A total of 56 PWID with lived experience of HCV were included in this analysis. Table 1 provides an overview of the socio-demographic characteristics of this sample. In addition, although not explicitly asked in our socio-demographic questionnaire, our interviews surfaced that many participants had experienced – and, in most cases, were still experiencing – significant socio-economic hardship, including living on very low incomes and in inadequate housing situations (e.g., couch surfing, shelters, outside). The social context of participants’ lives is surfaced throughout the analysis below, where we offer the findings in three thematic sections: (i) life with HCV, (ii) experiences with and perceptions of evolving HCV treatments, and (iii) substance use and the uptake of DAA treatments. Each participant quotation is accompanied by a brief description of the participant’s socio-demographic profile and a researcher-assigned numerical identifier.
Table 1: Characteristics of participants
Participants
|
56
|
Age (average, range)
|
49 (31-66) Years
|
Ethnocultural identity
First Nations
Métis
Black
White
Declined to answer
|
28 (50%)
3 (5.4%)
1 (1.8%)
19 (33.9%)
5 (8.9%)
|
HCV treatment status
Pre-treatment1
Peri-treatment
Post-treatment
|
25 (44.6%)
12 (21.4%)
19 (33.9%)
|
HIV serostatus
Positive
Negative
|
27 (48.2%)
29 (51.8%)
|
Sexual identity
Heterosexual/straight
Bisexual/bicurious
Lesbian
Gay
Two-Spirit2
Other3
Declined to answer
|
42 (75%)
4 (7.1%)
1 (1.8%)
1 (1.8%)
2 (3.6%)
2 (3.6%)
4 (7.1%)
|
Gender identity
Man4
Woman5
Two-Spirit2
|
29 (51.8%)
26 (46.4%)
1 (1.8%)
|
1This category includes one participant whose completed DAA treatment regimen did not result in cure, one participant who prematurely ceased DAA treatment due to adverse side effects, and one participant who re-acquired HCV after being cure with Interferon-based therapies several years prior. All of these participants expressed intent to (re)access DAA treatment.
2“Two-Spirit” is an umbrella term intended to encapsulate a range of Indigenous gender diverse and non-normative sexual orientations (55). There is no singular definition of this term, as its use varies across and within Indigenous Peoples and communities. Two participants in this study described their sexual identities as Two-Spirit, whereas another participant used this term to refer to their gender identity.
3In this category, one participant identified as transgender and another participant identified as androgynous. Although we associate these terms with gender identity and expression, this table presents the sexual identities indicated by participants themselves.
4All men who participated in this study identified as cisgender.
5One woman who participated in this study identified as transgender, whereas the remaining women identified as cisgender.
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Life with HCV: “We’re not really given all the information”
As the interviews began, participants reported having variable and sometimes limited amounts of clinical information related to HCV and its treatments. Among participants who had not yet accessed DAA treatment, in particular, several described experiences in which they had not been adequately informed by their healthcare providers about the meaning and potential impact of HCV (e.g., symptoms, transmissibility, prognosis, treatment options). Indeed, some of these participants even indicated that, through the interview questions and prompts regarding DAA treatments for the present study, they were being informed of DAAs for the very first time. Here, participants also described how the prevalent and often asymptomatic nature of HCV within their communities had led to HCV care being conventionalized and deprioritized by some healthcare providers. These participants further postulated that this “downplaying” of HCV had inadvertently affected the amount of HCV-related information they had been given and the extent to which they had been engaged by their healthcare providers in HCV care. Some participants indicated that HCV care continues to be deprioritized in today’s healthcare context, relative to other health concerns (e.g., overdose, HIV). One 53-year-old woman who had not yet been able to access HCV treatment described this critical information gap when outlining her experience of being diagnosed with HCV by her family physician:
Hep C is the least of the dangers [compared to other illnesses], but it doesn’t mean it’s not dangerous. And we’re not really given all the information about what organ it [HCV] hurts, what exemplifies it, or what could help on a daily basis to avoid it. Like, is it a growth, is it a, you know, a virus, like a liquid, or is it hardening or, you know, I don’t know any of those things (Participant_17).
Conversely, some participants described healthcare interactions in which they had been “overloaded” with information related to HCV and other aspects of their health, including, in particular, substance use and HIV. These participants described instances in which they had been unsatisfactorily supported by their healthcare providers and how, within this context, the shock of being diagnosed with HCV – and, in many cases, also HIV – had caused them to “close down” and not retain important information related to their illness and/or potential treatment options. More generally, several participants pointed to the ways in which previous and ongoing negative experiences within clinical encounters could impact their subsequent experiences and trajectories of care. For example, participants described highly dehumanizing clinical encounters (i.e., that lacked respect, empathy, and recognition of client choice) with healthcare providers, which they tended to associate with their ongoing mistrust of some healthcare providers. As such, participants emphasized that negative experiences with healthcare providers were strongly tied to a deep hesitancy they have around seeking follow-up HCV care, including DAA treatment. As one prominent example, one 55-year-old woman undergoing HCV treatment recounted the context in which, while in her 30s, she and her newborn son had both been tested for HCV and HIV:
I found out about my hepatitis C when I found out I had HIV. [. . .] I went and seen him [the physician], and he tested my son, he tested me. He said, “Come back in two weeks.” And when that two weeks came by, I went and seen him [again]. He goes, “Well, I’ve got some good news and I’ve got some bad news.” And I said, “What’s that?”. He says, “Well, first of all, you have hep C.” I said, “Okay.” And he goes, “And your son’s gonna live, but you, you’re gonna die.” I said, “What?” [laughs]. He goes, “Because you have HIV.” I said, “Okay.” And then, when he said I was gonna die, I just closed right down. . . I didn’t hear a word what he said (Participant_10).
As participants’ stories further unfolded, a subset described how, despite having lived with HCV for years or even for decades, they had largely been asymptomatic of HCV, and therefore had tended to de-prioritize seeking HCV-related information and/or treatment. In describing how she had lived with HCV for more than 20 years, one person reflected:
“I wasn’t really worried about it [HCV] because I was young and still healthy” (Participant_19; 46-year-old woman, also living with HIV, completed HCV treatment).
Some of these participants described how they had nonetheless begun treatment after being approached to do so by their healthcare providers during hospitalization or while accessing community-based healthcare for other co-morbidities. Characterized within these descriptions was a sense that decentralized, primary care-oriented HCV care had become increasingly commonplace in their local healthcare context. Alongside these healthcare system adaptations, many participants also indicated that their experiences of aging, the intensifying burden of late-onset and chronic HCV symptoms (e.g., fatigue, insomnia, depression, pain, jaundice), and, in many cases, the increasing toll and stress of living on a low income and/or in substandard housing had shaped a set of conditions in which they felt they needed to access HCV treatment. Here, one 45-year-old man, who had been living with HCV for more than 20 years prior and who had not yet been able to access treatment, described the subtle but gradual and regressive nature of HCV disease progression, which reinforced his present motivation to seek medical attention:
I just kind of [thought], like, “Oh, I’m young, you know. I’ll ignore it [HCV]. I’ll be alright and I’ll fight it off. I’ll be alright, you know. Now, I’m kind of wanting to [learn more about it], because I’m not getting frigging younger here, right? (Participant_04).
In summary, participants described how their healthcare interactions and the timing and impact of their symptoms while living with HCV impacted their knowledge, motivations, and experiences with HCV care access, including DAAs. In considering participants’ portrayals of life with HCV, we continue the analysis below by explicitly identifying participants’ perceptions and experiences related to HCV treatments.
Experiences with and perceptions of evolving HCV treatments: “The new one is way better than the old one”
The majority of participants described how, within the last 1-2 years (i.e., contemporaneously with the introduction of universal access to DAAs in BC, in 2018), they had become aware of DAA treatments through discussions with members of their peer and healthcare networks. Yet, several participants described continued uncertainty as to whether or not they were eligible for DAA treatments – particularly, if they had previously been denied Interferon- and/or DAA-based HCV treatments. Here, several participants also described a sense of ambiguity related to where, when, and how they could access DAA treatment. Amidst these descriptions, many participants’ stories chronicled the challenge of identifying and accessing healthcare services and providers with whom they could potentially begin DAA treatment regimens. For example, the above participant further explained:
I don’t know where to get it [DAAs], or if there’s any out there, or if we’re eligible for it. There’s not too much information about it, it seems like, you know? I want to get better, but there’s not too many places (Participant_04).
Similarly, several participants – namely, those who themselves had undergone Interferon-based treatments but who continued to be living with HCV – expressed ongoing apprehension about accessing DAA therapies, as they anticipated that the side effects would not be tolerable. During these discussions, it became apparent that participants had not received accurate information related to DAAs, as some were unaware that many of the side effects associated with Interferon-based treatments did not apply to DAA regimens. One 41-year-old woman described her deliberation about whether or not to access treatment with DAAs, which, at the time of the interview, she was about to begin:
“I was thinking about the side effects. Yeah, what with… like, I want to know what… if I took it [DAAs], what’s the side effects is, I guess. Yeah. I wouldn’t know, because I don’t know what kind of side effects it would affect on me, right? About taking the [DAA] pill” (Participant_03).
In a subset of interviews, participants described a sense of mistrust and skepticism toward the interests and motivations of HCV-related public-health and pharmaceutical-research officials. By association, these participants expressed significant caution and hesitancy regarding the safety of DAA treatments. Among these participants, some expressed skepticism that they might be treated as “guinea pigs” for experimental HCV treatments, which, in some cases, contributed to hesitancy to “take up” DAAs. For instance, while being prompted about DAAs by the interviewer, one woman, who was receiving HCV treatment and who opted not to disclose her sociodemographic data, described:
[DAAs] cost so much money. Now, why is it 700 dollars a pill now? This is what I was trying to find out, too: is this to cover the cost of the research before they can make the generic pills? Or, how come it costs so much money right now? [. . .] Was it tested on animals? [. . .] I don’t want to be a guinea pig. (Participant_52).
Nonetheless, amidst descriptions of learning about DAAs, several participants expressed excitement and interest in novel HCV treatment regimens, which, as participants further described, had often been presented to them (i.e., by peers, healthcare providers, and online resources) as more tolerable and more effective than Interferon-based therapies. Often, participants contrasted the perceived opportunities presented by DAA treatment regimens with their previous experiences with and perceptions of Interferon-based therapies. In doing so, participants frequently characterized negative attributes of Interferon-based therapies, including their adverse side effects, prolonged treatment durations, and relative ineffectiveness when compared to DAA treatments. For instance, one 47-year-old man, who had not yet been able to access HCV treatment, described how:
I know that there was a lot of side effects to it [Interferon-based treatments]. That’s what I heard about it. But the new one [DAAs] just kind of got me right off of it [referring to symptoms of low energy]. A lot of people are finding themselves getting treated of it [HCV], get cured of it, like, real quick. So yeah, the new one is way better than the old one, as far as from what I hear (Participant_07).
Concerns related to treatment side effects were further described by another participant who had not yet been able to access HCV treatment:
I was really scared because my friend did the [Interferon-based] treatment and he did not look the same. I thought he was going to die. [. . .] That scared me, and I said I wasn’t going to do it [treatment], until now I heard about the [DAA] treatments now, that they’re a little bit… you don’t get no side effects, so I’m really looking forward to that, kind of thing (Participant _048; 42-year-old Two-Spirit person).
In considering participants’ accounts of their histories with HCV and Interferon-based treatments, the data highlighted how the implementation of DAAs represents both a pivotal opportunity and a significant period of adjustment and uncertainty (e.g., related to treatment eligibility, side effects, access, and potential outcomes) for PWID living with HCV. Specifically, perceptions of DAA treatments and uptake of DAAs are deeply shaped by an array of experiential factors, including individual, interpersonal (e.g., peer influences), and community experiences with HCV and its treatments.
Substance use and the uptake of DAA treatments: “You don’t have to quit using now, but you can’t miss any doses once you start treatment”
Almost all participants described the ways in which their substance use, including alcohol, and related engagement with primary care and harm reduction services could be both a potential barrier and/or facilitator to equitable DAA treatment access. For example, in recounting their experiences across both Interferon- and DAA-based treatment eras, several participants described instances in which their substance use had been – and, in some cases, continues to be – characterized by health care providers as a contraindication to HCV treatment eligibility, despite this not being a policy-mandated contraindication. Indeed, the majority of participants described experiences wherein their physicians had either explicitly withheld HCV treatment, or recommended that participants stop or greatly reduce their substance use prior to accessing treatment. This denial of access to HCV treatments was described by one participant:
He [the physician] just wanted me to quit drinking [before I could start treatment], that’s all. And I could see his point. Yeah, but to force me to quit drinking and then say you’ll help me, that’s not right. I was living in squalor. I was couch surfing and everything and I said I want to get my own place, and he wouldn’t help me. [. . .] Then I moved to [name of another physician], and he got me right on it [DAA treatment], and then he cured me. So, big difference of doctors, isn’t it? (Participant_50; 52-year-old woman, completed HCV treatment).
As illustrated above, several participants described how they responded to healthcare provider gatekeeping of DAAs by seeking out more person-centered, equity-oriented, and power-balanced sources of HCV care. Participants’ accounts of navigating HCV services therefore highlighted their resiliency and determination in finding service providers who did not reproduce systemic barriers to safe, nonjudgmental, and high-quality healthcare. For example, participants described how they valued healthcare providers whose approaches to HCV care were supportive and grounded in harm reduction, as opposed to abstinence-based approaches. One 47-year-old man, who had not yet been able to access HCV treatment, explained:
[When I was diagnosed with HCV, six years ago], they [the healthcare providers] told me that it is treatable, right? But you have to be willing to stop doing this and stop doing that. I’m like, “I’m not willing to stop anything.” Like, using heroin and crack and coke and all of that B.S [bullshit]. But now that I cut myself down off of everything else, and I just stick to one dope now, which is heroin, [my current physician] said, “You don’t have to quit using now. You could still take your pill while you’re doing whatever it is you’re doing. But you can’t miss any doses once you start,” right? (Participant_07).
Several participants postulated that being able to have transparent and supportive discussions about their substance use facilitated open communication and the development of individualized HCV treatment plans. Participants further described how, in collaboration with their harm reduction-oriented healthcare providers. they had planned and implemented strategies for making HCV treatment more accessible and thereby more effective. These plans frequently included the integration of DAA treatments with other substance use-related services (e.g., OAT, HIV care, outreach and in-reach harm reduction services). Here, while a subset of participants described how their inclination to integrate DAAs with existing services stemmed from their concerns that they might otherwise forget to take their doses (and thereby risk making the treatments ineffective), the majority described how integrated services were simply a matter of convenience. One participant described how DAAs were incorporated into her daily routine of acquiring OAT (in her case, methadone) from her pharmacist:
Well, you just give it [DAAs] to them at the pharmacy then. Mine was taken every day at the pharmacy. It’s what I asked of them [my physician], “When I go get my methadone, just give it to me with that.” (Participant_24; 54-year-old woman, completed HCV treatment).
A subset of participants described how their treatment plans were made even more comprehensive through the involvement of multiple supports and services, including peers, partners, family, and housing and outreach workers. This support network was described as a sort of “safety net,” who, if needed, could remind participants to take their DAA doses. Similarly, some participants described how logistical and organizational features of support services (e.g., extended and weekend hours of operation, the potential to carry take-home doses of DAAs from pharmacies) could serve to promote treatment accessibility and adherence. At times when they were holistically supported, participants described feeling confident and optimistic about their experiences with DAAs:
I never forget [to take my DAAs], now. [. . .] I’m very vigilant now. I get up in the morning times, so I’m vigil[ant], so I know what I’m doing. [. . .] And, plus, the pharmacy’s aware of my situation, and knows that they have to phone me at a certain time to remind me that I have to come in. And, I’m grateful for that. Plus, I have the people at my apartment building [i.e., outreach workers] – they’re aware of my situation now, too. So, they come and do an eight o’clock wake-up call with me, to remind me to take my medication. So, I’ve got it down (Participant_05; 53-year-old woman, undergoing HCV treatment).
Across these findings, participants described how various features of the healthcare system and provider-patient interactions could reduce barriers and thereby promote opportunities for equitable DAA access and uptake. In particular, participants described the diverging ways in which their healthcare providers had framed their substance use as either a barrier or, through harm reduction-oriented approaches, a potential avenue for engaging participants in HCV care, including DAA treatments.