Mem’s Story

Name: Mem

Gender: Female

Age: 41

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’.

Brief Outline:

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's Story:

Thinking back to 2006, Mem recalls ‘not feeling well and really run down’ after giving birth. She describes ‘juggling three kids and juggling work’ and deciding to get a hepatitis C test, which returned a positive result.

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.

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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.

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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.

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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.

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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.

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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.

Hepatitis C Quick Reference

While the new direct-acting antiviral (DAA) treatment for hepatitis C is generally straight forward, the personal experiences of people affected by it can be more complex. Below are a few key points about testing, treatment and health after cure.

Acquiring hepatitis C

Hepatitis C is a ‘blood-borne virus’. This means it is acquired through blood-to-blood contact. This can happen in several different ways. In some countries such as Australia, hepatitis C is commonly acquired through sharing injecting equipment. In other countries, hepatitis C is more commonly acquired through medical procedures or forms of skin penetration such as tattooing, body piercing or acupuncture, when unsterilised equipment has been used.

Hepatitis C testing

Two tests are used to diagnose hepatitis C. The first is an ‘antibody test’. This is used to identify exposure to hepatitis C. A positive antibody test shows that exposure has occurred, but not whether hepatitis C is still in the body. The presence of hepatitis C is determined with a PCR test. A PCR test looks for hepatitis C in the bloodstream by detecting the genetic material specific to the virus. A negative PCR test means the body has ‘cleared’ hepatitis C without treatment. A positive PCR test means hepatitis C is still present and medical advice is needed to discuss the possibility of future tests and treatment.

Treatment

The current form of hepatitis C treatment is called direct-acting antiviral (DAA) treatment. It is taken in tablet form, with around 95% of people cured on completion. This treatment replaced the old interferon-based treatment. The new treatment was a significant improvement for people with hepatitis C because it is relatively short (cure usually results within eight to 12 weeks) and has minimal side effects. The old treatment by comparison was much longer, less likely to result in cure and had many debilitating side effects. Because the old treatment was unreliable and debilitating, many people with hepatitis C chose not to have it, and instead waited for the development of better treatment. Many of these people have now been cured using the new treatment.

After treatment

After hepatitis C cure it is still possible to test positive for hepatitis C antibodies (see the two tests described above). This is because the antibody test only determines whether hepatitis C has ever been in the body. Only a PCR test can determine whether hepatitis C is still active in the body. Importantly, it is possible to acquire hepatitis again after cure. There are no limits to how many times testing or treatment for hepatitis C can be accessed in Australia. This means that treatment is always an option even for people who have had it in the past.