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.
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’.
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.