Sam’s Story

Name: Sam

Gender: Male

Age: 35

Who is Sam?

Sam is currently homeless and staying on his ex-partner’s couch. He describes his ethnic background as ‘Australian’: he was born in Australia while both his parents were born in South Africa. His primary source of income is a social security benefit for people who are unemployed.* Sam describes being cured of hepatitis C as ‘a relief, knowing that [he] didn’t have this sack of potatoes on [his] shoulders any more’.

Brief Outline:

When Sam was diagnosed with hepatitis C in 2018, he didn’t know much about the virus. He and his partner both tested positive, and Sam remembers feeling ‘devastated’. After seeing his GP, Sam started a three-month course of the new treatment. This was a difficult period for him, as he and his partner were having relationship issues that ended in a separation. Given these events, he found it difficult to remember to take his medication and didn’t finish the full course. Although he didn’t finish the full course, he was cured of the hepatitis C, which was a ‘relief’ as he previously thought he would be ‘stuck with that for the rest of [his] life’.

Sam's Story:

At the time of his diagnosis in 2018, Sam didn’t know much about hepatitis C. His partner had recently been diagnosed, and he remembers thinking ‘I better go and get checked out as well’.

As Sam recalls, his partner was ‘pretty upset’ about her diagnosis, and he was ‘devastated’ by his own because he wasn’t aware that treatments were available: ‘I thought it was a life sentence and that there was no treatment for it. I was thinking I had my vaccines for [hep] A and [hep] B, like, being a plumber, you’ve got to have that, but then I was wondering why there’s no vaccine for hep C.’

Seeking more information, he went to see his GP, who informed him about the new treatment. ‘I went and saw my GP, and, yeah, like he was pretty blasé about it, you know what I mean. He said, “It’s so easy to get cured from it, there’s no reason to be getting upset.”’ Sam remembers feeling ‘more comfortable’ after seeing the GP but still felt he ‘didn’t get the answers […about hepatitis C and treatment] that [he] should have been getting’.

While he recalls not getting all the information he needed, Sam generally has a good relationship with the doctor who prescribed his treatment: ‘He’s a pretty chilled sort of doctor, you know what I mean? He’s never sort of looked down on me because I’ve been an IV user. Yeah, he’s just a real cool character. He was like, ‘Yeah, we’ll get a blood test done, I’ll get you onto these tablets and in three months you’ll be all right. Just take them every day and, yeah, there’s nothing to stress [about]. Don’t worry about it.’

Even though his GP tried to reassure him that his hepatitis C was nothing to worry about, especially given the new treatments, this was a turbulent time for Sam. He explains that issues in his personal life made it difficult for him to remember to take his treatment. As he recalls, ‘I had a fair bit going on between me and my partner at the time, yeah, like we had a few issues where, like, we’d split up, and then I’d leave the medication at home, and then I’d forget about where I was up to with it’.

Sam says that due to his relationship problems, he had trouble finishing the course of medication: ‘I didn’t even finish the whole course of tablets that they gave me. I finished probably two months of the three months.’ While he didn’t finish all his tablets, Sam decided to get tested again and was informed that he’d been cured of the hepatitis C.

Stigma played a big role in Sam’s experience. He recalls worrying that he was going to have to disclose his diagnosis and treatment to other people: ‘There was a stigma attached with hep C, and I thought, you know, [that] I would have to tell everybody, whoever I came in contact with [about the treatment]. Yeah, I was just a bit upset at the time when I first got diagnosed, but then after that [the treatment] didn’t really upset my daily routine.’

Being cured of hepatitis C has been particularly important for Sam’s personal life. As he explains, he wasn’t willing to start new romantic relationships while he still had hepatitis C, ‘I wasn’t prepared to start a new relationship with someone else and bring that up with them, because I thought I was going to be stuck with that for the rest of my life […] It was like having a sack of potatoes on your shoulder and you’ve got to carry it around with you.’

The experience of hepatitis C cure was, he says, a ‘relief, knowing that [he] didn’t have this sack of potatoes on [his] shoulders any more’.

*Services Australia JobSeeker Payment.

Sam (M, 35, experience with new treatment [DAAs]) describes his GP’s approach as comforting but not informative enough.

I thought [being diagnosed with hepatitis C] was a life sentence, and I went and saw my GP and got tested and, yeah, like, he was pretty blasé about it, you know what I mean. He said, ‘It’s so easy to get cured from it, there’s no reason to be getting upset.’ It sort of made me feel a lot more comfortable with it, in all honesty, but in saying that, I still really didn’t understand it and I didn’t ask the questions … like, I didn’t get the answers from him that I should have been getting. In saying that, I didn’t ask questions to him to fully understand what I was dealing with […I would have liked to have known] just how it affects the body, you know, what am I going to be going through as opposed to someone who didn’t have hep C. You know, how it’s really going to affect my day-to-day life.

Sam (M, 35, experience with new treatment [DAAs]) describes his GP as ‘relaxed’, and he discusses the GP’s efforts to ensure Sam didn’t worry unnecessarily about having hepatitis C. He also points out, however, that this meant the GP didn’t provide enough information about the disease.

My doctor was very relaxed about it, because he didn’t want to make me feel bad about myself, you know what I mean? He didn’t want me to have the stigma. Like, yeah, he didn’t want me to feel bad about it, he didn’t want me to feel dirty about it. He was really relaxed about it, but in saying that, he didn’t explain to me what the effects are going to be further down the line. So yeah, like, if he was a bit more in-depth in telling me how it was going to affect me and how it was going to affect my everyday life then, yeah, that would have helped a lot more.

Sam (M, 35, experience with new treatment [DAAs]) encourages anyone worried about hepatitis C to have a test and not feel ashamed.

Yeah, just if anyone was to come to me and said, ‘You know I’m suffering with hep C’ or ‘I’m worried that I might have hep C’, if any of my friends came up to me and said, you know, ‘I shared needles with this bloke’ or ‘I shared utensils with that bloke’, you know, I would tell them, ‘Go and get tested, because it’s not a life sentence’. It’s nothing to be ashamed of. It’s something that you’ve picked up and there’s plenty of treatments out there, you know. Go and get it done. It’s nothing to be ashamed of.

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.