Obstacles to Having 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, 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.’

Until the recent introduction of the new direct-acting antiviral (DAA) hepatitis C treatment, the only available therapies were extremely lengthy, had weak success rates and came with significant side effects (see also, Reflecting on experiences of treatment and cure).

While the new treatment is widely considered straightforward and easy to follow and complete (see also, Perspectives on the new hepatitis C treatment), some issues continue to restrict its use. The project on which this website was based collected many positive views on the new treatment, but some participants also describe problems with getting the treatment. These issues range from limited awareness and knowledge of the new treatment, to the impact of other health concerns on treatment, and broader social problems connected to criminalisation and stigma (see also, Dealing with stigma and discrimination).

The experiences covered in this section make it clear that while the new treatment is effective and simple to take, getting treatment is not always easy. Read on for details about different concerns raised in the interviews.

The healthcare system

Several people say they had difficulty finding and starting hepatitis C treatment because of a range of issues in the healthcare system. They said treatment was not promoted very widely, and they described several other barriers to hepatitis C tests and quality healthcare. Additionally, some indicated that even though they had heard of the new treatment, they weren’t sure of the details, including how to start it. As Laura (F, 30, no treatment experience) says, ‘I didn’t even know there was a new treatment until you mentioned it […] Yeah, it’s all confusing.’

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.

Dana (F, 53, no treatment experience) explains that between 2012 and 2016 she had regular blood tests for hepatitis C and other tests for STIs. She doesn’t remember receiving much information about hepatitis C during this period. (Read her personal story here)

Being an IV drug user [who had] shared equipment in the past and [who was] also a working girl for a little while there too in [sex work…], I just needed to get checked and make sure I didn’t have it […] Yeah, I think we had to go once a month […] or maybe three months for blood [tests] and one month for STD thing[s], I think […The] only thing I think I ever received is a little brochure once, and it was about hepatitis, and then it had a few numbers or letters under it, like, I think it was A, B, C or something, I don’t know. And all it said was that it can be transmitted […through] sharing of [injecting] instruments and sexual[ly], and to be aware.

Peta (F, 40, no treatment experience) says that despite speaking with her doctor in the past about injecting drugs, they no longer discuss injecting or related issues such as hepatitis C. Peta has heard about the new treatment but doesn’t know any of the details. (Read her personal story here)

I don’t bring the subject [of my injecting] up [any more] and she doesn’t bring the subject up, and I think she thinks I have stopped [injecting]. Unless something comes up in regards to that, you know, medically, that could be affected by [my injecting], I don’t think she will bring it up […] I do know that there have been changes [to hep C treatment], but I don’t know what they are, if you know what I mean. I don’t know anything about it.

Also speaking about the issue of awareness about treatment, Mikey (M, 40, no treatment experience) says that social and community organisations need to provide more information about hepatitis C to their clients. (Read his personal story here)

All through the Salvation Army crisis housing and stuff, you never hear anything about hep C ever, and I feel like it’s something that, yeah, people should be aware of […] Hep C […] like, I wouldn’t be surprised [if I acquired it in the future], and I probably would go and read about the current treatments, because my information is outdated, I think […] I didn’t even realise that there was a new treatment, actually. I had no idea […I haven’t noticed] anything that would advertise this new treatment, [and] I would have noticed.

For information on how to find hepatitis C treatment, see our Resources and Information page.

In a few cases, people interviewed for this website described difficulty starting treatment due to vein damage. Hepatitis C testing in preparation for treatment may be hard to carry out due to difficulty accessing veins and can involve special equipment.

Mem (F, 41, experience with new treatment [DAAs]) says that because an ultrasound is needed to guide her blood tests and collect blood, it took nearly 12 months to start treatment. (Read her personal story here)

I believe I probably went for treatment [and] it took me nearly 12 months to be able to get bloods out […] I have an issue with bloods, getting them out of my body, so I need an ultrasound guided [test], with a machine, to get bloods out. So […there was] a year or so in between knowing [I] had the hep C and getting treatment, because when I’ve gone to go up to either the hospital or the doctor to get bloods out, if they didn’t have an ultrasound machine, I [was] knocked back. So then it’s just perpetuated the problem.

Focussing on a different issue, relating to her treatment back in 2015, Carol (F, 58, experience with new treatment [DAAs]) says that living regionally and missing appointments could result in fewer staff follow-ups. (Read her personal story here)

I had an appointment that didn’t suit, so I had to change it, and if you do that more than twice, you are off the list, more or less […] Yeah, but I suppose they’ve got a lot of people to deal with, you know what I mean. You’ve got to respect that as well […] You can’t be messing them about.

Insecure housing and stigma

Several participants spoke about the ways broader issues such as insecure housing or stigma and discrimination can act as barriers to hepatitis C treatment (see also, Dealing with stigma and discrimination). While treatment is generally described as easy to take (see also, Perspectives on the new hepatitis C treatment), these broader social issues can cause problems beginning and completing it.

Alexander (M, 45, experience with new treatment [DAAs]) says being homeless made it difficult to complete his treatment. (Read his personal story here)

I still currently have hep C. I was on treatment for a while. I got halfway through but circumstances [around] where I was, like, staying at the time changed and it was really hard for me to keep up with the medications […] I was taking the medication every morning because I was actually staying at [a supported short-term crisis accommodation], but then when my time was up there and I left, it was hard for me to keep up with the medication, because I was homeless again. So, although it’s a very simple task, my memory is not the best and it was a bit hard for me to keep up with it […] Just being transient, like, I was never in the same place, I’d never wake up in the same place every day. So, it was hard for me to, sort of, remember to take the tablets, because I had other things on my mind.

Referring to stigma, Lou (F, 40, experience with new treatment [DAAs]) says she worried about privacy at the local pharmacy during treatment, as she was known in the local community. (Read her personal story here)

It was all pretty easy, really. My GP … by that stage, I had started to notice there was lots of posters coming up in waiting rooms and around the hospital about, you know, ‘hep C treatment: this clinic now treats hepatitis C’, it had come onto the Pharmaceutical Benefits Scheme, people were quite excited by that. So the way it worked is that I had to go to Melbourne to get the prescription […] and then there was a few barriers, like again, the local community. I didn’t want to come down to this pharmacy and get it, because, you know, I’m in here all the time. You are standing around talking to your neighbours and friends while you are waiting for your prescription to be filled, all of that silly stuff, which probably wouldn’t bother me any more, but did back then.

Living with mental illness

Among the people interviewed for this website, many describe themselves as healthy and explain that they haven’t experienced any major illnesses. Nevertheless, some live with mental health conditions that can make it difficult to have hepatitis C treatment. The most common conditions spoken about by our participants were depression and anxiety, with several describing how managing these can make it hard to get and complete treatment.

Rose (F, 36, no treatment experience) explains how depression and anxiety reduced her motivation to have hepatitis C treatment. (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 [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.

Evan (M, 45, no treatment experience) explains that while he is unsure whether he agrees with his mental health diagnoses, his mental health is the focus in his meetings with his doctor. This means that, for him, hepatitis C is 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.

Minimal symptoms and confusion about treatment side effects

Several people describe delaying treatment because they had not experienced any significant hepatitis C symptoms. Some participants who were diagnosed when interferon-based therapy was the only treatment option also describe waiting until the new treatment was available. Other participants describe confusion about the differences between the old and new treatments (see also, Experiences of treatment and cure; Perspectives on the new hepatitis C treatment).

For information on how to find hepatitis C treatment, see our Resources & information page. For information on the new hepatitis C treatment, see Reflecting on experiences of treatment and cure. To hear more views on the new treatment from people who have had it, see Perspectives on the new hepatitis C treatment.

Marty (M, 65, experience with both new [DAA] and old [interferon-based] treatments) says he delayed having treatment because he didn’t experience any hepatitis C symptoms. (Read his personal story here)

Now, in jail, I also knew I had hepatitis C […] because they did blood tests and my ALTs* and ASTs* were pretty high, but all they could do was tell me that I had the virus. There was nothing they could do. But again, it didn’t feel or seem serious because I didn’t, at that stage, have any ill effects. So, that’s all I sort of knew, you know. Your ALTs are high, your ASTs are high, all that sort of stuff. Anyway, fast forward, and still no ill effects in jail. Even though I was becoming aware of it because there was an old-timers’ wing, like unit, that they had turned into a hepatitis treatment sort of section (and it was interferon), but the amount of thought I gave it was minimal […] I wasn’t serious then, because there was no ill effects.

Laura (F, 30, no treatment experience) recounts concerns about side effects associated with the old interferon-based treatment and explains that they’re one of the reasons she hasn’t had treatment yet. (Read her personal 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.

Current hepatitis C treatment (direct-acting antiviral treatment [DAA]) is not associated with significant side effects. To hear about personal experiences of hepatitis C treatment, including the current treatment and cure, see Reflecting on experiences of treatment and cure. To hear more views on the new treatment from people who have had it, see Perspectives on the new hepatitis C treatment.

Criminalisation and custodial settings

While there are several ways to get the new treatment in Australia, some obstacles remain even for those who are keen to have it. For several people in this research, criminalisation and imprisonment made it hard to get treatment.

While Cal (M, 50, no treatment experience) says he wanted to have treatment to ‘make the best’ of 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.

Referring to the conditions inside prison, Dominic (M, 36, experience with new treatment [DAAs]) explains that while he hoped to do treatment during his sentence, it was hard to receive medical care. (Read his personal story here)

I actually did want to do it [treatment] when I was locked up, but it would be a miracle if you get to see a doctor when you’re inside, a miracle […] The medical system inside is a nightmare […] It’s just hard to even get them to take you to see a doctor. It’s hard to get a Panadol if you’ve got a migraine […] I put [hep C treatment] on the medical form and requested it and it went nowhere […] But it would have been good to do it while I was inside, because you are just locked in your cell all day and it’s a perfect place to do it.

NOTES

Several of the people interviewed for this website described the criminal justice system as disrupting efforts to look after health and wellbeing in general, and to have treatment for hepatitis C in particular.

For information on how to find hepatitis C treatment, see our Resources & information page.

* Alanine transaminase, or ALT, is an enzyme found in the liver that helps turn proteins into energy for the liver cells. When the liver is damaged – for example, by hepatitis C – ALT is released into the bloodstream and levels of it in the body increase.

* Aspartate transaminase, or AST, is an enzyme that helps the body process amino acids. When the liver is damaged – for example, by hepatitis C – AST is released into the bloodstream and levels of it in the body increase.