Who is Gracie?
Gracie lives with her foster child in Melbourne, Australia, and works part-time as an upholsterer. She describes her ethnic background as ‘Australian’: she was born in Australia while both of her parents were born in the United Kingdom. While having hepatitis C didn’t have a significant impact on her daily life, Gracie describes feeling ‘really fortunate’ that she was cured of it.
In the early 1990s Gracie found out she had hepatitis C after her new partner asked her to get tested for it. After diagnosis she was very conscious of her blood, as she taught upholstery and often got cuts from scissors and other sharp objects. She lived with the virus for some years before a series of tests suggested that the health of her liver was worsening. Eventually Gracie participated in a clinical trial of the new treatment and was cured of hepatitis C.
Her diagnosis was a ‘worry’ for Gracie, who says that while the ‘relationship didn’t last very long […] the hep C did’. She thinks that she acquired hepatitis C in 1979 when she ‘shared needles twice at university when experimenting with heroin.’ Gracie told her mother about the diagnosis but her mother was unsure how to respond: ‘I remember telling my mum that I had hep C, and she said, “Oh! Where did you get that?” and I said, “Sharing needles,” and she went, “Oh! That’s nice.” She’s a poor old love, didn’t know what to say.’
In the late 1990s Gracie started a series of tests, including tests for her liver health. These indicated that the health of her liver was worsening. As she recalls, ‘They did a biopsy and they said there was some scarring [on my liver], just mild scarring. Then the next time I did a biopsy, the scarring was a medium. Then they started saying that “It looks like the older you get, the more your liver deteriorates.”’
During this period Gracie was teaching at a secondary school. She remembers being very aware of her blood, given the nature of her work: ‘I taught upholstery, which involves staples, sharp objects […] and knives and scissors and needles. So, you know, there’s a bit of bleeding that goes on […] I just told everyone, “I’ve got hep C. I’ve had it for 20 years. Don’t get my blood on your blood. So, if you’re bleeding, put a Band-Aid on. If I’m bleeding or if you notice I’m bleeding, because sometimes I don’t notice, tell me.”’
Given the declining health of her liver, Gracie started to investigate treatment options. She remembers she was advised that the interferon-based treatments available at the time would be highly unpleasant and unlikely to cure her: ‘I’m pretty sure they said [I had a] 5% [chance of success]. It was some pathetic amount, anyway, for a year of hell, and I just thought, “No, that’s not going to work. I’ll just wait and see what else turns up.”’
Gracie recalls receiving a call from her specialist while on holiday in Queensland. The specialist told her about a clinical trial of the new treatments that was starting soon in Melbourne. She remembers ‘racing’ back to Melbourne to participate in the trial, which resulted in cure. As she explains, ‘You had to take […] one pill a day for six weeks. The first week I went in, they took a test and they said, “There’s still, like, 5% viral load.” The second test had no viral load and it stayed [at] nil for the rest of the time. I’m thinking, “Holy hell! You don’t even need to take this for six weeks. Two weeks and it’s done.”’
While Grace describes feeling ‘really fortunate’ that she was able to be cured of hepatitis C, it didn’t affect her daily life significantly. She explains that being ‘An old lady […] there’s nothing I really want to do that hep C [stops]. If I was a young woman and sexually active, this would’ve been a massive improvement in my life, but I’m not, I don’t care, and everything’s cool.’
Gracie (F, 65, experience with new treatment [DAAs]) found out she had hepatitis C in the early 1990s after a new partner asked her to have a test for HIV. She recalls thinking it was just a formality and being surprised by the diagnosis.
Okay. I’d just started a new relationship with a chap and I asked him if he would get tested for AIDS, and he said, ‘Yes, but only if you get tested for hep C’, and I said, ‘Why is that?’ He said, ‘Because my last girlfriend had hep C and she knew and she didn’t tell me’, and I said, ‘Oh, okay then’. So, I just went and got tested, thinking that it was just a formality, and I actually had it. I’d had a friend who had hep C and he really struggled with it, and I supported him in his struggles. He did three separate lots of interferon [treatment…] He lost so much weight. He was unable to work. He became skin and bones. He was really depressed. It was just awful to watch him struggle, trying to get rid of his disease, and then when I found out I had it too, I went, ‘Oh, no! This is a worry’. So, that relationship didn’t last very long, but the hep C did […] I remember telling my mum that I had hep C, and she said, ‘Oh! Where did you get that?’ and I said, ‘Sharing needles’, and she went, ‘Oh! That’s nice’. She’s a poor old love, didn’t know what to say, but anyway.
Gracie (F, 65, experience with new treatment [DAAs]) used to work as a teacher and was open with students and colleagues about having hepatitis C.
Yeah. I just told everyone, ‘I’ve got hep C […and] don’t get my blood on your blood. So, if you’re bleeding, put a Band-Aid on. If I’m bleeding, or if you notice I’m bleeding, because sometimes I don’t notice, tell me. We’ve got the alcohol swabs there and the Band-Aids in the classroom’, and I just made them all aware that it was an issue […] It’s just easier if you’re honest, you know, rather than hiding and stuff and being ashamed. Just come straight out and say, ‘I got it sharing needles. Bad luck. Deal with it.’
Gracie (F, 65, experience with new treatment [DAAs]) says that while she’s glad to be cured of hepatitis C, her life hasn’t changed dramatically since completing treatment.
I struggled with hep C for 20 years, and miraculously the new medication worked with me, but I struggled sometimes in those 20 years, especially when I was thinking about entering sexual relationships and stuff about disclosure […] There’s nothing I really want to do that hep C … if I was a young woman and sexually active, this would’ve been a massive improvement in my life, but I’m not, I don’t care, and everything’s cool.