Clinic-Level Strategies for Mitigating Structural and Interpersonal HIV Pre-Exposure Prophylaxis Stigma

Abstract

Uptake of and persistence on pre-exposure prophylaxis (PrEP) in the United States have been limited. The potential of new PrEP modalities to increase access will be hindered if underlying structural and interpersonal barriers—including, insurance coverage, initiation and maintenance clinical protocols, provider bias, stigma, and lack of trust in health care—are not adequately addressed. We conducted in-person and telephone-based recorded interviews with 32 US-based clinical and nonclinical PrEP providers spanning the PrEP implementation continuum (clinicians, counselors, and support staff). Providers were recruited at biomedical HIV prevention conferences and networks to explore barriers to and strategies for PrEP implementation. Providers provided care to clients spanning adolescents to adulthood and a variety of genders across all geographic regions of the United States. To directly mitigate stigma, providers called for clinic-level interventions to normalize and universalize PrEP education and services, counseling and other services that center patients' lived experiences and circumstance, staffing and community engagement models that value patients, and implementation of specific programs and processes that facilitate access to services. To address disparities in access, PrEP implementation should acknowledge the interconnectedness of stigma and structural barriers to care.

Introduction

Pre-exposure prophylaxis (PrEP) is a highly effective biomedical HIV prevention strategy; however, in the United States, estimates indicate that only 18% of an estimated 1.2 million who would benefit from a PrEP prescription have initiated daily oral PrEP.^1–3 Further, the majority of new PrEP prescriptions has been provided to White men who have sex with men (MSM), while Black and Latino MSM, cis women, and transgender people lag behind in PrEP access equity.^4–6 Currently, PrEP is offered as an oral pill that can be taken daily or on an event-driven regimen (currently approved by the World Health Organization, but not the US Food and Drug Administration, which may impact regional implementation)^7,8. Upcoming PrEP modalities (i.e., long-acting pills, injectables, and insertable ring) offer opportunities to increase overall PrEP uptake; however, inequities in PrEP uptake and persistence are likely to remain or be exacerbated if underlying barriers are not addressed.^9–11

Under current clinical protocols, initiation of and persistence on daily oral PrEP necessitate regular clinic and pharmacy visits. In these interactions with the health care system, both interpersonal and structural barriers can contribute to disparities in PrEP access through experiences of stigma that oppressed communities' experiences on multiple levels (i.e., race, sexual orientation, income, and HIV status).¹² Interventions have explored decreasing the impact of stigma on the patient experience, including provider-focused trainings on implicit bias reduction, targeted HIV-related stigma reduction trainings, popular opinion leader interventions, and cultural competency trainings.^13–18

While many of these interventions report improvement in providers' self-reported attitudes, few studies report tangible effects of these interventions on patient outcomes,¹⁸ and those that have been primarily conducted internationally and may not be generalizable to the way stigma manifests in US settings.¹⁶ Structural challenges, including the high price of medication, unequal insurance coverage, location of PrEP access points, and lack of flexible clinic hours, can uniquely interact with interpersonal experiences in driving disparities in access to PrEP. This interaction warrants further study.

In this qualitative study, we interviewed providers about clinic-level strategies at the interpersonal and structural level, which, in their experience, have reduced stigma in their current implementation of daily oral PrEP and consider the implications for expanding access to future PrEP modalities, like long-acting injectables. This analysis aims to highlight the challenges and strategies providers identified to reduce stigma and enhance trust in the health care system among potential and current PrEP patients.

Methods

Semistructured, in-depth interviews were conducted with PrEP providers (any professional facilitating access to PrEP across the care continuum) to generate insight into lessons learned from the rollout of daily oral PrEP. A purposive sample of providers with varied professional backgrounds and serving geographically and demographically diverse populations was recruited through email. The study sample included 32 US-based PrEP providers who were categorized into one of three job roles—clinician (i.e., physicians or advanced practice clinicians providing direct patient care), counselor (i.e., staff providing PrEP education counseling and/or benefit navigation), or other (i.e., outreach/community engagement specialists and staff in administrative or managerial roles). We classified participants geographically by US Census Bureau regions (Northeast, South, Midwest, and West). We conducted interviews until data saturation was reached and no new theme emerged. Due to a problem with recording technology, 29 participants were included in this analysis (Table 1).

Table 1.

Participant Characteristics (N = 29)

	n (%)
Job role
Counselor	19 (65.5)
Clinician	4 (13.8)
Other role (i.e., administrator, community engagement)	6 (20.7)
Geographic region
Northeast region	10 (34.5)
South region	9 (31.0)
West region	7 (24.1)
Midwest region	3 (10.3)

Interviews were conducted in person or by phone between April 2018 and March 2019 by four trained research staff, lasted 30–80 min, and were digitally recorded. Participants were asked about (1) their experiences providing oral PrEP (daily and event driven), including challenges faced and successful strategies to overcome them; (2) advice on preparing for the implementation of new PrEP modalities (i.e., long-acting injectables); (3) trainings and resources needed to support patient choice in the era of multiple PrEP modalities; and (4) specific barriers to care that providers have experienced with different priority populations. Participants were compensated with $50 cash or gift card for their time. All study procedures were approved by the City University of New York Institutional Review Board.

Two members of the research team listened to each interview and summarized responses. Theoretical thematic analyses were used to analyze the data.¹⁹ A coding framework based on key research questions was developed before coding. Themes were generated using a deductive approach. Two independent coders read summaries of the interviews, met to discuss emerging codes, and coded interview excerpts. Coding discrepancies were discussed until both coders agreed.

Results

We identified four key themes that can inform HIV prevention and PrEP programs to directly mitigate stigma: (1) normalize and universalize PrEP education and services; (2) provide counseling and services that center patients' lived experiences and social context; (3) establish staffing and community engagement models that value patients; (4) implement specific programs and processes that facilitate access to services; and (5) the necessity for equitable implementation of new modalities of PrEP. We describe each theme below and summarize key findings (Table 2); illustrative quotes can be found in Table 3.

Table 2.

Major Themes and Subthemes

Major themes
	Normalize and universalize PrEP education and services	Counseling and services to center patient experience	Establish staffing and community engagement models to value patients	Programs and processes to facilitate access to services
Subthemes	1. Current risk assessment and screening tools do not resonate with patients' self-perceptions of risk	1. Tailored counseling, including a shared decision-making approach, can center patients' needs to increase PrEP acceptability	1. Staff who reflect the demographics and experiences of the patient population can build trust	1. Structural barriers can impede PrEP access and exacerbate existing alienation from the health care system
	2. Relying on risk assessment for PrEP eligibility may miss patients who would benefit from PrEP, but do not disclose certain behaviors	2. Improving provider communication skills and use of inclusive language can reduce stigma	2. Clinics that prioritize community engagement can normalize PrEP use within the patient's community	2. Clinic-level programs can mitigate the financial burden of PrEP to facilitate broad access
	3. Providing universal PrEP education can help patients identify HIV prevention as relevant to them	3. Addressing provider bias (both current and historical) can build trust	3. Cultural competency training for staff can supplement other policies to reduce stigma	3. Clinic-level processes can simplify PrEP startup and maintenance protocols to build trust between patients and providers
	4. Universal PrEP education can reduce stigma
	5. Universal PrEP education can increase community-level awareness

PrEP, pre-exposure prophylaxis.

Table 3.

Stigma-Reducing Strategy Themes and Participant Quotations

Theme	Example quote
1. Normalize/universalize PrEP education and services	1a: “In general, what we've learned is that obviously these [CDC] guidelines have a certain clinical, substantive logic behind them but that it's not how people describe themselves or their behaviors always…” —Participant 25: Other staff, West region
	1b: “I often times feel like I know my patients and then—through one of my mental health providers or one of the case managers—discovered part of the patient's life I was completely unaware about. So I can't presume to know what's best for my patient.” —Participant 6: Clinician, Northeast region
	1c: “Some people still internalize the narrative that it's only gay-identified people who are at risk…if they are not given access to that information, you know, they probably don't identify with it as a thing for them.” —Participant 25: Other staff, West region
	1d: “If you make [PrEP] part of a routine visit, that will go a very long way to rid that misconception; this isn't something that you need to hide, you're just coming in for a doctor's appointment.” —Participant 14: Other staff, West region
	1e: “We have to go out and inform everybody's sisters, cousins, aunties, friends [about PrEP]. We have to talk to mothers, fathers. We have to talk to teachers. We have to talk to other people who are essentially gatekeepers of information…If you are in any person-serving profession, you should know what PrEP is and know who to talk to if you have a client who needs it, if you have a family member who needs it, if you need it. We have to bring everybody into the conversation, everybody.” —Participant 28: Counselor, Midwest region
2. Provide counseling and services that center patients' experiences	2a: “Not one size fits everyone because, you know, each encounter is a different approach, a different tone…So when you are approaching people, it's about their environment, their behavior, their culture, and their perception—not mine.” —Participant 23: Other staff, South region
	2b: “I like to highlight the fact that, you know, at the end of the day, people who are using PrEP are protecting themselves from HIV. And so while we encourage people to use PrEP and condoms, I wouldn't want you to not protect yourself from HIV.” —Participant 13: Counselor, South region
	2c: “[Providers need] better education around PrEP, better education around sex and being sex positive…like asking them the questions and getting comfortable with the uncomfortable.” —Participant 18: Other staff, Midwest region
	2d: “Providers are people, with their own morals and ethics. I had a provider at a student health clinic discontinue PrEP for a patient because she thought that he was being too risky, that he was having too many partners and she didn't want him to feel licensed to do that in his life so she refused to rewrite his prescription.” —Participant 16: Other staff, Midwest region
	2e: “We had a lot of LGBT staff and they were like ‘why do you keep trying to push pills down gay men's throat?’ So we had to continue to show the LGBT [community] that we aren't ‘out to get them’ but want to keep them safe and healthy. So we can see some of the stigma walls falling down now.” —Participant 4: Counselor, Northeast region
3. Establish staffing and community engagement models that value patients	3a: “Some people [would] rather listen to a Black person talk about it [PrEP] than a White person talk about it because there is that issue with trust. Like sometimes if a White provider says ‘I'm going to give you an HIV test’ I have had clients who think [the provider is] going to give them HIV. So trust is a major barrier.” —Participant 3: Counselor, Northeast region
	3b: “I always say, ‘I'm gay’, I don't have a problem saying that to patients because I noticed that right away, they open up. And the language and lingo, I try to make them as comfortable and honest to build the relationship.” —Participant 5: Clinician, Northeast region
	3c: “You gotta understand those social determinants, those struggles, those challenges and those core issues…. You can't fool the community, they're very educated on the people who are not real, do not care for them. And I always tell people, people don't remember what you did for them or what you offered them, they just remember how you make them feel, that's what they take away from…You didn't make me feel worthy or valued, that's why I don't trust you.” —Participant 23: Other staff, South region
	3d: “When we look at the HIV epidemic and PrEP uptake, Black communities are most impacted but, they're less likely to use PrEP. So we talk about and do a lot of LGBT cultural competency, and cultural competency for the trans community, but we aren't talking enough about race and the intersections of race and these other identities and institutional racism and, you know, the history of medical abuse to Black people…I think it's something that's an uncomfortable topic for a lot of people and so we're not talking about it but we're seeing the impact of that in terms of new HIV diagnoses.” —Participant 13: Counselor, South region
4. Implement programs and processes that facilitate access to services	4a: “If you look at current PrEP users now I think it's very, very stark. Like who is insured? Who can afford to be on PrEP? It's not just how we market it, but it also touches on these engrained inequities on who has access to health insurance, who has access to sliding scale services, who has access to payment assistance programs? I think it's something we really need to work on, especially if we are trying to get these folks who are locked out of these services to trust us. We still have a responsibility to bridge that gap.” —Participant 22: Counselor, West region
	4b: “White gay cis men are told about how you can take [oral PrEP] on demand, but then communities of color aren't. It creates these bigger disparities in PrEP access that the communities of color can see are being allowed to exist.” —Participant 19: Counselor, West region
	4c: “Sometimes folks need to be physically escorted to Walgreen's to get their first starter pack, or they need to be escorted to the Department of Health or to their first appointment for PrEP because it's something new, they have no idea that it's that intense…people just need that extra push.” —Participant 2: Counselor, Northeast region
	4d: “If a patient doesn't want to go to a provider for a number of reasons—distance, geography, stigma, convenience—they chat with our pharmacist on the clinical version of Skype so they can get PrEP care in their home. We built this system based off of rural broadband speeds, so you could literally pull onto a rural, gravel road and still be able to take a call from our pharmacist.” —Participant 16: Other staff, Midwest region

Normalize/universalize PrEP education and services

Almost every participant raised the need to normalize and broaden PrEP education and services in health care. Participants believed that PrEP should be offered to all patients, advocating for the elimination of a risk-based screening approach to PrEP candidacy. While most participants used risk assessments in their practice, they believed them to be imperfect, perpetuate stigma, and impede the establishment of rapport and assessment of patients' needs.

Participants deemed risk screening tools imperfect because (1) guidelines for PrEP eligibility are often discordant with the ways in which patients perceive their own risk (Quote 1a) and (2) certain behaviors may be uncomfortable for patient to disclose to a health provider (Quote 1b). Instead, participants suggested clinics provide universal PrEP education (i.e., informing all patients about the availability of PrEP) to normalize PrEP as a component of an overall sexual health “toolkit.”

The normalization of PrEP in settings that do not primarily cater to lesbian, gay, bisexual, and transgender (LGBTQ) communities was also identified as a strategy for reducing both HIV and LGBTQ stigma, signaling to patients that comprehensive sexual health care can and should be a part of their overall self-care and health practices (Quotes 1c and 1d). A subset of participants also noted the importance of social service providers and community members being knowledgeable of PrEP information and referrals (Quote 1e). Finally, participants stressed the importance of marketing that normalizes PrEP as a medication for everyone who is sexually active, especially in light of new modalities, and that this strategy could lower PrEP stigma.

Provide counseling and services that center patients' lived experiences

Participants consistently reported provider communication skills that intentionally centered patients' lived and contextual experiences (i.e., racism, socioeconomic status, etc.) as an effective strategy to reduce experiences of multiple levels of stigma in a clinical setting. Specifically, participants suggested a shared decision-making counseling approach to prepare participants to integrate information about PrEP into the context of their lives (Quote 2a). Participants expressed an urgency to move away from the paternalism of a “provider knows best” mentality toward a model in which the patient's experience is respected and prioritized.

Participants also identified the use of culturally competent and inclusive language in provider-patient communication as a way to reduce stigma. Specifically, in addition to having multilingual materials and staff, providers should ensure that HIV prevention counseling language is gender inclusive, not stigmatizing, comprehensible, and informative. For example, rather than using “risk compensation” language (i.e., that patients on PrEP may be more likely to engage in “risk behaviors”), participants encouraged providers to frame PrEP positively (Quote 2b). In addition, participants highlighted the need to train providers to be comfortable and knowledgeable about comprehensive sexual health information (Quote 2c). Finally, participants called on the medical community to acknowledge and actively address the historical harms that have impacted the care of many Black and LGBTQ populations (Quotes 2d and 2e).

Establish staffing and community engagement models that value patients

Participants highlighted the importance of clinics demonstrating how much they value and care for the wellbeing of their patients to build trust and increase patient satisfaction, as well as PrEP retention. Participants discussed the importance of employing providers whose racial, ethnic, and gender identities reflect those of the community they are serving. Participants pointed out that providers who reflect the communities they serve may be more likely to understand their patients' experiences and may be better equipped to help them overcome barriers (Quote 3a). Many participants also discussed the benefit of representation of staff from the LGBTQ community; in fact, disclosure of their own sexual identity or PrEP use was a strategy several used to connect with patients and build rapport (Quote 3b).

Participants also affirmed the importance of incorporating community engagement into PrEP implementation efforts to adequately reach populations that may be marginalized or mistreated by the medical system. Many participants emphasized that community relationships are key to establishing rapport between the clinics and patients and noted that a lack of community investment would continue to exacerbate disparities in PrEP use, especially as new PrEP modalities are introduced (Quotes 3c and 3d). Finally, participants emphasized training staff to be culturally competent as a complementary strategy to improving community engagement and staff hiring practices.

Implement programs and processes that facilitate access to services

Throughout the interviews, participants reported several structural barriers that not only impede PrEP access but also signal to patients that their wellbeing is not prioritized, including the high cost of medication, the complexity of financial assistance programs, differential access to insurance coverage, and the burden on patients to comply with PrEP startup and maintenance protocols. Nonetheless, participants shared clinic-level practices that could be implemented to communicate to patients that their health is valued and that PrEP is “for them.”

First, participants frequently cited financial barriers to PrEP—inadequate insurance coverage and medication cost—to explain reasons for PrEP nonuse among their patient population. Financial hurdles not only hinder low-income communities from accessing PrEP but also indirectly convey that the health care system does not care about their wellbeing. Participants noted that despite financial assistance programs, many PrEP-eligible individuals did not seek PrEP due to anticipated costs (Quote 4a). Participants suggested raising awareness about existing financial assistance programs and strengthening staff training to navigate patients through financial and insurance options.

In addition, participants called for medical providers to advocate for equitable access to PrEP with insurance and pharmaceutical companies, especially to accompany the introduction of new PrEP modalities. Some participants suggested that on-demand PrEP (an efficacious method for taking PrEP in anticipation of sex, rather than adhering to a daily regimen) could reduce financial barriers by lowering the number of pills that some patients would need to remain protected. However, currently, information is being shared differentially, reinforcing distrust of the medical establishment (Quote 4b).

Second, participants described the ways in which current protocols for starting and maintaining a daily oral PrEP prescription exacerbates distrust of the system by appearing unnecessarily complicated and burdensome to patients, including compliance with frequent clinical visits, laboratory work, and pharmacy visits. These requirements may be especially challenging for populations with limited engagement in health care, such as the uninsured or youth.

Strategies to foster trust included having supported and trained PrEP navigators or case managers who can not only guide patients through PrEP education and financial coverage but who can also counsel patients on adherence and retention strategies, follow up with patients, and ensure continuity of care (Quote 4c). Further, participants emphasized that small initiatives can communicate to patients that their health is a priority, for example, integrating reminder systems and implementing channels for direct communication with providers to troubleshoot challenges with PrEP use, manage appointments, and build rapport.

In addition, participants encouraged clinics to facilitate access through increasing their hours and being intentional about clinic locations. Participants noted a disconnect between standard clinic hours and patient schedules and pointed to improvements in PrEP uptake and retention with extended clinic hours. Some participants also highlighted the discrepancy in the location of PrEP clinics and the location of populations who would benefit from PrEP. To overcome geographical barriers to PrEP care, one location developed a telemedicine program to deliver PrEP to rural communities (Quote 4d).

New modalities

Participants energetically embraced the potential for new PrEP modalities, including long-acting injectables, combined pill for PrEP and contraception, once-monthly pill, and vaginal ring. They framed these new technologies as potential “game-changers” for HIV prevention as they could expand access to patients for whom a daily oral pill is not a good option. However, this enthusiasm was tempered by anticipation of an unequitable roll out of new modalities. To counter potential obstacles, participants emphasized establishing the stigma-reducing strategies outlined above and further training on method attributes, clinical requirements, and financial aspects to prepare clinics for implementation. Further, respondents noted the importance of “options” counseling and utilizing a shared decision-making approach—perhaps modeled on contraceptive counseling frameworks—that would help to center patients by tailoring available sexual health tools to meet their needs.

Discussion

This study sheds light on the ways in which structural and interpersonal factors impede access to current PrEP modalities and drive disparities at a clinic level. Our diverse sample of PrEP providers argued that clinic-level policies and trainings can significantly impact the experience of patients who would benefit from education and access to PrEP. While individual-level interventions designed at reducing provider bias have had mixed results,^13,14,16 such interventions may be more successful if accompanied by structural and policy level changes. Rather than conceptualizing stigma as a separate issue from structural barriers to care, participants linked the two.

Participants routinely emphasized the importance of health care providers and institutions intentionally removing clinic-level barriers to care and actively shaping their systems to meet the needs of all patients to expand access to PrEP currently, and ensure an equitable implementation of new modalities as they are approved. This advice included the following: (1) normalize and universalize PrEP education and services to all patients; (2) provide counseling and services that center patients' lived experiences and social context; (3) establish staffing and community engagement models that value and reflect patient population; and (4) implement specific programs and processes that facilitate ease of access to services, including pre-emptively preparing for new modality protocols. Within each of these themes, participants detailed specific strategies to mitigate stigma and build trust between PrEP patients and the health care system to expand access to and retention in PrEP care.

First, the majority of providers emphasized that normalization of PrEP in all health care settings is critical to expanding access to current and future modalities. Research has demonstrated that many patients with PrEP indications do not view themselves as PrEP candidates^20,21 and that using CDC guidelines may miss patients who may be eligible for PrEP because, similar to our findings, patients may not disclose behavioral information to clinical staff.²² Echoing our results, recent recommendations for PrEP rollout include universal PrEP education in all health care settings to increase access; reduce stigma by broadening PrEP eligibility beyond specific behaviors; and increase community-level awareness, particularly among cisgender women who may not identify as high risk for HIV infection.²³

Second, providers highlighted the need for counseling and services that center patients' experiences. Previous work has found the best strategy for prescribing once-daily oral PrEP was one in which the provider contributes medical expertise and the patient contributes expertise on their behavioral history, goals, and logistical ability to integrate PrEP, or other HIV prevention strategies, into their overall “sexual health toolkit.”¹¹ In addition, our study offers further evidence on the importance of using inclusive language to reduce the stigma of seeking out a PrEP prescription.^12,24

Third, providers advocated for establishing staffing and community engagement models that explicitly value the patient population. Recent research identified the absence of patient-provider trust as exacerbating current inequity in health care and highlighted the ways in which safety cues (i.e., seeing clinic staff who reflect the patient population) can foster that sense of trust.²⁵ Finally, a need for cultural competency training was emphasized at all levels of clinic staffing, from receptionists to clinicians, echoing recent research in which providers have welcomed evidence-based cultural competency training to reduce stigma.¹²

Fourth, participants advocated for clinics to prioritize programs and develop processes that facilitate ease of access to clinical and financial assistance services to expand access to current and future PrEP modalities, as well as increase retention. Not only do the logistical and financial barriers to current PrEP care complicate PrEP access, but also the burdensome system can exacerbate existing feelings of alienation from the health care system. Prior research has documented PrEP patients' frustrations and challenges with obtaining and maintaining a prescription, and the ways in which financial and clinical protocols make them feel like a burden to the health care system.¹² In contrast, offering patients a health care experience in which their health and wellbeing are prioritized by clinic staff can facilitate trust between stigmatized populations and the health care system.²⁵

The results of this study should be considered with several limitations in mind. While our sample is representative of all four US Census Bureau geographic regions, most of our participants were providing care on the East or West coasts and may reflect challenges specific to these settings. Although all participants were current PrEP providers, they differed in length of time they had been serving in that role and may have differing experiences and comfort levels in implementing PrEP. Nonetheless, one strength of our study was to include patient-facing staff in nonclinical roles (i.e., counselors), in addition to clinicians.

Patients spend much of their time in care with navigators and counselors, whose perspectives on barriers and facilitators to PrEP access have been less researched, and whose social proximity to patients may enhance patient disclosure and comfort. Finally, the strategies suggested to overcome structural and interpersonal barriers have not been empirically tested for their effectiveness. Our research indicates the need to rigorously study these strategies in diverse clinic settings and assess impact on patient outcomes.

Insights from PrEP providers across the United States suggest that PrEP implementation should acknowledge the interconnectivity of stigma and structural barriers to care. As new PrEP modalities are approved for use, it will be critical for health care providers to integrate policies that mitigate the impact of stigma at a structural and interpersonal level to ensure expanded access to biomedical HIV prevention. It is crucial that proposed clinic-level interventions be rigorously tested for their efficacy.

Disclaimer

The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.

Author Disclosure Statement

None of the authors has a conflict of interests with this study.

Funding Information

This study was supported by grant funding from National Institute of Mental Health (Grant No. R01MH106380, S.A.G., PI). The funder had no input into the development or content of this article.