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Being diagnosed with hepatitis C

Being diagnosed with hepatitis C

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 many different experiences of hepatitis C testing and diagnosis. For some, testing is a regular part of their healthcare, while others only found out about the virus after tests for other health issues or when donating blood. The experiences recounted in this section address different testing locations too. While many had tests and treatment in healthcare services (specialist or generalist), some received their diagnosis in other settings such as prisons.

They also describe a range of different responses to diagnosis. Several participants say diagnosis was a significant moment in their lives that influenced their vitality, sense of self and their social relationships (see also, Living with hepatitis C). Others say diagnosis was a minor concern for them and that they rarely thought about it, sometimes taking years before deciding to have treatment (see also, Treatment decisions: Family, friends and other important relationships). 

The experiences and perspectives reported here also highlight the vital importance of social relationships in shaping how people understand their hepatitis C diagnosis. Many participants talk about being more worried about the potential implications of their diagnosis for their loved ones than for themselves (see also, Living with hepatitis C).

Having a hepatitis C test

Participants describe the process of having a hepatitis C test in a range of ways. While many sought a test themselves, others had a test at the request of someone else, such as a romantic partner. Hepatitis C was a well-known issue for most of the people we interviewed who injected drugs, but those who acquired it through other means – usually medical procedures – were often unaware of it before their diagnosis and hadn’t specifically sought a test.

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.


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.

Hepatitis C tests are a routine part of Anthony’s (M, 36, no treatment experience) healthcare. He says that he usually asks for them and that the virus doesn’t worry him. (Read his personal story here)

[I get tested] now and again. I’ve been tested probably maybe about eight times […] That’s for everything, so once I get tested, I ask them to test for everything, you know […] Most of the time I ask to get tested […] I don’t worry about [hep C] … I [would] only worry about it if I got it and then [I’d decide what to do…] go[ing] forward. I don’t worry about ifs and buts […] Yeah, I’ve had the finger prick [test] where they blood-test you […] That was all right, but I think the other one is better because the blood testing is a bit annoying, because they had to do it so many times you know […] Because my blood wouldn’t come out when they were testing, you know. Like, they’d prick me, but my blood wasn’t coming out.

Danny (M, 32, no treatment experience, experience with spontaneous clearance) describes having a ‘feeling inside’ that he should have a hepatitis C test after injecting drugs in prison. (Read his personal story here)

I just had this feeling inside, and so I went to my clinic. I said, you know, ‘This is what’s happened, and I think that I may have hepatitis C. Can you check for me?’ And my doctor said, ‘Yes, I’ll check for you’. [He] called me back a couple of days later and said I needed to go in and speak to him, and then he told me that, yes, I was hep C positive […] I don’t know how I knew, but I just could feel that my body wasn’t right. And, yeah, he told me that I was positive for hepatitis [C].

Robbie (M, 54, experience with both new [DAA] and old [interferon-based] treatments) explains that he first requested a test because he had been feeling sick. (Read his personal story here)

At least 20 years ago […I] went to the doctor […] and had the test done and found out that I had hep C then […] It was a long time ago […] I think I asked for it to be done because I was pretty sick at the time […] Just throwing up, crook stomach all the time, yeah, sleepy […I] had symptoms […I told] my grandmother [about the diagnosis], because I was living with my grandmother at the time […] She was all right, just yeah, [she said,] ‘Get onto it and get to the doctor’.

Miguel (M, 48, experience with new treatment [DAAs]) explains that prior to his diagnosis he primarily relied on his friends for information about hepatitis C. (Read his personal story here)

I was a party animal when I was in my twenties, and I […] just basically followed the party [and] for about two years that is all I did […] I was fortunate to have some good friends […who] seemed to know what was going on and I didn’t […feel I had] to worry about going to the doctor’s. Or, you know, I didn’t […] really fit into the category of someone who was taking things responsibly, in a way. I felt like I was responsible, but I didn’t ask for help […] Because my friends seemed to know what was going on, information-wise, [we thought,] ‘Okay, we know what to do [to avoid hepatitis C]’. [We thought that] there was little need to go see a doctor and get a second opinion or even tests. But what I should have done, I didn’t do. I just considered my friends and the knowledge we have enough, you know. I have been tested [now] and if I had caught the hep C in the early stages, it would have probably saved me a whole lot of hassle.

Like many of the people who appear on this website, Harriet (TW, 30, experience with both new [DAA] and old [interferon-based] treatments) explains that she wasn’t planning on having a hepatitis C test. In her case, she received a diagnosis after a sexual health check. (Read her personal story here)

Well, at first I went to get a sex screen and my nurse then told me ‘Oh, it looks like you’ve got hep C’. At first I thought, ‘Well, what’s that?’ I thought it was AIDS or something, and I [asked myself] ‘Do I go and commit suicide now?’ And she’s, like, ‘No, no, everything is good. You’ve just got to change your diet and be healthy’ and stuff like that. So, at first, when I first started, I changed my diet, started eating healthy again, and then it got worse, so I did the [old] treatment.

Like Harriet, Rohan (NB, 36, experience with both new [DAA] and old [interferon-based] treatments) explains that they received a diagnosis when getting regular tests for a different issue – this time HIV. They recall feeling confused and angry about the diagnosis. (Read their personal story here)

In 2010, I’d received a HIV-positive diagnosis in around April-May, and then so I was engaged in care and I was still doing six-monthly testing for all STIs and to monitor my HIV vitals. It was probably around November in that same year that I got a call to come into the clinic to talk about some liver results. At the time, I didn’t really understand how, like, HIV and the liver were connected, and it turns out, like, it wasn’t actually about my HIV, you know. I was sat down and I was told that I was hep C positive, and that was actually, like, a really big shock to me. It was more of a shock than my HIV diagnosis, because I understood that, like, what I was doing with sex was risky for HIV, and so it wasn’t, like, that surprising based on my behaviour. But in terms of hep C, I kind of knew a little bit [about it], that maybe it was associated with injecting drug use, and that’s pretty much all I knew. And at that time, even though some of my sex partners had injected drugs, I hadn’t injected drugs, and we weren’t able to really do successful contact tracing either. So, there was, like, a whole lot of confusion around that for me, and I think dealing with, like, two viruses just, like, was really, really intense. I felt like a lot of internalised stigma. I felt really confused, I felt a bit angry because, like, no-one was really talking about hep C among people living with HIV.

With blood tests related to diabetes a routine part of Rusty’s life (M, 70, repeat diagnoses, experience with spontaneous clearance and no treatment experience), he sometimes asks doctors to check for hepatitis C as well given that he injects drugs. (Read his personal story here)

When I go and have my blood tests done for my diabetes, and I ask them to look out to see if I’ve got hep C, but I’ve never … well, maybe once or twice I’ve gone to a doctor and said, ‘I’ve had hep C, can you just check that out alone’. Maybe a couple of times, but not a great amount of times, you know, because I’ve never felt sick enough. I’ve always thought, you know, I know people who have had to have their livers taken out and new livers put in, they were so bad from hep C, you know, and […] I’m just lucky [not to need that]. I’m just lucky like that.

Some people had tests at the request of others in their lives, such as romantic partners.

Gracie (F, 65, experience with new treatment [DAAs]) found out she had hepatitis C in the early 1990s after a new partner asked her to have a test for HIV. She recalls thinking it was just a formality and being surprised by the diagnosis. (Read her personal story here)

Okay. I’d just started a new relationship with a chap and I asked him if he would get tested for AIDS, and he said, ‘Yes, but only if you get tested for hep C’, and I said, ‘Why is that?’ He said, ‘Because my last girlfriend had hep C and she knew and she didn’t tell me’, and I said, ‘Oh, okay then’. So, I just went and got tested, thinking that it was just a formality, and I actually had it. I’d had a friend who had hep C and he really struggled with it, and I supported him in his struggles. He did three separate lots of interferon [treatment…] He lost so much weight. He was unable to work. He became skin and bones. He was really depressed. It was just awful to watch him struggle, trying to get rid of his disease, and then when I found out I had it too, I went, ‘Oh, no! This is a worry’. So, that relationship didn’t last very long, but the hep C did […] I remember telling my mum that I had hep C, and she said, ‘Oh! Where did you get that?’ and I said, ‘Sharing needles’, and she went, ‘Oh! That’s nice’. She’s a poor old love, didn’t know what to say, but anyway.

Gracie wasn’t the only participant who described being surprised by her diagnosis, with diagnosis coming as a shock to many.

Lou (F, 40, experience with new treatment [DAAs]) explains that she didn’t think hepatitis C was in her ‘orbit’ until a sexual health check led her to find out that she had acquired it through a medical procedure she had as an infant. (Read her personal story here)

So, I had started a new relationship, and we thought, ‘Oh, we should do the right thing and get an STD* check’. And so I got one, and that was the first time I’d had one, and … that was the results from the doctor. So that was quite a shock, and I had thought, like … [hep] C just wasn’t in my … just wasn’t in my kind of orbit really. I remember back when I was 18, and I see a cardiologist every year because I had heart surgery when I was a baby, and it was from the blood transfusion at the […] hospital […] Yeah, so that was how it was acquired, as a baby in 1980. And, yeah, so I remember saying to my cardiologist when I turned 18, I said, ‘Could I have got AIDS?’ Because I remember there was a lot of information that had been [circulating about] people getting HIV in the ’80s from blood transfusions, and he just sort of laughed me off and said, ‘No, of course you don’t have AIDS’. And made me feel a bit silly. Then I really never even thought about it again, so yeah, it did come as a complete shock.

Reflecting on her experiences of diagnosis over 15 years ago, Julia (F, 43, experience with new treatment [DAAs]) explains that she wasn’t having healthcare regularly at the time and found out about her hepatitis C when she was having tests related to her pregnancy. (Note: strong language) (Read her personal story here)

[I found out] probably when I was pregnant. Yeah, because before then I couldn’t have given a shit. Like, there would have been years where, apart from my methadone script, I would never [have] had any meaningful interaction with healthcare. So, I probably found out when I was pregnant. I actually recall being very surprised I wasn’t HIV positive. I remember asking [them to take] the test over and over when I was pregnant [and] just being shocked that I wasn’t HIV positive. I didn’t quite believe them […] I was all pretty overwhelmed, [with] everything else happening for me, and so hep C treatment, yeah, it wasn’t really talked about. I do remember wondering about breastfeeding and hep C once, you know … a few months on, once I realised I was going to have a baby.

Several of the participants interviewed for this website had experiences of testing and diagnosis while in prison.

Lee (M, 45, repeat diagnoses, experience with old [interferon-based] treatment) recalls being a ‘bit blasé’ after being diagnosed during a period in prison. (Read his personal story here)

When you go into custody, you are just given the option to be screened for blood-borne viruses. It was just an option, and I was 26 and I shared a lot of needles and have done lot of unsafe practices, so I was screened, and then about a month later the doctor called me in and said that I had antibodies. He explained straight away that didn’t necessarily mean I had the virus, and that my liver count and that seemed all right, and then they did the PCR test and I had cleared [been cured of] the virus. So, yeah, I wasn’t overly concerned when the doctor explained things straight away, and because I had a bit of prior knowledge, yeah, and I was still using drugs in prison at that stage, so I wasn’t … I was a bit blasé to the whole reality of the importance of having a functioning liver.

Reflecting on diagnosis

The people interviewed for this website describe a range of responses to their hepatitis C diagnoses. For some, the diagnosis was a significant concern, while others were unworried by it. The experiences recounted here also show ways in which stigma could shape how people thought about their diagnosis (see also, Dealing with stigma and discrimination). Many of these responses also point to the importance of family and friends (see also, Treatment decisions: Family, friends and other important relationships).

As they explain, some participants remember thinking about the prospect of dying after they were diagnosed with hepatitis C. 

Cassandra (F, 47, experience with old [interferon-based] treatment) remembers thinking it was a terminal illness when she was diagnosed in the early 1990s. As she learnt more about hepatitis C, she realised this wasn’t true. (Read her personal story here)

It was [the early ’90s], I actually went on to a methadone program […] and we had to have a blood test done, and then that’s how I found out that I had hepatitis C […] I don’t think they [health professionals] knew much about it back then too, you know, yeah […] It was quite frightening […] Yeah, it was almost like, for me, because I didn’t know much about it, it was almost like being given a death sentence, if you know what I mean? You know, it’s almost like being told I am HIV positive back then, but as [the] years went on, realising it wasn’t [a death sentence] made it a lot better.

Describing her diagnosis in the late 1990s as a ‘real shock’, Kylie (F, 46, experience with new treatment [DAAs]) also says she was worried about dying. (Read her personal story here)

Okay, well as you know, I was on drugs and I went to a drug rehab. I didn’t know at all, like, I had no symptoms, but I had hepatitis, and at the rehab they did blood tests and they came back and told me that I had hepatitis. I was quite shocked because, like, I wasn’t jaundiced or tired, or compared to other people that I’d seen that you could tell had hepatitis. Yeah, I was really shocked and, like, the first thing you think of is, ‘Wow, I’m going to die’, blah, blah, blah. Like, it was something like someone telling me I had AIDS or something. It was a humongous real shock to me.

Many participants discuss the connection between hepatitis C and injecting drug consumption. Some of those who didn’t acquire hepatitis C through injecting say that it was important to them to explain this to others (for more on related issues see, Dealing with stigma and discrimination).

Brooke (F, 58, experience with old [interferon-based] treatment) says that her diagnosis in the late 1990s had ‘emotional baggage’ attached to it. She adds that it is was important to her to explain to others that she didn’t acquire hepatitis C through injecting. (Read her personal story here)

[If] I told someone I had it, it came with, you know, the description of how, why and when, because people can be very, you know what I mean, they hear one thing and that’s it, it’s black and white. Well, it’s not black and white with hep C, because there […are those people with it who] don’t use drugs. I would draw on my strength again and sort of try and educate people […] a bit about hep C, because, as I said back then, it was such a dirty word, you know, because of the stigma that surrounded it. I guess I did feel, you know, when I use that word ‘dirty’, because people would think the wrong thing about me [and assume that I inject drugs] when that wasn’t who I was or how I got it. So, there was a lot of emotional baggage there as well.

Heather (F, 67, experience with both new [DAA] and old [interferon-based] treatments) says that the relationship between hepatitis C and injecting drug consumption is a key reason some people face discrimination. She argues that treatment is a great opportunity regardless of this issue. (Read her personal story here)

I think as long as there is an association between hepatitis C and IV drug use, then you are always going to have to deal with stigma and discrimination. As someone who has hepatitis C, and I don’t think that has changed, and I think the fact that you can still have a blood test and your employer can see that you are antibody positive, so those things, I think, still hold people back a little bit and still makes them have … you know, it is confronting. If you had a history of IV drug use and that’s how you got it, then it’s still a lot of confronting of those concepts still. In terms of your own health, I think it’s [treatment] a very simple process and you can just, you know, you can just do three months’ treatment, perhaps get some other medical help support, you know, emotional support maybe, and things like that that you may have needed as well. It’s a great opportunity to do a lot for people in that time.

As indicated above, some of the people interviewed were also affected by HIV. They explain how their experience with HIV shaped their responses to hepatitis C.

Derek (M, 52, repeat diagnoses, experience with spontaneous clearance and old [interferon-based] treatment) describes how he felt after being diagnosed with hepatitis C and HIV at the same time in the early 1990s. He explains that attending the hospital for both issues created extra complications. (Read his personal story here)

It was a double whammy. But it [hep C] was not a concern compared to the other issue [HIV] and I must have an interesting immune system because my body overcame it [hep C] the first time of its own volition, and I was left to continue on my journey with the other situation. So, that was the first time I came across it, and to be quite honest, at that time I think the fear was just as great around hepatitis C as it was around HIV. So, dealing with health professionals, […] you had to go to two different areas of the hospital, and you were treated the same in both, but the fear was not about the other item, in each section it was about their own section item [either the hep C or HIV].

For some participants, concerns about their diagnosis were connected to their relationships with others such as partners or children.

Amelia (F, 41, experience with new treatment [DAAs]), for example, was especially worried about the welfare of her unborn child after she was diagnosed in 2016. (Read her personal story here)

I guess when I initially heard him [the doctor] say, ‘You’re positive for hep C’, my stomach dropped, but him making it sound like a positive thing, not a negative thing, changed my feelings. Because it was all in the appointment […] I was like, ‘Oh shit’, you know, [asking] ‘Where do we go from here? Am I going to die?’ You know, I still sort of had those feelings, but then by the end of that appointment, [my doctor] said, ‘You know it’s been … it’s the best time to have hep C right now, because […of the new treatment], it’s got this success rate and blah, blah, blah’ and all this stuff. I was like, ‘Well, if [that’s what] you reckon?’ I still had half a smile on my face and half a frown, you know. I guess I was more worried about, to be honest, the baby than myself. If anything, I was more worried about my son at the time, and yet again, [my doctor] eased my mind with that. So then I was just like, ‘Okay, sweet, we can get [the treatment] started once I’ve had the baby’.

Heather (F, 67, experience with both new [DAA] and old [interferon-based] treatments) says that finding out her daughter had acquired hepatitis C from her was a ‘horrendous experience’. (Read her personal story here)

I don’t think I knew that she could have got it during pregnancy. I mean that I could have passed it onto her while I was pregnant, but I did wonder, you know. I guess always in the back of your mind you wonder if maybe you [were] not being careful with blood or something and passed it on to her in that way. The moment she told me, I knew that I had it and that I had given it to her. I don’t know why, but I knew. I guess all that guilt around IV drug use, you know, when I first, well, before I was pregnant with her, before I knew I was pregnant with her, so I always had a guilt there anyhow. So I guess it’s always been this long-term fear that I had done something or damaged her in some ways. So I guess it was like having every single fear that I had around my IV drug use sort of just come to life, really. It was bit like I had been cheating for the last 30 or so years of my life and I thought I had got away with it and I hadn’t, so […] that was just the most horrendous experience, and [I] just have the most amazing daughter, because she never showed any judgement or any concern.

Several participants say that they were not very worried about their hepatitis C diagnosis. For these people, hepatitis C wasn’t seen as a pressing issue. Instead, they saw it as something that could be dealt with in the future.

Marty (M, 65, experience with both new [DAA] and old [interferon-based] treatments) describes being unconcerned about his diagnosis when he received it in the late 1980s. (Read his personal story here)

I was just going, donating my blood, going home, you know, every three months, and one day I read a letter from the blood bank saying there’s a rare antigen in my blood [and asking] could I duck back in and see them? And seriously I thought I might have had blood type Q and I was going to save a million people or whatever, I had no idea. So, I’ve gone back […] saw a doctor, blah, blah, blah, and he said, ‘Look, mate. We got to tell you. You’ve got non-A, non-B hepatitis’. Which now obviously is hepatitis C. And I went, ‘Oh okay, that’s fine’, and it meant nothing to me, because I wasn’t sick, nothing, nothing. He said, ‘But the only thing is, you can’t donate blood any more’. Like I say, it was just out of sight, so it just didn’t mean anything.

Like Marty, Chris (M, 60, experience with new treatment [DAAs]) also says that he didn’t worry much about hepatitis C because it didn’t seem to affect him. Chris postponed his treatment until the new medication was available. (Read his personal story here)

[When I found out I had hepatitis C] I did nothing. I didn’t want to do anything and I was always saying to my doctor, ‘It doesn’t worry me … it doesn’t affect me and that interferon is so awful, why would you bother? In the future, we will see what happens’. Well in the future the 12-week Harvoni cure came up and I jumped at it.

For James (M, 56, experience with old [interferon-based] treatment), diagnosis wasn’t a ‘huge life-changer’, because he didn’t see it as an immediate problem. (Read his personal story here)

Nothing was intrinsically different. I just found I had something, and it wasn’t like it was cancer or something, which, you know, gave me six months [to live] or something, you know. This is hepatitis, which seems to be, from my understanding, a very long-term thing. It wasn’t an immediate threat, if that makes sense […] So, you know, my life has sort of been up [and down], you know, I’ve had worse things affect my life, to be quite honest. So, yeah, it was just something that I took in my stride and just something to be sorted out at some stage.

Evan (M, 45, no treatment experience) describes spending around a week in hospital after being diagnosed with hepatitis C. He told his mother about the diagnosis and recalls that she didn’t seem worried about it. (Read his personal story here)

By memory, it was just in the emergency department, so I have gone in really sick, all yellow and admitted being a drug user, and they have just said that, ‘You have got a hep C flare-up, you just have a hep C flare-up, and we are going to admit you and we are just going to do blood tests and watch your levels and will let you go when you are all right’. So, I ended up there maybe a day over a week or just shy of a week, so like six or eight days […] I told my mum […] Didn’t really seem to faze her, yeah, if I am honest.

In contrast to Evan, some participants explain that they wanted to avoid their family and friends after learning of their hepatitis C diagnosis (see also, Dealing with stigma and discrimination).

Danny (M, 32, no treatment experience, experience with spontaneous clearance) recalls isolating at home after receiving his diagnosis. (Read his personal story here)

I put myself in a bubble where I stayed home and didn’t communicate with anybody from the outside world. When I went back for my second test, when I thought I was hep C positive, I went […] and got my heroin or whatever, and I came home and I used by myself. At that stage, I bought a whole bunch of syringes so that I would not have that problem [of running out of equipment] again. But like, yeah, I just, I knew that I was going to be sick from it.

Receiving advice from health professionals 

The people who spoke to us for this website describe receiving different kinds of advice from health professionals at the time of their diagnosis. For some participants, the advice was helpful while others say they would have preferred to receive more information or different kinds of information.

Cal (M, 50, incomplete treatment experience) was 17 when he was diagnosed with hepatitis C, and he says that he should have had his mother with him at the time. He recalls the doctor saying that he had 20 years left to live, but he thinks this may have been a strategy to scare him. (Read his personal story here)

[The doctor explained that] it attacks your liver. And I’m trying to take this in, but, like, on the other hand, I’m freaking out and, like, totally freaking out. I should have had mum with me probably, but I didn’t know that was going to happen, you know, and, like, because of my drinking and because I smoked as well, but because I was a heavy drinker […] he said, ‘Because you’re drinking as well, it’s not good for your liver, you know, both in combination, you know’. That’s why he sort of said [that I had about] 20 years [left to live]. I don’t know whether he was trying to scare me out of drinking at that age or what, you know, but yeah, he didn’t really explain too much. I wasn’t really listening too much after that point, you know, because I was just sort of freaking out. I just wanted my mum, sort of thing.

Rod (M, 41, repeat diagnoses, experience with new treatment [DAAs]) remembers that his first diagnosing doctor didn’t know much about hepatitis C. Some years later, he had another test and was advised to postpone treatment until the new medications were available. (Read his personal story here)

Yeah, I got diagnosed with hep C, like, about 20 years ago, and I don’t think the doctor knew too much about it. He said that […] the blood tests came back with hep C, but [that it was] inactive, and he told me, like, I had something in my blood that was fighting against it. So I just thought that I couldn’t catch it, and then I got tested again a couple of years later and they told me that I had caught it now, but not to do anything about it because I was healthy and that better treatment will come out in the future […] Then I’ve had heaps of test over the years, like hep C. My FibroScans were pretty healthy, and they just kept telling me to wait because there will be better treatments sooner or later.

Diagnosed much more recently than Rod and Cal (2017), Terence (M, 34, experience with new treatment [DAAs]) explains that the doctor informed him about the new treatment at the same time as delivering his results. (Read his personal story here)

So, at the time, I was going through a rehabilitation program, and I was encouraged by the facilitators to go and book in and see a doctor. So I did that, and I went on some alcohol withdrawal medication and some stuff and, you know, I was in and out of the doctor’s all the time, and the doctor said, ‘It’s been a while since we’ve done a blood-borne virus test’ for HIV, hep C, hep B and that sort of stuff. So I did the test, and I went back to see the doctor a few weeks later. [They] said, ‘Okay, well you know all was clear except the hepatitis C’, which I can remember I was a little bit disappointed about, but the doctor said, ‘There’s some new medication now’ […] And then, yeah, the doctor put me on the new medication, and at the time I was within the first lot of people in this area to be prescribed that medication.

Sana (F, 71, experience with new treatment [DAAs]) explains that she may have acquired hepatitis C while still living in India, during a medical procedure for an arm injury. (Read her personal story here)

[I had] to do some checks and everything, medical things, for the visa purposes […and] went to the local doctor there to just get all the tests done […] They said, ‘You’ve got a little infection in your blood’, but then they didn’t [explain] what sort of infection. They said, ‘Don’t worry about it, it’s okay’, because, you know, in India, sometimes they are like that. Yeah, doctor to doctor, it depends. Yeah. Some [things] they take serious[ly], some they don’t take serious[ly] […] One time [I had] like a little accident where [my] arm just got squished fully […] luck[il]y it wasn’t the bone. So, it’s just like the muscles and everything […and I] was hospitalised for nearly a month, I think. During that process, I had a blood transfusion and so many injections and everything, and we’re thinking [my family and I], like, maybe [I acquired hep C] from one of those injections or blood transfusions.


*STD stands for Sexually Transmissible Disease, for example, HIV, gonorrhoea or chlamydia. Currently, the term Sexually Transmissible Infection or STI is used instead.