Giovanna’s Story

Name: Giovanna

Gender: Female

Age: 58

Who is Giovanna?

Giovanna lives with her partner in Melbourne, Australia and works as a librarian. She describes her ethnic background as ‘Italian’: like both of her parents, Giovanna was born in Italy. Giovanna explains that her experience of hepatitis C made her reflect on the importance of secure work and benefits such as sick leave.

Brief Outline:

Giovanna was diagnosed with hepatitis C in the mid-1990s. Experiences in a hepatitis C support group put her off interferon-based treatment, but her liver health started to decline in 2012 and she then decided to try the treatment. She was cured of hepatitis C, but experienced significant physical side effects. One important outcome of having hepatitis C treatment was that it encouraged her to change careers.

Giovanna's Story:

In the 1980s Giovanna was, in her words, a ‘recreational drug user’: ‘Weekends, party drugs, speed mainly, you know. I was still studying, working, I was having a full life. It’s just, you know, that’s what I liked to do on my weekends.’ It was during this time that she acquired hepatitis C through reuse of injecting drug equipment.

She was not diagnosed until 1994 or 1995, when she went to see a new doctor, who she remembers saying, ‘It would be nice to carry out a range of tests for physical health’. She recalls that they ‘tossed in the HIV test and hep C and a whole bunch of other things’ in order to be ‘quite thorough’. She remembers feeling ‘a bit shocked’ to receive a diagnosis of hepatitis C because she was ‘completely asymptomatic’.

After her diagnosis, Giovanna joined a hepatitis C support group. She recalls witnessing the effects of interferon-based treatment on some of its members. According to her, she ‘freaked out a little’ because they appeared ‘quite ill’ from the treatment, and she decided to postpone treatment by waiting until the available treatment ‘seemed to be getting better’.

She remembers having regular tests for her liver health alongside a few other health issues during this period: ‘I was getting tested for […] a few other[…] ailments, so that was just part of my regime. Every six months I’d get the liver done […] and whatever else was going on.’ In 2012 Giovanna was seeing a different doctor, who ‘picked up that […] the viral count [of her liver] had for some reason gone up quite a lot’. She recalls this is when she started to consider treatment.

Giovanna recollects reducing her work week to four days due to the potential side effects of the only available treatment at the time, interferon-based therapy. This was important because, as she explains, ‘[I] went through the physical side effects, the tiredness, you know, some of the psychological things that can happen to people […] I was going to the gym once or twice a week, but at one stage, I couldn’t lift more than two kilos. I was really shocked […] Every time walking up a flight of stairs, I was completely exhausted by the time I got up one flight.’

After completing treatment Giovanna went overseas. She recalls that at this time she was ‘physically feeling a lot better’, but she was also ‘wary’ that the treatment may not have worked. After some months she was informed that the treatment was successful, a result she says she was ‘quite happy’ with.

Giovanna describes a range of effects hepatitis C had on her life, including a career change. She recalls that this period of ill health made her consider the importance of sick leave and other benefits that she didn’t have in the job she had at the time. As a result, Giovanna decided to retrain at university and move into a profession that was more secure: ‘I just changed my whole career, and I wanted something that, you know, had good superannuation [and] was steady. I knew I could get a steady income, just in case I did get sick, I knew I had, you know, good sick leave provisions [in my new career].’ She continues to feel passionate about her work since her career change.

Giovanna (F, 58, experience with old [interferon-based] treatment) explains that spending time with her friend was a good strategy for managing some of the side effects of her interferon-based treatment.

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So, basically what I would do was do the injection on the Thursday night, take Friday off work, and then that sort of left the whole weekend to recover from that, and then I’d be okay to go to work on Monday. The other thing I was fairly determined to do was be physically healthy. So, I kept the gym up, because I was going to the gym once or twice a week, but at one stage, I couldn’t lift more than two kilos. I was really shocked. So, physically [the treatment] was impacting on me a reasonable amount and, you know, the other thing I do remember is every time walking up a flight of stairs, I was completely exhausted by the time I got up one flight of stairs. Then, you know, I was trying to keep myself mentally healthy, and luckily, I had a friend who also didn’t work on Fridays, and she’d pick me up in her car and we’d go shopping together for food […] That was actually quite a nice time, going to different farmers’ markets, going to different food shopping centres all over Melbourne. So, it turned out to be kind of a nice thing to do. So, I tried to use Friday as keeping myself mentally healthy day.

Giovanna (F, 58, experience with old [interferon-based] treatment) recounts negotiating with her manager to accommodate her treatment schedule in 2012. She also says that she spoke about her treatment with a colleague she felt she could trust.

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Well, I told my manager at work, because I had to explain to him why I had to take the leave in the way I did, and he was quite good. I mean, I explained to him, you know, why I needed to be on this regular cycle, and I’d got a certificate from the specialist indicating that Friday was the day I was often going down to the clinic to get things checked. So, I just took every Friday off. So, I told my workplace; well, one person. I did tell another person at work, because she did notice I actually lost quite a bit of weight, and she noticed that I couldn’t make it up a flight of stairs, which was unlike me, and it was someone I, you know, I felt that I could trust, so I told her at the end of the treatment.

Focussing primarily on physical health, Giovanna (F, 58, experience with old [interferon-based] treatment) says she had more vitality and felt physically stronger after being cured of hepatitis C in 2012. This experience also inspired her to take up running. (Note: strong language)

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I think in that time I actually went overseas, so I started physically feeling a lot better. I wasn’t as tired as I was after the treatment, and when I got the final result, I felt quite happy, you know, because, yeah […I had] to wait six months [before you get the final result]. So there was a bit of feeling a bit wary that maybe it hadn’t worked, but my specialist seemed to indicate that it had worked. I just had to wait for that six month period before I was pronounced cured […] I mean, the other thing I did after the treatment was I waited a while, then I decided to take up running as a bit of an FU [fuck you] to the disease, because there was that stage where I remember being at work, walking up two flights of stairs and being really puffed out and people noticed, and I thought, ‘I don’t like this, I don’t like that sensation’. So, once I got cleared and, you know, was pronounced cured, a few years later, I took up running. So, I did a four-kilometre charity run, which was fun.

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.