Our scoping review on screening, diagnosis and treatment of hepatitis C in Canada addressed CADTH’s goal to incorporate a broader set of social values into HTA [
9]. Utilitarian-focused HTA processes may result in inequities in access to screening, diagnosis and treatment programs, because they may disregard important contextual factors specific to vulnerable populations or they may disregard the full social value of the intervention. Further, we identified the diversity of populations affected by hepatitis C and the lack of consensus on how to approach resource allocation decisions. Inclusion of the values, ethics and perspectives of affected populations needs to be considered in designing in HTA decision-making [
8]. The following discussion positions our findings on screening, diagnostics and treatment in the literature, followed by a discussion of social values relevant to each study population and study location.
Screening
In light of access to new DAAs, opinion on the cost effectiveness of HCV screening is divided between (1) those who advocate for widespread access to enable access to necessary services [
46], decrease stigma [
9,
47,
48], and raise awareness, those who advocate for birth cohort and high-risk population screening, and (2) the Canadian Task Force on Preventive Health Care that recommended no screening for the baby boomer cohort [
49]. CADTH suggests that individuals who make the decision to participate in screening programs, take into consideration their life situations and recognition of the stigma associated with screening [
50].
Our analysis suggests equity and justice arguments predominate in the literature in support of screening for members of vulnerable populations in addition to some calls for screening for the boomer cohort and those who received blood transfusions prior to 1992. Screening in vulnerable populations seeks to address HCV-related morbidity and mortality [
46], both of which are increased if individuals remain unaware of their HCV status and have not been reached by traditional programs due to stigma and lack of trust in health care systems [
50‐
52]. Fear of judgment when interacting with health care providers negates the positive effects of screening [
48].
Authors advocate for an equitable approach to screening amongst populations such as PWID, which has the added benefit of enabling access to other social and health services [
46]. This body of literature suggests that screening programs be made available without barriers to achieve an equitable approach. Equity arguments are also made with respect to prison populations. While HCV infected prisoners may pose a risk to other prisoners, prisoners also have a right to the same standard of healthcare services provided outside of prison [
53].
Further there is support in the literature for a duty to provide screening programs, because it helps raise awareness of HCV, mitigates the spread of infection [
47,
48] and provides a public health benefit [
47]. It is, therefore, important to address the accessibility of screening services [
54].
Treatment
New DAAs are challenging health system budgets in Canada [
59], and, to date, there are few implementation guidelines [
9]. DAAs provide greater sustained virological response and fewer side effects [
48], however, access for many populations remains limited [
50,
60]. Some studies consider that the prevention of worsening disease and reduction in the need for invasive procedures offsets the initial high cost of treatment [
61]. However, this approach in a large population has significant budget impact, creating substantial opportunity costs for the funding for other health care services [
9,
61]. As a result, Canada has adopted a model that prioritizes those with more severe disease (fibrosis score greater than 2 on a 4-point scale) [
61], but this approach does not capture the proposed benefits of treatment as a means of preventing transmission, a strategy that requires further cost-effective analyses [
62].
The literature on high-cost therapies focused on efficiency and population benefit and recognized the high patient demand for treatment, but there was no consensus on which population should be prioritized for treatment [
63]. Some stipulated that treatment management is necessary to ensure cost-effectiveness in combination with treatment prioritization for high-risk populations [
64]. Some discussed social values with respect to access to medication for marginalized populations, which remains problematic in Canada’s health care systems [
65].
Population specific considerations
A range of social values was evident in the literature on HCV screening, diagnosis and treatment for both vulnerable and non-vulnerable populations.
PWID are the population at the greatest risk for acquiring HCV [
50,
66], raising issues of a duty to provide care with obvious population health benefits [
50,
66]. Indeed, “the time has come for a targeted and proactive HCV treatment approach for [PWID], and that it is feasible and desirable from a public health perspective” [
67]. A targeted suite of HCV-related services for PWID would both meet the needs of a large and vulnerable population and reduce the transmission of HCV [
67‐
69]. A community based and multisectoral approach to treating HCV amongst PWID would tackle more than just the clinical effects of the disease; it would positively impact the social determinants of health, by connecting PWID with a broader range of services [
70]. Specifically, targeted screening services might enable healthcare providers to address both physical and psychological concerns and connect PWID to other services [
12,
47,
64,
71].
Authors concluded that a targeted approach to screening, diagnosis and treatment of HCV would reduce inequities through provision of accessible, effective care. However, social stigma of drug use creates inequities in healthcare. PWID are faced with the bias of health care professionals in terms of willingness to provide high cost therapies [
44,
70], though studies have found similar sustained virologic responses [
46]. Practioners and institutional structures reinforce stigmatization of PWID patients; their symptoms are commonly discounted or PWID are underserviced [
43]. Such stigmatization of PWID may lead to the devaluation of persons, which transforms HCV from a health issue into a moral one [
72]. A resultant and societal belief is that PWID are less deserving of care than other patients, because their HCV is perceived as the result of self-inflicted cause [
43].
Social values with respect to prison populations primarily fell in the categories of equity and justice and the duty to provide care. An example of the latter derives from Canadian Correctional Services (CSC), which stipulates that inmates are owed access to health care services and should not have different outcomes due to imprisonment [
40,
53,
73]. Numerous authors suggested that a targeted treatment program for HCV positive members of the prison population would be just and economical [
63,
67]. It would provide treatment to an overlooked population with a disproportionate rate of HCV infection, members of which might not otherwise seek treatment [
40,
53], thereby maximizing population benefit by decreasing transmission both within and outside prisons [
40]. However, the provision of health care services for this population remains largely insufficient, with the needs of individuals not being met or met with significant barriers to access [
74].
This lack of access is contrary to the guarantees for universal, comprehensive and accessible health care in the
Canada Health Act. There is a culture of depersonalization within the prison system, whereby prisoners are not seen as persons but more so as “permanent criminals”, who are not prioritized for screening [
53] or treatment [
74]. Such depersonalized treatment results in prisoners being treated as less deserving than other populations [
74]; they are neither provided with adequate care nor treated equitably with the same standards of care as non-prison populations [
53].
The few articles that specifically addressed HCV in indigenous populations focused on issues of equity and justice, reflecting the historical injustices and systemic oppression faced by indigenous people in Canada and structural factors [
75]. Indeed, HCV infection is a product of substance use and other risk behaviours that are themselves precipitated by trauma and racism relating to colonization and residential schooling [
76]. Trauma and disease should therefore be examined together in order to determine the most appropriate course of action [
77]. Authors advocated for increased multi-level approaches, with interventions tailored to address specific needs through incorporation of culturally safe approaches [
33]. Authors recommended that interventions be developed and implemented in partnership with community members [
77] and address family, community, environmental and cultural factors [
77,
78].
In contrast to vulnerable populations, literature on the baby boomer cohort, born between 1945 and 1975, focused on the maximization of population benefit. Baby boomers have disproportionate rates of HCV and the provision of DAAs would reduce prevalence of HCV and associated complications [
64]. Complications include hepatocellular carcinoma, which requires a liver transplant and equates to high healthcare utilization. Addressing HCV in this population might therefore reduce health care expenditures and maximize population benefits [
64], because the cost of treatment is approximately $80,000 compared to $104,000 for a liver transplant, not including antirejection medication and follow up care [
64]. Some authors called for age cohort screening to capture a large number of active HCV infections [
35], which might prove cost effective, despite high up-front costs [
12], in contrast to the Canadian Task Force on Preventive Health Care (2017) determination of insufficient cost-effectiveness evidence to support age cohort screening [
22].
Equity and justice claims were, however, made with respect to the sub-population of baby boomers who were infected as the result of a contaminated blood transfusion [
79]. Targeted look back programs are in place to notify blood and blood product recipients of potential health issues arising from their previous transfusions. These programs, together with compensation programs, represent justice for recipients of contaminated blood and blood products [
79]. Furthering justice claims, the Krever Commission or Krever Inquiry- Inquiry on the Blood System in Canada [
80] recommended that all patients who had received a blood transfusion between 1978 and 1990 should be identified to provide them with necessary medical care [
81]. Additionally, Canada has since provided educational and financial support to HCV positive individuals in this category and encourages other countries to follow suit [
82,
83]. In contrast to vulnerable populations, Canada set aside $1.1 billion dollars to compensate individuals who received contaminated blood, because they suffered a negative “no fault” health outcome [
84].
Study location
Of the minority of articles that specified a study location, the majority were conducted in urban and inner city locations. These locations have the highest population density of HCV-infected individuals [
50]. However, focus on these locations results in an evidence gap for rural and remote locations [
85]. Populations in these locations require special consideration for HCV screening, diagnosis and treatment due to geographic isolation and inequities in healthcare services and delivers. More resources are therefore required for rural populations, especially with respect to education and risk communication [
86]. Coordinated outreach teams might provide screening, counseling and treatment for people living outside of the city limits to ensure availability and accessibility of care [
86] and improve trust between physicians and patients to encourage people living away from medical centres to seek care [
86]. Rural patients face long wait times to see specialists, most travel further distances to major medical facilities and take more time off work, constituting an opportunity cost [
85]. This is amplified for indigenous populations living in rural and remote settings [
31]; many go undiagnosed and have difficulty accessing screening and treatment [
87]. Authors concluded that persons who are geographically isolated should be prioritized for HCV outreach programs.