Harriet’s Story

Name: Harriet

Gender: Trans-woman

Age: 30

Who is Harriet?

Harriet lives with her husband and four dogs in Sydney, Australia and works as a peer-support worker. She describes her ethnic background as ‘Polish’: like one of her parents, Harriet was born in Poland. Harriet has had both the old, interferon-based treatment and the new treatment. Thinking back to when she was cured of hepatitis C with the new treatment, Harriet says she felt like she ‘had a second chance at life’.

Brief Outline:

Harriet was diagnosed with hepatitis C in about 2012. She recalls feeling very worried at the time and began interferon-based treatment about two weeks after the diagnosis. She describes her experience with the treatment as ‘horrid’ and says she stopped after six weeks. About three years later she sought information about new treatments and participated in a clinical trial of the new treatment. Her experience was very positive, and since then she has encouraged ‘many people’ to have the new treatments. As she explains, ‘every single person has nothing to say but good things’.

Harriet's Story:

In 2012 Harriet was diagnosed with hepatitis C. As she recalls, her first question was ‘Well, what’s that?’, and then she started to worry. She says she wasn’t given enough information from health professionals at the time. Rather, her main source of information was ‘other colleagues in the sex industry and […] they were just getting information as well from other people’.

About two weeks after the diagnosis, she decided to start interferon-based treatment. Reflecting on this experience, she describes it as a ‘horrid’ time: ‘I was vomiting, I was weak, my hair fell out [and] I wasn’t eating’. She also remembers feeling ‘alone’ and that she ‘didn’t know if [she] was going to die today or tomorrow. There was no support.’ After six weeks, she decided to stop the treatment.

In about 2015 Harriet sought more information about treatment by contacting a community organisation focussed on blood-borne viruses. She says it ‘was good to be able to get straight-up answers and [to know that] the information that I was given was correct’. As a result, she decided to participate in a clinical trial of the new treatment, in her words, as a ‘guinea pig’.

This treatment experience was ‘completely different’ from her first time. Unlike her previous experience, Harriet remembers, this time the team administering the treatment were ‘very supportive’. As she explains: ‘I had people ringing me on a daily basis to see how I was’. This time she also had ‘no side effects’ and ‘actually put on weight’, which was ‘good’.

For Harriet, being cured of hepatitis C during the clinical trial felt like a ‘second chance at life’. Cure was also connected to other changes in her life, in which her ‘mindset became positive’ and she ‘went back to work’. She explains that she ‘started looking after [her]self’ better, ‘started getting a support group together’ and making ‘real friends’. Given her good experience with the new treatment, Harriet promotes it to others: ‘We’ve got so many people on it, and every single person has nothing to say but good things.’

Like many of the people who appear on this website, Harriet (TW, 30, experience with both new [DAA] and old [interferon-based] treatments) explains that she wasn’t planning on having a hepatitis C test. In her case, she received a diagnosis after a sexual health check.

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Well, at first I went to get a sex screen and my nurse then told me ‘Oh, it looks like you’ve got hep C’. At first I thought, ‘Well, what’s that?’ I thought it was AIDS or something, and I [asked myself] ‘Do I go and commit suicide now?’ And she’s, like, ‘No, no, everything is good. You’ve just got to change your diet and be healthy’ and stuff like that. So, at first, when I first started, I changed my diet, started eating healthy again, and then it got worse, so I did the [old] treatment.

When Harriet (TW, 30, experience with both new [DAA] and old [interferon-based] treatments) decided to have the interferon-based treatment in 2012, she was given little information about the side effects, and she was offered little support.

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I wasn’t given, like, an option […] it was either [the old treatment] or nothing […] I did consider the nothing, and then they told me that I could get really sick and die, so you know […] You would walk into the [treatment] room and they completely separate you from the other patients and stuff. They’d make you feel like you’ve got something really, really bad and, you know, ‘We’ve got to stick this stuff into you which will drain you of your energy and your life and your happiness.’ It was bad. It was bad. I actually felt like I was being set up […] Yeah, I didn’t trust them. I wasn’t getting what I was told I was going to get. I got really, really sick when I did the treatment […] I was vomiting, I was weak, my hair fell out, I wasn’t eating, my anorexia came back […] They put you on the treatment and then they just [left] you be, you know, but there was no support around it. There was no support, so I felt alone. I didn’t know whether I was going to die today or tomorrow – there was no support.

Thinking back to how her parents responded to her diagnosis in 2012, Harriet (TW, 30, experience with both new [DAA] and old [interferon-based] treatments) describes them as unsupportive and explains that her mother had inaccurate perceptions of the possibility of acquiring hepatitis C through sharing kitchen utensils.

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My parents were the least supportive. They took away everything from me, and then they gave me a plastic cupboard and that cupboard was my cupboard, and I had plastic knives and forks, paper plates and all this stuff. I couldn’t use anybody else’s utensils or anything like that, and my mother’s a GP […and] she was like, ‘You could drink water, and then we could drink water from the same cup.’ […] Then she’ll get hep C, you know. Like, my mother, the GP, was giving me the wrong information.

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.