After Cure: Health and Life in General

NOTE: 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 interviewed for this website express a range of views about their health and vitality after hepatitis C treatment (see also, Reflecting on experiences of treatment and cure). For some, treatment was a positive experience that led to feelings of optimism about the future and ongoing changes in how they manage their health and wellbeing. For others, treatment experiences didn’t have long-term significance and hepatitis C was simply something they no longer considered relevant. While treatment may have cured them of hepatitis C, many say that they have ongoing concerns about the impact of the virus on their health, and they engage in routine hepatitis C–related testing and monitoring. Some participants who inject drugs express concerns about reinfection, and they adapt their injecting practices to reduce this risk. Some discuss hepatitis C as one of a number of health issues that they’ve continued to manage since treatment. Related to this, some say that post-treatment life could be improved by access to more support (see also, Dealing with stigma and discrimination). A few people had such positive experiences of treatment that they engage in informal and formal advocacy and peer work to improve treatment access and wellbeing for others (see also, Perspectives on the new hepatitis C treatment).

Read on for details about health after hepatitis C treatment and cure.

Looking after health and wellbeing

The people we interviewed for this website offer a range of different perspectives on the meaning of cure for their everyday lives. For some, cure led to them having a greater focus on their health and wellbeing, often by adopting practical strategies to look after them. These strategies include eating regularly and having a balanced diet, drinking less alcohol, exercising and seeing family and friends. For many, while welcome news, a hepatitis C cure addressed only one of a range of health issues that needed their attention.

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.

Stuart (M, 46, experience with old [interferon-based] treatment) describes focussing more on diet and exercise, and stopping drinking following his treatment and cure. (Read his personal story here)

I try to live as healthy as I possibly can with diet. I don’t drink and I don’t smoke. It’s really my wife who, told me really clearly about the risks of alcohol. I don’t think I got that message from my treating doctors, but she’s a GP, and she woke me up to the need to really just stop drinking completely. You know, with cirrhosis,* it’s like, ‘Duh, bit obvious’, but I hadn’t made that decision, and once I made that decision, I felt like, ‘Yeah, that’s really something I can do now. Just have zero alcohol intake.’ And yeah, I guess I’ve been aware that coffee seems to be pro–liver health. I don’t know if that’s still the case, but I had … Well, I don’t think they understand why – but I think maybe I need to update my information there – but I love coffee and I’ve sort of also thought about the way it might help the liver, so, but I try not to have salty food and fatty foods, that sort of thing.

Rohan (NB, 38, experience with both new [DAA] and old [interferon-based] treatments) says that the break they took from drinking while living with hepatitis C helped them realise that it contributes to their anxiety. While Rohan considered returning to drinking following treatment, they decided to stop altogether. (Read their personal story here)

Yeah. I mean, I didn’t drink alcohol when I was living with hep C, just because like … mostly because I didn’t have a high tolerance. It was also, like, making my liver, that was already under pressure, having to work, and, like, I got a really bad taste and kind of a bit of a reflux when I was drinking alcohol. So, when I [was cured of] it, I was like, ‘Oh, cool. I can drink again now.’ […] What I realised is that actually, like, alcohol causes me anxiety, yeah, and I always thought, like, when I was younger, I was, like, smoking cannabis and drinking and I was just, like […] ‘Oh, it’s the cannabis’, and actually, no, cannabis doesn’t give me anxiety, it’s the alcohol. So, I just don’t really drink, because I don’t like the anxiety after it.

Another common theme in our interviews was the need to continue managing other ongoing health issues after being cured of hepatitis C. For several participants, hepatitis C had been only one of a range of health issues they had to manage.

Dave (M, 65, experience with both new [DAA] and old [interferon-based] treatments) describes concerns shared by several participants when he explains that he has other health conditions still needing treatment. (Read his personal story here)

I do have an old back injury, but that’s not going to change. It’s being treated, I am living with it. I am doing physio for it, so yes, I need a hip replacement, but other than that, I am quite healthy. My dental health, my teeth are looked after quite well. I regularly see the optometrist every two years and get an update for my glasses. I went through physio for my back and stuff, and I exercise quite regular. I do my exercises reasonably regularly […] I look after my health. I don’t drink a lot. I am not using IV drugs. I will have a joint at a party [but] I won’t go looking for it. I am in the process of giving up smoking again.

Carol (F, 58, repeat diagnoses, experience with new treatment [DAAs]) was cured of hepatitis C but describes still needing to pay attention to her diabetes and diet. (Read her personal story here)

I have a little bit of trouble in my legs, but […that’s] part of having type 2 diabetes […] I still do what I was doing [during treatment]. I try and walk, I’ve got a [dog], so we walk every day […] I still like to eat [some treats], you’ve got to live, you know what I mean? There’s no point in eating fruit and vegetables and being depressed because you would feel like you’ve got no quality of life […] It’s just listening to your tummy and doing what’s best without sort of going overboard. At the moment, we are carving out cheese. Like I had a little run on cheese, and I find cheese with a high fat content, it’s got to go. Milk chocolate’s got to go.

Testing and support after treatment

Most of the people interviewed for this website don’t describe ongoing liver problems or requiring ongoing tests of their liver health. However, for some, ongoing testing and support is a feature of everyday life following treatment. Some of these tests are due to long-term hepatitis C-related matters such as monitoring of liver health, including liver disease and cirrhosis. Others, such as regular blood tests, were due to the ongoing risk of acquiring hepatitis C again.

Monitoring health, such as liver function, is often important for people who have completed hepatitis C treatment. While health services may not always follow up after treatment is completed, health service users can get in touch with their healthcare provider for more information about health after cure. For information on how to get hepatitis C treatment, see our Resources and Information page.

Stuart (M, 46, experience with old [interferon-based] treatment) explains that while he ‘got rid’ of hepatitis C, he continues to have regular medical tests to monitor his liver health. He says that even though he doesn’t think about hepatitis C specifically very often, his health issues remind him that he needs to look after his body so he can live as long as possible. (Read his personal story here)

I mean, when I think of it, I think, ‘Yes, I got rid of it’, but I’m aware […that] the state of my liver is not great, and with cirrhosis, you know. I’ve got some portal hypertension as well […] That weighs on me a bit. Like, I feel like, ‘Yeah, I’ve just got to get this body … get as much out of it as I can.’ You know, I’m 46 and I’d like to be around for as long as I can, and if I’m having these problems at this age, you know, I just want to make sure I do everything I can to get as much out of it as I can and be around for as long as possible. Yeah, I don’t think about hep C, but I think about the lasting impact it’s had on my body.

This was not the case for all participants, however, with some people describing little testing after treatment. Chris (M, 60, experience with new treatment [DAAs]), for example, explains that he ‘didn’t really have any other [tests or follow-up]’ after his cure was confirmed. He also explains that he had to initiate all follow-up tests related to his hepatitis C.

Other people describe ongoing post-treatment healthcare delivered through GPs, liver specialists or other health professionals.

Terence (M, 34, experience with new treatment [DAAs]) explains that his doctor encouraged him to have ongoing liver monitoring and gave him information about reinfection and support. (Read his personal story here)

Yeah, yeah, my doctor was very good with that stuff and encouraged me to get a liver function test at least every 12 months. Yeah, he gave me some information and, yeah, sort of invited me back anytime I needed any further assistance or information. [He said] that I could come back and then also sort of went through the whole, you know, ‘Just because you’ve [been cured of] it, it doesn’t mean that you can’t catch it again’ sort of thing. Like, [he said,] ‘If you return to injecting drug practices or put yourself in other high-risk situations, yeah, you can still contract the virus. Like, the treatment doesn’t give you any immunity to it.’ So yeah, they were good in that aspect.

While tests confirmed that Lou’s (F, 40, experience with new treatment [DAAs]) liver was healthy, she described wanting more information than she received about issues to consider after being cured. (Read her personal story here)

Because I asked him that specifically. I said, ‘So what do I need to do from here? Do I see you again in a few years, what happens?’ And he was just again, that dismissive, ‘No, everything is fine, don’t worry about it again, everything’s fine.’ […] Yeah, it would be helpful to know certainly about, you know, any signs or symptoms of anything changing. It would be helpful to know of, you know, if there were any screening programs that would be recommended to me. It would be helpful to know what is best practice in terms of, you know, the ongoing management of somebody who’s had the illness for so long. I feel like I don’t know much about that. I feel like all of that information is geared around, yeah, how to prevent yourself from getting it again through safe needle use, yeah.

Concerns about the future

Many describe the ways their experiences with hepatitis C and treatment shape their thoughts about the future. Several participants explain that while they had been cured of hepatitis C, they have ongoing concerns about their health. Some, for example, worry about their liver health, while others fear that they may acquire hepatitis C again. Offering a different perspective, some people interviewed for this website say that hepatitis C isn’t an ongoing concern and that they rarely think about it any more.

While being cured of hepatitis C was a positive experience for many, for some participants such as Regina (F, 69, experience with new treatment [DAAs]), the long-term health effects of hepatitis C remain a concern. (Read her personal story here)

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, 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.

Others worry that cure is only temporary or incomplete, and that hepatitis C might affect them again. Some say that they worry the virus might re-emerge in their body or ‘come back’ spontaneously, while others think about reinfection because they inject drugs.

To find out more about hepatitis treatment processes and aftercare, visit the Hepatitis Australia website.

Even though she had been cured of hepatitis C with the old treatment and no longer injects drugs, Trish (F, 41, experience with old [interferon-based] treatment) says that she questions whether the successful treatment results were accurate. (Read her personal story here)

I ended up having to go back to the doctor who originally told me I had hep C. He was my prescriber. I went back to him, and I had asked for the follow-up blood test: I had to ask them. He just let me go through the treatment, and that was it. He didn’t do any [follow-up] tests. They didn’t do any tests and, yeah, I ended up actually asking him [for a test] and it was about two months or three months after I had the treatment. I said, ‘Can you do my bloods again and tell me if anything comes up, if I still have hep C?’ and he said ‘No, [we won’t do another test]’, and even after he said no, I was still worried about that. Afterwards, when I asked my GP, months after that, I had another blood test and asked him to tell me anything that came up, and they said ‘No’, but then […] 10-plus years later, I still asked for it again. So, I think there’s always that little bit of paranoia that somebody has got it wrong and it’s still there.

Unlike Trish, most participants were confident about the accuracy of their test results. Regardless, several participants – especially those who inject drugs – were worried about the potential of future reinfection.

According to Chris (M, 60, experience with new treatment [DAAs]), since finishing treatment he is more ‘careful’ in how he manages his injecting, to minimise the risk of reinfection and to look after his health. (Read his personal story here)

So, I think when you are in your twenties, when you’re young, you think you are invincible. You have lots of energy, nothing is going to be a problem, you just take risks. You don’t even know. But with the training I have had from my job and the life experience, I am going to be much more careful, and I don’t want [my injecting] to be [a] compuls[ion] or an anxiety, but I do want it to be a safe practice. [I want to have] clean living and clean health and clean practices around risky things like taking drugs.

For others, following treatment, hepatitis C was no longer an issue or part of their lives. These participants place hepatitis C in their past, and many say that it isn’t something they think about very often any more.

James (M, 41, experience with old [interferon-based] treatment) says that he no longer thinks about hepatitis C since he has been cured. He says that given his successful treatment outcome, hepatitis C is no longer relevant to him, and it only occurs to him when he sees the local GP who managed his treatment. (Read his personal story here)

No […I don’t think about hepatitis C] at all, actually […] When I take my wife to our local GP, obviously they know me [and know that I’ve had hep C] because they helped me get [treatment], you know. In fact, he was the one who referred me [to treatment]. Anyway […] it’s not an issue now, so we don’t ever currently discuss it. It’s just not applicable to me. It’s sort of, you know, it’s done and dusted and in no way, shape or form [does] the fact that I have had hepatitis impact or [have] relevance [for] my life really, so it just never comes up. I just don’t even think about it, you know, unless I hear the words ‘hep C’ and I go, ‘Oh yeah, you know, I had that and I [was cured of] it.’

Reflecting on life after treatment

For the people we interviewed, being cured of hepatitis C impacted their lives in different ways. For some, finishing treatment was a significant event connected to a range of other shifts in their lives. For others, their cure was less significant, as many other aspects of their lives remained the same. Together these experiences indicate that while treatment is an important event for many, it addresses only one of a range of issues and concerns in life for people affected by hepatitis C.

Being cured of hepatitis C was ‘life-changing’ for Marty (M, 65, experience with both new [DAA] and old [interferon-based] treatments). He says that he has a success story to tell others, and since completing treatment has been doing formal advocacy work with a hepatitis advocacy organisation. (Note: strong language) (Read his personal story here)

From that day when the virus was cured, that was life-changing, because I had a story to tell others of success […] I went to a federal inquiry into living with hepatitis [C] in Australia. After I told my story, a politician called Ken Wyatt* came straight over to me, shook my hand, gave me a hug, he’s a Koori fella, [and] gave me his card […] Then, I went down to Canberra during this time. I saw Sussan Ley* personally. The Pharmaceutical Benefits Advisory Committee came up to Sydney to see me, not to have a cup of tea or see her [Sussan Ley], to see me […] When you’ve got the Pharmaceutical [Benefits] Advisory Committee coming up from Canberra to see me, you know, there’s a bit of ego there, but there’s also a bit of authenticity for me, you know, like, ‘Fuck! You know, these people are interested in me, you know, in my story.’ You know what I’m saying.

Colin (M, 44, experience with both new [DAA] and old [interferon-based] treatments) explains that his life has changed significantly since being cured of hepatitis C. For him, being cured meant he felt able to pursue a romantic relationship, and it was also connected to a range of other positive changes in his life. (Read his personal story here)

I hadn’t had any intimate partners for a long time, because I lost a partner when I was 20 and wasn’t in a relationship, actually, had nothing for about 18 years, you know. And then with the hep C, I just thought it was too much of a risk. Like, I had it in my head [that] it was too risky, and stuff like this or whatever, to transmit it on to a partner, and no-one deserves that sort of thing, you know. Getting it off your back, like, I guess as far as intimate partners [go], like, I need connection in my life with someone, you know. I need to share my life with someone, and that made that hell of a lot easier to, I guess, go and pursue that. And I think my family have only been back in my life probably four or five years, you know, and they have definitely … like, they have seen the change and the effort that I put in, you know what I mean. I have worked incredibly hard to get to where I am at.

Since completing treatment, Dave’s (M, 65, experience with both new [DAA] and old [interferon-based] treatments) life has changed in several significant ways. He speaks about getting involved in a campaign promoting hepatitis C treatment, but also says that he continues to face other health issues. (Read his personal story here)

I have made a lot of connections with people who I’d never thought would be in my life, and a lot of that has come through working [on a campaign to increase treatment uptake]. I am meeting politicians […] I am talking to people about sort of expanding drug treatment facilities. I am a team leader of a group of people with lived experience who are part of a campaign. I am also co-editor of […] a newsletter [for a service…] I also edit a […] Facebook page [on treatment]. None of that would happen if I hadn’t stopped using [drugs], and none of that would have happened if I hadn’t sort of [been] cured [of] hepatitis C […] Yeah, getting rid of hep C and putting down the IV drug use has greatly changed my life […] I realised how old I am, you know. There is not another 50 or 60 years in front of me. I am sort of going to have to accept that, you know, and my body is sort of breaking down. I am going to need another hip replacement in a few years’ time, on the other hip. I have a back injury […] I crushed a lot of vertebrae in my back, but I can work around that sort of stuff, you know […] My life has changed completely.

Terence (M, 34, experience with new treatment [DAAs]) explains that while being cured had a positive impact, it occurred at the same time as a series of other positive shifts in his life. (Read his personal story here)

I suppose emotionally I felt better [once I was cured]. Physically, I would probably say yes, that [the cure] contributed [positively], but I was going through a lot of changes in lifestyle as well at the time. Yeah, when I [was cured of] the virus, that was a huge emotional baggage lifted from my shoulders […I also] probably just start[ed] to make better choices in life. Yeah, that’s about it really […] I decided to go and study instead of work. Typically, I’d worked in the meat industry and labouring and stuff like that, so yeah, it was pretty big for me. I didn’t really go to high school, probably got a Year 7 education, and I decided around that time in my life that education was something that I wanted to pursue, so yeah, I signed up for a course at university.

In contrast, Sean (M, 42, repeat diagnoses, experience with new treatment [DAAs]) discusses how his life hasn’t improved a great deal since being cured of hepatitis C in 2019. (Note: strong language) (Read his personal story here)

[My life hasn’t changed], not because of not having hep C, no […] My life isn’t that great, and I couldn’t give two shits whether I have it or not, you know. Yeah, I’ve got a pretty bleak outlook, you know […] I’ve just got a lot of stuff going on. You know, [my ex-partner], she’s my wife, I’m married to her, and I don’t even know where she is […] No idea where she is. I just know that she’s a mess and I can’t find her.

While Kylie (F, 46, experience with new treatment [DAAs]) says that being cured of hepatitis C made her ‘happier’, she still faces discrimination related to her appearance and residence. (Note: strong language) (Read her personal story here)

It’s funny, I’ve always been skinny but I’m a lot skinnier now, because I can’t have a lot of weight on my legs because of injuries [from a car accident] and, like, my son’s friends say to him – I don’t even look like I take drugs – but they say to him, ‘Oh, your mum is still on drugs, she’s so skinny’ […] It’s upsetting a little bit, like, that he has to deal with things like that, but he said it comes with the fact that as soon as you say you are in the housing commission house, everyone is supposed to be on drugs in [a] housing commission house, which is bullshit.

Gracie (F, 65, experience with new treatment [DAAs]) says that while she’s glad to be cured of hepatitis C, her life hasn’t changed dramatically since completing treatment. (Read her personal story here)

I struggled with hep C for 20 years, and miraculously the new medication worked with me, but I struggled sometimes in those 20 years, especially when I was thinking about entering sexual relationships and stuff about disclosure […] There’s nothing I really want to do that hep C … if I was a young woman and sexually active, this would’ve been a massive improvement in my life, but I’m not, I don’t care, and everything’s cool.

NOTES

* Cirrhosis of the liver is scar tissue in the liver caused by inflammation of liver cells. The scar tissue reduces blood flow through the liver. The liver then can’t do its work as well as it should. Cirrhosis of the liver can be caused by a range of issues including hepatitis C.

* The Pharmaceutical Benefits Advisory Committee is an independent expert body providing advice to the Australian Government about which drugs and medicinal products should be listed on the Pharmaceutical Benefits Scheme and subsidised by the government.

* Ken Wyatt is a former assistant minister for health in the Australian government.

* Sussan Ley is a former minister for health in the Australian government.