Rose’s Story

Name: Rose

Gender: Female

Age: 36

Who is Rose?

Rose lives alone in Melbourne, Australia, and has a young son. Rose lives alone in Melbourne, Australia, and has a young son. She describes her ethnic background as ‘Australian’: like one of her parents she was born in Australia while her other parent was born in Greece. Her primary source of income is a social security benefit for people living with a disability.* Rose was diagnosed with hepatitis C as a teenager and hasn’t yet done treatment. She describes her son as ‘the best thing in [her] life’ and her ‘motivation to get up and go’.

Brief Outline:

Rose was diagnosed with hepatitis C around 1999. She doesn’t quite remember if she was offered treatment at the time but thinks she was encouraged to delay treatment and keep an eye on her health more generally. In the past few years, various health professionals, family and friends have encouraged Rose to use the new treatment, but she has postponed it until she feels healthy, prepared and financially secure.

Rose's Story:

Rose was diagnosed with hepatitis C in about 1999 after a needle-stick injury at a train station. She reports that at the time she turned to her mother and ‘best mate’ for advice. Her mother advised that she ‘go to the doctors and get a blood test’ and together they went to their family GP, where Rose received a positive diagnosis for hepatitis C. According to Rose, prior to this moment she knew little about the virus: ‘I knew nothing about it at all. I was so naïve, I thought I was built like a brick wall, so concrete that no-one could get through me, bulletproof, but, you know, no.’

Rose doesn’t quite remember if she was offered treatment initially, but she thinks she was encouraged to delay it and keep an eye on her health more generally. She recalls, ‘I think [the advice was] just sort of like “Wait and see and watch how it goes and how you are over the years” and “just keep doing your tests”.’ Her mother helped her find information online about hepatitis C and treatment, and Rose remembers that ‘it was all scary stuff’.

Over the last few years, Rose has been encouraged to try the new treatments by various health professionals, family and friends, but she is waiting until she feels healthy and financially secure. As she explains: ‘They all mentioned it to me, but I wasn’t ready for it. I was a big drinker […] and mentally I wasn’t stable. That was one thing I had to fix, and it took many, many years […] I want to make sure that financially I’m good, you know, that I’m eating well, and there’s always food in the cupboard, and the house is always clean.’

While Rose knows the new treatments are ‘pretty good’ compared to the older, interferon-based treatment, she is concerned about being ‘ready to do it mentally’ and ‘wasting [health professionals’] time’ by doing treatment before she is ‘100% ready’. She is also concerned she may not ‘handle it very well […] might get a bit sick’ or that ‘something is not going to go right’. She explains further: ‘I can just feel it in my heart […] it’s just my luck, you know. I don’t purposefully do it, but bad luck follows me, it haunts me.’ While Rose plans to do treatment one day, she resents people who are ‘pushy and forceful’ about it.

When Rose is ready to do treatment, she hopes being cured of hepatitis C will help ‘get [her] health and […] energy back, and get back into work and get back to [her] old self again.’ She also says it would be great if treatment improved her energy levels so she could be more available to her son, who she describes as the ‘the best thing in [her] life’ and her ‘motivation to get up and go’.

*Services Australia Disability Support Pension.

Rose (F, 36, no treatment experience), who has never had treatment, says she feels tired and experiences liver pain and stomach bloating. Sometimes she consumes drugs to manage these symptoms.

I feel the effects […of] hep C, I feel it all, and all I want to do is sleep. Yeah […] I’m just tired, no motivation, no nothing. The only thing that gets me up and going, I’m not going to lie, [is] just going to have a taste of the good old drug, the upper or downer […It took] a few years before it [hepatitis C] started impacting me […I had] yellow-orangey skin under the eyes, my liver and my stomach is always bloating up, and you can’t eat, and [I had] toilet issues and just everything. It’s crazy and it hits you really hard.

Rose (F, 36, no treatment experience) explains how depression and anxiety reduced her motivation to have hepatitis C treatment.

Yeah. I’ve tried so hard to start the treatment. How many years … a lot of years on and off where I didn’t give two shits. I couldn’t wait to die, you know what I mean? So I was like, ‘I don’t care, I’m not going to do nothing’ […] Why? Because [my] depression and anxiety and all that [make this] a big uphill … an up[hill] and downhill process for me, and every day it changes, like, I can’t catch a break. I’m happy, down, happy, not happy.

Rose (F, 36, no treatment experience) also explains that people she knows have told her that the new treatment is an improvement on what was available in the past.

[I’ve heard] that [the new treatment is] pretty good, not too bad actually. As I said, […] I’ve seen people on the old one and the new one and, yeah, they are saying [that the treatments] are getting better […] So […] kudos to the new one […] Just the tablets, I think you take one every day for three months, yeah, something like that.

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.