A Qualitative Analysis of Barriers to Accessing HIV Prevention Services During an HIV Outbreak among Persons who Inject Drugs in West Virginia

Abstract

In response to an increase in HIV diagnoses among persons who inject drugs (PWID) in Kanawha County, West Virginia, West Virginia Bureau for Public Health and CDC conducted a qualitative assessment in Kanawha County to inform HIV outbreak response activities. Interviews with 26 PWID and 45 community partners were completed. Transcribed interviews were analyzed to identify barriers to accessing HIV prevention services among PWID using the risk environment framework. Participants identified numerous political, physical, social, and economic community-level barriers that influenced access to HIV prevention services among PWID. Political factors included low community support for syringe services programs (SSPs); physical factors included low SSP coverage, low coverage of HIV testing outreach events, low HIV preexposure prophylaxis availability, and homelessness; social factors included stigma and discrimination; economic factors included community beliefs that SSPs negatively affect economic investments and limited resources for HIV screening in clinical settings. Individual-level barriers included co-occurring acute medical conditions and mental illness. Community-level interventions, such as low-barrier one-stop shop models, are needed to increase access to sterile syringes through comprehensive harm reduction services.

Introduction

In the U.S., declines in HIV diagnoses attributed to injection drug use were observed for many years. Alarmingly, there were increases in HIV diagnoses among persons who inject drugs (PWID) during 2014–2018 [1, 2]. Additionally, there have been numerous HIV outbreaks among PWID since 2015 [3, 4]. The rise in HIV diagnoses among PWID has been attributed to the drastic increases in opioid use and consequent increases in injection drug use and injection-related health and social issues, such as homelessness [5–10].

Another contributing factor to the rise in HIV diagnoses among PWID has been low access to evidence-based HIV prevention interventions, including syringe services programs (SSPs) that provide access to sterile injection equipment and other health and social services, such as medications for opioid use disorder [3, 4, 11]. CDC recommends implementing needs-based SSPs that offer syringes to clients without restrictions, such as a requirement to return used syringes, as they have been shown to be the most effective SSP model for reducing transmission of HIV and other bloodborne infections among PWID [12–15]. Alternatives to needs-based SSPs are one-to-one syringe exchange models where clients only receive the number of syringes they dispose of during a SSP visit; SSPs with one-to-one syringe exchange have reduced effectiveness in decreasing risk for HIV and hepatitis C virus (HCV) infection [12, 15, 16]. Additionally, high-barrier SSPs that require local government approval or clients to register (e.g., provide names, show identification [ID]) hinders accessibility to services [17–20]. To prevent HIV transmission and address HIV outbreaks among PWID, evidence shows it is critical to increase access to needs-based SSPs, HIV testing, and HIV preexposure prophylaxis (PrEP) for eligible PWID (PWID who are HIV-negative who have (1) injected drugs in the past 6 months and have either shared injection equipment or have an HIV-positive injecting partner; or (2) substantial risk of acquiring HIV infection sexually) [3, 4, 11].

One of the recently detected HIV outbreaks among PWID was in Kanawha County, West Virginia (WV). Kanawha County is a rural county in south-central WV with a population of approximately 180,000 and houses the state capital of Charleston [21]. The county has high rates of opioid use disorder and overdose deaths which have been increasing since 2016 [22]. During October 2019, the West Virginia Bureau for Public Health (WVBPH) released a Health Advisory on the increasing number of HIV diagnoses among PWID in Kanawha County [23]. WV HIV surveillance data showed that the number of HIV diagnoses among PWID in Kanawha County was less than 5 annually before the outbreak [24]. In 2019, the number increased to 15 HIV diagnoses, establishing the start of the outbreak period [24]. Outbreak cases were defined as confirmed HIV diagnoses after January 1, 2019, in PWID who lived in or were experiencing homelessness in Kanawha County at the time of diagnosis. In response, WVBPH and Kanawha-Charleston Health Department (KCHD) began implementing HIV outbreak response activities, including convening an HIV task force, expanding mobile HIV testing and outreach efforts, conducting care coordination meetings, and receiving CDC remote assistance to support response activities.

Prior to and during the HIV outbreak period, the only two remaining needs-based SSPs in Kanawha County closed. In March 2018, the KCHD SSP closed after its operation became a heated political issue during a local election year [25–28]. Some community leaders claimed the KCHD SSP promoted drug use, increased crime, and contributed to syringe litter in the community [25–28]; although current evidence does not support these claims [12, 29–33]. Prior to its closure, the KCHD SSP was providing services to more than 400 PWID weekly [27]. After the KCHD SSP shut down, public health researchers found PWID reported increased risks for HIV/HCV acquisition and overdose [34].

To address the gaps in services after the KCHD SSP closed, a community-based SSP was implemented [28, 35]. However, this SSP also became a heated political issue locally, resulting in the SSP’s closure in April 2021 [28, 35, 36]. After both needs-based SSPs closed, syringe services were only offered at one location in Kanawha County, which was a clinic that required clients to show IDs and return used syringes to access services and barcoded syringes to track return of used syringes [35, 37]. Barcoding syringes is not recommended because it does not maintain the sterility of the syringes [38]. Analyses have shown that the clinic has a low syringe distribution rate and reaches few PWID clients [35, 39].

Additionally, in April 2021, a state law and a Charleston City Council ordinance enacted stricter SSP requirements that deemed needs-based SSPs illegal [40, 41]. The state law outlined SSP requirements for licensing, programming, and reporting, including requiring SSPs to obtain a state license to operate, adhere to a goal of a one-to-one syringe exchange model, and request proof of West Virginia ID from clients to access services [40]. The Charleston City Council ordinance added more restrictions to the state law, including requiring dissemination of individually identifiable syringes that could be traced if publicly discarded and specifying that a minimum of 90% of syringes distributed must be returned [41]. No new SSPs have opened in Kanawha County since the legislation passed.

In April 2021, WVBPH requested additional support for HIV partner services and in May 2021, requested CDC assistance with an HIV outbreak investigation. At the time that fieldwork took place in June 2021, 78 people met the outbreak case definition. As part of the larger outbreak investigation, CDC, WVBPH, and KCHD conducted a qualitative assessment with a sample of PWID and community partners in Kanawha County to inform HIV outbreak response activities. In this paper, we present results from a qualitative analysis aiming to identify barriers to accessing HIV prevention services, including SSPs, HIV testing, and PrEP, among PWID using a risk environment framework. The findings from this analysis will help inform HIV prevention interventions implemented in response to HIV outbreaks among PWID.

Methods

Study Setting and Recruitment

This qualitative assessment was conducted as part of an HIV outbreak investigation conducted in Kanawha County, WV during June 2021. This activity was reviewed by CDC and conducted consistent with applicable federal law and CDC policy.¹ We completed 26 interviews with PWID and 45 interviews with community partners. PWID were purposively sampled to include people with and without HIV, people engaged and not engaged in HIV prevention and treatment services, and people currently using and not currently using drugs (defined as reporting being in recovery or abstaining from using drugs at the time of the interviews). Community partners were purposively sampled to include medical and substance use treatment providers, social service providers, law enforcement, policymakers, religious leaders, researchers, and public health practitioners.

PWID were mostly recruited for interviews through referrals from social service providers, HIV outreach workers, public health practitioners, and recovery providers. A couple PWID were recruited at HIV testing outreach events. These recruitment strategies were used due to challenges recruiting PWID for interviews in a timely manner because of the stigma associated with injection drug use; trusted providers with strong connections to the PWID community could effectively reach and engage PWID. Eligibility criteria included: aged 18 years or older; currently living or accessing services in Kanawha County, WV; and reported injecting drugs in the past 12 months. Once eligibility was confirmed, the interviewer described the project and obtained oral informed consent for conducting the interview and audio recording. PWID received a $20 gift card for their time.

For community partner recruitment, WVBPH and KCHD identified a list of key partners to engage for interviews. Additionally, snowball sampling was used; participants were asked at the end of their interviews about partners involved in the HIV outbreak response they felt we should connect with. Oral informed consent for conducting the interview and audio recording was also obtained. Community partners were not provided incentives for participation.

Data Collection

Five interviewers with previous qualitative research experience completed training on the qualitative assessment design and data collection tools prior to data collection. For the initial few interviews, pairs of interviewers conducted interviews together and took turns acting as the lead interviewer and as a notetaker. After these initial interviews, all interviewers participated in debriefing sessions to ensure they understood how to conduct the interviews and how to use the data collection tools. Interviews with PWID explored substance use and syringe sharing, sexual behavior, experiences accessing medical and social services, and barriers and facilitators to accessing HIV prevention and treatment services. Interviews with PWID were conducted using semi-structured interview guides in private areas typically chosen by the participant across a range of settings, including social service centers, public parks, and HIV testing events.

Interviews with community partners explored unmet service needs and barriers and facilitators to accessing HIV prevention and treatment services among PWID. Community partner interviews were conducted using semi-structured interview guides in virtual and in-person settings, depending on the participant’s preference and feasibility of in-person interviews. In-person interviews were conducted in participants’ offices or conference rooms. Some community partner interviews were conducted with small groups from the same organization.

Interviews with PWID and community partners were completed in 60 min on average and were audio recorded and transcribed. Most interviews were conducted by an interviewer and notetaker, with the notetaker focused on documenting interview responses, nonverbal expressions, and contextual insight. Having an interviewer and notetaker present during interviews can contribute to an already unequal power imbalance between the interviewer and participant. However, notetakers were needed to help document information shared during interviews as the qualitative assessment was conducted as part of an outbreak investigation and required rapid analysis immediately after data collection to inform public health recommendations. Steps were taken to minimize the power imbalance by emphasizing that participation was voluntary and anonymous and selecting interviewers with experience working with PWID who could build rapport quickly.

Data Analysis

Immediately after each interview, the interviewer and notetaker completed an interview debrief form to document key findings. For interviews with PWID, interviewers or notetakers entered key information from each interview into a matrix, allowing for easy comparison of findings across participants. At the end of each day of data collection, all interviewers completed a group debrief form to capture key themes across interviews.

Codebooks for interviews with PWID and for interviews with community partners were developed. The codebooks included topical codes based on the interview guides, such as a “PrEP” code to capture excerpts related to barriers or facilitators to accessing PrEP services. The codebooks also included interpretive codes based on the interviews and debrief forms, such as an “Injection drug use stigma in clinical settings” code to capture excerpts related to perceived, anticipated, or actual experiences of injection drug use stigma and discrimination among PWID in hospitals or clinics. First, three PWID and three community partner transcripts were coded simultaneously by four analysts. Within each group, diverse transcripts were selected for team coding; for PWID, age, homelessness, and access to HIV prevention services were characteristics used to select diverse transcripts and for community partners, type of provider was a characteristic used to select diverse transcripts. Each analyst coded the same transcript individually and then the team of analysts reviewed the transcripts line-by-line to compare how codes were applied. After each team review of coded transcripts, the codebooks for PWID and for community partners were refined to ensure codes were applied in the same way across analysts and to incorporate newly identified themes. Once the codebooks were finalized, analysts independently coded the remaining transcripts using MAXQDA 2020 software. After coding was completed, relevant codes from PWID and community partner transcripts were summarized to identify frequently mentioned barriers to accessing HIV prevention services. Data collected during PWID interviews were analyzed separately from data collected during community partner interviews to compare patterns and differences in findings between the samples. Additionally, findings on barriers to HIV prevention services were entered into matrices to explore any similarities or differences in findings within the PWID and community partner samples. The matrices were developed using a priori categories from the interview guides and were filled out based on the interview notes and the transcripts.

The risk environment framework informed how these barriers were conceptualized and categorized. The risk environment framework emphasizes how contextual or environmental factors shape individual health behavior [42–44]. Specifically, the framework highlights physical, social, economic, or political factors operating at the microenvironmental or community-level as well as the macroenvironmental-level (e.g., national policies and laws, drug trafficking routes, gender and social inequities) [42–45]. For the HIV risk environment at the microenvironmental or community-level, physical factors can include drug injecting locations and homelessness; social factors can include social and peer norms and drug accessibility; economic factors can include cost of syringes and survival sex work; and political factors can include syringe access and local drug use policies or laws [43, 44]. Some researchers have incorporated individual-level factors into the HIV risk environment framework, including health and demographic characteristics [42–44]. Due to the scope and goals of our qualitative assessment, we focused on community- and individual-level factors that influence access to HIV prevention services among PWID in Kanawha County.

Results

Participant Characteristics

Twenty-six PWID were interviewed, most of whom were male (n = 15; 58%) and identified as White (n = 22; 85%) (Table 1). Half reported injecting drugs more than once a day. Eight of the 26 PWID (31%) reported receiving an HIV-positive test result. Of the 18 PWID without HIV, 89% reported HIV testing in the past 6 months. Among all PWID, 35% reported currently experiencing homelessness.

Table 1.

Self-reported characteristics of persons who inject drugs in West Virginia, June 2021 (n = 26)

Sociodemographic characteristics	N (%)
Aged ≤ 35 years	11 (42%)
Male	15 (58%)
Race
White	22 (85%)
Black/African American	4 (15%)
Lived in Kanawha County ≥ 5 yearsa	19 (76%)
Substance use behavior
Injects drugs > 1 time per day	13 (50%)
Polysubstance useb	19 (73%)
In recovery	6 (23%)
HIV-related characteristics
Received an HIV diagnosis	8 (31%)
Visited an HIV provider in the past 6 months (n = 8 PWID with HIV)	6 (75%)
HIV tested in the past 6 months (n = 18 PWID without HIV)	16 (89%)
Structural factors
Currently experiencing homelessness (at the time of the interview)	9 (35%)
Detained or incarcerated in the past 12 monthsa	8 (33%)
Ever had exchange sex	4 (15%)

^aMissing data: Years living in Kanawha County: n = 1; Incarceration: n = 2

^bPolysubstance use was defined as reporting using two or more injection or non-injection drugs in the past 12 months

Of the 45 interviews with community partners, 29 (64%) were with medical and substance use treatment providers, 6 (13%) were with policymakers, 3 (7%) were with social service providers, 3 (7%) were with law enforcement personnel, and 4 (9%) were with other types of community partners (religious leaders, researchers, public health practitioners). Medical and substance use treatment providers included HIV and opioid treatment providers, primary care, emergency department, and infectious disease clinicians, addiction and harm reduction specialists, and emergency medical services workers.

Barriers to Accessing HIV Prevention Services

Applying the risk environment framework, community- and individual-level barriers to accessing HIV prevention services among PWID were identified (Table 2). Findings from PWID and community partner interviews are presented together. In many instances, PWID and community partners had similar views on barriers to HIV prevention services. Any differences in findings between and within PWID and community partner samples are noted.

Table 2.

Community- and individual-level barriers to accessing HIV prevention services identified across interviews with PWID and community partners in West Virginia, June 2021

Community-level barriers
Political factors	Low community support for SSPs
Physical factors	Low SSP coverage Low coverage of HIV testing outreach events Low HIV PrEP availability Homelessness
Social factors	Injection drug use stigma and discrimination
Economic factors	Community beliefs that SSPs negatively affect economic investments (community partners only) Limited resources for HIV screening in clinical settings
Individual-level barriers
Co-infections and co-occurring conditions	Co-occurrence of hepatitis C infection, other injection-related skin or blood infections, and mental illness

Abbreviations: PWID = Persons who inject drugs; SSP = Syringe services programs; PrEP = preexposure prophylaxis

Community-level Factors

Community-level barriers to accessing HIV prevention services were categorized as political, physical, social, or economic factors. These are further described below.

Political Factors

Low Community Support for SSPs

Across interviews, especially those with community partners, participants identified limited community, public safety, and political support for SSPs as a key barrier to SSP access in Kanawha County. Participants provided numerous reasons for the low community buy-in for SSPs, especially needs-based SSPs. The most common reason was that community members felt needs-based SSPs increased syringe litter in the community, putting first responders and community members at risk for contracting blood-based infections via needlesticks. Indeed, some community partners, such as first responders, and a few PWID agreed with prevailing community misconceptions that needs-based SSPs pose public safety and health concerns for first responders and community members. However, many other community partners expressed concerns that SSPs were being treated as a political and public safety issue rather than as a public health intervention. They explained that some politicians and reporters fueled syringe waste concerns by focusing election campaigns and news stories on widespread syringe waste in the community. Another common reason for low community support for SSPs was pervasive stigmatizing beliefs in the community about PWID and SSPs, such as the misconception that substance use is a choice and moral failing. One clinician said community members believe that “if [PWID] wanted to stop using drugs…they can just stop.” Community partners and a few PWID also often noted that many community members believed SSPs enable drug use.

Many participants, especially community partners, attributed the closure of the two needs-based SSPs in Kanawha County to the low community support for SSPs. They also noted that the SSP closures negatively impacted access to SSPs and sterile syringes among PWID. One PWID participant said, “Taking the needle exchange away does not slow down [intravenous] drug use in any way, shape, or form. All it does is make people use dirty needles…” Many PWID and community partners described increased syringe sharing among PWID after the SSP closures due to decreases in SSP access.

Additionally, some community partners explained that the low community support for SSPs influenced the new state and local legislation that deemed needs-based SSPs illegal to operate. Community partners often noted that the state and local legislation posed barriers to implementing effective SSPs because it required local approval from policymakers to operate, clients to show ID to receive services, individually identifiable syringes to show which SSP dispensed them, and a goal of a one-to-one syringe exchange. Some community partners were not sure how they could move forward with plans to expand SSPs legally since the new legislation restricting SSPs had passed. One clinician even felt the legislation was an underhanded way of policymakers attempting to ban SSPs: “But I think what’s crazy is rather than just coming out and saying, ‘We’re against it [SSPs], we don’t want it at all,’ they’ve created rules that are very difficult to follow. And there’s people who have harm reduction programs in the state, who’ve seen the state rules, they’re saying, ‘We’re not even going to do the program, we’re just going to shut it down.’ It’s clear that they don’t want it, but it’s clear they’re making it such a gauntlet to adhere to it. ‘We’re just not going to do it.’” Some community partners felt they were stuck in an intractable situation; because SSPs had become such a “hot potato” political issue, few community leaders were willing to advocate for needs-based SSPs. Many community partners feared that the new legislation and hesitancy to discuss the issue would perpetuate low access to SSPs and continuation of the HIV outbreak.

Physical Factors

Low SSP Coverage

At the time of the interviews, syringe services were only offered at one clinic in Kanawha County; the clinic adhered to the regulations in the new legislation restricting SSPs. Some PWID were aware of the clinic’s syringe services; however, almost none had accessed syringe services at that location, often specifying it was because of the ID requirement. Community partners had mixed views on the clinic’s syringe services. Community partners who supported needs-based SSPs, such as substance use disorder (SUD) treatment providers and harm reduction specialists, described it as “high barrier” due to the ID and exchange requirements and low impact due to its small number of SSP clients. A few also mentioned the importance of implementing SSPs outside of a clinical model to better reach and engage PWID in the community. Community partners who opposed needs-based SSPs, such as first responders, approved of the clinic’s syringe services as they felt the clinic had more account-ability measures in place, such as barcoded syringes and exchange requirements, which they felt reduced syringe litter.

Low Coverage of HIV Testing Outreach Events

Prior to and during data collection, WVBPH and KCHD were implementing weekly HIV testing outreach events in collaboration with local service providers; gift cards were provided to those who completed HIV testing. Events were held at a variety of locations, including church parking lots and social service centers. Community partners expressed concerns that the HIV testing outreach events were not reaching people at highest risk for HIV infection due to the testing locations, poor coordination of testing events across service providers, limited resources for HIV outreach services, closure of SSPs that were trusted by PWID, and HIV stigma. Due to the low yield of HIV-positive test results at most HIV testing events, some community partners were concerned that the magnitude of the HIV outbreak was underestimated.

While most PWID who were interviewed had received an HIV test in the past six months, some also mentioned the importance of expanding outreach and mobile HIV testing to reach underserved areas. One PWID participant said, “…Some people don’t leave a two- or three-block radius for months at a time. You know? So you’re not coming around them, they’re never going to see it. They’re not going to get on the bus and go to the hospital to get an HIV test for themselves. And even if you were giving out [gift] cards and stuff there, they’re probably never going to hear about it.” Many PWID emphasized that it’s important to meet people where they are in the community when providing HIV testing.

Limited HIV Preexposure Prophylaxis (PrEP) Availability

Few community partners knew any PWID who were prescribed or taking PrEP, and no PWID who were interviewed had ever taken PrEP. Some community partners felt there was low PrEP awareness among PWID; however, most PWID who were interviewed were aware of PrEP and some expressed interest in taking PrEP due to high perceived HIV risk. Still, a few PWID noted there was limited advertising of PrEP for PWID, explaining that television commercials targeted gay men or that they were only told about PrEP at local HIV testing events after they reported being bisexual. Most community partners spoke about the need to make PrEP more available to PWID by providing more patient education on PrEP, integrating PrEP into substance use services or one-stop shop models, implementing mobile PrEP services, and offering lockboxes for medication storage.

Homelessness

Some community partners emphasized that it was difficult for PWID to access medical services, including HIV prevention services, because many were experiencing homelessness. A clinician explained, “Basically [PWID] are migratory. They don’t stay in one place, they don’t have a home so the homeless issue becomes a big deal…So getting them care, trying to get them here in the office is the first hurdle, and that hurdle is sometimes the biggest one.” Some PWID emphasized that they and other people experiencing homelessness and PWID had reduced access to caring outreach providers and needed medical services, such as sterile syringes, HIV testing, and wound care, after the SSP closures. One PWID participant also spoke about the challenges people experiencing homelessness face to exchange used syringes for sterile syringes: “I mean, when you’re homeless, can you carry around a big bucketful of needles? I mean, no.” Additionally, some community partners and PWID mentioned that it was difficult to deliver PrEP to PWID experiencing homelessness as they are unable to safely store the medication and prevent it from getting stolen. A few community partners noted that traditional clinical models of care were insufficient to provide medical services for this population, and a community-based SSP or street medicine model offering harm reduction, infectious disease, substance use, and social services would work better.

Social Factors

Injection Drug Use Stigma and Discrimination

Many PWID and community partners explained that PWID commonly experienced stigma and discrimination in healthcare settings, especially at local hospitals. These participants often described healthcare providers as being judgmental, saying cruel things, and withholding medical treatment because the patients were labeled as “addicts.” A PWID participant said, “…Once they [healthcare providers] draw our blood, find out we do drugs, it’s over. I mean, they ain’t helping us at all.”

As a result of experiencing or anticipating stigma and discrimination, PWID spoke about trying to avoid visiting hospitals when medical care may be needed, such as for injection-related infections. One PWID participant noted, “I know people that have died because they just didn’t want to go be treated like that…They let themselves lay out on a street, homeless, and die [rather than] go and seek treatment from the hospital.” Additionally, some community partners explained that PWID often left against medical advice, sometimes before receiving HIV testing or HIV testing results, due to enacted or anticipated stigma and discrimination and withdrawal symptoms.

Stigma and discrimination also posed barriers to accessing other types of HIV prevention services. Some community partners and a few PWID attributed the low access to sterile syringes to injection drug use stigma, explaining that community members’ beliefs that SSPs increase drug use were a reason for the low SSP coverage. Additionally, one PWID participant spoke about being denied sterile syringes at the local clinic that offers syringe services: “Doctor said that she felt it [sterile syringe distribution] would increase the amount of [drug] usage.” Additionally, one clinician felt PrEP was rarely prescribed to PWID and expressed the stigmatizing view that PWID would presumably be unable to adhere to it, saying, “I think the appropriate population [for PrEP] is extremely rare around here.”

Although community partners felt instances of stigma and discrimination were more common in emergency departments and hospital settings than other health and social service settings, many expressed concerns that PWID avoided accessing all types of medical services for fear of experiencing stigma and discrimination. Some spoke about the importance of providing education for providers on compassionate treatment of PWID, such as treatment of withdrawal symptoms and nonjudgmental language.

Economic Factors

Community Beliefs that SSPs Negatively Affect Economic Investments

While most community partners mentioned syringe litter and public safety as the primary community concern related to SSPs, some described community members having economic concerns with SSPs. These participants explained that many community members believed that SSPs led to an influx of PWID and people experiencing homelessness into Charleston, negatively affecting economic investments and property values in the city. In turn, these economic concerns fueled the low community support for SSPs and consequent SSP closures, decreasing SSP access for PWID. PWID did not discuss this finding during interviews.

Limited Resources for HIV Screening in Clinical Settings

Some PWID mentioned that they received HIV testing at the local hospital while receiving treatment for another medical condition, such as an abscess. However, most PWID preferred community-based HIV testing due to the gift card incentive and convenient access to services. One PWID participant said, “Because people don’t want to go to the doctor, but if the doctor comes to you, it’s a little bit easier.”

Community partners commonly noted that there was a lack of routine HIV screening protocols in clinical settings, especially in the emergency department. These community partners often explained that doctors were reluctant to conduct HIV screening in hospital settings due to a poor follow-up system for patients who test positive and limited time and staffing resources to complete the testing due to long waiting lines and limited available beds. One clinician said, “One of the tricks is balancing cost and diversion. If you [a person who uses drugs] come[s] in with abscesses…how much time or money are we able to spend on you when there’s a backlog of 30 people in the [emergency department]?” During the interviews, community partners described efforts by HIV providers to implement interventions to address the low HIV screening in the hospital, although they were facing implementation challenges. One intervention involved asking doctors to use the electronic medical record (EMR) system to initiate a consultation with the HIV providers if the patient screened positive for SUD so that the HIV providers could complete HIV counseling and testing. However, the HIV providers faced technological issues with the EMR system, encountered pushback from clinicians, and still required approval from the patient’s doctor of record to order the test, which delayed orders. A second intervention involved having a standing order for HIV tests in the emergency department; doctors and administrators were described as resistant to this intervention as a doctor’s name would be assigned to the standing order and it was perceived that the doctor would be liable for any adverse events or lack of follow-up after a positive test result.

Individual-level Factors

Individual-level barriers to accessing HIV prevention services were categorized as co-infections and co-occurring conditions.

Co-infections and Co-occurring Conditions

PWID and community partners reported that PWID often experienced multiple co-infections and co-occurring conditions, such as hepatitis C infection, other injection-related skin or blood infections, mental illness, and SUDs. For PWID, the most pressing issues for themselves and their friends tended to be acute medical conditions such as endocarditis and cellulitis because they often developed into advanced, painful infections requiring intensive medical treatment, including hospitalization and surgery. Similarly, community partners, especially clinicians, often noted that it was difficult to prioritize HIV prevention or treatment when treating PWID as they often had acute medical conditions that needed urgent attention.

Discussion

The findings from this qualitative assessment suggest that microenvironmental or community-level barriers, including low community support for SSPs and injection drug use stigma and discrimination, largely shaped access to HIV prevention services among PWID. This is consistent with the risk environment framework, which emphasizes the influence of environmental factors on individual’s health behavior [42–44]. Notably, PWID and community partners often identified similar barriers to HIV prevention services, although community partners tended to focus on policy and economic barriers more than PWID. The similarities and differences in findings across PWID and community partners demonstrate the importance of recruiting persons affected by the HIV outbreak and a diverse range of community partners when conducting a qualitative assessment. Findings underscore the urgent need for community-level interventions that will increase access to comprehensive harm reduction services and address stigma and discrimination in Kanawha County. Low-barrier, one-stop shop models offering sterile syringes and other harm reduction supplies, wound care, HIV and other infectious disease testing, and linkages to HIV and infectious disease care, SUD treatment, mental health, and housing assistance run by trusted, nonjudgmental providers might be effective [46–48]. Further, the results highlight how structural barriers such as legislation restricting SSPs impede efforts to expand access to SSPs, a crucial intervention to prevent HIV transmission among PWID [12–15].

Key barriers to expanding harm reduction services in response to the HIV outbreak were that two needs-based SSPs were closed due to community opposition and legislation had recently passed that deemed needs-based SSPs illegal in Kanawha County and WV [40, 41]. Importantly, participants noted that low access to SSPs resulted in increased syringe sharing among PWID; this is consistent with another qualitative study among PWID in Kanawha County [34]. Misconceptions about needs-based SSPs were pervasive in the community, such as the belief that SSPs enable drug use and increase syringe litter. CDC recommends the implementation of needs-based SSPs as it is the most effective approach for reducing transmission of HIV and other bloodborne infections among PWID [12–15]. Evidence shows that needs-based SSPs do not increase syringe litter, crime, or drug use [12, 30–33]. Community education campaigns addressing misinformation on SSPs and harm reduction may help change negative community views towards SSPs; in turn, increased community support for SSPs may help address structural barriers. Through these community engagement activities, public safety and other concerns can be addressed so that SSPs are seen as an important, effective public health intervention. For instance, education on the low risk of transmission of HIV and other bloodborne pathogens via needlestick injury may address community concerns related to needlesticks [49, 50]. Various strategies might address political barriers. For example, during the HIV outbreak among PWID in Scott County, Indiana in 2015, the Indiana Governor declared a public health emergency, allowing the first legal SSP to be established in the state; post-SSP implementation, injection-related risk behaviors decreased among PWID [51].

As SSPs can effectively link PWID to a range of medical services [52, 53], the low SSP coverage may have also negatively affected access to HIV testing, PrEP, and treatment for other conditions among PWID. Health department staff built key partnerships to implement frequent community-based HIV testing events throughout the HIV outbreak period; however, they were restricted in the testing locations they could use due to logistical challenges, including issues getting approval for certain testing locations. Through informal conversations, HIV testing outreach staff noted that they faced challenges getting approval to use certain locations for HIV testing outreach events. For example, one local official did not approve a testing location as they did not feel the community had a problem with substance use or HIV. Many participants described these HIV testing outreach events as not operationally optimal and low yield. Additionally, few PWID in the area were known to be taking PrEP at the time of the interviews. Medical chart abstraction in Kanawha County also found no PWID with HIV were prescribed PrEP during healthcare encounters in the year prior to their HIV diagnoses [39]. The SSP closures may have impeded efforts to expand access to HIV testing and PrEP because public health practitioners were unable to build an infrastructure for HIV outreach services around existing community-based SSPs or harm reduction services that were trusted and well-attended by PWID. Additionally, it is critical to implement a combination of HIV prevention interventions to effectively reduce HIV transmission among PWID; expanding HIV testing alone is insufficient [4, 11, 54]. Since completing data collection, service providers have made efforts to expand PrEP access to PWID, including planning for and implementing mobile PrEP services. However, due to the described political and community factors, Kanawha County service providers continue to face challenges expanding access to SSPs. As was the case during data collection, syringe services are only offered at one clinic. Notably, one participant described being denied sterile syringes by a provider at the clinic. Further, this clinic has few SSP clients; medical chart abstraction at this clinic found that four of 65 PWID with HIV received sterile syringes in the year prior to their HIV diagnoses through June 2021 [39].

In addition to low access to community-based HIV testing, there was limited HIV screening in clinical settings due to injection drug use stigma and discrimination, lack of treatment for withdrawal symptoms, and limited resources and time to conduct HIV screening, especially in emergency department settings. These findings are consistent with those found through medical chart abstraction in Kanawha County, which identified missed opportunities for HIV testing across healthcare encounters among PWID with HIV in the year prior to their HIV diagnoses [39]. Since completing data collection, the main hospital system in Kanawha County has begun to offer HIV testing to patients who screen positive for SUD. Routine, opt-out HIV screening in hospital settings has been shown to increase detection of undiagnosed HIV infection and linkage to care [55–57]. Further, training of healthcare providers on compassionate treatment of PWID, SUD treatment, harm reduction, and HIV and SUD stigma reduction may help address stigma and discrimination in clinical settings [58, 59]. After completing this investigation, an AIDS Education and Training Center provided stigma reduction training to Kanawha County healthcare providers [60].

Another key barrier to accessing HIV prevention services was that PWID were often experiencing a syndemic of co-occurring structural and psychosocial conditions, including stigma and discrimination, homelessness, mental illness, injection-related skin or blood infections, HIV, and SUDs. As a result, providers faced challenges reaching PWID and comprehensively treating patients due to limited resources and limited integration of primary care, infectious disease, substance use, and social services. Offering integrated prevention services for PWID has been found to increase access to services and improve effectiveness of infectious disease prevention efforts [61].

Limitations

There are a few limitations to this analysis. First, PWID and community partners were recruited using purposive sampling for this qualitative assessment during an outbreak investigation and the samples may not be representative of the larger populations. As such, the prevalence of attitudes, beliefs, or behaviors reported in this analysis are not necessarily representative of all people affected by the HIV outbreak; however, qualitative studies are not designed to estimate prevalence. Additionally, PWID were recruited mainly through provider referral, which may have hindered recruitment of PWID who were not accessing HIV prevention services. Second, due to recruitment challenges, there were limited numbers of participants who were not engaged in HIV prevention or treatment services (e.g., HIV testing) or who exchanged sex. Additional research should be conducted to better understand the unique barriers to accessing HIV prevention services among these groups. Finally, there may have been social desirability bias among participants when reporting syringe sharing, as almost all were aware that HIV was spread through blood-to-blood contact.

Conclusions

In the context of an HIV outbreak among PWID, numerous political, physical, social, and economic community-level barriers influenced individuals’ access to HIV prevention services. Community-level interventions are urgently needed to increase access to sterile syringes and other injection equipment through comprehensive harm reduction services. Low-barrier, one-stop shop models implemented by trusted, nonjudgmental providers that offer harm reduction, infectious disease, mental health, and social services can effectively reduce HIV transmission [46–48]. Multi-level interventions addressing the syndemic of structural and psychosocial conditions, such as stigma and discrimination, homelessness, and mental illness, are critical response activities for an HIV outbreak affecting PWID [4, 62].