Heather’s Story
Name: Heather
Gender: Female
Age: 67
Who is Heather?
Heather lives with her husband and two dogs in Melbourne, Australia. She previously worked in healthcare but is now retired. She is close to her daughter and says they have ‘always had a really fantastic relationship’. She describes her ethnic background as ‘Australian’: like both of her parents, Heather was born in Australia. She values health professionals who ‘build trust’, and are ‘empathetic’ and ‘compassionate’.
Brief Outline:
Heather was diagnosed with hepatitis C after her daughter was diagnosed with it through ‘a routine pregnancy screen’. She took part in the silymarin (milk thistle) trial and an early trial of the new treatment, and later completed a full course of the new medications around 2014 that cured the virus. Regarding her treatment experience, she says, ‘I am a very strong person having come through this’. She also notes the ongoing presence of antibodies means that she may experience ‘stigma and discrimination’ in the future.
Heather didn’t give much more thought to hepatitis C until her daughter was diagnosed with it two years later (in 2000) through ‘a routine pregnancy screen’. Although her daughter ‘never showed any judgement or concern’, for Heather it was ‘incredibly traumatic’ to discover her daughter had the virus. She hadn’t known that she could pass on the virus while pregnant, but she had lived with a ‘long-term fear that I had done something or damaged her in some way’. Heather says she felt ‘like […] every single fear that I had around my IV drug use […came] to life really. It was bit like I had been cheating for the last 30 or so years of my life, and I thought I had got away with it, and I hadn’t’.
Heather got diagnosed with hepatitis C and liver disease shortly afterwards and remembers drinking a lot to manage the confusion. The diagnosis prompted her to disclose her previous experience of injecting drug use to her husband. It hadn’t come up before then: ‘He didn’t have any knowledge, he never asked, and I never felt that was part of a conversation that was ever needed’. She says that although he was surprised, ‘he took [the news] quite well’.
She began looking for a cure and remembers ‘looking for information, looking for help and [feeling] desperate to solve the problem’. She came across information about a 12-month trial of silymarin (milk thistle) and remembers thinking, ‘Why not give that a go and find out’. With the support of an encouraging health professional, she completed the trial, but it made her feel nauseous and had little effect on the virus.
After the trial, she started experiencing more serious symptoms, ‘and was really unwell’, and after having further tests, was diagnosed with ‘low-grade lymphoma’ [cancer]. The lymphoma caused cryoglobulinemia [inflammation of the blood vessels]. According to Heather, her doctor explained the treatment for hepatitis C may have a positive effect on the cryoglobulins, so she decided to start treatment: ‘So that was what pushed me into it. I’d also read of this fabulous treatment which was coming out then, which was pegylated interferon and ribavirin, and it was going to change the world because you only needed one injection of it a week instead of three.’ Although the treatment was effective in lowering her white cell count, her viral loads increased, and after 20 weeks, her treatment was discontinued.
With no new treatments on the horizon, she became involved in an online support and advocacy group where people shared personal information and experiences, and medical resources and clinical research. Being able to share her personal story and talk openly was ‘wonderful’.
Eventually Heather secured a place in the first trial of the new hepatitis C treatment (DAA), and completed the full course around 2014. Early test results indicated she had been cured of the virus and three months afterwards her GP confirmed this. She remembers that ‘it took at least another six months to actually realise that it was true and another I don’t know how long to truly accept to start feeling that I could live like a normal person’.
Reflecting on her treatment experience, Heather says, ‘I am a very strong person having come through this’, but she notes the ongoing presence of antibodies in her blood means there’s potential for future ‘stigma and discrimination’. For the future, she hopes that health professionals ‘build trust, be empathetic, be compassionate, let me be part of the team’.
Heather (F, 67, experience with both new [DAA] and old [interferon-based] treatments) says that the relationship between hepatitis C and injecting drug consumption is a key reason some people face discrimination. She argues that treatment is a great opportunity regardless of this issue.
I think as long as there is an association between hepatitis C and IV drug use, then you are always going to have to deal with stigma and discrimination. As someone who has hepatitis C, and I don’t think that has changed, and I think the fact that you can still have a blood test and your employer can see that you are antibody positive, so those things, I think, still hold people back a little bit and still makes them have … you know, it is confronting. If you had a history of IV drug use and that’s how you got it, then it’s still a lot of confronting of those concepts still. In terms of your own health, I think it’s [treatment] a very simple process and you can just, you know, you can just do three months’ treatment, perhaps get some other medical help support, you know, emotional support maybe, and things like that that you may have needed as well. It’s a great opportunity to do a lot for people in that time.
Heather (F, 67, experience with both new [DAA] and old [interferon-based] treatments) says that finding out her daughter had acquired hepatitis C from her was a ‘horrendous experience’.
I don’t think I knew that she could have got it during pregnancy. I mean that I could have passed it onto her while I was pregnant, but I did wonder, you know. I guess always in the back of your mind you wonder if maybe you [were] not being careful with blood or something and passed it on to her in that way. The moment she told me, I knew that I had it and that I had given it to her. I don’t know why, but I knew. I guess all that guilt around IV drug use, you know, when I first, well, before I was pregnant with her, before I knew I was pregnant with her, so I always had a guilt there anyhow. So I guess it’s always been this long-term fear that I had done something or damaged her in some ways. So I guess it was like having every single fear that I had around my IV drug use sort of just come to life, really. It was bit like I had been cheating for the last 30 or so years of my life and I thought I had got away with it and I hadn’t, so […] that was just the most horrendous experience, and [I] just have the most amazing daughter, because she never showed any judgement or any concern.
Voicing similar concerns to Ricky’s and Alexander’s, Heather (F, 67, experience with both new [DAA] and old [interferon-based] treatments) describes the stigma that can be found in the workplace and says that treatment is a great opportunity for people facing these issues.
I think as long as there is an association between hepatitis C and IV drug use, then you are always going to have to deal with stigma and discrimination […] I don’t think that has changed. I think the fact that you can still have a blood test and your employer can see that you are antibody positive, those things, I think, still hold people back a little bit and still makes them have … You know, it is confronting. If you had a history of IV drug use and that’s how you got it, then it’s still a lot of confronting of those concepts still. In terms of your own health, I think it’s [treatment] a very simple process and you can just, you know, you can just do three months’ treatment, perhaps get some other medical help support, you know, emotional support maybe, and things like that that you may have needed as well. It’s a great opportunity to do a lot for people in that time.