Kylie’s Story

Name: Kylie

Gender: Female

Age: 46

Who is Kylie?

Kylie lives with her young son in Melbourne, Australia. She describes her ethnic background as ‘Australian’: like both of her parents, Kylie was born in Australia. Her primary source of income is a social security benefit for people living with a disability.* She says that after being cured of hepatitis C in 2017, she felt ‘happier within [her]self’, and she continues to have regular tests for hepatitis C to check for reinfection.

Brief Outline:

Kylie was diagnosed with hepatitis C in the late 1990s. She was advised not to have treatment at the time, and she lived with the disease until she had the new treatment in 2017. She had her son before having treatment and decided not to breastfeed in case he acquired hepatitis C. Despite extremely high success rates for the new treatment, the first course didn’t cure it, and Kylie says this was difficult to understand at the time. She remembers that when the second course cured her of hepatitis C, she wanted to ‘shout from the rooftops’.

Kylie's Story:

In the late 1990s Kylie spent time in a ‘drug rehab’ service and while she was there had a range of blood tests. The tests showed that she had hepatitis C, which shocked her. As she explains, ‘I wasn’t jaundiced or tired […] it was a humongous real shock to me’. She remembers being very upset at the time: ‘I was absolutely devastated. I really thought that I was going to die, like, I felt that my lifespan was really cut short’.

At the time, the only treatment available was interferon-based, which was known to cause severe side effects and have relatively low success rates. Kylie recalls following advice from her doctor not to have treatment until better options were available: ‘They said to me that […] there was no use for me to go on [it and I should] wait further down the track, as something better might come out’.

Based on this advice, Kylie lived with hepatitis C until 2017, when she decided to try the new treatment. Several important events happened in her life before she had treatment, including the birth of her son. She explains that due to concerns about mother-to-child transmission of hepatitis C, she decided not to breastfeed: ‘When I fell pregnant, I was shattered that I couldn’t breastfeed, [in case] my nipples cracked […] I really wanted to have been a mother that could have breastfed, and I missed out on doing that’.

Surprisingly for Kylie, given she had been advised of the very high rate of success with the new treatment, the first course wasn’t successful. She remembers this as being very distressing and difficult to understand: ‘I was just really upset […] They did the last test on me, and it came up saying that it was gone, and then I had a phone call saying that I had to come back into the doctor’s because it was back. And I couldn’t understand [it]’. In Australia there is no limit placed on how many times a person can have treatment and Kylie tried again later in the year.

She also recalls that the health professionals who were advising her about treatment questioned her sexual and drug consumption activities, and asked whether she had followed the treatment program properly: ‘They asked if I was using [injecting drugs] during [the treatment], which I had stopped. [They asked …] whether I had shared a needle or if I had unprotected sex, but yeah, they asked if there was some reason why I still had hepatitis if I had done the program properly’. She says she responded by saying, ‘I hadn’t done anything wrong, and I had done everything step by step to what I was supposed to have done’.

While she was very disappointed with the outcome of treatment, Kylie had treatment again the same year. Given her previous result, she wasn’t hopeful about the outcome. As she puts it: ‘I was very depressed during the second stage of trying to do the second lot of [treatment]. I just wasn’t positive about it’.

To Kylie’s great relief, the second course of treatment cured her of hepatitis C. She recalls being so happy she wanted to ‘shout from the rooftops’. While cure was very welcome for Kylie, it hasn’t put hepatitis C entirely out of her mind. As she explains, being cured has had a positive effect on how she feels about herself, but she continues to have regular blood tests, as she still worries about it: ‘It’s made me feel better […] I don’t feel as depressed as what I did when I knew that I had hepatitis, so yeah, it’s made me feel happier within myself […] I think because I have had it in my brain for so long […] I’m always scared that it’s going to come back […] I’m regularly going to get my blood tested to make sure that it stays gone’.

*Services Australia Disability Support Pension.

Describing her diagnosis in the late 1990s as a ‘real shock’, Kylie (F, 46, experience with new treatment [DAAs]) also says she was worried about dying.

Okay, well as you know, I was on drugs and I went to a drug rehab. I didn’t know at all, like, I had no symptoms, but I had hepatitis, and at the rehab they did blood tests and they came back and told me that I had hepatitis. I was quite shocked because, like, I wasn’t jaundiced or tired, or compared to other people that I’d seen that you could tell had hepatitis. Yeah, I was really shocked and, like, the first thing you think of is, ‘Wow, I’m going to die’, blah, blah, blah. Like, it was something like someone telling me I had AIDS or something. It was a humongous real shock to me.

Kylie (F, 46, experience with new treatment [DAAs]) explains that some health issues prompted her to start treatment.

[I wanted…] my liver to get back to healthy […] I was starting to get headaches […and] I started thinking ‘Well, maybe that’s related to the hepatitis’ […] I wasn’t, like, doing a lot of reading and whatever, and I was suffering from a lot of headaches and just getting tired, like, during the day when I shouldn’t have been getting tired. Like, it was weird, I had no symptoms in the beginning, but […after] few years the headaches and that started kicking in.

While Kylie (F, 46, experience with new treatment [DAAs]) says that being cured of hepatitis C made her ‘happier’, she still faces discrimination related to her appearance and residence. (Note: strong language)

It’s funny, I’ve always been skinny but I’m a lot skinnier now, because I can’t have a lot of weight on my legs because of injuries [from a car accident] and, like, my son’s friends say to him – I don’t even look like I take drugs – but they say to him, ‘Oh, your mum is still on drugs, she’s so skinny’ […] It’s upsetting a little bit, like, that he has to deal with things like that, but he said it comes with the fact that as soon as you say you are in the housing commission house, everyone is supposed to be on drugs in [a] housing commission house, which is bullshit.

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.