“I want to feel young again”: experiences and perspectives of young people who inject drugs living with hepatitis C in Vancouver, Canada

Abstract

Objectives

People who inject drugs (PWID) are disproportionately impacted by hepatitis C virus (HCV). Despite the availability and efficacy of direct-acting antiviral (DAA) HCV therapies, treatment rates remain low among PWID. Among PWID, those who are young (under age 30) experience high rates of HCV and also face distinct barriers to care. The objective of this study is to identify facilitators and barriers to navigating various facets of the HCV cascade of care, including DAA treatment access, among young PWID.

Methods

We draw on data from in-depth, semi-structured interviews conducted between May and November 2019 with a sample of 11 young, street-involved PWID who have lived experience of HCV and who live in Metro Vancouver, Canada. Informed by a social constructivist epistemology, data were thematically analyzed using an equity-oriented theoretical framework.

Results

Our analysis yielded two key themes. First, participants described facilitators to HCV care access, including individual factors (e.g., desire to be cured, knowledge of side effects) and healthcare and socio-contextual factors (e.g., peer supports, supportive youth-specific services). Second, participants described a contrasting set of barriers to HCV care access, including concerns over treatment side effects and (in)eligibility, complex healthcare system navigation, substance use- and housing-related stigma, and clinician gatekeeping of DAAs.

Conclusion

Findings from this study underscore the need for HCV-related knowledge-building efforts among young PWID and clinicians. Also needed are structural policy interventions to facilitate access to DAAs, including anti-stigma efforts, access to safe housing, and the scale-up of low-barrier youth-specific services and decentralized HCV care.

Introduction

People who inject drugs (PWID) experience disproportionately high rates of hepatitis C virus (HCV) infection (Smith et al., 2015). In Canada, approximately two thirds of PWID have evidence of past or current HCV infection, with up to 85% of new HCV infections occurring among the estimated 171,900 PWID population (The Canadian Network on Hepatitis C, 2019). Fortunately, the recent advent of highly effective direct-acting antiviral (DAA) treatments has increased opportunities to treat PWID and others living with HCV. Taken over 8–12 weeks, DAAs can achieve sustained virologic response (SVR; i.e., “cure”) to HCV in greater than 95% of PWID who complete treatment (Grebely et al., 2017). Despite well-documented clinical concerns related to PWID’s capacity for treatment adherence (Asher et al., 2016), available evidence indicates that PWID can clear HCV at rates comparable with those of other populations—particularly when treatment is integrated with other services, including opioid agonist therapy (OAT) (Bird et al., 2018). In 2017, to improve the accessibility and scale-up of these medications to all people living with HCV, the Canadian province of British Columbia (BC) implemented universal coverage for a number of formulations of pan-genotypic and specific DAA treatments (Lazatin & Little, 2018). Despite these advances, treatment uptake rates remain low (~10%) among PWID in BC, representing a significant gap in the HCV care cascade for this priority population (Bartlett et al., 2019; Young et al., 2018).

Within PWID populations, youth under the age of 30 are at highest risk of HCV transmission and likely represent the majority of new infections (Jacka et al., 2016; The Canadian Network on Hepatitis C, 2019). Effective HCV prevention efforts will benefit from early diagnosis and treatment of groups with high incidence of infection and reduce the rate of onward transmission (Hajarizadeh et al., 2016). Preventing the further progression of HCV disease sequalae via treatment also reduces cost and service requirements of the healthcare system, as early treatment with DAAs can reduce risk of developing adverse HCV-related clinical outcomes, including liver cancer and end-stage liver disease (Leleu et al., 2015). However, young PWID face distinct contextual and structural barriers to healthcare that are both similar to and distinct from adult populations, including stigmatization, unstable housing, experiences with violence and trauma, access to transportation, and “ageing out” of adolescent services (Phillips et al., 2014; Wisdom et al., 2010). To adequately scale up HCV treatment services to young PWID, a greater understanding of the “real world” contexts and conditions under which this population experiences treatment is required. The objective of this study is therefore to identify facilitators and barriers to navigating various facets of the HCV cascade of care, including DAA treatment access, among a sample of young PWID in Vancouver, BC.

Methods

This study takes place in Metro Vancouver, BC, Canada—a city that has been particularly hard hit by overdose and housing crises, with dramatic impacts on local PWID, including youth. We drew on a purposive sampling strategy (Palinkas et al., 2015) to recruit a diverse sample of participants from the At-Risk Youth Study (ARYS), a prospective cohort study with street-involved youth who use substances that includes semi-annual interviews and testing for bloodborne viruses, including HCV (Wood et al., 2006). For recruitment, the ARYS research coordinator liaised with the ARYS study research nurse to identify prospectively eligible participants, who were then referred to our study research coordinator to obtain additional study information, confirm eligibility, and schedule interviews. All eligible participants agreed to participate in the study (i.e., none declined). Eligible participants had previous or current experience with injection drug use, were between 19 and 30 years old, and had self-reported lived experience of HCV, which included those living with HCV and those who had attained SVR.

Between May and November 2019, we conducted in-depth, semi-structured interviews that lasted 20 to 60 minutes each and that were held in our field office in Vancouver’s Downtown South. The interview guide was designed to encourage discussion related to substance use, HCV prevention, and perspectives and experiences related to HCV care access.

Interviews were recorded, transcribed, and managed with NVivo software. Using an open-coding approach, we organized codes into ‘trees’ to group the codes and identify preliminary themes. Next, we developed codes within the ‘trees’ as subsequent themes emerged. Initial coding was conducted by two experienced coders, whose approaches were deemed sufficiently comparable following inter-coder reliability assessments. Next, we employed thematic coding processes involving both inductive analytic approaches as we developed the coding schema and general themes, as well as deductive approaches as we compared our findings with the existing literature in this area (Bradley et al., 2007). This analysis drew from a social constructivist epistemology that is primarily grounded in our equity-oriented positioning as critical public health researchers, including via the use of a theoretical framework related to HCV treatment access (Høj et al., 2019). From this theoretical and axiological standpoint, we conceptualize access to HCV care as structurally embedded, and we therefore approached data collection and analysis with a view to elucidate the various micro-, meso-, and macro-level factors that influence health and healthcare access opportunities. This framework oriented our analytic gaze to, for example, how individual motivations, clinician-client relations, attributes of health service delivery models, and features of the broader socio-political environment (e.g., stigma, poverty) intersect in ways that may shape (in)access to HCV care.

A number of steps were taken to maintain high ethical standards throughout this study, which was approved by the University of British Columbia Providence Health Care Research Ethics Board (#H16-02943). All participants provided written informed consent and were remunerated with a CAD$30 honorarium. The interviews were conducted in a private space and participants (and their interview data) were assigned de-identified numeric codes to protect confidentiality and anonymity. A research coordinator experienced in community-based, qualitative methods led all of the interviews, which were designed to be strengths-based and trauma- and violence-informed. For example, participants were encouraged to share only as much as they felt comfortable, and they were also informed that they could skip any question at any time. Our team also has highly developed standards in place for responding to issues of disclosure (e.g., abuse, self-harm, suicide), including with minors; yet, no such disclosures occurred in this study.

Results

We interviewed a total of 11 participants. Table 1 provides an overview of the socio-demographic characteristics of the sample. Below we present our findings in two themes: (i) facilitators to treatment access, and (ii) barriers to treatment access.

Table 1.

Characteristics of the study participants

Participants	N = 11
Age (average, range)	27.7 (25–30) years
Ethnicity1
White  White + Indigenous  Arab/Middle Eastern  White + Indigenous + Black	8 (73%) 1 (9%) 1 (9%) 1 (9%)
Gender identity
Man  Woman	7 (64%) 4 (36%)
Sexual orientation1
Gay  Straight  Two-Spirit  Bisexual	2 (18%) 6 (55%) 1 (9%) 3 (27%)
Housing
Apartment/house  Shelters or unsheltered/outside  Single room occupancy hotel/modular housing	3 (27%) 5 (46%) 3 (27%)
Income source1
Government income assistance  Selling drugs  Selling clothes  Shoplifting  Busking  Panhandling  Full-time work	10 (91%) 2 (18%) 1 (9%) 1 (9%) 1 (9%) 1 (9%) 1 (9%)
Opioid use
No current active use  Current active use	3 (27%) 8 (73%)
Experience with OAT2
Yes	11 (100%)
Context of HCV diagnosis
Hospital admission: liver-related illness  Hospital admission: other health concern  Routine bloodwork  Youth community organization	1 (9%) 4 (36.5%) 2 (18%) 4 (36.5%)
HCV status
HCV seropositive; not currently being treated  Spontaneous clearance of HCV  DAA-induced clearance of HCV	8 (73%) 2 (18%) 1 (9%)
Additional health concerns1
Mental illness  Chronic pain  None	4 (36%) 1 (9%) 6 (55%)

¹Participants could provide more than one response

²Participants described having accessed various forms of OAT, including methadone, suboxone, and/or injectable diacetylmorphine

Facilitators to treatment access

The pursuit of HCV cure and a healthy lifestyle

The majority of participants described how the opportunity to be symptom-free from HCV—particularly with regards to low energy levels and fatigue—was a key motivating factor for accessing DAA treatment. As participants elaborated, some discussed how being cured of HCV could support them to prioritize other aspects of their lives, including finding work or addressing their substance use, including starting opioid agonist therapy (OAT)—something they described as wanting but feeling unable to do with their current situation.

“Well, I’d like to, you know, get back on the road to recovery […] I’m just really, you know, in my head I’m thinking, ‘Yay, I can’t wait to get this treatment so that I can move on with my life.’”—Participant 72, a 28-year-old woman currently living with HCV

Participants also described how the onset of new HCV symptoms could be a jarring experience, particularly when they contrasted their experiences of otherwise being young and healthy. For participants who had no additional comorbidities, the adjustment to life with HCV was described as especially challenging. For example, a 25-year-old man living with HCV described:

“Since getting Hep C, I feel like I’ve aged at least 30 years. And my big hope was that is reversible. I would like to be treated, be cleared, take care of my health for a year, and then actually feel good again. I want to feel young again, you know?”—Participant 66

Participants expressed interest and willingness to take steps to facilitate positive change in their lives. For example, some described a sense of self-resolve in trying to “beat” the virus on their own accord by attempting to lower or eliminate their substance use, eat healthier, or begin OAT. Additionally, some viewed overcoming HCV as a way to “fight back” against the substance use- and HCV-related stigma they faced.

“I just want to, like, feel and, just be more ‘clean’ […] A lot of drug users have Hep C and it’s sort of just not a good look. I mean, it’s, like, you know, bad enough, like, being on methadone […] You feel just, like, a fucking statistic, right? Like, oh, this percent of people end up with, you know, this disease, like, after doing drugs for this many years […] And they basically just turn us all into numbers. Anyways. So, I always wanted to try and be different.”—Participant 68, a 27-year-old woman cured of HCV following DAA treatment

Inner-city youth programs and services

Participants described how their sustained engagement with youth-specific programming (e.g., drop-in services that provide meals) influenced their likelihood of being formally connected to the healthcare system in ways that could facilitate connections to HCV care. For example, participants described how their previous experiences accessing inner-city youth service centres had provided critical opportunities for them to establish trusted relationships with a doctor or nurse. In many cases, their experiences engaging with healthcare providers in these settings began with broad discussions about other facets of their health (e.g., nutrition, substance use), but narrowed in on issues related to HCV shortly thereafter. Some participants would only feel comfortable discussing their HCV status with their healthcare providers at youth centres they frequented. As such, participants who had received care through these inner-city services tended to have trusted information about HCV from a reliable source. For example, one of the aforementioned participants explained:

“I talked to my doctor at ICY [Inner City Youth], like, a hundred times about everything to do with it, and I don’t know, I guess, sort of, like, I understand the facts. I know where it [HCV] lives in my body, I know how I would pass it if I were to pass it.”—Participant 66

Several participants indicated they had been initially diagnosed with HCV via their connections to these programs. In contrast, those who were diagnosed at tertiary health centres (e.g., in-patient hospital settings) where they did not know their care providers described having much different experiences. For example, a 26-year-old woman was diagnosed with HCV at age 23 while she was admitted to hospital for an unrelated health condition. She had a fairly traumatic diagnosis disclosure, which involved a breach of confidentiality, and did not receive any information on HCV from her care providers at the time. Following this experience, illustrated in the quotation below, she was not connected to follow-up care and therefore had to independently contact a trusted nurse at her inner-city youth centre for more information on HCV. This gap in follow-up care was attributed, in part, to a perceived lack of communication and coordination between hospital-based providers and youth primary care services where participants were already connected.

“She [the nurse at the hospital] is, like, ‘Oh, well, your bloodwork came back and we found out that you have Hep C. You know you have it, right?’ And I was, like…in front of my dad and my boyfriend. And that’s kind of confidential information, right? And she said it right there in front of them. And they were shocked. I started crying my eyes out!”—Participant 65

Concerns about and experiences with “ageing out” of youth-focused services represented a distinctly poignant barrier to ongoing care. The process itself, which describes the transition from youth services to adult services, was referred to as “rushed”. The age limits for clients accessing youth programs and services (e.g., upper limit of 25) were perceived by some participants as having contributed to a lower level engagement with primary care clinicians after transitioning out of these programs. For example, one participant described the impacts of poor follow-up from health services after “ageing out” of care:

“I had two doctors and a psychiatrist [from an inner-city youth program] and they were herding me through, you know, what I needed to go through, even though I was incoherent and incompetent, they were really doing their best to help me. But since July I haven’t had a doctor. I haven’t been able to go there and no one is following my case. I am certainly not following my own case ‘cause I’m too fucked up and so my health is really started to deteriorate.”—Participant 66

Universal, accessible, and structurally responsive HCV care

Participants were enthusiastic about the merits and tolerability of DAAs, which they contrasted to side effects associated with older interferon-based treatments. For these participants, the simplicity of DAAs meant that they could maintain their lifestyle, routine, and general well-being without having medications—and their side effects—affect the stability of their lives. Furthermore, participants expressed a sense of relief that DAAs were free (i.e., universally covered by BC PharmaCare).

Regarding access, participants favoured service delivery models that were responsive to pertinent social structural factors affecting their lives and health, such as housing status, relationship with healthcare providers/organizations, or OAT status. Those who were unsheltered preferred once-daily delivery at pharmacies or clinics as they expressed concerns that they could lose their medication if they were dispensed too much at a time. If participants were visiting a clinic for OAT or other health services, they would be amenable to having their DAA administered simultaneously. Trusted organizations that PWID already frequented, namely clinics providing OAT or care related to addictions medicine, tended to be raised as the most ideal locations for acquiring DAAs.

“I could ask my doctor even to do that for me to […] Go in once a day to go get the pill, even if I’m not on any opiate replacements [OAT].”—Participant 72

Barriers to treatment access

Experiencing HCV as asymptomatic

Participants who were not experiencing symptoms of HCV generally indicated that they did not feel a sense of urgency to access care or begin treatment. Even for participants experiencing fatigue—a symptom associated with HCV infection—many attributed their low energy levels to other issues in their life (e.g., substance use, poor nutrition) rather than to their HCV status. For these participants, fatigue tended to precipitate the de-prioritization of HCV, which was described as something to be addressed at a later date. In describing this context, one participant shared:

“In my addiction, I wake up not feeling too well and so, uh, I wouldn’t be able to measure it [level of fatigue] to having a sober, opiate-free, consciousness […] I pretty much always feel like shit, so.”—Participant 64, a 28-year-old man living with HCV

Information gaps related to HCV and DAAs

Participants characterized the time of diagnosis as an opportune window for receiving information about HCV and DAAs. However, some participants also recounted how, at the time of their HCV diagnosis, they had only received HCV-related information through pamphlets and brochures rather than face-to-face discussions with their healthcare providers. These participants described how the lack of support and attention regarding the key “next steps” for accessing DAAs represented the beginning of an important information barrier to HCV care.

“They just sort of gave me, like, a pamphlet, I think, and sent me on my way.”—Participant 67, a 25-year-old man living with HCV

Outside of the clinical context, many participants indicated that they also received HCV-related information through their peers. For example, several indicated they frequently hear about health-related experiences and stories from others in their communities. This network-based information-sharing strategy was perceived favourably among participants; yet, as our interviews continued, it appeared as though much of the information that participants were receiving from their peers and communities did not accurately reflect the pharmacological features (e.g., duration, side effects) of DAAs, nor the eligibility framework for universal coverage of DAAs.

“I heard this girl had four times she had treatment done. Some girl in the Downtown Eastside but I don’t know how it works but I’ve never had treatment, I just got cleared, but I heard that you… the first time is free and then you have to pay after that or something?”—Participant 65, a 26-year-old woman, cleared HCV spontaneously

For example, some participants who were afraid of side effects relating to the medication often cited stories from peers as the origin of their fear, and these stories seemed to stem from previous interferon-based medications—not DAAs—based on how participants emphasized concerns about the severity of side effects. Nonetheless, these interpretations about peers’ stories with HCV medication side effects deeply influenced their decision-making processes around initiating DAAs.

Substance use as a complicating factor in HCV care

All participants described how their various day-to-day activities could take precedence over the time and energy required to navigate what they perceived as a highly complex system of HCV care. For example, a subset of participants described the need to prioritize various income-generation activities, which allowed for little time to think about and/or access HCV care. More generally, however, participants described how much of their time and attention was required to address concerns related to their substance use, which restricted opportunities for them to engage in and complete HCV treatment.

“You know, I just never thought about it. You know, I wouldn’t wake up every day and be, like, “Oh, what am I gonna do for my Hep C?” […] I just went on doing what it is that I do. You know, getting up every day and doing the grind, doing my dope.”—Participant 62, a 28-year-old woman living with HCV

Participants who were using opioids described how they wanted to first address their substance use before beginning DAA treatment, with stabilization on OAT being surfaced as a key prerequisite to initiating DAAs among those who use opioids. For instance, several discussed how they feared DAA medication could destabilize their routines or hinder their recovery process in other ways (e.g., via drug interactions).

The specialist-led HCV care model

Participants noted that the time between their experiences with HCV testing and treatment initiation involves multiple and, at times, burdensome appointments with an array of primary care and specialist (e.g., hepatologist) healthcare providers. Participants described how this process contributed to long delays in moving from testing to treatment. For example, one participant, a 30-year-old man, explained that his experience trying to get DAA treatments lasted several years. Ultimately, he was given special approval for DAA treatment without having viral load testing done in 4 years, highlighting the lack of follow-up that can occur for youth who use drugs living with chronic HCV. Similarly, some participants had only recently learned about DAA treatments, despite having lived with untreated HCV throughout the introduction of DAAs in the BC setting:

“I’m only now, like, recently finding out about this treatment and been waiting three months [for treatment], so, you know, who knows, I could be gone any day and not receive treatment. […] I was a little upset with it because, like, if I was to be, like, dead tomorrow, you know, that’s kind of ridiculous.”—Participant 72

Stigma and access to care

Participants described how interactions with healthcare services tended to involve some level of stigma and discrimination. The stigma participants experienced tended not to be attributable to their HCV diagnosis in particular, but, rather, entwined with other aspects of their social locations and identities, including experiences of stigma associated with being racialized or housing insecure, and related to being sexual and/or gender minorities. Participants described perceptions that their healthcare providers did not trust or expect them to show up for appointments, let alone adhere to prolonged treatment regimens.

“I felt pretty small around him [my family physician] […] I think he treated me differently because I was gay, and having hepatitis C was just one more [thing] for him to, I don’t know, to use against me. Not use against me, but to look down on me. Another reason for him to look down upon me.”—Participant 61, a 30-year-old man, cleared HCV spontaneously

All participants described either previously or currently not believing they were or are eligible for DAAs, specifically referencing that they had thought their active substance use, perceived ‘high risk’ of reinfection, and/or experiences with unstable housing could represent contraindication(s) for HCV treatment initiation. These concerns originated from first-hand and community accounts of individuals being denied DAA treatments by their healthcare providers.

“They’ve also told me I couldn’t take it because I’m not housed[…] I guess, well, the general assumption I got was that they thought they would be wasting it on me if I started the treatment because I wouldn’t finish it. So, they just stopped me before I even got a chance to start. That’s that.”—Participant 66, a 25-year-old man currently living with HCV

“I don’t know if this is true, but I was always told that I had to be off drugs to get on the treatment.”—Participant 70, a 29-year-old man living with HCV

Discussion

The scale-up of DAA treatments is poised to facilitate HCV treatment efforts among young PWID in many settings, including in BC, Canada. Yet, as this study identifies, a series of individual, social, and structural barriers are restricting opportunities for this priority population to access HCV treatments. Drawing on their experiences across various stages of the HCV care cascade, participants in this study described how HCV-related knowledge and perceptions (e.g., desire to be cured, fear of medication side effects, illness- and treatment-related information deficits) and other features of the healthcare system (e.g., provider-patient dynamics, models of care, trusted and youth-specific services) shaped access to HCV treatments, particularly during key transition periods of participants’ lives, including “ageing out” of youth services. More generally, participants tended to describe the ways in which marginalizing structural influences (e.g., stigma, unstable housing) restricted opportunities for equitable HCV care and outcomes.

Findings from this study highlight the ways in which information gaps related to HCV and its treatments shape access to DAAs among young PWID. For example, participants described how key knowledge deficits (e.g., related to DAA side effects and eligibility) had prevented them from achieving pertinent health and social goals, including those related to HCV clearance and symptom alleviation. Given that participants also described being inadequately supported and informed about HCV and its long-term sequelae at the time of diagnosis, findings from this study identify the quality of patient–provider interactions and the information exchanged therein—particularly at time of testing and diagnosis—as key determinants of HCV treatment access and uptake. Findings of this nature have been documented in the context of HCV care with adult PWID, where similarly, a lack of knowledge-sharing and follow-up planning stopped participants’ progression through the HCV care cascade (Falade-Nwulia et al., 2020; Richmond et al., 2018). This underscores the ongoing need for clinicians working alongside young PWID to provide high-quality, accessible information related to HCV treatment. Relatedly, these findings underscore the need for better communication and care coordination processes within the healthcare system and between its providers, including, in particular, between hospital-based and primary care providers, and youth and adult services to ensure continuity of care. In addition, these findings highlight the need for additional public health and community-based efforts to “change the narrative” of HCV care (e.g., related to: [in]eligibility, side effects) among young PWID, their peer networks, and the health systems with which they interact, such that this narrative reflects up-to-date information and guidelines pertaining to DAAs. Here, peer-led interventions are particularly well poised to promote treatment access among young PWID, given the significance of network-based health information-sharing practices within this population during adolescence and young adulthood (Jacob et al., 2020). To facilitate opportunities for the informed uptake of DAAs, additional research and programmatic efforts to identify and implement strategies to promote evidence-based HCV care, including through improvements in the quality and accessibility of provider–patient and peer-to-peer education, are critically needed.

Findings from this study also highlight the ways in which access to HCV care can be hindered by a variety of structural barriers. For example, although participants described being interested in and willing to begin HCV treatment, they concomitantly described the intersecting ways in which stigma, inadequate housing, poverty, and the need to prioritize income-generating activities had deterred them from accessing DAAs. Of particular concern, participants specifically recounted instances in which they had been unjustly denied access to HCV treatment, including on the basis of their substance use and/or housing status. These concerns are being further circulated in young PWID networks, thereby potentially leading to a widespread sense of ineligibility. These findings are also cause for significant ethical concern and contradict the existing standard of care for DAA treatment provision, as existing guidelines in Canada and elsewhere indicate that all patients with chronic HCV infection should be eligible for early initiation of DAA treatment (Shah et al., 2018).

This study also surfaced key policy and programmatic opportunities to improve HCV-related health service delivery for young PWID. For example, participants described the importance of having access to safe and trusted sources of healthcare, which they most often found through youth-specific services. Furthermore, those diagnosed with HCV at youth-focused community health services had a better knowledge base and more access to follow-up than those diagnosed in tertiary settings. These findings align with the extant literature, as facilitating access to low-threshold youth programs to engage with HCV care, and in particular, treatment provision, is known to expand opportunities to reach young people in a pre-established and trusted manner (The Canadian Network on Hepatitis C, 2019). Accordingly, we join the calls of other scholars to scale up these programs in the context of addictions and HCV care (Russell et al., 2019). However, particular attention should focus on the period in which youth can “age out” of youth-specific services, a period that was described as posing especially challenging barriers to HCV care access if no plans for continuity of care have been arranged. Participants described how this process can lead to feelings of being rushed out of familiar services and having to rely on themselves to manage various health concerns. Guidelines for transitioning youth to adult care exist but require early action on the part of both the health provider and the patient (Canadian Association of Pediatric Health Centres, 2016), a process that is far more difficult among populations already facing many barriers to care. Thus, these findings also highlight the demand for low-threshold HCV-related adult services in order to ensure a smooth transition—including those particularly targeted toward the distinct healthcare needs of early adult PWID.

In this study, participants also described how the delay between HCV diagnosis and treatment initiation could be attributed, in part, to the current, multi-step, specialist-led model of HCV care. This specialist-led model of care can create additional barriers to HCV treatment access, as it can prolong the period before treatment initiation (e.g., due to referral processes and waitlists), and because PWID living with HCV may feel unsafe accessing care from unfamiliar and untrusted healthcare providers, including due to concerns over the potential to experience stigma (Goodyear et al., 2020; Varghese et al., 2020). Decentralizing and expanding HCV care into more routine, trusted primary care models may further enhance opportunities for young PWID living with HCV to access care. This process of creating low-threshold community-based programs for young PWID has already been shown to improve linkage to care in the context of harm reduction (Bozinoff et al., 2017; Rossi et al., 2018; Ti et al., 2018). Recent studies have shown the positive effects of transitioning to primary care-led models for HCV treatment in the adult PWID population (Milne et al., 2015). Given our results align with the literature underscoring the importance of inner-city youth centres for young PWID accessing healthcare, we argue a similar low-threshold community care model for HCV treatment may yield positive results in improving access throughout the HCV care cascade.

This study has several strengths and limitations. First, we were only able to recruit 11 participants, which represents a relatively small sample size. Relatedly, only one participant had actually undergone DAA treatment; additional research is needed to explore this population’s experiences and trajectories more fulsomely after HCV clearance. Despite these limitations, participants in the current study provided diverse and highly contextualized descriptions of their perceptions and experiences related to the HCV cascade of care. Second, while our purposive sampling approach facilitated the recruitment of a fairly diverse sample, there was an imbalance in the ethnic distribution of our sample. In addition, limitations to our study design and data collection methods used restricted our capacity to fully identify and characterize intersectional differences in participants’ experiences, including with respect to their various social positionalities and past lived experiences and contexts. Future research would benefit from targeted approaches that investigate how experiences of HCV care vary across and within subpopulations of young PWID, with particular attention to how aspects of social position (e.g., ethnicity, gender, sexuality) interact with systems of oppression in ways that may influence HCV-related health and healthcare access opportunities. Last, the transferability of this data to other jurisdictions will depend, in part, on the kinds of HCV-related and youth-specific care available. For example, Vancouver, Canada, has various youth-focused, low-threshold services specifically tailored for youth who use drugs, which may not be the case for other cities in Canada and internationally, particularly in rural and remote areas.

Conclusion

Findings from this study underscore the need for HCV-related knowledge-building efforts among young PWID and clinicians. Also needed are structural policy interventions to facilitate access to HCV care, including DAAs, such as through anti-stigma efforts, access to safe housing, and the scale-up of low-barrier youth-specific services and decentralized HCV care.

Contributions to knowledge

What does this study add to existing knowledge?

• This qualitative study adds to our understandings of how young, street-involved PWID are navigating the HCV cascade of care in Vancouver, Canada.

• Our findings address gaps in knowledge by characterizing the distinct facilitators and barriers to accessing curative DAA treatments faced by this subpopulation of PWID.

• Identified facilitators to care include individual motivation to be cured and “to feel young again,” knowledge of treatment effectiveness and side effects, and comprehensive peer and youth-specific programming supports.

• In contrast, barriers to care include concerns about HCV treatment side effects and (in)eligibility, onerous health system navigation, and stigmatization and clinician gatekeeping of DAAs.

What are the key implications for public health interventions, practice, or policy?

• This study underscores several youth-tailored policy and practice recommendations for transforming HCV care with PWID.

• Implications for practice include demand for knowledge- and capacity-building efforts among clinicians working in HCV care, particularly to overcome stigmatizing assumptions related to DAA treatment provision, such as withholding treatment on the basis of youth’s substance use and/or housing status.

• Also needed are enhanced communication and care coordination processes among clinicians, young PWID, and peers, especially as youth “age out” of youth-specific services.

• Policy transformations, such as the scale-up of decentralized HCV care and low-barrier youth services, hold additional promise for improving DAA treatment access.

Author contributions

Jessica Jacob led the analysis of data and conceptualized, wrote, and revised the manuscript. Rod Knight conceptualized the study, obtained study funding, contributed to data collection and analysis, and provided mentorship in writing this manuscript. Peter Hoong led data collection and contributed to data analysis and manuscript revision. Trevor Goodyear, Pierre-julien Coulaud, and Lianping Ti contributed to data analysis and offered critical revisions to the manuscript. All authors read and approved the final manuscript.

Funding

This study was funded by the Canadian Institutes of Health Research (Grant PJT-148922). Rod Knight and Lianping Ti are supported by Scholar Awards from the Michael Smith Foundation for Health Research. Trevor Goodyear receives trainee support through the Canadian Nurses Foundation and the US National Institute of Drug Abuse (Grant R25-DA033756).

Data availability

All data required to make the conclusions reached in this manuscript are included here.

Declarations

Ethics approval

All procedures performed involving human participants were conducted in accordance with the ethical standards of the institutional research ethics board at the University of British Columbia (H16-02943) and with the 1964 Helsinki declaration and its later amendments.

Consent to participate

Informed consent was obtained from all individual participants included in the study.

Consent for publication

Participants signed informed consent regarding publishing de-identified excerpts from the interview data.

Conflict of interest

The authors declare no competing interests.