Who is Julia?
Julia lives with her partner and two children in a regional town in New South Wales, Australia, and works as a counsellor in an alcohol and other drug-related health service. She describes her ethnic background as ‘Australian’: like both of her parents, Julia was born in Australia. After having the new treatment through a community health centre, Julia was ‘really happy to hear’ the news that she had been cured of hepatitis C.
Julia found out she had hepatitis C while pregnant with her first child. She remembers being ‘overwhelmed’ by the diagnosis and didn’t consider treatment until much later. In 2017, about a year after the new treatment became readily available in Australia, she decided to seek treatment because she had had time to ‘suss out the side effects’. For Julia, treatment was ‘simple’ and she was ‘really happy’ to receive the news that she had been cured of hepatitis C.
As Julia recalls, on becoming pregnant she asked for blood tests ‘over and over’, and remembers ‘being shocked that [she] wasn’t HIV positive’. She wanted several tests because initially she ‘didn’t quite believe’ the HIV-negative results. Julia describes feeling ‘pretty overwhelmed’ when she received her hepatitis C diagnosis and didn’t consider treatment straight away.
After the birth of her second child in 2012, Julia considered having treatment. However, she recalls doctors ‘never brought [treatment] up with me’ and she had to go to ‘health professionals with information around hep C, [as] I knew more than they did’ at the time. She ultimately decided to seek hepatitis C treatment in 2017, and began taking a course of the new treatment. As she recalls, ‘I gave it a good year after [the treatment] kind of came out, to just suss out the side effects [of the new treatment] and things like that’.
For Julia, ‘treatment itself was simple’, and she describes being especially motivated as she ‘loved the idea of actually saying goodbye to hep C because it felt like the last link to that whole part of my life’. On completing treatment, she received a phone call from a nurse at the community health centre to let her know that she was cured and that ‘he was pretty chuffed about it’. She remembers feeling ‘really happy’ with the news and goes on to explain, ‘I still have antibodies of hep C and I am aware of it, but to lose that notion of the virus running through my blood was lovely’.
As Julia puts it, before being cured of hepatitis C, she lived with the thought of dying early in the ‘back of [her] mind’. After completing treatment she felt like she had time given back to her, which raised positive new questions for her. She remembers thinking, ‘I might actually live to 80 or 90 years of age now, what I am going to do with the next 40 years?’
Reflecting on her experiences of diagnosis over 15 years ago, Julia (F, 43, experience with new treatment [DAAs]) explains that she wasn’t having healthcare regularly at the time and found out about her hepatitis C when she was having tests related to her pregnancy. (Note: strong language)
[I found out] probably when I was pregnant. Yeah, because before then I couldn’t have given a shit. Like, there would have been years where, apart from my methadone script, I would never [have] had any meaningful interaction with healthcare. So, I probably found out when I was pregnant. I actually recall being very surprised I wasn’t HIV positive. I remember asking [them to take] the test over and over when I was pregnant [and] just being shocked that I wasn’t HIV positive. I didn’t quite believe them […] I was all pretty overwhelmed, [with] everything else happening for me, and so hep C treatment, yeah, it wasn’t really talked about. I do remember wondering about breastfeeding and hep C once, you know … a few months on, once I realised I was going to have a baby.
Julia (F, 43, experience with new treatment [DAAs]) explains that having had hepatitis C means that her history of drug consumption is regularly raised in healthcare appointments, including those that are unrelated to the virus. She talks about how some of her daughter’s health records display what she calls her ‘stigmatised health history’ (see also, Dealing with stigma and discrimination).
Even […] those maternal child healthcare books you get, you know, the blue ones, that chart their first five years of life? [I had one for] my daughter, you know, the first page of that just talks about my drug dependence in pregnancy and my hep C status, so even her first health document, you know, has my stigmatised health history on it […] It’s awful. It also meant that [at] every kind of healthcare appointment, my drug use history was, you know, going to be brought up, was going to be made relevant when it wasn’t necessarily relevant, and, yeah, just the stigma that comes with that as the single mum, as someone who is also trying to manage, you know, all the trauma or all the things that led me into the drug dependence as well. Yeah, so I guess, you know, the hep C was, it was something I couldn’t avoid in healthcare, it was the reminder that I had this history of drug dependence.
Julia (F, 43, experience with new treatment [DAAs]) describes being cured of hepatitis C as moving on from a less positive time in her life, and she reflects on not having to think about it being in her body any more.
Yeah, the treatment itself was simple. I just loved the idea of actually saying goodbye, kind of, to hep C, because it felt like that last link to that whole part of my life. It’s almost that sense of no [longer having] contamination. It’s an awful word, but I remember having a minor surgery a few years ago, and once they gave me the morphine and the gas or whatever, I started blurting out, ‘Be careful, I am hep C positive, you know, be really careful.’ I was telling all the staff in the surgery, you know, I was terrified of them touching my blood, like [I had] this idea that I was contaminated. Yeah, so to lose that, which you know, I know I still have antibodies of hep C and I am aware of it, but to lose that notion, you know, the virus running through my blood, was lovely.