Who is Mem?
Mem lives in Sydney, Australia, with her teenage son and his friend who she cares for, and she has two other teenage children at a boarding school. She describes her ethnic background as ‘Greek’: while she was born in Australia, both of her parents were born in Greece. Her primary source of income is a social security benefit for primary carers.* Mem says that being cured of hepatitis C was ‘bliss’.
Mem was diagnosed with hepatitis C shortly after giving birth in 2006. She had the new treatment in 2019, and says that in the years prior she had several stigmatising encounters in healthcare settings such as hospitals. It was after starting to volunteer at a peer-run drug consumer advocacy organisation that she found out about the new treatment and was cured of hepatitis C. While she describes curing hepatitis C as ‘bliss’, Mem says that she needs to continue to get regular tests for her liver health.
Mem says that she acquired hepatitis C during a time in which she was injecting drugs and found getting sterile injecting equipment difficult. As she explains, ‘As a young person, I dabbled with drugs [and] this is how I came to have hep C in the first place […] I was in a small town, and because of having a business in the town, going and getting clean equipment was really hard for me [because other people might see me]. So, in that course of not being able to get clean equipment all the time and being in a drug-using relationship, I then suffered and got hep C.’
Before having hepatitis C treatment, Mem had several related tests in hospital, which she says were often marred by health professionals’ stigmatising responses to her history of drug consumption. From her perspective, health professionals have become ‘stiff’ and treated her harshly, especially when they struggled to draw her blood due to vein issues. Thinking about how this made her feel, she says, ‘It’s so traumatising on the mind and body and everything, and then you’ve got stigma and discrimination on the top, and it’s pretty overwhelming in a way.’
During this period, she starting volunteering with a peer-run drug consumer advocacy organisation and came to see that her ‘lived experience of [hepatitis C and drug consumption were] worth [their] weight in gold’. She explains that it was through her work with this organisation that she came to have the new treatment in 2019.
As a result of her positive treatment experience, she started advocating the new hepatitis C treatment: ‘I can’t speak highly enough of it, because as long as I ate something before I took the tablets, I had no side effects whatsoever. I also did […a] speaker course, and I went around and spoke at [opioid pharmacotherapy] clinics about the new treatment and how great it was, and advocated in that respect.’
While Mem describes being cured of hepatitis C as ‘bliss’, she says that she should still be getting regular check-ups for her liver health. However, she explains that given her negative experiences with healthcare professionals, she finds it ‘confronting to go and get the tests done.’
*Services Australia Carer Allowance.
Mem (F, 41, experience with new treatment [DAAs]) says that it was ‘sad’ watching her friends have the interferon-based treatment.
I grew up with a lot of people around me that were drug users, and a majority of them went through the interferon. They were older than I was at the time. Interferon was the only thing available, and it killed their lives. I watched them waste away and it was a sad process, so this [new] treatment is a great thing.
Mem (F, 41, experience with new treatment [DAAs]) says that because an ultrasound is needed to guide her blood tests and collect blood, it took nearly 12 months to start treatment.
I believe I probably went for treatment [and] it took me nearly 12 months to be able to get bloods out […] I have an issue with bloods, getting them out of my body, so I need an ultrasound guided [test], with a machine, to get bloods out. So […there was] a year or so in between knowing [I] had the hep C and getting treatment, because when I’ve gone to go up to either the hospital or the doctor to get bloods out, if they didn’t have an ultrasound machine, I [was] knocked back. So then it’s just perpetuated the problem.
Mem (F, 41, experience with new treatment [DAAs]) identifies the positive contribution people with experience of hepatitis C can make to healthcare.
Having people with lived experience making and helping make decisions around people’s healthcare is a great start. I think peers can be a really good asset in that respect, because lived experience, you can’t get it in a textbook. You can’t learn it – you’ve got to live it, and you can’t get it any other way. So, being so clinical […] when you’re [helping] a human being is somewhat not a great approach, I think. If we can keep on going down that road of dismantling stigma and discrimination and looking at just the issue of getting it treated and treating everyone equally regardless of their choices […that would be a] great step.
Speaking highly of the new treatment, Mem (F, 41, experience with new treatment [DAAs]) says that the new treatment is especially good in comparison with treatment available in the past, which she had seen friends struggle with.
This new treatment is phenomenal […] It’s just phenomenal, it’s great, I can’t speak highly enough of it […] You know, I can’t speak highly enough of it, because as long as I ate something before I took the tablets, I had no side effects whatsoever […] It’s great, and a great alternative to the interferon. I grew up with a lot of people around me that were drug users and […] a majority of them went through the interferon, and they were older than I was at the time and interferon was the only thing available, and it killed their lives. I watched them waste away, and it was a sad process, so this [new] treatment is a great thing.
Given her own positive experience, Mem (F, 41, experience with new treatment [DAAs]) strongly recommends the new hepatitis C treatment to others.
I feel great […] I feel so good [about the new treatment], to the point where it got me advocating for the cause. I can’t recommend it enough. As soon as I find out that someone has hep C, I’m out there first thing and give the information out to them, and [I’m] steering them in the right direction to […] get a test done and get treated. It’s so easy and accessible. So, for me, it’s highly recommended and I can highly recommend it.