Acceptability and Effectiveness of Hepatitis C Care at Syringe Service Programs for People Who Inject Drugs in New York City

Abstract

Introduction/Objectives:

The incidence of hepatitis C (HCV) infection is rising among people who inject drugs (PWID). Even in the context of known HCV prevention and treatment strategies, some PWID remain unengaged in HCV care. This study aimed to identify and characterize experiences and perceptions of PWID regarding the acceptability and effectiveness of HCV testing and treatment at a local syringe service program (SSP).

Methods:

A total of 36 PWID participated in semi-structured interviews at an SSP in New York City. Interviews were audio-recorded, transcribed, and coded by three coders, following a constructivist grounded theory approach. Relevant themes were identified as they emerged from the data.

Results:

Interviews with PWID revealed three themes related to the impact of SSPs on HCV care: (1) non-stigmatizing SSP environments, (2) the role of SSPs in improving HCV knowledge, and (3) acceptability of SSPs as sites for HCV care among PWID.

Discussion:

This paper contributes to the ongoing understanding that SSPs provide a well-accepted source of HCV services for PWID. Participants believed that SSPs are accessible and effective sites for HCV care, and suggested that stigma among PWID continues to affect receipt of HCV care in traditional settings.

Conclusions:

Understanding attitudes and beliefs of PWID regarding the effectiveness of SSPs as sites for HCV care is crucial for the development of focused strategies to reduce HCV transmission, and to ultimately achieve HCV elimination. Given this, further research is warranted investigating how best to improve HCV care at harm reduction sites such as SSPs.

Introduction

The incidence of hepatitis C (HCV) in the United States has almost tripled due to the opioid epidemic (CDC., 2019; Jordan et al., 2020; Rosenberg et al., 2018). People who inject drugs (PWID) are disproportionately impacted because transmission in the US mainly occurs through non-sterile injection practices. For example, prevalence of current HCV infection among U.S. adults is 1%, approximately 2.4 million cases (Hofmeister et al., 2019); however, the estimated prevalence of HCV among PWID is 60%, with 25–50% of PWID becoming infected within two-to-six years of injection initiation (Hagan et al., 2011; Jordan et al., 2015). Furthermore, the COVID-19 pandemic may exacerbate the individual and structural conditions contributing to risk of HCV transmission among PWID because of interrupted and/or limited access to combined prevention such as harm reduction and medication for opioid use disorders (Glick et al., 2020; Jenkins et al., 2020; Walters et al., 2020). Given the rising incidence of HCV over the last decade, and the deleterious structural changes introduced to harm reduction by the COVID-19 pandemic, more multilayered research is needed in order to better understand and control the HCV epidemic (Day et al., 2019; Krieger, 2012; Valdiserri et al., 2014).

Care continuum modeling takes a multilayered approach to understanding the biopsychosocial aspects of healthcare engagement (Perlman et al., 2016). The HCV care continuum is a useful tool to delineate outcomes of the sequential steps of HCV care, i.e. testing, diagnosis, and treatment, and to identify gaps between steps (Ford et al., 2018; Perlman et al., 2016). For example, previous literature has identified lack of accurate information about HCV, and gaps in linkage to definitive direct acting antiviral (DAA) treatment as important barriers to HCV care among PWID (Jordan et al., 2013). Similarly, although most SSPs in the US provide HCV education and testing, few provide on-site treatment. Identifying such gaps in the steps of the continuum prompts efforts to investigate their biological and psychosocial causes, and subsequently allows for focused interventions and/or resources to be allocated in order to minimize the identified gaps (Perlman et al., 2016).

Several public health programs have been enacted in order to intervene at multiple levels of the HCV care continuum (Perlman & Jordan, 2018). In New York City for example, HCV elimination campaigns have employed strategies such as patient and provider education, promotion of HCV testing, and psychosocial counseling as methods to reduce infection and transmission rates. Along with these, efforts to expand sterile syringe access and access to substance use treatment have also been made (Gaudino et al., 2018). Programs such as the New York State Hepatitis C Elimination Campaign have recognized the urgent need for public health scale responses to the epidemic and are building organizational coalitions to educate the public about the risks and consequences of infection (Gaudino et al., 2018). Similarly, within New York City, the Check Hep C Program provided concrete funding and support to community-based organizations and other sites which PWID utilize, such as syringe service programs (SSPs), in order to alleviate disparities in HCV education, testing, and treatment in neighborhoods of high HCV prevalence and limited HCV services (Ford et al., 2018). A better understanding of where, why, and how PWID become disengaged from the HCV care continuum is needed in order to develop and maintain strategies to keep PWID engaged in longitudinal prevention and care. We use a syndemic framework for understanding how PWID engage with the HCV care continuum, and how HCV as a biological disease interacts with social conditions, creating greater risk and impacting access to services(Jordan et al., 2020; Perlman & Jordan, 2018).

Theoretical framework: Syndemics

A ‘syndemic’ describes the coexisting interaction between two or more diseases, conditions, or epidemics; by definition, the negative effects of one component of a syndemic is potentiated by another component through synergistic and reciprocally-enhancing effects (Singer & Clair, 2003). Syndemics are intimately rooted in social conditions, and therefore, key to this theory is how biological diseases interact with social conditions (Walters et al., 2020). A multilevel syndemic framework has been used in the past to help identify, monitor, and improve structural factors that contribute to public health crises such as HIV/AIDS and opioid dependence (Perlman & Jordan, 2018). Related to this, the increased HCV incidence during the U.S. opioid epidemic intimately ties together opioid misuse, overdose, and HCV within similar contexts (Jordan et al., 2020), creating a syndemic which highlights the particular vulnerability of PWID (Perlman & Jordan, 2018). Individual factors (including fatalism and distrust of public services) along with social network factors and structural factors (limited access to sterile injection equipment, naloxone, overdose education, and HIV/HCV education, poverty, unemployment, and housing instability) coalesce to crystalize a de facto syndemic among PWID (DeCuir et al., 2018; Perlman & Jordan, 2018). Drawing from the framework of syndemics, we can better understand the context of rising HCV incidence, including psychosocial aspects of PWIDs’ lived experiences. Of particular interest for this study was how stigma experiences impact HCV outcomes.

Theoretical framework: Stigma

Stigma refers to the devaluation of individuals due to a characteristic or behavior that differentiates them from the norm. Consequently, those with differentiating characteristics or behaviors became marked with a “spoiled identity,” leading to ostracization and criticism by those in the majority (Goffman, 1963). The stigma process has four key elements: (1) culturally-created categories allow for labeling to occur (e.g. drug use); (2) labeling an attribute or activity as positive or negative (e.g. drug use is bad) forms the basis of separation and isolation of people; (3) separation and isolation based on labeled characteristics is associated with negative attitudes of those in the majority toward those in a minority (e.g. people who use drugs are bad – and not like “us”); (4) those stigmatized experience discrimination and a loss of social status. Importantly, stigma is not limited to the individual, and in fact, is oftentimes directed against communities as a whole, such as PWID (Friedman et al., 2017; Link & Phelan, 2001; Luoma et al., 2007; McKnight et al., 2017; Phillips & Shaw, 2013).

Stigma has been noted as barrier to healthcare (Earnshaw & Quinn, 2012). PWID anticipate stigma in healthcare settings, which operates as a deterrent from engaging with healthcare generally, and specifically from engaging in HCV care. (Abadie et al., 2018; Biancarelli et al., 2019; Skeer et al., 2018). Importantly, examples of stigma as a structural and functional barrier exist across the HCV care continuum: previous drug-related stigma may deter PWID from seeking out HCV testing and/or treatment due to fear of being devalued again by providers (Bull-Otterson et al., 2020), and many PWID still hold negative perceptions of HCV treatment due to stigma experiences (Morris et al., 2019). Nontraditional healthcare settings may be able to buffer the stigma barrier associated with healthcare settings (Biancarelli et al., 2019; Muncan et al., 2020). For example, treatment programs for substance use disorder have been identified as important sites for provision of on-site HCV testing and treatment (Butner et al., 2017; Carey et al., 2016; Masson et al., 2013) but these settings do not engage PWID who do not seek substance use treatment. SSPs may reach a larger population of active, and at-risk PWID, and have been identified as potential locations for comprehensive HCV care (Behrends et al., 2018; Eckhardt et al., 2018; Roncero et al., 2019). Furthermore, SSPs have been identified as non-stigmatizing environments, which could lessen the barrier of stigma that PWID experience in healthcare settings (Ahern et al., 2007; Biancarelli et al., 2019). Drawing on the concept of stigma, this study aimed to understand care HCV continuum engagement. Specifically, this analysis seeks to understand HCV experiences among PWID who frequented an urban SSP that offered HCV care on-site.

Methods

Setting

This analysis uses data from two qualitative studies sampling PWID that followed the same methods, recruitment, and interview guide. All research protocols were reviewed and approved by the Institutional Review Board at New York University. To recruit and interview PWID, we partnered with a well-established SSP in Manhattan that provided a wide array of services for clients including sterile injection equipment, safe sex supplies, opioid overdose reversal training, peer-groups, counseling, case management, HIV testing, HCV services, internet access, and food. SSP personnel were a mix of paid and volunteer staff. Additional geographic information about the SSP is omitted to protect the identities of the participants of this study. The partnering SSP provided on-site HCV antibody screening at no cost to their clients. In the case that a client had a positive antibody test, the SSP partnered with an infectious disease physician to provide eligible PWID with viral load testing and subsequent on-site HCV treatment.

Recruitment and interview structure

From August 2019 through February 2020, we conducted semi-structured qualitative interviews with PWID. PWID were eligible to participate if they were 18 years of age or older and injected drugs within the last year. Two trained qualitative researchers (SW and DF) recruited and interviewed participants. Researchers spent one day a week at the SSP to build rapport with participants and staff, and to gain overall knowledge about the SSP and its clients. We worked with the SSP staff to identify eligible PWID. After SSP clients were identified, PWID were briefly asked their age and their drug use habits to ensure eligibility. Eligible PWID then participated in semi-structured interviews conducted by either trained researcher, independent of SSP staff. To ensure participants’ confidentiality, all interviews were conducted in a private room at the partnering SSP where recruitment took place. Interviews were audio recorded and ranged in time from thirty minutes to two hours. Interview guide domains included drug use history, experiences with the healthcare and criminal justice systems, overdose experiences, HIV awareness and prevention, and HCV knowledge and experiences. We asked one question about HCV (“Please tell me what you know and think about hepatitis C or HCV?”), however, the semi-structured nature of the interview guide allowed the interviewer to probe so that PWID could expand on themes, including HCV. The questions were intentionally open ended and participant-centered. This allowed us to explore theoretical interests by allowing participants to use their own words and meanings, and therefore, to tell us their story without the “researcher preconceiving the content” (Charmaz, 2006). As the research progressed, we noticed that HCV was emerging as a theme and refined our probes to ask additional questions after the original HCV question (Charmaz, 2006). The additional questions asked included questions about how common HCV was within the population, how HCV is transmitted, understanding of HCV treatment and side effects, and whether participants were, or knew anyone who was, previously treated for HCV and what treatment experiences were like. Demographic information including gender, age, education, race/ethnicity, and sexual orientation was collected at the end of the interviews (see Table 1). After each interview, the interviewer wrote an ethnographic memo to further contextualize the data (Charmaz, 2006; Miles et al., 2013).

Table 1.

Participant demographics and drug injection characteristics (n = 36).

	n (%)
Age
18–30	6 (16.67)
31–40	7 (19.44)
41–50	16 (44.44)
51–60	6 (16.67)
Not Specified	1 (2.78)
Mean; ± S.D.	41.63 ± 8.66 years
Gender
Male	23 (63.89)
Female	13 (36.11)
Race
Hispanic/Latino	14 (38.89)
Puerto Rican	8 (22.22)
Mexican	5 (13.89)
Not Specified	1 (2.78)
White	8 (22.22)
Multiracial†	6 (16.67)
“Black and Hispanic”	2 (5.56)
“Puerto Rican and Black”	2 (5.56)
“Caucasian and Latino”	1 (2.78)
“Spanish, White, and Black”	1 (2.78)
Black	5(13.89)
Not Specified	3 (8.33)
Sexual Orientation
Heterosexual	30 (83.33)
Gay/Lesbian	1 (2.78)
Bisexual	1 (2.78)
Not Specified	4 (11.11)
Education
Less than High School	6 (16.67)
High School/GED	13 (36.11)
Some College	10 (27.78)
Bachelor’s Degree	1 (2.78)
Graduate Degree	1 (2.78)
Not Specified	5 (13.89)
Drugs Injected*
Opioids	28 (77.78)
Amphetamines	11 (30.56)
Crack	11 (30.56)
Cocaine	11 (30.56)

^†For those participants who self-identified as multiracial, we quote specific race/ethnicities directly.

^*Drugs injected were not mutually exclusive, many participants endorsed polydrug use.

Sample

A total of 39 PWID, aged ≥ 18 years, who reported injecting drugs within the past year were recruited. Given time constraints and the semi-structured nature of interviews, 36 out of 39 were asked about their knowledge and experiences with HCV, and therefore 36 were included in this analysis. Of those 36 PWID, approximately 64% were male; most (83%) identified as heterosexual or straight and were aged 41–50 years (45%). We asked participants to best describe their race/ethnicity to the extent they felt comfortable. Of 36 participants, In terms of race/ethnicity, 39% identified as Hispanic or Latino (22% identified as Puerto Rican, 3% identified as Mexican, 14% did not specify ethnicity). In line with our constructivist grounded theory approach, we choose to use the term ‘Latino’ rather than the gender-neutral term ‘Latinx’ as this is how participants self-identified. Furthermore, 22% of our sample identified as white, 17% identified as multiracial, and 14% African American/Black. Those self-identifying as multiracial specified their race/ethnicities: two participants described themselves as “Black and Hispanic;” two as “Puerto Rican and Black;” one as “Caucasian and Latino;” one as “Spanish, White, and Black.” Participants either finished high school (36.11%) or had some college (27.78%). The majority of participants reported polydrug use (use/injection of multiple drugs of different classes, most commonly opioids and amphetamines). Demographic and injection drug use descriptors of PWID are found in Table 1. All PWID gave informed consent to participate in audio-recorded interviews. Participants received a $40 debit card for participating.

Data analysis

Audio recordings of interviews were professionally transcribed. Informed by a constructivist grounded theory approach, involving line-by-line coding and constant comparison, three independent coders reviewed and coded the data using Dedoose Version 8.3.17 (Charmaz, 2006). We refer to our method as constructivist grounded theory, as Charmaz (2006) does, because we were well informed about past literature on PWID and HCV. We also had specific training (both interviewers have PhDs in sociology) that influenced the ways in which we saw our data. Specifically, DF, who conducted the majority of the interviews, had a history of injection drug use, which impacted his relationship with participants and the data. DF was a regular (daily) heroin injector from approximately 2001–2005, and since then, has injected opioids intermittently (approximately once a year). He also has experience injecting powdered and crack cocaine. DF’s insider status allowed for building greater rapport and trust with the participants in this study. Since PWID are a stigmatized and criminalized population, they are often reticent to disclose information to those they perceive as outsiders (Ahern et al., 2007; Ford et al., 2004). By disclosing his own status as a person who uses drugs (PWUD), DF was often able to overcome these barriers more quickly due to the shared experiences he had with participants. For example, participants often reported being happily surprised and/or relieved, to learn of DF’s status and sometimes commented on the importance of lived experience – which many believe is discounted and ignored – toward understanding the issues PWUD regularly deal with.

Themes were identified as they emerged in the data and were recorded in a dynamic codebook which was modified as necessary as new themes or subthemes became apparent. Furthermore, as themes emerged in the data, the interview guide was modified if needed (Charmaz, 2006). This included the addition of HCV and SSP probes. If coding discrepancies arose, they were resolved through dialogue about the data and codebook until a final consensus was reached among all coders. To protect confidentiality, pseudonyms are used throughout this paper when referring to participants (Kaiser, 2009).

Results

Participants spoke in detail about their experiences with HCV, revealing important characteristics about their perceptions and behaviors regarding HCV risk, transmission and treatment. Although only one HCV-related question was asked at the beginning of data collection, the majority of participants continued to expand upon the general theme of HCV and additional probes were added in line with their previous responses. Three subthemes emerged from the data that directly impacted participants’ HCV prevention and care across the care continuum: (1) non-stigmatizing SSP environments, (2) the role of SSPs in improving HCV knowledge, and (3) acceptability of SSPs as sites for HCV care among PWID.

Non-stigmatizing SSP environment

Drug use stigma was a major theme that emerged in all interviews and was juxtaposed with the less stigmatizing environment of the SSP. Participants spoke about the stigma they experienced in healthcare systems and how those experiences led to a reluctance to seek out and continue care for HCV. Thirteen participants contrasted stigma experienced in healthcare with more positive experiences at the SSP. Christopher (male, 40) attributed his willingness to receive HCV care at the SSP to the positive environment where he did not feel stigmatized because of his drug use. He said:

“You can come here and be yourself. You don’t have to hide who you are. Okay, you know how some spots you go to that you have to hide what you used to do, why you used to do it? You can come here and be yourself.”

For Christopher, the ability to “be himself” and not have to hide his drug use made the SSP a safe site for receiving treatment for HCV. Alexia (female, 25) offered a similar narrative as she explained that she was not afraid about using SSP resources to address concerns about her health and drug use:

“I’ve been at [study SSP] for a couple of years. I don’t come every single day, but I’ve been here for maybe three years. It’s just very open. People are very trusting. As far as the workers, they’re very nice. They don’t judge. You need any type of help or advice or any compliments, anything they can give you, they will. They’re very honest, very open.”

Similar to Christopher, Alexia noted that she could trust the SSP, a much-needed component for seeking education about health issues as well treatment. Some participants contrasted their SSP experiences with healthcare experiences. For example, Steve (male, 43) talked about the importance of SSP staff’s rapport with PWID through shared experiences with drug use, something that general practitioners might not have. He said that this genuine relationship made him much more willing to seek HCV and general medical care at the study SSP:

“…How can you go to a hospital and get any answers from a doctor if he never experienced it? If he never experienced it, how is he going to talk to you about relapse? So I’m going to come to a place like [study SSP] and get advice any day. Their family has experienced it, their mothers. They don’t have to do it, but they experienced it. I would rather come to a place like [study SSP] because people have experienced something. If you have never experienced nothing, you can’t tell me nothing.”

Samuel emphasized that SSP personnel know how to interact with PWID because many are familiar with the local community. He further explained that relationships between PWID and SSP staff were grounded in trust and empathy. Rather than making him feel ostracized because of his drug use, SSP staff humanized him and made him feel valued. In particular, Samuel illustrated the person-centered nature of the SSP staff when he explained that the physician who was treating his HCV would take him out for food on occasion if he could not afford it. Samuel said:

“There’s people helping me clear my hep-C…especially the doctor back there. They are beautiful people…all of them back there. They’re beautiful people. They care. If I’m hungry, the will take me out to the store and buy me something to eat. I come here almost every day. When I leave my house I come over here.”

In the above quote Samuel reiterated the idea that doctors, whom PWID often distrust due to past negative experiences in traditional healthcare settings, can regain PWIDs’ trust when embedded in systems which welcome PWID, make them feel comfortable, valued, and not stigmatized (Muncan et al., 2020). Overall, participants described a comfort at the SSP that they did not have in healthcare settings, which contributed to their participation in the HCV care continuum. PWID reported that the non-stigmatizing attitudes of SSP staff contributed to their comfort with, and willingness to, receive HCV education and care on-site at the SSP.

Role of SSPs in improving HCV knowledge

Of 36 participants, 25 had awareness and knowledge about HCV risk, transmission, and treatment, which they largely attributed to the education received at the study SSP and other local harm reduction sites. Thomas (male, 50), for example, said that by using the SSP and by volunteering to hand out sterile syringes, he was able to interact with the local community and with SSP staff, which increased his knowledge about harm reduction, HIV, and HCV. Thomas said,

“It’s certain situations which benefits you by coming to the [study SSP]… Hep C could cause you to die. Hepatitis C is nothing to play with …but I found out that it depends, because you can have hepatitis C and if you take the medication, you could cure yourself. But if you don’t take care of yourself, you could catch it again if you’re using dirty syringes.”

Additionally, several participants described learning that DAA treatments are highly efficacious, have few side effects, and are better tolerated compared to interferon-based treatment from SSP staff and from peers who had underwent HCV treatment with DAAs. Marco (male, 44) summarized his awareness and knowledge of HCV. He reported being HCV positive and knew initially that interferon treatments for HCV were difficult to tolerate. At the study SSP, the partnered physician and other staff provided more complete and accurate information about DAAs. Along with receiving DAA treatment, Marco learned more about strategies to minimize the risk of HCV transmission and/or reinfection, and reported regularly applying these to his daily life. Although he did not specify whether he knew that undetectable meant untransmittable, Marco said:

“Hep C, there’s a cure now. I took the treatment and I got…I’m undetectable. Now, when I use my needles, it got to be nice and new needles. I get the new set…so now, I don’t use it not even two times.”

Luis (male, 43) added that before using the SSP, he was not knowledgeable about HCV or DAA treatment. Discussions with staff at the study SSP and peer groups, Luis said, were critical to his complete and accurate understanding of HCV:

“The Hep C situation? It was kind of scary at first because I had seen a lot of people die on that scene. I’ve seen people die over hepatitis when I was a kid. I saw one of my uncles turn yellow and actually die with a big stomach…where I’m from, they didn’t have all these groups and stuff that teach you about shooting and stuff like that. I thought [HCV] was something that anybody could get because they drink a lot. I didn’t drink because my uncle used to drink a lot, so that’s why I thought he got hepatitis. That’s the story I was telling. So I started learning about this process at [study SSP]…they helped me realize that there was a cure now and it calmed me down…when I found out I had [HCV] and that there was a cure, I jumped on it. I did the treatment here and it’s been almost a year now.”

Many participants described similar experiences and emphasized the key role that SSPs had on improving their working knowledge of HCV risk and practice of harm reduction strategies. This in turn translated into being accepting of SSPs as sites for HCV care and willingness to engage in HCV treatment at the SSP.

Acceptability of SSPs as sites for HCV care

Of 36 participants, 21 had previously been HCV antibody tested at the study SSP. Thirteen had positive antibody tests; 11 received on-site HCV treatment at the SSP under the direction of the partnered physician. The availability of HCV care at the SSP improved participant’s willingness to remain engaged in prevention and treatment; they explained that having both HCV testing and treatment available in one location was convenient. More importantly, participants suggested that the non-stigmatizing environment of the SSP made them more likely to seek out treatment at the SSP rather than in traditional healthcare settings.

For example, Margaret (female, 30) spoke very positively about the comprehensive HCV care that she received at the study SSP. She emphasized the convenience of being able to treat her HCV with a partnered physician at the study SSP and highlighted the benefits of engaging in care at harm reduction sites including the ability to participate in research studies at no cost. Margaret said:

“If it wasn’t for this place [SSP], I probably wouldn’t know that I had it [HCV] because I wouldn’t have gotten tested for it…and I’m also getting treated here. [Study SSP] had a research study for people to get tested and if they were in fact positive, they would treat you. So I was, and I did the 12 weeks of treatment. I come here. It’s fast, it’s free…”

Marco shared a similar story. After he had a positive HCV antibody test at a local low-cost clinic, he was referred to the study SSP for further testing and treatment:

“I used to go to some other place. I used to go to [clinic], but they didn’t have nothing for the hepatitis, nothing to help you out, so they brought me here to [study SSP]. I took the medication, it took me like 8 weeks and it worked. So far, everything is good.”

Marco later spoke about the ease with which he was able to be linked into HCV treatment and emphasized the importance of having all HCV services available in one location, such as at the study SSP.

Many participants, like Margaret and Marco, articulated positive experiences at the SSP, and in particular positive experiences with HCV education and treatment at the SSP. Even participants who had incomplete and/or inaccurate knowledge of HCV recognized the SSP as an effective site for HCV education, testing, and/or treatment. Overwhelmingly, participants thought HCV care at the study SSP was a convenient and effective way to get HCV care. At large, participants attributed the effectiveness of the SSP as an HCV testing and treatment site to the accepting environment and non-stigmatizing attitudes of SSP staff.

Discussion

This paper contributes to the ongoing understanding that SSPs, as PWID-centered locations for health services, provide a crucial and well-accepted source of HCV knowledge and services for PWID. Although the feasibility and potential value of offering HCV testing and treatment on site at SSPs has been demonstrated since the 1990s, in the United States, as of 2015 only three fourths of SSPs offer any HCV testing, fewer than one quarter did HCV viral load testing, and only 9% offered on-site HCV treatment, representing an area of needed public health improvement (Behrends et al., 2018). Furthermore, in 2018, only 9.8% of NYC SSP clients were tested for hepatitis, and 3.1% received coordinated hepatitis care (NYCDOH, 2019). The proportion of SSPs offering HCV services in recent years is not precisely known; it has been demonstrated that since the COVID-19 pandemic, HCV testing at SSPs has decreased (Glick et al., 2020).

Our results suggest that stigma among PWID continues to affect receipt of healthcare services in traditional settings (Biancarelli et al., 2019; Muncan et al., 2020). As opposed to traditional care settings, participants did not report feeling stigmatized at SSPs based on their drug use, and therefore felt comfortable receiving HCV care at SSPs. Drug use stigma is a complex phenomenon that is a major barrier for PWID to receive HCV care (Ahern et al., 2007; Skeer et al., 2018). Studies focusing on HIV have found that SSPs provide non-stigmatizing environments for PWID (Walters et al., 2017; Walters et al., 2020). The safe and comfortable environments of SSPs may function to mitigate stigma in a manner directly correlating to the mechanisms proposed by Link and Phelan (2001): in the context of familiar and respectful SSP settings, stereotypes and societal devaluation of drug injection are curtailed, thereby limiting the negative impact of the PWID label on SSP clients. In traditional healthcare settings, providers oftentimes judge, belittle, and disrespect PWID (Muncan et al., 2020) leading to status loss and discrimination. By engaging in an SSP in which clients and staff have mutual respect for one another, the power dynamic of traditional healthcare settings is eliminated and replaced by preservation of PWIDs’ identity and dignity. The sense of community fostered by the SSP may in turn lessen the burden of social separation and status-loss, which is contributory to stigma (Link & Phelan, 2001). Given this framework, we propose that the non-stigmatizing environment of the study SSP may have contributed to the willingness of participants to be tested and treated for HCV as opposed to other care environments.

By facilitating access to all steps of the HCV care continuum at SSPs, the risks of loss to follow-up and additional structural barriers related to linkages between different sites and providers may be minimized. Since losses at each step of the HCV care continuum (particularly between the steps of testing and treatment) are major barriers to HCV control (Perlman et al., 2016; Skeer et al., 2018), our findings suggest that testing and treatment based at SSP may enhance engagement of PWID in HCV testing and treatment. Moreover, by improving HCV care through SSPs, there is potential to address the syndemic of opioid misuse, overdose, and HCV as a whole via community engagement in harm reduction and increased education about transmission of infectious diseases (Muncan et al., 2020).

Additionally, commentary about the racial/ethnic makeup of our sample is appropriate. Although many participants did not reveal specific ancestry, most of those who self-identified as Hispanic/Latino also identified as Puerto Rican. This information provides important insight into the opioid-HCV syndemic. Cano (2020), for example, identified an increased mortality rate among Puerto Rican opioid users compared to other Hispanic/Latino ancestries and to non-Hispanic Whites. In addition, existing data suggest higher injection risk in migrant PWID from Puerto Rico to New York City (Gelpí-Acosta et al., 2020). Synergistically, the incidence and prevalence of HCV among Puerto Rican PWUD in New York City was found to be much higher than non-Puerto Rican PWUD (Aratesh et al., 2020). These elements are critical to consider when analyzing racial/ethnic trends in HCV and drug use, and in developing policy to control the ongoing syndemic.

Our data on the experiences and perceptions of PWID provide important insights into the acceptability and effectiveness of SSPs as sites for longitudinal HCV care to active PWID, including education, prevention, testing, and treatment all at the same location. Participants consistently highlighted the positive impact that interactions with other PWID and staff at the SSP had on knowledge of HCV and risk behaviors. They highlighted how there were smooth linkages between HCV testing and treatment at the same location and that this helped retain them in care. The need for consistent progression through the HCV care continuum and value of having all services available in a single location have been noted previously (Martin et al., 2018), and the effectiveness of DAA treatment delivered at SSPs has been demonstrated with high rates of sustained virologic responses (91%) among treated PWID (Eckhardt et al., 2018). Our findings support the conclusions drawn by previous researchers and add data to substantiate why and how SSPs are accepted among PWID as effective sites for the implementation of HCV care across the care continuum. Given this, we recommend expanding and improving on-site HCV care at SSPs. Several models have been proposed: partnerships of SSPs with local universities and/or hospital systems to provide funding and medical personnel may improve accessibility of HCV care for PWID. This may also allow for low-cost or no-cost medical screening (including, but not limited to HCV) and linkage to treatment, and may be conducive to ongoing research efforts to improve the health of PWID (Eckhardt et al., 2019). Additionally, involving medical students in these partnerships might play a role in reducing stigma against PWID by informing and encouraging meaningful PWID-centered interactions at a critical time of professional development (Ginoza et al., 2020). Overall, this could improve community-based health and improve provider-patient relationships for PWID. Additionally, broad-based community educational initiatives are recommended to decrease stigma against SSPs (e.g. “Not in my backyard” reactions) and to educate legislators and constituents alike about the harm reduction benefits of these services (Kolla et al., 2017; Tempalski et al., 2007). Overall, these strategies are aimed not only at focused HCV intervention but also at addressing the current opioid-HCV syndemic in the United States as a whole.

Limitations

There are limitations to this study. This study focused on the feasibility of PrEP for PWID and HCV emerged as a prominent theme in the lives of the people we sampled. Since we followed a constructivist grounded theory approach where we were constantly reviewing the incoming data and modifying our instruments, we were able to add additional probes. However, it is important to note the main aims of the two studies we are drawing from were not HCV related. Therefore, more research could be conducted with specific aims to explore the nuances of HCV treatment, stigma, and SSPs. Sampling and data collection were done at an established SSP in New York City that has the infrastructure and staffing to do on-site HCV treatment. Not all geographic locations have SSPs that have the capacity to operate this way and community opposition may push SSPs out of some areas, making setting up a SSP with HCV care difficult (Tempalski et al., 2007). Therefore, findings may not be generalizable to other areas in the US where accessibility to SSPs is limited or where SSPs do not have access to onsite clinical staffing. Interviews were conducted prior to the COVID-19 outbreak and SSPs may need to rethink ways to engage PWID in HCV care due to COVID-19. In addition, we asked an open-ended question about race/ethnicity; some of the participants who identified as Hispanic/Latino, did not specify ancestry. Differences in injection drug use and HCV epidemiology exist between Latino groups (Arasteh et al., 2020; Reynoso-Vallejo et al., 2008), therefore future work should consider asking specific questions about ancestry to better understand racial/ethnic trends. Future studies should explore PWID experiences at SSPs in rural and sub-urban locations as well as explore ways in which COVID-19 has impacted HCV along the care continuum.

Conclusion

Our findings provide insight into PWIDs perceptions of the acceptability and effectiveness of SSPs for comprehensive HCV care. Participants report non-stigmatizing environments at the SSP, which made them comfortable to pursue HCV education, testing, and treatment. Participant comfort at the SSP facilitated willingness to sustain harm reduction practices and importantly, to engage in HCV care. These data suggest that SSPs could be used more broadly to expand HCV services to PWID who are not engaged in care, and have the potential to increase population level retention in, and completion of, all of the steps of the HCV care continuum.

Data availability

Data are not publicly available to protect participant confidentiality. Data may be made available upon reasonable request from the corresponding author (BM).