Treatment decisions: Family, friends and other important relationships

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.’

Among the people interviewed for this website, many explain that their family, friends and other personal relationships are important to them when making decisions about hepatitis C treatment. They describe these relationships as influencing their perspectives on and experiences of treatment (see also, Reflecting on experiences of treatment and cure).

The role of intimate partners is often spoken about too. The views and experiences reported here reflect that decisions about treatment are often discussed with partners (see also, Being diagnosed with hepatitis C) and that some people with hepatitis C worry about the impact of their status on their intimate relationships (see also, Dealing with stigma and discrimination).

Many emphasise the significance of friendships in their experiences of hepatitis C. Friends, for example, often help manage treatment or offer a supportive and understanding social network. Some also describe encouraging others in their social network to think about hepatitis C treatment.

Some of the participants with experiences of the old, interferon-based treatment speak about the impact of treatment side effects on their work responsibilities and relationships with colleagues, another issue shaping treatment decisions. They say that they often had to take a break from work or negotiate with their employers for a schedule that accommodated the effects of treatment. This was not a worry for those having the new treatment.

Overall, participants’ accounts here suggest that family, friends and a range of other personal relationships can be central to experiences of hepatitis C and decisions and arrangements around treatment.

Deciding to have hepatitis C treatment

Participants explain the different ways relationships with other people influence their decisions about hepatitis C treatment. They especially focus on the importance of family and friends in their lives. These experiences highlight how relationships with family members, friends and intimate partners are a significant consideration when thinking about 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.

Sean (M, 42, repeat diagnoses, experience with new treatment [DAAs]) says that part of the reason he had regular tests for hepatitis C was to ensure he could explain his status to intimate partners, including those who might want to have children. (Read his personal story here)

I chose to [have regular tests], like, I didn’t look at it like a thing you can only get from injecting drugs. Like, I knew it was a very small chance of getting it any other way [such as through sex], but what if I got a partner who doesn’t use [injecting drugs], you know, and I’ve got to explain to her, ‘Hey, I’ve got hep C’? [Or] she wants to make me have a kid, and then I’ve got an infection at the time, and she doesn’t know enough about it, you know? I’ve only been released from custody [since] 2018 […] Before that I was with a partner who used [injected illicit drugs] and she wanted to try and have a kid and that, and she did hep C treatment, and I didn’t [want to have a child] at that stage.

As Miguel (M, 48, experience with new treatment [DAAs]) explains, his mother’s success with the new treatment curing her of hepatitis C influenced his decision to have it too. (Read his personal story here)

[I had hep C for] 10 years or more […] until […] Mum one day rings me and says, ‘There’s a treatment [available, my] doctor reckons’, and then a couple of weeks later she’s on the tablets, and within three or four months she [has been cured of] it, and we were like, ‘Oh wow […] we’ve got a cure’, and I thought, ‘It’s too good to be true’, and yeah, I did it too. So […] my mum found out about her treatment and then obviously it worked, and I found out through my doctor that I too could do that, and after we checked the liver count, this whole thing, yeah, I got the drugs. So as soon as the treatment started, I started kind [of] feeling not much difference, but positively and, you know, like a fresh new start kind of feeling.

Wanting to have children in the future is one of the key reasons Kylie (F, 46, experience with new treatment [DAAs]) decided to have treatment. (Read her personal story here)

Well, I wanted to have children down the track, so […] I wanted to make sure that … I really didn’t think you could have children if you had hepatitis [C]. Of course, you can [have children], but I always thought the child would be born with it […] My child still had to get blood-tested … as soon as he was born, they took him away and blood-tested him and then let me know that he didn’t have [hep C], thank God.

Discussing treatment with family members

Family is an important part of the experience of treatment for many of the people interviewed for this website. Cassandra (F, 47, experience with old [interferon-based] treatment), for example, explains that her sister ‘really did help’ her through treatment. By contrast, others such as Colin (M, 44, experience with both new [DAA] and old [interferon-based] treatments) say that they had to complete treatment ‘unsupported’ by family or friends, and they emphasise how difficult this was. While the role of family varies, the accounts that appear here suggest that family is important to how treatment experiences take shape.

Explaining how her family shaped her treatment experience, Carol (F, 58, repeat diagnoses, experience with new treatment [DAAs]) says that her sister helped her understand test results and that her grandchildren were part of her motivation for treatment. (Read her personal story here)

I think the biggest [reason I had treatment] would have been when […] my eldest son and his wife got pregnant with their child. You know what I mean, so, like, I didn’t want to take any chances, you know, sort of, like, so I spoke to […] the 1800 number for the hepatitis line. Well, the thing is that my niece had hep C too […] and just talking to my sister about the antibodies and stuff like that, I worked it all out. I [made] copies of my blood tests and my liver scans, so that I can compare them or have a look at the different results.

Gretchen (F, 68, no treatment experience, experience with spontaneous clearance) describes informing her siblings, whose children play contact sports, about hepatitis C and how it’s acquired. (Read her personal story here)

I had to tell all my family members […] I felt that [it] was responsible to do that because my brother and sister, I mean, they had their children, [who were] like 10 and 12 at the time. I needed to educate them, and I gave them all the information […] I said, here’s all the information you need to know about hepatitis C. I told them [my husband] had died from it and I said, you know, ‘I’m a carrier* [too]’, and then I told them I had expelled [cleared] it, but I said, ‘[…you can only acquire it through] blood-blood contact’. But I also informed them and educated them because their children are playing […contact sports, so] if they have a collision and [there’s] blood-on-blood contact [it could be a risk], you know […but] I think [all they said was], ‘Oh yes, all right, thank you.’

Rohan (NB, 36, experience with both new [DAA] and old [interferon-based] treatments) explains that they spoke with their parents about their (interferon-based) medication because they had to store it in their fridge. As Rohan also had HIV, this created a tension around disclosure. (Read their personal story here)

I sort of, like, was really … didn’t really tell many people, like, only very close friends and my parents mostly because, like, I was going up to see them and I would’ve had to keep the treatment in the fridge […but] I hadn’t told them about HIV at that stage, so I was, like, talking to them about hep C but not about HIV […] I think, like, maybe because the hep C, like, I was being treated and so it’s, like, it’s hard to, like, not disclose that, and I think, like, as well, this HIV was a lifelong condition and hep C was curable and, like, maybe yeah.

Parenting and children

Parenting responsibilities and concerns about children are especially significant to many of the interview participants. While some fathers discussed the importance of their children in making decisions about treatment, parenting responsibilities were primarily discussed by the mothers who participated in the project. Concerns about the welfare of children is a significant aspect of decision-making about treatment for these participants. In some cases, children were described as a reason to have treatment. In contrast, concerns about the impact of treatment on their parenting also caused some participants to postpone it.

Rashida (F, 52, no treatment experience, experience with spontaneous clearance) explains that following her diagnosis, doctors advised her to stay home with her condition. They also discussed the chance of her children acquiring hepatitis C, but she wasn’t convinced that her hepatitis C posed a significant risk to her children. (Read her personal story here)

When my doctors [found out] that I have this virus, they […advised that I should stay home and rest for a while, which meant that] my wedding was postponed. They [also] start[ed] talking about the possibility of [me] transferring the disease to my kids. I don’t know why [but] I was not convinced [by] any of this.

Reflecting on how his treatment experience has changed his outlook on life, Steve (M, 49, experience with new treatment [DAAs]) says it meant that he would have more time to spend with his children in the future. (Read his personal story here)

[Curing hep C made me feel] a lot more positive within [my]self, you know, and [that I] might be able to get a few more years and spend them with the kids and stuff like that […] Once upon a time you were stuck with it, like, you know, there was no cure for it, and now there is [a cure], so that’s really good. Yeah, it’s really uplifting to me that you can […be cured of] this now, you know, and you don’t have to worry about infecting your loved ones, you know, relatives or friends. So, it’s a good thing.

Julia (F, 43, experience with new treatment [DAAs]) explains that having had hepatitis C means that her history of drug consumption is regularly raised in healthcare appointments, including those that are unrelated to the virus. She talks about how some of her daughter’s health records display what she calls her ‘stigmatised health history’ (see also, Dealing with stigma and discrimination). (Read her personal story here)

Even […] those maternal child healthcare books you get, you know, the blue ones, that chart their first five years of life? [I had one for] my daughter, you know, the first page of that just talks about my drug dependence in pregnancy and my hep C status, so even her first health document, you know, has my stigmatised health history on it […] It’s awful. It also meant that [at] every kind of healthcare appointment, my drug use history was, you know, going to be brought up, was going to be made relevant when it wasn’t necessarily relevant, and, yeah, just the stigma that comes with that as the single mum, as someone who is also trying to manage, you know, all the trauma or all the things that led me into the drug dependence as well. Yeah, so I guess, you know, the hep C was, it was something I couldn’t avoid in healthcare, it was the reminder that I had this history of drug dependence.

Intimate relationships

Several participants explain that their intimate and romantic life was an important part of their hepatitis C treatment decisions. While partners were often described as an important source of support, for some they were discouraging and unhelpful. Overall, worries about the impact of hepatitis C on intimate relationships were common among the people we interviewed. Several participants, for example, expressed concern that having hepatitis C meant that they couldn’t have intimate relationships or that potential partners might be put off. For many, much of the significance of treatment was about being able to have intimate relationships (see also, Reflecting on experiences of treatment and cure). Seeking support from intimate partners was important for many, but experiences varied, with some describing receiving support and help and others describing unhelpful and unsupportive relationships.

Comparing her partner’s responses to those of her family, Rebecca (F, 34, experience with old [interferon-based] treatment) explains that unlike her parents, grandmother and brother, her partner [at the time] was not supportive of her decision to have treatment. (Read her personal story here)

The funny thing is, I remember my grandmother, because my mum treated me like a child all the time, so I went with my nan, because she was worried about me, and my brother was there and so my brother came in, and then that was how it started from there […] Then my dad came with me to find out about the hep C, this treatment […] It was all positive [having them with me] […] My ex-partner had hep C and he didn’t cure it. He had the shits that I was going to try and get rid of it, for some reason […] I guess [he was worried that] I would be [cured of hep C] and he wouldn’t […] He said he would break up with me [if I did treatment] and I said, ‘Well, break up with me then […We] ended up breaking up for something completely different anyways.

Reflecting on his how his partner responded to his hepatitis C, James (M, 56, experience with old [interferon-based] treatment) explains that her familiarity with it meant he didn’t feel the need to hide anything. (Read his personal story here)

Yeah, so it was fully accepted, [I] didn’t have to hide anything at work or from my wife. She actually had it herself once. This is before we were married. This is sort of years ago. Her and her partner got it. She cleared it herself and her partner had to undergo interferon treatment, and I think he got knocked around a bit by it, but […was cured of] it, ultimately. So, it’s not as though she was totally unaware […] So even though, you know, injecting wasn’t a big thing in her life, you know, we both had that, you know, so nothing needed to be hidden. There was no judgement or anything like that for that. All my surroundings just made it easier for me probably than it would’ve [been] for somebody else.

Paulie (M, 45, experience with new treatment [DAAs]) says that treatment relieved him of the need to disclose his hepatitis C to potential intimate partners. (Read his personal story here)

Yeah, [treatment] made me happy and content, so that way I don’t have to go around, yeah, always getting in contact with some people, you know, new people or in a relationship or having sexual affairs, I don’t have to say, ‘Excuse me, you know, I’ve got hep C, just so you know.’ Like, I just don’t have to say it [any more] because I’m [cured], so it takes away that agitation […When I found out I was cured,] yeah, I was very overwhelmed, I was happy, I was vibrant. I was just happy that I don’t have to disclose to people who I get in contact with and, yeah, because there’s no need to because I’ve […been cured of] the virus.

Speaking with friends

Many of the participants often spoke with friends about hepatitis C treatment. While friends are generally described as a vital source of support, participants say they are careful about who they speak to about hepatitis C (see also, Dealing with stigma and discrimination). The accounts that appear here suggest that people affected by hepatitis C often encounter a range of responses when speaking with friends about the virus or treatment.

Mikey (M, 40, no treatment experience) says that he found out about hepatitis C after a friend was diagnosed with it in around 2016. He explains how he primarily thinks about hepatitis C in terms of its potential connection with his sex life. (Read his personal story here)

It was […] probably about five years ago [that I found out about hep C], you know, I saw a poster or something and thought, ‘Okay, cool’ and I didn’t really look into it much until it became relevant to my life, you know … Yeah, it would have been when I got diagnosed with HIV when I first started hearing about it and wondering what it was, and then when [my friend] got it, he talked to me a lot about it […] It’s more my sexual patterns [that makes hep C relevant to me]. I’ve been unsafe more than safe I’d say in the years of my sexual history, and even, to be honest, like, I’m very good about being open and communicating with anyone who wants to talk about it, but I don’t use condoms very well […] I’m very safe with my injecting, like, I don’t share needles, I don’t re-use needles, I’ve got all the safety gear with me, I even carry a kit, so in terms of that, like, it’s easier to get through sharing needles and through injecting than, I think, sexually.

On speaking to close friends about her hepatitis C, Regina (F, 69, experience with new treatment [DAAs]) found out some of them had also had it. She says that even though she doesn’t usually tell other people ‘everything’, it was ‘nice’ to find out that they also know about hepatitis C. (Read her personal story here)

Well, the only people I have told have been close friends, and the interesting thing was, was one of the close friends […] it turns out, he also had hep C, but he got […cured] a long, long time ago with interferon. I told another friend whose husband also has it, but […] I don’t know his story at all […] I think it […] came up in conversation or something along those lines. It wasn’t a ‘Oh, I’m going to disclose this to someone’ [type of moment]. It would have come up in conversation, I think […] They were people my age who lived through the same era, you know, who lived through the same time, so it was the same thing […It was] actually quite good. It’s nice to know that other people know [about it], but it doesn’t really matter to me. You know, I’m not one of these people who’s big on, you know, telling people everything.

Scott (M, 62, experience with old [interferon-based] treatment) explains that he has mainly spoken about hepatitis C only with close friends who have had similar experiences to his own. He says that this is why he rarely encountered stigmatising attitudes towards hepatitis C (see also, Dealing with stigma and discrimination). (Read his personal story here)

Yeah, most people I knew were fine, but there were some times when you come up against stigma and superstition and fear […] Well, just fear of the disease. It’s like people are scared of the coronavirus now. People are scared about any disease because they don’t know what it is, so they get fearful rather than, you know, trying to find out what it is or listening to you. Mostly, I […] had a fairly narrow group of friends in those days. We were all sort of birds of a feather, if you like. So, I didn’t have any problems, mostly because I used to be in a sheltered environment. Once I got outside of that, if I tried to communicate with people outside of that, yeah, it got [harder]. I didn’t even tell my family […] I was very careful. I didn’t tell a lot of people.

Some participants also detail how friends helped them overcome challenges that emerged while they were having treatment.

Giovanna (F, 58, experience with old [interferon-based] treatment) explains that spending time with her friend was a good strategy for managing some of the side effects of her interferon-based treatment. (Read her personal story here)

So, basically what I would do was do the injection on the Thursday night, take Friday off work, and then that sort of left the whole weekend to recover from that, and then I’d be okay to go to work on Monday. The other thing I was fairly determined to do was be physically healthy. So, I kept the gym up, because I was going to the gym once or twice a week, but at one stage, I couldn’t lift more than two kilos. I was really shocked. So, physically [the treatment] was impacting on me a reasonable amount and, you know, the other thing I do remember is every time walking up a flight of stairs, I was completely exhausted by the time I got up one flight of stairs. Then, you know, I was trying to keep myself mentally healthy, and luckily, I had a friend who also didn’t work on Fridays, and she’d pick me up in her car and we’d go shopping together for food […] That was actually quite a nice time, going to different farmers’ markets, going to different food shopping centres all over Melbourne. So, it turned out to be kind of a nice thing to do. So, I tried to use Friday as keeping myself mentally healthy day.

In thinking about the reasons they spoke to others about hepatitis C, some of our participants explain that they wanted other people to consider getting tested or having treatment.

Scott (M, 62, experience with old [interferon-based] treatment) describes telling others about his treatment experience and feeling ‘proud’ that he inspired them to look into treatment for themselves. (Read his personal story here)

Well, I had people to talk to at the time, so I was pretty lucky about that […] I was in AA [Alcoholics Anonymous] at the time [of my treatment] and […] in AA you’re not really supposed to talk about any other drug [issues] except for alcohol […] which is a lot of bullshit, but that’s the way it is. And when I started talking about hepatitis C and the treatment, I became, like, a bit of an inspiration for other people […] And so […] quite a few other people started [thinking about treatment]. They weren’t talking openly about it, but they talked to me about how they had hepatitis C and that they wanted to get treatment. So, I was pretty proud about that, that I could have an effect on people. They were open to listening to how I was going [with the treatment].

Given his disappointing experience with interferon-based treatment, Robbie (M, 54, experience with both new [DAA] and old [interferon-based] treatments) says that he recommends the new treatment to other people living with hepatitis C. (Read his personal story here)

Yeah, I was spewing [disappointed] that [the interferon] didn’t work. The doctor didn’t really explain a great deal, just that it didn’t work and, yeah, that I have to follow it up [again in the future]. So then I heard of this new treatment many years later, just the tablets, and went to the doctor and saw him about it, and he put me on the program […] I tell others about the program, if I hear they have hep C or anything like that, to do the program and see how they go, because it, yeah, worked for me […I tell them that] all this is is a matter of taking a tablet.

As Terence (M, 34, experience with new treatment [DAAs]) explains, while friends can be supportive, some people weren’t enthusiastic about the prospect of hepatitis C tests and treatment. (Read his personal story here)

I told friends of mine [about my hepatitis C and treatment…] Yeah, my friend was really supportive, and I spoke to someone who I used to inject drugs with and sort of said that ‘I tested positive for hepatitis C and, you know, I’m not able to definitively pinpoint the origin of it, but I think it’s a good idea [for you] to get tested [too].’ Yeah, they sort of weren’t too keen on the idea.

Managing work and speaking with colleagues

Some of the participants with experience of the old, interferon-based treatment described having to take time off work in order to manage its side effects, such as exhaustion, inability to concentrate and poor mental health. Stuart (M, 46), for example, left his job before starting a second round of interferon-based treatment, while Colin (M, 44) had to stop working a couple of months into his interferon-based treatment. Similarly, some participants such as Lou (F, 40, experience with new treatment [DAAs]) decided against having the old treatment after advice that it would ‘play havoc’ with her work commitments. Highlighting the difference between the new and old treatment, the participants with experience of the new treatment did not have these same concerns.

Giovanna (F, 58, experience with old [interferon-based] treatment) recounts negotiating with her manager to accommodate her treatment schedule in 2012. She also says that she spoke about her treatment with a colleague she felt she could trust. (Read her personal story here)

Well, I told my manager at work, because I had to explain to him why I had to take the leave in the way I did, and he was quite good. I mean, I explained to him, you know, why I needed to be on this regular cycle, and I’d got a certificate from the specialist indicating that Friday was the day I was often going down to the clinic to get things checked. So, I just took every Friday off. So, I told my workplace; well, one person. I did tell another person at work, because she did notice I actually lost quite a bit of weight, and she noticed that I couldn’t make it up a flight of stairs, which was unlike me, and it was someone I, you know, I felt that I could trust, so I told her at the end of the treatment.

Unlike people with experience of the old treatment, Chris (M, 60, experience with new treatment [DAAs]) didn’t need to take any time off work while having the new treatment. He explains how he was surprised he didn’t suffer from side effects. (Read his personal story here)

The treatment itself exceeded my expectations. I was thinking, ‘I am going to have that week off work when I start, because I don’t know if it’s going to be really fatiguing or if I will be exhausted or if it will make me sick.’ 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 […] The treatment was […] really benign and gentle.

NOTES

*While Gretchen uses the word ‘carrier’, the correct term is hepatitis C positive or negative. Someone with acute hepatitis C can pass it on to other people but may also go on to clear the virus spontaneously, that is, without treatment. Gretchen had an experience with spontaneous clearance, which means she still has hepatitis C antibodies in her body, but does not have the virus any more. In this case it is not possible for Gretchen to transmit hepatitis C.