Perspectives on the New Hepatitis C Treatment

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, 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.’

This website presents many different experiences of hepatitis C treatment. It includes the views of people who have had the old treatment, people who have had the new treatment, people who have had both, and people who have hepatitis C but haven’t had treatment, as well as the views of people who are unsure of their current hepatitis C status. This section of the website presents perspectives on the new hepatitis C treatment. Because experiences of the new treatment were almost exclusively positive, involving little effort or fuss, the comments are quite brief. However, this brevity shouldn’t be taken to suggest the topic wasn’t important to participants. The ease of new treatment and its high success rates were highly valued by participants and vital to their treatment experiences.

A few of the people we spoke to who hadn’t yet experienced the new treatment expressed some concern or doubt about it (see also, Obstacles to having the new hepatitis C treatment), while several others had heard good reports from others and were interested in trying it (see also, Treatment decisions: Family, friends and other important relationships).

Read on to find out more about what people think of the new hepatitis C treatment.

The new treatment, direct-acting antivirals (DAAs): Simple and easy

Participants with experience of the new treatment generally described it as ‘simple’ or ‘easy’ to take. Comments were almost wholly positive, often focussing on the treatment’s minimal side effects or explaining how easy it was to include it in daily routines.

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.

Dave (M, 65, experience with both new [DAA] and old [interferon-based] treatments) says that the new treatment was ‘quite easy’ to incorporate into everyday life, and he explains that he encourages others to have it too. (Read his personal story here)

It was just a bottle of tablets that was sitting next to my vitamins, which I had every morning. I took them at seven [pm], every night I took them at seven, so quite easy […] I have friends who still have hepatitis C and I try and encourage them to get treatment […] Good hep C treatment [should be] available to everybody whether they are using drugs or not […] It should be freely available to everybody.

Sam (M, 35, experience with new treatment [DAAs]) offers a similar assessment when he says treatment couldn’t have been ‘any easier’. (Read his personal story here)

I don’t think that you could get anything better than taking one tablet a day. You couldn’t get it any easier than that […] For people having treatment down the road in the future, like, yeah, as long as they can stay on top of it, I don’t think you could make it any easier than one tablet a day.

For some participants, treatment was so uncomplicated, there wasn’t much to say about the experience.

Robbie (M, 54, experience with both new [DAA] and old [interferon-based] treatments) had the new treatment at the same time as his friend. (Read his personal story here)

[My friend and I] heard about this new program, the tablets, and then the friend I’m staying with, we both got on it and both got rid of it within [the first] month […We heard about it] from the doctor […who said] that there was a new treatment out and it worked for others pretty good, and if you want to try, give it a go, yeah. So we did and it worked […] Yeah, it went for three months and, yeah, I stayed on the program for the whole three months, even though [the hep C] was gone within the first month.

Because the old treatment was known for very significant negative side effects that diminished quality of life, many of the people who had the new treatment explained that they were relieved by and happy with the simplicity of the new treatment. Harriet (TW, 30, experience with both new [DAA] and old [interferon-based] treatments), for example, reports that it was ‘the best thing [she] ever did for [her]self […] because there are no side effects or anything’. Similarly, Terence (M, 34, experience with new treatment [DAAs]) says that for him there were ‘no side effects whatsoever’, and Regina (F, 69, experience with new treatment [DAAs]) explains simply that for her there were ‘no side effects, and it worked and it was fantastic’.

Commenting on the absence of side effects for him, Tristan (M, 49, repeat diagnoses, experience with both new [DAA] and old [interferon-based] treatments) compares the new treatment favourably to taking headache medication. (Note: strong language). (Read his personal story here)

I was expecting there to be some sort of side effects, but no. Just like taking an aspirin once a day and that was it […] 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 [inject] 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.

While Chris (M, 60, experience with new treatment [DAAs]) doesn’t speak about side effects directly, he describes the new treatment as ‘gentle’. (Read his personal story here)

I didn’t [know] what to expect, but it was so gentle and unassuming and unnoticeable. I just had this pill every day and that was it, and 12 weeks later it was done […] It was like the beginning of the disease [hep C] where you know you’ve got it, but it doesn’t bother you [with any symptoms, so you] think it doesn’t matter. The treatment was kind of the same, it was really benign and gentle.

Those who have had experience of both the old treatment and the new treatment often compare the two, saying the new treatment is much better. Colin (M, 44, experience with both new [DAAs] and old [interferon-based] treatments), for example, says that the new treatment is ‘brilliant’ and that comparing the new and old treatment is like comparing ‘apples and oranges’. Comparisons between the old and new treatments are also made by some of the participants who had only ever had the new treatment but had heard about the old treatment from those who’d had it.

Speaking highly of the new treatment, Mem (F, 41, experience with new treatment [DAAs]) says that the new treatment is especially good in comparison with treatment available in the past, which she had seen friends struggle with. (Read her personal story here)

This new treatment is phenomenal […] It’s just phenomenal, it’s great, I can’t speak highly enough of it […] You know, I can’t speak highly enough of it, because as long as I ate something before I took the tablets, I had no side effects whatsoever […] It’s great, and a great alternative to the interferon. I grew up with a lot of people around me that were drug users and […] a majority of them went through the interferon, and they were older than I was at the time and 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.

Dominic (M, 36, experience with new treatment [DAAs]) was having treatment at the time of his interview. He also compares the new treatment favourably with the old. (Read his personal story here)

Yeah, it’s been pretty good, I’m liking it. I watched people go through the interferon and, you know, it was horrible, and this is all right. I’m still functioning, [if] you know what I mean […] I [had been] thinking about [treatment], but I just didn’t want to, you know, until this new [treatment] came out […] Since there’s been this treatment, I always wanted to get on it.

Amelia (F, 41, experience with new treatment [DAAs]) describes the new treatment as the ‘best’, given she knows that past treatment could have made her ‘sick’. (Read her personal story here)

I guess [I got] a sense of accomplishment [from treatment] and, yeah, [I was] just happy that, yeah, I got better and got over it and through it with the best possible medication, as well. Like, knowing that I could’ve been on the old medication and it could possibly [have] been making me sick […] To be honest, I thought this was really a wonder drug to be able to do that, because I seriously thought that when my results would come back, [the] doctor would be like, ‘No, we’ve got to do another 12-week course’.

Not all those interviewed for this website had tried the new treatment. Some, like Rebecca (F, 34, experience with old [interferon-based] treatment), had mainly heard good reports about it from other people. (Read her personal story here)

I heard there’s a new pill and you don’t have to do the […] injection any more. And I heard this pill does the job […] People like it […] A lot of people are happy with the new product.

Rose (F, 36, no treatment experience) also explains that people she knows have told her that the new treatment is an improvement on what was available in the past. (Read her personal story here)

[I’ve heard] that [the new treatment is] pretty good, not too bad actually. As I said, […] I’ve seen people on the old one and the new one and, yeah, they are saying [that the treatments] are getting better […] So […] kudos to the new one […] Just the tablets, I think you take one every day for three months, yeah, something like that.

Mikey (M, 40, no treatment experience) explains that he didn’t know about the new treatment and he would like to see a push to increase hepatitis C testing and awareness (see also, Obstacles to having the new hepatitis C treatment). (Read his personal story here)

Yeah, I think there should be a push for an information drive, like, [letting people know that] the treatment is feasible and there is treatment that is not going to completely alter your life process, because, you know, I consider myself generally pretty well-informed on things and I didn’t even know that […increasing the rates of hep C testing is important too.] I think it’s important to know, like, what percentage of folks, especially like IV drug users, have it and have contracted it unknowingly.

Considering the new treatment

Some of the people we interviewed explained that while they had heard about the new hepatitis C treatment, they hadn’t had it yet. Their reasons for not having treatment vary: some explain how other issues can get in the way (see also, Obstacles to having the new hepatitis C treatment), while others want to know more before starting. The accounts that appear here reflect that people living with hepatitis C are often juggling a range of issues and concerns, and sometimes need support to have treatment amid life’s other challenges.

While Cal (M, 50, incomplete treatment experience) says trying to have treatment was connected to his desire to be productive during his time in prison, he describes finding it hard to complete treatment because of cycles of imprisonment and bail (conditional release). (Read his personal story here)

Yeah, [I wanted to start treatment while I was in prison in] 2014 […] I thought, ‘I am going to make the best of this and start treatment’ because I could have been in there for a while. Then I ended up being bailed, but I wanted to continue on [the treatment after I left prison but…] I ran into a few hurdles […] I was staying at […] the homeless place where I was bailed to and, yeah, […] they were making life hard for me. I don’t know whether it was over the charge that I was on from the court or, you know … but right from the start, I was copping hassles with them, and […] they kicked me out […This made me] breach my bail and so I ended up just going, ‘What’s the point?’, you know, and I didn’t chase it up [any]more.

Additionally, a few of the people we interviewed had some general concerns about the new treatment or weren’t sure whether it was something they should investigate.

Dana (F, 53, no treatment experience) says that she’s heard that the new treatment is a ‘simple’ way of curing hepatitis C, and for that reason, getting hepatitis C is not a ‘big deal’. However, she doesn’t feel well informed about the disease and is unsure what to think. (Read her full story here)

[I wonder whether…] I should be worried about [hep C] because […] the guy that I […] share [injecting equipment] with, to him [hep C] seems to be not a very big deal at all. Like, [he says that] if you get it, they will cure you, and off you go. But I don’t know if that’s quite true, I don’t know if it cures everyone or is it simple as that. I don’t know.

Some of the people interviewed were concerned about potential side effects, even with the new treatment. The side effects these participants describe are commonly associated with the old treatment but not the new treatment.

Laura (F, 30, no treatment experience) explains that concern about the side effects is one of the reasons she hasn’t had treatment yet. (Read her full story here)

Straight away I’m like, ‘But I heard that it can send you into a really deep depression, and I’m not in that really good headspace right now’ […] Exactly the first thought that came into my head was that […] Like, at one point, [treatment is] going to help me heal, but at the same point, I don’t want to, you know, put my kids through that and I don’t want to … you know, I don’t want my kids taken [away from me] because I’m that depressed that I can’t clean my house […] I didn’t even know there was a new treatment until you [the interviewer] mentioned it […] Yeah, it’s all confusing.

Others hadn’t had treatment yet because they wanted to find out more before making their decision or were focussed on other aspects of their health.

Ricky (M, 35, no treatment experience) explains that he is currently focussed on diet and healthy eating. He would like to start treatment after he has learnt more about his diagnosis and how treatment works. (Read his personal story here)

Well […I was told] that I was only in the early stages [of hep C] and they just said to drink plenty of water and eat plenty of vegetables […] I would like to go on treatment once I know […what] stage [of it] I am [in…] I will go on treatment once the doctor instructs me and tells me what to do […I’d like to know] everything […that] I’m supposed to do. I’d like to know how […] to follow [the treatment] instructions, what the medication [is] about [and] how it’s going to help me […I want to know if hep C is] going to go away, because I don’t want to keep carrying it.

Evan (M, 45, no treatment experience) explains that while he’s unsure whether he agrees with the mental health diagnoses he has received, his mental health is the focus in his meetings with his doctor. This means that, for him, hepatitis C is only one of a number of health issues needing attention. (Read his personal story here)

Yeah, mental health […] Yeah, it was always severe depression and personality disorder, but I think I would argue that one and just say, ‘We all have […some ups] and some downs’. But let’s say, it’s usually been about that […] I remember when I was 23 or 24 […] it seemed to be mostly what we were dealing with every time I’d go see him – apart from doing my prescribing, when it needed to be done.

Rose (F, 36, no treatment experience) explains how depression and anxiety reduce her motivation to have hepatitis C treatment. (Note: strong language). (Read her personal story here)

Yeah. I’ve tried so hard to start the treatment. How many years … a lot of years on and off where I didn’t give two shits, I couldn’t wait to die, you know what I mean? So I was like, ‘I don’t care, I’m not going to do nothing’ […] Why? Because [of my] depression and anxiety and all that [make this] a big uphill … an up[hill] and downhill process for me, and every day it changes, like, I can’t catch a break. I’m happy, down, happy, not happy.