Reflecting on Experiences of Treatment and Cure

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. Ellipses without square brackets indicate a pause. 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 we interviewed for this website describe different experiences of hepatitis C treatment. They primarily discuss the new direct-acting antiviral (DAA) treatment, but some also recount experiences of the older (interferon-based) treatment. They report a range of different issues – often related to the kind of treatment they had – that affected their experiences, including treatment knowledge, different kinds of support, experiences with health professionals and, for those who had the old treatment, side effects. Family and friends also feature in their treatment stories (see also, Treatment decisions: Family, friends and other important relationships).

Most participants who had the older interferon-based treatment recall unpleasant and difficult treatment experiences. They often talk about severe side effects and uncertainty about treatment outcomes.

While most of the people we interviewed who had received the new treatment report positive experiences, some mentioned needing further information about treatment and more support following treatment.

Many participants also recounted positive interactions with health professionals that made the decision to begin treatment easier. However, issues such as uncertainty about treatment are also mentioned (see also, Obstacles to having the new hepatitis C treatment).

Many of the people we interviewed had been cured of hepatitis C, either with the new or old treatment. What they mean by being cured varies, but what they describe is often connected to improved health and wellbeing, feeling positive about the future and increased vitality more generally.

Experiences of the new, direct-acting antiviral (DAA), treatment

The vast majority of people interviewed for this website recall positive experiences with the new hepatitis C treatment (see also, Perspectives on the new hepatitis C treatment). By contrast, discussions of the old interferon-based treatment often focus on difficulties. Some participants were able to comment on both types of treatment.

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.

According to Dave (M, 54, experience with both new [DAA] and old [interferon-based] treatments), the new treatment was much simpler than the old treatment. He also says he was more confident when he began the new treatment, due to its high success rates. (Read his personal story here)

I thought, okay, you have had a crack at this twice on the interferon and it didn’t work. But they have come out with this new medication that’s only 12 weeks long, it’s only a tablet, it’s not an injection into your belly any more, the side effects don’t look anywhere as near as bad as what you were previously used to, and the success rate, the rate of sustained [virological] response, was much higher than interferon. It was in the high 90s and the interferon was, like, 70 to 75 [percent], you know, and I had spoken to people who had taken the Harvoni [medication] and they said, ‘Oh, Dave, it’s great, it’s just, you know, you got to remember to take your meds, that’s all you got to do’.

For many of the people interviewed, as Dave’s comment suggests, the absence of side effects from the new treatment is one of its best features (see also, Perspectives on the new hepatitis C treatment for more views on the new treatment).

Lou (F, 40, experience with new treatment [DAAs]) explains that she consulted her cardiologist before starting treatment, because she was managing other health issues at the time. She recalls not experiencing any side effects and describes the treatment as a ‘non-event’. (Read her personal story here)

I think I took three tablets a day for 12 weeks. I didn’t have any side effects. I was told that the side effects would be minimal, and […] they were. I was concerned about, you know … I did talk to my cardiologist first. That all had to be cleared between the infectious diseases doctor and my cardiologist and my GP, because I’m taking aspirin for my heart, so there was no issues there. I’d finished breastfeeding, so that was fine. Yeah, three tablets a day for 12 weeks. I didn’t have any side effects, and then I had a blood test at the end of it and was told, ‘Okay, great, it’s gone. You are all good.’ It was all sort of […] a bit of a non-event really, which is good.

Tristan (M, 49, repeat diagnoses, experience with both new [DAA] and old [interferon-based] treatments) says that, in contrast to the older treatment, he didn’t experience any side effects when he was having the new treatment. (Note: strong language) (Read his personal story here)

He [the doctor] knew my experiences, it was all in my file there. So, he knew my experiences with interferon, and he said, ‘No, it’s not going to be like that. This drug, blah, blah, blah, blah [will have few side effects]’, and it was exactly how he said it was going to be. No side effects, nothing at all. Whereas with the interferon, you’d get to the end of the week, you’d start feeling good because all the drugs are wearing off, and you’d have to stick yourself in the belly again and an hour later, you feel like dog shit for the next five days, and then it starts wearing off and you become good, and then you stick [inject] yourself again. But the new one [treatment], that is unbelievable […] Just one tablet daily and that’s it.

Overall, the new treatment is widely considered much better than the old, but some participants indicate they would have liked more information about their condition, or about the new treatment, before starting treatment.

According to Steve (M, 49, experience with new treatment [DAAs]) he was given minimal information about the new treatment. (Read his personal story here)

No, no, I wasn’t told hardly anything. I was just handed a bottle and said, ‘Here, take this once a day’. […] I instantly linked it to giving me an extra few years of quality life you know […] I was sort of expecting to maybe feel a bit off like after I started taking it, but no, I didn’t even notice it really.

Alexander (M, 45, experience with new treatment [DAAs]) also describes being given little information about hepatitis C and the tests he had when he started treatment in 2020. (Read his personal story here)

I was on the treatment a few months ago, this new medication that they’ve got for hepatitis, and they did some sort of check then, but my liver exam is normally generally pretty good, even when I’ve been [taking] drugs […Even after the check-ups] I’ve [still] got no idea [what my genotype is].

Paulie (M, 45, experience with new treatment [DAAs]) explains that while his GP advised him to have treatment, he wasn’t informed that he could have treatment again if he was cured but acquired the disease again in the future. (Read his personal story here)

If I got it [again], I’d like to do [treatment] again, but I don’t know. Are you allowed to do it again? If I had hep C and I’d done the treatment and [been cured of] it and then I’ve caught it again, can you reapply and get the treatment done again, or [do] they ban you or something after you’ve done it once and you get it again or something? I don’t know.

Remembering the old, interferon-based, treatment

Many of our participants report negative experiences with the older treatment and clearly recall the impact of side effects. While experiences of the old treatment vary, and many of those who were cured were happy with the outcome, the people interviewed for this website generally found this form of treatment very difficult.

Marty (M, 65, experience with both new [DAA] and old [interferon-based] treatments) acquired hepatitis C in the 1980s. He began the old treatment in 2014, and says it was unpleasant and made him sick. (Note: strong language) (Read his personal story here)

And then, I think, it was 2014, I believe, they said, ‘Your liver is starting to be, you know, pretty well affected’. So, it was their polite way [of telling me], even though they didn’t say it, [that] I was getting, or I had, fibrosis and/or cirrhosis. Still, out of sight [out of mind], you know, not turning up [to appointments]. Anyway, at the end of 2014 […] I googled cirrhosis, Google this, Google that, and I saw that this is going to get fricking serious. So, I went to the liver clinic […] I remember going in and […] they gave me this sort of … it was one of those backpacks that you could put ice in, you know what I mean? It keeps things cooler, and everything was in there, you know, the injection, all the rest of it, the interferon, I’m talking about, and I was excited […] Anyway, I’d gone home, done the injections, I was on it for six weeks, and I’m telling you, for me, interferon was deadset lower than shark shit. It was the worst thing I’ve ever tried. It made me sick.

When Harriet (TW, 30, experience with both new [DAA] and old [interferon-based] treatments) decided to have the interferon-based treatment in 2012, she was given little information about the side effects, and she was offered little support. (Read their personal story here)

I wasn’t given, like, an option […] it was either [the old treatment] or nothing […] I did consider the nothing, and then they told me that I could get really sick and die, so you know […] You would walk into the [treatment] room and they completely separate you from the other patients and stuff. They’d make you feel like you’ve got something really, really bad and, you know, ‘We’ve got to stick this stuff into you which will drain you of your energy and your life and your happiness.’ It was bad. It was bad. I actually felt like I was being set up […] Yeah, I didn’t trust them. I wasn’t getting what I was told I was going to get. I got really, really sick when I did the treatment […] I was vomiting, I was weak, my hair fell out, I wasn’t eating, my anorexia came back […] They put you on the treatment and then they just [left] you be, you know, but there was no support around it. There was no support, so I felt alone. I didn’t know whether I was going to die today or tomorrow – there was no support.

Another issue commonly discussed by the people interviewed for this website was the impact of the old treatment on their social life, relationships with friends and feelings about the future. Some participants who hadn’t had interferon-based treatment themselves describe the difficulty of watching friends and loved ones undergo distressing and sometimes ineffective treatment regimes.

Mem (F, 41, experience with new treatment [DAAs]) says that it was ‘sad’ watching her friends have the interferon-based treatment. (Read her personal story here)

I grew up with a lot of people around me that were drug users, and a majority of them went through the interferon. They were older than I was at the time. Interferon was the only thing available, and it killed their lives. I watched them waste away and it was a sad process, so this [new] treatment is a great thing.

In contrast, a couple of the people with experience of interferon-based treatment found its side effects weren’t as bad as they had been led to believe.

Trish (F, 41, experience with old [interferon-based] treatment) explains that the side effects she experienced while having interferon-based treatment weren’t as significant as she expected. (Read her personal story here)

I was told at the hospital that there could be side effects, but I wanted to get it done […] I mean, they gave some stats about […] how bad it could be, but I wasn’t worried about that, I just thought, ‘Well if it gets rid of it, it gets rid of it.’ […] For me, it probably wasn’t as bad as all of the side effects [I was warned about]. I used to get sick shortly after the injections [and…] I used to get a bit worried about it, but I came through it pretty good compared to, I mean, to [the] side effects that [I was told about].

Thinking back to when she had treatment, Rebecca (F, 34, experience with old [interferon-based] treatment) remembers her loss of appetite as its primary side effect. (Read her personal story here)

My doctor gave me a referral to the hep C clinic at [a] hospital and the doctor prescribed, you know, told me [about] the program and put me on it. So once a week I was doing the interferon and having two tablets a day […] I did it for the whole 12 months […] I wasn’t really hungry [during the treatment]. I never got hungry much, so I didn’t eat much […] Other than that, everything was okay […] I was warned about it, but I was all right because I had my family around me […] I never let them see me inject the interferon [though…] because I felt ashamed and embarrassed, but other than that it was okay.

Cassandra (F, 47, experience with old [interferon-based] treatment) says that working helped her manage the side effects of the interferon-based treatment. (Read her personal story here)

Well, I was working and I didn’t really want to have to do the interferon treatment, because I knew that it was going to affect me physically as well as mentally, but I am actually really glad that I did it while I was working, because it motivated me to work […] As I look back on it, like, I have talked to a few people and they said, ‘I don’t know how you worked during the treatment,’ and I sort of went, ‘Well, I had no choice really.’ Well, I did have a choice, but [working] helped me get through the treatment. It helped me to know that I had something to do every day and not to think about what I was going through […] Afterwards it helped me realise that I did do a good thing by working.

Giovanna (F, 58, experience with old [interferon-based] treatment) describes the kinds of advice she would have liked to give to herself before she began the old interferon-based treatment. (Read her personal story here)

Maybe [advice to] my pre-hepatitis […] treatment self would be, you know, ‘You will go through this treatment and it’ll be occasionally hard, but you will get through it. Then, you will still travel overseas. You will run four kilometres, you will run 10 kilometres. You might not see this now while you’re sitting in the doctor’s office waiting for your FibroScan or thinking I’ve got three months’ treatment [to go], but you will get through it. These are the things that might happen, and this is how you can come out the other side.’

Interactions with health professionals

Many people we interviewed recounted their experiences with the health professionals who managed their hepatitis C treatment. Health professionals were instrumental in guiding people into treatment and had an important part to play in their treatment experiences overall. Many of the people we interviewed say that health professionals described the new treatment as simple and easy, and encouraged them to consider it.

Rod (M, 41, repeat diagnoses, experience with new treatment [DAAs]) talks about how a doctor encouraged him to begin treatment. (Read his personal story here)

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.

Many of the interviews focussed on what good healthcare looks like for hepatitis C treatment. Many participants said how important it is to have access to knowledgeable and thorough healthcare professionals who take an active role in treatment and provide care and support.

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. (Read her personal story here)

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 when] 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.

Colin (M, 44, experience with both new [DAA] and old [interferon-based] treatments) describes the way his doctor took charge of his treatment and displayed an investment in his future and wellbeing. (Read his personal story here)

I had a really good doctor, really, really compassionate doctor who listened to me, who understood […] He informed me about what was going on and he organised everything, like, he took the driver’s seat, you know what I mean, and [he] really did, you know what I mean. It was more than just bedside manner, like, he showed a vested interest […] He saw more worth in me than what I had in me at that moment, you know. I probably only had a little spark, but he saw that I was worth pushing this through.

Cassandra (F, 47, experience with old [interferon-based] treatment) also discusses how helpful it is to have regular contact with a health professional during treatment. (Note: strong language) (Read her personal story here)

I saw a doctor […and] he basically said I needed to just look at my health a bit more. [To begin with] I looked at it as more of a slow … a thing that I didn’t really need to get rid of, you know what I mean, yeah, until he explained to me [that hep C is] something that, you know, can kill you in the long run. [During treatment I was also seeing other health professionals] every week. I found it helpful, yeah, and even having to go and pick up medication every week was fine, you know. I was seeing someone, talking to someone if I had to, yeah, they were really good. That’s what you need while you do a treatment like that.

According to Heather (F, 67, experience with both new [DAA] and old [interferon-based] treatments), the nurse she saw on her first round of treatment ‘did a lot of work’ in looking after her health and wellbeing. The nurse even helped Heather find a new psychiatrist when she said she wasn’t happy with her previous one. (Read her personal story here)

I can honestly say, I had the right nurse at the time. She was just very quietly [and] confidently, reassuringly saying, ‘Right […] we will work through this in your way, and if you are not happy with that, how about I ring around and find a psychiatrist that you might be happy with?’ In private she did a lot of work, and she did put in a lot of work, and I think when you get someone like that, at that point in time, it can be so beneficial. She was just perfect, and she did find a psychiatrist and she spoke with her and gave her a lot of background about what were we doing. She managed to do it, so I saw someone privately with no fees so, you know, I could not have asked for more.

Sana (F, 71, experience with new treatment [DAAs]) says that the health professionals managing her treatment were ‘fantastic’ and very respectful. (Read her personal story here)

Every person during the treatment was fantastic […] Even the nurses […] the ones that work under a specialist, they are so helpful. […] They were very helpful and […] they speak nicely. When they know that I can’t understand English, they speak, like, [a] little bit slowly and just on the targeted words and with a smile, facial expressions, and they give [me…] full respect.

However, even though treatment was known to be simple and easy, some people recall wanting more detailed information from health professionals about hepatitis C or how treatment works.

Sam (M, 35, experience with new treatment [DAAs]) describes his GP’s approach as comforting but not informative enough. (Read his personal story here)

I thought [being diagnosed with hepatitis C] was a life sentence, and I went and saw my GP and got tested and, yeah, like, he was pretty blasé about it, you know what I mean. He said, ‘It’s so easy to get cured from it, there’s no reason to be getting upset.’ It sort of made me feel a lot more comfortable with it, in all honesty, but in saying that, I still really didn’t understand it and I didn’t ask the questions … like, I didn’t get the answers from him that I should have been getting. In saying that, I didn’t ask questions to him to fully understand what I was dealing with […I would have liked to have known] just how it affects the body, you know, what am I going to be going through as opposed to someone who didn’t have hep C. You know, how it’s really going to affect my day-to-day life.

Experiences of cure

The people interviewed for this website offer a range of different perspectives on what being cured means and how it affected their everyday lives. Some explain that it led to improvements in health, vitality and wellbeing, while others express concerns about hepatitis C returning in the future. Overall, our participants’ descriptions of being cured indicate that, while it’s generally a positive experience, its effects are not uniform and are instead shaped by personal circumstances.

For detailed individual stories of hepatitis C treatment and cure, please visit the ‘Personal stories’ section of this website.

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) (Read her personal story)

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.

Kylie (F, 46, experience with new treatment [DAAs]) says completing treatment got rid of the frequent headaches she had experienced and improved her mental health. (Read her personal story here)

I shout it from the rooftops […] Yeah, it’s just made me happier […] Well, [being cured] made me feel better, because I don’t suffer from the headaches that I used to suffer from all the time, and I don’t feel as depressed as what I did when I knew that I had hepatitis. So yeah, it’s made me feel happier within myself.

Many of the people we interviewed described feeling great emotion after being told they were cured of hepatitis C. Feelings such as relief, happiness, joy and optimism were common.

According to Lou (F, 40, experience with new treatment [DAAs]), while she is not comfortable speaking with many people about her experience of hepatitis C, her treatment experience and cure led her to reflect on what was meaningful in her life and now informs her practice as a social worker. (Read her personal story here)

I think [my cure’s] probably, you know, added to the richness of what’s meaningful in my life, and I think it’s probably made me a better social worker. It’s certainly helped me maybe, yeah, reflect on some of my own assumptions and biases that I didn’t realise that I had. I think I have always thought that maybe one day I would like to be able to talk a bit more about it publicly. Perhaps that day will come, perhaps it won’t, but yeah […] And […] maybe it’s added to my thinking that you just don’t know what’s coming around the corner, so just make the most of it. It sounds a bit like a platitude, but really, just to make the most of what’s in front of you right now.

For others, like Lee (M, 45, repeat diagnoses, experience with old [interferon-based] treatment), who didn’t experience side effects from the interferon, being cured of hepatitis C was connected to feelings of pride that he had completed the treatment with ease and created positive change for himself. (Read his personal story here)

Part of it made me feel invincible, you know, because I was told that I will be getting all these side effects and every month when I would go in to see the specialist and have the blood work done, they will be like, ‘You know, how are you, and how are you sleeping and how are you eating?’ and I am like, ‘Fine, you know, nothing at all’. So, it made me feel invincible. It also made me feel positive that I was sticking to, you know … like, I did heroin all my life, so I’d never really stuck to anything positive for myself and seen it through – anything, actually, not anything. So yeah, that was a good marker for that, I suppose, a change in behaviour.

According to some of the participants, being cured also meant feeling free of worry about passing on hepatitis C to other people, and being more optimistic about the future.

Miguel (48, M, experience with new treatment [DAAs]) started having treatment during a period in which he was making other positive changes in his life. He describes being cured as offering him renewed optimism and vitality. (Read his personal story here)

As soon as the treatment started, I started feeling not much difference, but [then I started to feel […] a fresh new start kind of feeling, you know […] At that time […] I found some work, and also [other] things were falling into place, and I [wasn’t taking drugs any more]. On top of that, [I was also thinking…] that soon enough I would get rid of hep C and then I [wouldn’t] have to think of it ever again. [I wouldn’t have to ask,] ‘If I cut myself, who’s around?’ […This] stuff weighs on you, and feeling like you are less than others because you’ve got this disease. So yeah, I reckon […] I felt relieved and stronger and just able to look at the world with a new set of eyes. I felt I had an influence on the people around me too, because I was like, ‘Okay, things are finally working out’: rehab, this [new] work and now a clean bill of health. Yeah […] it worked so fast as well. The treatment was […] about three months and the doctor […] said, ‘Yes it’s definitely cleared up’, whereas for years, we didn’t have a clue [what] we were going to do. There was no cure or hope in sight, and then all of a sudden, there it is, you know what I mean?

Some people explain having a different response, one not totally free of worry about their health and future, as they consider the longer-term health effects of having had hepatitis C or the potential for it to come back (see also, After cure: Health and life in general).

For Regina (69, F, experience with new treatment [DAAs]), while being cured of hepatitis C was a ‘relief’, she worries about developing liver cancer in the future. (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 [correctly], 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.