Alexander’s Story

Name: Alexander

Gender: Male

Age: 45

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.

Brief Outline:

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.

Alexander's Story:

When he was diagnosed with hepatitis C while in prison in 1996, Alexander remembers feeling surprised, but he says he learned to live with it: ‘I was taken aback slightly, but that was the only, like, sort of impact that I had from it, I suppose […] because I haven’t really … it hasn’t really been a concern to me. I’ve learned to live with it quite easily.’ He says hepatitis C wasn’t concerning because he had ‘never shown symptoms’ and ‘never been sick because of it’.

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.

Hepatitis C Quick Reference

While the new direct-acting antiviral (DAA) treatment for hepatitis C is generally straight forward, the personal experiences of people affected by it can be more complex. Below are a few key points about testing, treatment and health after cure.

Acquiring hepatitis C

Hepatitis C is a ‘blood-borne virus’. This means it is acquired through blood-to-blood contact. This can happen in several different ways. In some countries such as Australia, hepatitis C is commonly acquired through sharing injecting equipment. In other countries, hepatitis C is more commonly acquired through medical procedures or forms of skin penetration such as tattooing, body piercing or acupuncture, when unsterilised equipment has been used.

Hepatitis C testing

Two tests are used to diagnose hepatitis C. The first is an ‘antibody test’. This is used to identify exposure to hepatitis C. A positive antibody test shows that exposure has occurred, but not whether hepatitis C is still in the body. The presence of hepatitis C is determined with a PCR test. A PCR test looks for hepatitis C in the bloodstream by detecting the genetic material specific to the virus. A negative PCR test means the body has ‘cleared’ hepatitis C without treatment. A positive PCR test means hepatitis C is still present and medical advice is needed to discuss the possibility of future tests and treatment.

Treatment

The current form of hepatitis C treatment is called direct-acting antiviral (DAA) treatment. It is taken in tablet form, with around 95% of people cured on completion. This treatment replaced the old interferon-based treatment. The new treatment was a significant improvement for people with hepatitis C because it is relatively short (cure usually results within eight to 12 weeks) and has minimal side effects. The old treatment by comparison was much longer, less likely to result in cure and had many debilitating side effects. Because the old treatment was unreliable and debilitating, many people with hepatitis C chose not to have it, and instead waited for the development of better treatment. Many of these people have now been cured using the new treatment.

After treatment

After hepatitis C cure it is still possible to test positive for hepatitis C antibodies (see the two tests described above). This is because the antibody test only determines whether hepatitis C has ever been in the body. Only a PCR test can determine whether hepatitis C is still active in the body. Importantly, it is possible to acquire hepatitis again after cure. There are no limits to how many times testing or treatment for hepatitis C can be accessed in Australia. This means that treatment is always an option even for people who have had it in the past.