Advice and Messages to Others

Quotes are presented word for word apart from minor editing for readability and clarity. Identifying details have been removed. Square brackets show text that has been added or, where ellipses (three dots) appear, show that text has been removed. For example, ‘I had the nurses explaining to me, like, how easy it was […to have] treatment and I went to the [hospital liver clinic] and there was a doctor … can’t think of her last name, really nice lady […] Yeah, she explained everything to me and said it was a good time for me to do it now and, yeah, [I] just stuck with her and got that done.’

The people whose stories are presented on this website are keen to share what they’ve learnt through their experiences of hepatitis C and treatment for the disease. Several offer general advice for other people considering treatment. Those with experiences of treatment reflect on what helped them through it or advice they wished they’d received before starting. Others focus on the specific issue of stigma and discrimination (see also, Dealing with stigma and discrimination), while some also have messages for health professionals involved in hepatitis C treatment.

Overall, this section of the website covers important messages that the individuals we spoke to wanted other people affected by hepatitis C to receive.

ADVICE FOR PEOPLE PERSONALLY AFFECTED BY HEPATITIS C

Some people interviewed for this website offered advice about the different aspects of hepatitis C treatment. Many encouraged others to consider treatment. Often reflecting on their own positive experience, many say that the new hepatitis C treatment is worth considering because it’s much better than the old treatment (see also, Perspectives on the new hepatitis C treatment). Others spoke about issues they saw as related to treatment, such as the importance of regular hepatitis C tests and ways to respond to a diagnosis (see also, Being diagnosed with hepatitis C).

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.

When people approach Rashida (F, 52, no treatment experience, experience with spontaneous clearance) for advice about hepatitis C and treatment, she recommends they seek a medical opinion, but also advises them not to panic. (Read her personal story here)

I am obliged to let people [know] not to panic [about having] such a disease, because I saw that in my country […many people] were really panicked, even my relatives […] I feel that getting panicked more than normal [can negatively] affect the outcome of the treatment or the disease. Maybe it’s my nature that I don’t overreact […] When I was diagnosed, all of the community around me were doctors and they were just worried about [me] taking rest, [saying,] ‘Don’t exhaust your liver’ [and so on…] But as I told you, [sometimes people I know who…] have hepatitis C, they call me to say, ‘Rashida, you had this experience. What should I do?’ And, of course, I am always telling them, ‘Go to the doctor, but please don’t panic.’ This is always my advice.

Anthony (M, 36, no treatment experience) advises people who share injecting equipment to regularly have hepatitis C tests. (Read his personal story here)

Just get yourselves tested regularly. Like, if you are going to be sharing injecting equipment, then get yourself tested regularly, and then you go from there, you know. If you’ve got it, you’ve got it, and you find the […] course of drugs you need to get rid of it, you know […] It’s only a blood test, you know.

Many of the people we spoke to encouraged others to have the new hepatitis C treatment. For some, this advocacy has become part of their daily personal and professional life.

Dave (M, 65, experience with both new [DAA] and old [interferon-based] treatments) wants to raise awareness of the new treatment and regularly encourages others to have it. (Read his personal story here)

I am very much involved in consumer advocacy for people who inject illicit drugs, and hepatitis C is part of that. I firmly believe that we can actually cure hepatitis C and rid ourselves of it in Australia, and I just want to encourage more and more people to take that treatment, because a lot of them will still think the treatment is from the old way, you know, from the dark ages […The new treatment] works [and hep C is] curable. I would encourage people to do it. As I said before, we can rid Australia of hepatitis C […] It’s so easy nowadays […] I want to get more people aware that this new treatment is available, and it works and not to fear it. Try it, do it, because it will be the best thing you’ve done for yourself.

Given her own positive experience, Mem (F, 41, experience with new treatment [DAAs]) strongly recommends the new hepatitis C treatment to others. (Read her personal story here)

I feel great […] I feel so good [about the new treatment], to the point where it got me advocating for the cause. I can’t recommend it enough. As soon as I find out that someone has hep C, I’m out there first thing and give the information out to them, and [I’m] steering them in the right direction to […] get a test done and get treated. It’s so easy and accessible. So, for me, it’s highly recommended and I can highly recommend it.

Some offer advice on the importance of maintaining a positive outlook and suggest other strategies that can be helpful for completing treatment and enjoying life after being cured (see also, Reflecting on experiences of treatment and cure).

While he hasn’t had treatment himself, Ricky (M, 35, no treatment experience) emphasises the importance of positivity when thinking about hepatitis C treatment. (Read his personal story here)

Stay strong, I guess, and stay positive, and don’t let things get to you […] Stay focussed and listen to the doctor or to the nurse or whoever […] and listen to all the instructions, and don’t read into [your diagnosis] too much, or don’t overthink it, and don’t think negative. Be positive about it, I guess.

Carol (F, 58, repeat diagnoses, experience with new treatment [DAAs]) recommends focussing on health beyond the hepatitis C treatment and cure. She explains that regular walking has been especially helpful. (Read her personal story here)

Just persevere […] The thing is when you have the treatment and you [cure] the body, you’ve still got to work with the body and maintain a better lifestyle. So, I suppose I’m lucky, because I’m on the coast, you know, and I’ve got a variety of beaches to choose from and [I so love] walking. I think the walking has helped the most.

Dealing with stigma

For many people, it’s important to reduce the stigma surrounding hepatitis C and try to end discrimination against people affected by the virus. They advise others to ignore negative attitudes and not be embarrassed about having treatment (see also, Dealing with Stigma and Discrimination).

Anthony (M, 36, no treatment experience) advises people living with hepatitis C to focus on their own health and disregard other people’s negative opinions. (Note: strong language). (Read his personal story here)

Just, like, don’t worry about what people think, and worry about yourself and getting […cured]. Worry about yourself. Don’t worry about what people think [or] about stigmas and all that sort of thing, you know. If people’s opinion … like, I’ll be honest, everyone’s got an opinion and opinions are like arseholes, everyone’s got one, you know.

Sam (M, 35, experience with new treatment [DAAs]) encourages anyone worried about hepatitis C to have a test and not feel ashamed. (Read his personal story here)

Yeah, just if anyone was to come to me and said, ‘You know I’m suffering with hep C’ or ‘I’m worried that I might have hep C’, if any of my friends came up to me and said, you know, ‘I shared needles with this bloke’ or ‘I shared utensils with that bloke’, you know, I would tell them, ‘Go and get tested, because it’s not a life sentence’. It’s nothing to be ashamed of. It’s something that you’ve picked up and there’s plenty of treatments out there, you know. Go and get it done. It’s nothing to be ashamed of.

Advice for health professionals involved with hepatitis C

A few people we interviewed also offer advice to health professionals. This advice focusses on the kinds of information they would have liked to have when they began treatment, and the contribution people with personal experience of hepatitis C can make in treatment settings. Some also suggest strategies that might increase awareness and uptake of the new treatment.

Focussing on the importance of raising awareness about hepatitis C treatment, Rusty (M, 70, repeat diagnoses, experience with spontaneous clearance and no treatment experience) offers advice to health services on the best places to distribute information. (Read his personal story here)

There’s always information, there’s always education. Just get as much education and information out there as you can, and [have information in] places like methadone clinics and injecting centres and needle exchanges. Just hand out information to people to read, you know, and, you know […] It’s up to the individual to do something about it, you know what I mean, you can just supply information for them, even if only helps one in 10 or one in 100, well, that’s good, you know […] All you can do is supply information.

Mem (F, 41, experience with new treatment [DAAs]) identifies the positive contribution people with experience of hepatitis C can make to healthcare. (Read her personal story here)

Having people with lived experience making and helping make decisions around people’s healthcare is a great start. I think peers can be a really good asset in that respect, because lived experience, you can’t get it in a textbook. You can’t learn it – you’ve got to live it, and you can’t get it any other way. So, being so clinical […] when you’re [helping] a human being is somewhat not a great approach, I think. If we can keep on going down that road of dismantling stigma and discrimination and looking at just the issue of getting it treated and treating everyone equally regardless of their choices […that would be a] great step.