Rebecca’s Story

Name: Rebecca

Gender: Female

Age: 34

Who is Rebecca?

Rebecca lives with her parents and brother in Sydney, Australia. She describes her ethnic background as ‘Greek’: she was born in Australia, one of her parents has Greek background and was born in Australia and the other was born in North Africa. Her primary source of income is a social security benefit for people who are unemployed.* She says being cured of hepatitis C was part of a process of starting to live what she calls a ‘normal life’.

Brief Outline:

Rebecca acquired hepatitis C from a needlestick injury in 2010. She explains that she knows this is how she got hepatitis C because she never shared injecting equipment. She remembers feeling ‘upset’ at her diagnosis and took advice to have interferon-based treatment soon after. She was ‘embarrassed’ to be having treatment, and wouldn’t let her family members see her inject herself with the medication. For Rebecca, curing hepatitis C meant that she could live a ‘normal life’. While she doesn’t think about hepatitis C very often these days, she still gets blood tests twice a year.

Rebecca's Story:

Around 2010 Rebecca had a needlestick injury that prompted her to get a blood test. She remembers that she got the test because she was feeling ‘paranoid’ that she may have acquired hepatitis C. The test confirmed that she had it.

Rebecca says that she felt ‘upset’ and ‘ashamed’ on finding out that she had hepatitis C. As the ‘black sheep of her family’, she was worried about what they would think. She recalls her family being understanding, though, and says that they knew her hepatitis C ‘wouldn’t put them in danger’.

Following advice from her GP, she started interferon-based treatment in the same year as her diagnosis. Overall, she says that her treatment experience was ‘okay’ and that she didn’t experience any significant side effects, except ‘never [getting] hungry much, so [she …] didn’t eat much’. Despite this, she explains, treatment wasn’t a simple experience. She recalls feeling ‘ashamed and embarrassed’ about it, so she never let her family see her inject herself with the medication.

Rebecca’s 12-month course of interferon-based treatment cured her of hepatitis C. As she recounts, one of her goals for treatment was to stop injecting drugs: ‘[I hoped that it would] stop me from using drugs, because I didn’t want to use drugs any more.’ For Rebecca, being cured of hepatitis C meant that she could ‘stop using drugs and have a normal life’.

It’s been over 10 years since Rebecca had hepatitis C. These days she doesn’t think about hepatitis C much, she says, but still makes sure to get tests for it every six months.

*Services Australia JobSeeker Payment.

Comparing her partner’s responses to those of her family, Rebecca (F, 34, experience with old [interferon-based] treatment) explains that unlike her parents, grandmother and brother, her partner [at the time] was not supportive of her decision to have treatment.

The funny thing is, I remember my grandmother, because my mum treated me like a child all the time, so I went with my nan, because she was worried about me, and my brother was there and so my brother came in, and then that was how it started from there […] Then my dad came with me to find out about the hep C, this treatment […] It was all positive [having them with me] […] My ex-partner had hep C and he didn’t cure it. He had the shits that I was going to try and get rid of it, for some reason […] I guess [he was worried that] I would be [cured of hep C] and he wouldn’t […] He said he would break up with me [if I did treatment] and I said, ‘Well, break up with me then […We] ended up breaking up for something completely different anyways.

Thinking back to when she had treatment, Rebecca (F, 34, experience with old [interferon-based] treatment) remembers her loss of appetite as its primary side effect.

My doctor gave me a referral to the hep C clinic at [a] hospital and the doctor prescribed, you know, told me [about] the program and put me on it. So once a week I was doing the interferon and having two tablets a day […] I did it for the whole 12 months […] I wasn’t really hungry [during the treatment]. I never got hungry much, so I didn’t eat much […] Other than that, everything was okay […] I was warned about it, but I was all right because I had my family around me […] I never let them see me inject the interferon [though…] because I felt ashamed and embarrassed, but other than that it was okay.

Not all those interviewed for this website had tried the new treatment. Some, like Rebecca (F, 34, experience with old [interferon-based] treatment), had mainly heard good reports about it from other people.

I heard there’s a new pill and you don’t have to do the […] injection any more. And I heard this pill does the job […] People like it […] A lot of people are happy with the new product.

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.