Gretchen’s Story

Name: Gretchen

Gender: Female

Age: 68

Who is Gretchen?

Gretchen lives alone in Sydney, Australia. She describes her ethnic background as ‘Australian’: like both of her parents, Gretchen was born in Australia. Her primary source of income is a social security benefit for seniors.* She spontaneously cleared hepatitis C but sometimes wonders whether ‘it will pop out’ again.

Brief Outline:

After her late husband was diagnosed with hepatitis C-related in the early 1990s, Gretchen was diagnosed with the virus too. She didn’t experience any symptoms and decided not to have the available interferon-based treatment after watching her husband and friends have a hard time with it. Later she found she had spontaneously cleared her hepatitis C.

Gretchen's Story:

Gretchen found out that she had hepatitis C shortly after her late husband was diagnosed with the virus in the early 1990s. She was prompted to get tested after he started the interferon-based treatment available at the time with the support of a gastroenterologist. She explains that on receiving her own diagnosis she wasn’t ‘so concerned with [herself]’ because she ‘wasn’t sick’ and her husband was so ill. Sadly, he died after undergoing a lengthy (14-month) period of treatment.

After her husband died, Gretchen started volunteering at a hepatitis advocacy and information service. As she explains, ‘It was an information line, not counselling because no-one was qualified for people to ring in […but] we would send them information on hep C in a brown paper bag. [That way] their family didn’t know where it was coming from. There was limited funding at the time […and the organisation] wasn’t paying anyone’s wages, so we were all volunteers […] That’s what I did.’ She also notes that she was surprised to learn at the time that people acquired hepatitis C not only through injecting but also through medical procedures and blood transfusions.

Gretchen wasn’t keen to start interferon-based treatment after seeing her husband and many friends have a hard time with it. As she recounts, ‘A lot of friends that we knew came to see him because they were on the interferon program, and some of them were having severe side effects [and developed] some wounds. I think they started at six months [with my husband], then they […extended the treatment to] 12 months. So, in that time I was sort of, you know, he was very sick, he was really sick. It’s a dreadful way to die.’ She also recalls that during this time she just hoped she ‘would be all right’.

While she didn’t experience any symptoms, Gretchen had regular medical examinations and liver tests to monitor the effects of the virus. At one appointment, her doctor told her that her ‘levels [liver enzymes] had elevated’. He was concerned about her liver health and wanted to start monitoring her every three months. She remembers being told that if her the level of her liver enzymes elevated further, she should start interferon-based treatment. She says that at the next appointment, her count had dropped significantly, with the doctor saying, ‘Gretchen, your levels have dropped remarkably […] This is nothing short of miraculous. What have you been doing?’ She says she told the doctor she hadn’t been using drugs or drinking, and was ‘looking after herself’. She doesn’t mention what year she spontaneously cleared hepatitis C but credits her positive attitude, yoga and meditation practice for helping her.

Although she cleared hepatitis C, Gretchen does sometimes wonder if ‘[the virus] can just come back’. She says she is now ‘loud and proud’ about her experiences and ‘states [her] truth quietly and clearly’ to everyone she meets.

*Services Australia Age Pension.

With experience of a number of other health conditions, Gretchen (F, 68, no treatment experience, experience with spontaneous clearance) says she’s adopted an accepting ‘what will be, will be’ attitude when it comes to hepatitis C.

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You know what, I had cancer and […], you know, two partners have died. I had a history of using [injecting drugs] and I come from a really respectable, well-to-do family, you know, and they’re all professionals […] They know about my past, and I’ve had to hide it a lot. I mean, I’m at my mum’s [house] now, she’s 96 tomorrow. She’s remarkable, incredible health, still living independently in the family home, you know. I’ve always had [the attitude] that anything will be what it will be, do you know what I mean? […] When you’ve had cancer, breast cancer – and I had a mastectomy, you know – everyone comes to you, ‘Oh, look, you’ve got to stay strong, you’ve got to [beat] this’ […] The doctors can do their most, but in the end, it’s going to be [whatever it will be…] So I think I’ve always had that attitude, and I had it with hep C [too]. What will be, will be.

Gretchen (F, 68, no treatment experience, experience with spontaneous clearance) describes informing her siblings, whose children play contact sports, about hepatitis C and how it’s acquired.

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I had to tell all my family members […] I felt that [it] was responsible to do that because my brother and sister, I mean, they had their children, [who were] like 10 and 12 at the time. I needed to educate them, and I gave them all the information […] I said, here’s all the information you need to know about hepatitis C. I told them [my husband] had died from it and I said, you know, ‘I’m a carrier* [too]’, and then I told them I had expelled [cleared] it, but I said, ‘[…you can only acquire it through] blood-blood contact’. But I also informed them and educated them because their children are playing […contact sports, so] if they have a collision and [there’s] blood-on-blood contact [it could be a risk], you know […but] I think [all they said was], ‘Oh yes, all right, thank you.’

As Gretchen (F, 68, no treatment experience, experience with spontaneous clearance) explains, she chose her current GP because he was ‘knowledgeable’ and didn’t have a negative reaction to her experience with hepatitis C.

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I’m very sceptical of doctors. Because I’ve worked in the health system, I know they’re not all good. So, when I changed from [my current doctor to] where I [moved here] about 10 years ago, I needed a good GP. I think it’s good to have rapport with your doctor, not just any port in a storm. You’ve got to get to know each other […] Yes, and that’s why I chose him, because he didn’t flinch, he asked me about it [hepatitis C], he asked me stuff and he’s … I’m 68, he could be about my age […] and he’s had his hair cut now, but he had a bit of a ponytail. He wears boots and jeans, you know, and I thought, ‘He’s an old hippie’, but he’s very good. He’s very knowledgeable and very thorough, and there was no discrimination.

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.