sort of check then, but my liver exam is normally generally pretty good, even when I’ve been [taking] drugs […Even after the check-ups] I’ve [still] got no idea [what my genotype is].
Also reflecting on the connection with drug injecting, Alexander (M, 45, experience with new treatment [DAAs]) explains that he too feels embarrassed about having hepatitis C.
[My hepatitis C diagnosis didn’t really change my life] apart from [the] embarrassment and humiliation, in a sense, that come with it […] Being ashamed of it, you know, like, it’s not a good thing and it’s not, you know, it’s not like I can put that in a conversation when you’re meeting someone. It’s like, ‘Oh, I have hepatitis C’, you know. It’s like, do you know what I mean? It’s just, like, yeah, it’s shameful […] being a drug user [which is] most likely how I got it, you know.
Alexander (M, 45, experience with new treatment [DAAs]) says being homeless made it difficult to complete his treatment.
I still currently have hep C. I was on treatment for a while. I got halfway through but circumstances [around] where I was, like, staying at the time changed and it was really hard for me to keep up with the medications […] I was taking the medication every morning because I was actually staying at [a supported short-term crisis accommodation], but then when my time was up there and I left, it was hard for me to keep up with the medication, because I was homeless again. So, although it’s a very simple task, my memory is not the best and it was a bit hard for me to keep up with it […] Just being transient, like, I was never in the same place, I’d never wake up in the same place every day. So, it was hard for me to, sort of, remember to take the tablets, because I had other things on my mind.