Regina’s Story

Name: Regina

Gender: Female

Age: 69

Who is Regina?

Regina lives by herself in Sydney, Australia, and has two children. She describes her ethnic background as ‘New Zealander’: like both of her parents, Regina was born in New Zealand. She is retired and her primary source of income is a social security benefit for people living with a disability.* She says that being cured of hepatitis C is ‘fantastic’.

Brief Outline:

Regina was diagnosed with hepatitis C in 2009 after a blood test for a hysterectomy showed she had the virus. While she was encouraged to have the interferon-based treatment available at the time, she didn’t want it and delayed having treatment for a few years. After learning about the new treatments, she got ‘compassionate access’* in 2011. She was cured of hepatitis C and experienced no side effects while taking the medication. She says that the new treatment is ‘amazing’.

Regina's Story:

Regina remembers thinking that she ‘would die’ after finding out she had hepatitis C in distressing circumstances following a medical procedure. As she recalls, ‘about 12 years ago [2009], I had a hysterectomy, and the surgeon must have had me tested. I know you had to be tested for everything, and he walked in the day after the operation, threw the letter on the bed and said to me, “Did you know about this?” and walked out again. I picked up the letter [telling me I had hepatitis C] and, you can imagine, I thought I was about to die, and then it went from there.’ She ‘didn’t tell anyone’ about the diagnosis.

Shortly after returning home from the hospital, Regina rang the information hotline on the letter and ‘spoke to a very nice gentleman’ who gave her information about hepatitis C and treatment options. She then went to the doctor and got a referral for more blood tests, which she says she ‘put off [getting] for about two years’. In the interim, she says, she ‘read everything [she] could […] Googled it [hepatitis C]’ and subscribed to a magazine with stories of people’s lived experiences of hepatitis C.

Regina eventually got more blood tests done through her GP, who then referred her to a liver clinic at a hospital. She remembers that the staff ‘were very nice’ when they sent her for ‘liver scans’. While she got further testing, she didn’t want to have the interferon-based treatment, which was all that was available at the time. As she recounts, ‘[The staff] were all quite stunned [when I said no…] The social worker was going to show me how I could hide [the medication] in my fridge, from the children, and things like that, and I said, “No, no, I’m not taking it” […] I know I used to be an intravenous drug user, but to put a needle in myself now, I couldn’t do it. Yeah, I couldn’t do it.’

Regina was one of the first people to have the new treatment after getting ‘compassionate access’* in 2011. She remembers reading about Harvoni® (a new hepatitis C treatment), then seeing it listed on to the Pharmaceutical Benefits Scheme. She rang the liver clinic to check on access and got an appointment straight away. About her treatment experience, she says she had ‘no side effects’ and ‘it worked and was fantastic. I felt so good. I got out there. I cleaned the whole garden up. You know, it was amazing, it was an amazing drug.’

Reflecting on her experience of hepatitis C cure, Regina says it probably didn’t change much about her life but ‘it was a big relief’.

*Services Australia Disability Support Pension.
*Compassionate access programs make a treatment available to people unable to access it by participating in research such as clinical trials. Compassionate access to the new treatment started in Australia in 2012. The treatment has been available widely since 2016 via the Pharmaceutical Benefits Scheme.

On speaking to close friends about her hepatitis C, Regina (F, 69, experience with new treatment [DAAs]) found out some of them had also had it. She says that even though she doesn’t usually tell other people ‘everything’, it was ‘nice’ to find out that they also know about hepatitis C.

Well, the only people I have told have been close friends, and the interesting thing was, was one of the close friends […] it turns out, he also had hep C, but he got […cured] a long, long time ago with interferon. I told another friend whose husband also has it, but […] I don’t know his story at all […] I think it […] came up in conversation or something along those lines. It wasn’t a ‘Oh, I’m going to disclose this to someone’ [type of moment]. It would have come up in conversation, I think […] They were people my age who lived through the same era, you know, who lived through the same time, so it was the same thing […It was] actually quite good. It’s nice to know that other people know [about it], but it doesn’t really matter to me. You know, I’m not one of these people who’s big on, you know, telling people everything.

For Regina (69, F, experience with new treatment [DAAs]), while being cured of hepatitis C was a ‘relief’, she worries about developing liver cancer in the future.

Yeah, it was a big relief. It really was. All of a sudden, I felt like I wasn’t dying, but of course, there’s always the worry of the ongoing effects. You know, developing liver cancer or something. There’s always that slight worry, but I try not to worry […] I think I’ve got cirrhosis, if I remember [correctly], a bit of cirrhosis, but nothing to worry about. From the minute that I was diagnosed with hep C, I haven’t had a drink, not that I was a big drinker, but I’ve not had a drink of alcohol since.

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.