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Pathways to HIV Pre-exposure Prophylaxis Among Women Prescribed PrEP at an Urban Sexual Health Clinic

Park, Connie J., MD; Taylor, Tonya N., PhD, MS; Gutierrez, Nataly Rios, BA; Zingman, Barry S., MD; Blackstock, Oni J., MD, MHS*

Journal of the Association of Nurses in AIDS Care: May-June 2019 - Volume 30 - Issue 3 - p 321–329
doi: 10.1097/JNC.0000000000000070
Feature Article
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Little is known about real-world facilitators of and barriers to pre-exposure prophylaxis (PrEP) uptake among women prescribed PrEP. We sought to characterize the pathway to PrEP uptake and continuation in women prescribed PrEP at an urban sexual health-focused clinic. We conducted semi-structured individual interviews with 14 women from October 2016 to May 2017. Using grounded theory and the constant comparative method, we found that self-perceived HIV risk, learning about PrEP through trusted sources, having positive interactions with PrEP providers, and insurance coverage were facilitators of PrEP uptake and continuation. Concerns about PrEP safety, misinformation about PrEP eligibility and appropriateness, lack of insurance coverage, and pharmacy impediments were key barriers. The confluence of these issues led to PrEP rumination, a process of ongoing deliberation about the benefits and risks of PrEP. These findings provide important insights about how to increase PrEP uptake among women at high risk of HIV infection.

Connie J. Park, MD, is an Assistant Professor of Medicine, Division of Infectious Diseases, Montefiore Medical Center/Albert Einstein College of Medicine, Bronx, New York, USA. Tonya N. Taylor, PhD, MS, is an Assistant Professor of Medicine, Department of Medicine, SUNY Downstate Medical Center, Brooklyn, New York, USA. Nataly Rios Gutierrez, BA, is a Study Coordinator, Division of General Internal Medicine, Montefiore Medical Center/Albert Einstein College of Medicine, Bronx, New York, USA. Barry S. Zingman, MD, is a Professor of Medicine, Division of Infectious Diseases, Montefiore Medical Center/Albert Einstein College of Medicine, Bronx, New York, USA. Oni J. Blackstock, MD, MHS, is an Assistant Professor of Medicine, Division of General Internal Medicine, Montefiore Medical Center/Albert Einstein College of Medicine, Bronx, New York, USA.

Corresponding author: Oni J. Blackstock, e-mail: oblackstock@yahoo.com

Sponsorships or competing interests that may be relevant to content are disclosed at the end of this article.

Despite an overall decline in new HIV diagnoses among women in the United States during the past decade, significant racial/ethnic disparities persist. In 2016, women accounted for 19% of new HIV diagnoses in the United States (Centers for Disease Control and Prevention, 2017); however, the majority of diagnoses were among non-Latina Black women and Latinas. In New York City, non-Latina Black women accounted for 61% of new HIV diagnoses, 15 times higher than the rate among non-Latina White women. Latinas comprised 30% of new HIV diagnoses, almost 8 times higher than their non-Latina White counterparts (Centers for Disease Control and Prevention, 2017). Heterosexual contact remains the primary transmission risk factor for all women in New York City, contributing 98% of cases (New York State Department of Health, 2017).

Daily oral pre-exposure prophylaxis (PrEP; with emtricitabine/tenofovir disoproxil fumarate) is a safe and highly effective HIV prevention tool to reduce the risk of acquiring HIV (Baeten et al., 2012; Centers for Disease Control and Prevention, 2018; Thigpen et al., 2012). It also has the benefit of being a user-controlled HIV prevention method, thus eliminating the need for cooperation or negotiation with a male partner. However, PrEP use among women, especially Black women and Latinas, remains low (Blackstock, Patel, Felsen, Park, & Jain, 2017; Smith, Van Handel, & Grey, 2018). Data from a network of primary care sites in New York City found that by June of 2016, the PrEP prescription rate for women remained very low compared with the rate for men (32.4 vs. 1,036.4 prescriptions per 100,000 patients; Salcuni, Smolen, Jain, Myers, & Edelstein, 2017). Similarly, a study of PrEP uptake among persons in the United States with commercial health insurance found an almost 27-fold increase in the number of male PrEP users from 2010 to 2014, although prescriptions for women stayed low with little change (Wu et al., 2017). Racial/ethnic disparities were also observed, with White women being approximately four times more likely to initiate PrEP compared with Black and Latina women (Bush et al., 2017).

Outside of clinical trials, little is known about the facilitators of and barriers to PrEP uptake and continued use among women who have been prescribed PrEP in the United States. Researchers have explored knowledge and attitudes, as well as individual and systemic barriers to PrEP uptake among potential PrEP users (Aaron et al., 2018; Collier, Colarossi, & Sanders, 2017; Flash, Dale, & Krakower, 2017; Gandhi, Scanlin, Myers, & Edelstein, 2017). Therefore, by applying the concept of the PrEP care continuum (similar to the HIV care continuum) to map out PrEP uptake (Kelley et al., 2015; McNairy & El-Sadr, 2014; Nunn et al., 2017), we sought to characterize the pathway to PrEP uptake among women prescribed PrEP at an urban clinic that served predominantly Black and Latina women, thus reflecting the current epidemic among U.S. women. We anticipated that our findings would provide important insights on how to increase PrEP uptake among women at high risk of HIV infection.

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Methods

Setting

The site for this study was the Oval Center, a comprehensive sexual health clinic that is part of a large integrated health care system in the Bronx, New York City, a region with high HIV prevalence (New York City Department of Health and Mental Hygiene, 2017). The clinic focuses on and provides a number of sexual health services, including PrEP and postexposure prophylaxis, as well as screening and treatment for sexually transmitted infections. The Oval Center is staffed by four infectious diseases specialists, a nurse practitioner, and two full-time PrEP patient navigators. There is broad appointment and walk-in availability. PrEP referral sources to the clinic include the health care system's HIV clinic, hospital-based HIV testing and counseling program, affiliated community-based clinics, and local community-based organizations. In New York State, through a combination of health insurance coverage, a state sponsored PrEP assistance program, and a pharmaceutical-sponsored drug assistance program, there is nearly universal coverage for PrEP clinical visits, laboratory tests, and medication (Gilead Sciences, n.d.; New York State Department of Health, n.d.).

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Participants and Recruitment

We recruited participants using the clinic's PrEP Registry, a list in the electronic medical records of all patients who were prescribed emtricitabine–tenofovir for PrEP at least once. Once a patient at the clinic was prescribed emtricitabine–tenofovir for PrEP, the clinician entered their patient information into the PrEP Registry. Inclusion criteria for the study included being: (a) HIV negative (based on screening results in the electronic medical record); (b) a cisgender heterosexual woman; (c) listed in the PrEP Registry (i.e., prescribed emtricitabine–tenofovir for HIV prevention at least once at the Oval Center); (d) at least 18 years of age; and (e) proficient in English. Potential participants were contacted via mail or telephone to ascertain study eligibility.

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Procedures

From October 2016 to May 2017, we conducted semi-structured individual interviews. Most of the interviews were conducted by two interviewers (one of the study principal investigators and the study coordinator) in a private room at the clinic. Each interview lasted 45–60 minutes. The structured interviews explored the following: (a) how the participant first learned about PrEP, (b) motivations for initiating PrEP, (c) experiences accessing PrEP, and (d) experiences starting the PrEP regimen and continuing to take PrEP (if applicable). Sample questions included: How did you first find out/hear about PrEP? How did you come to arrive at the Oval Center? What concerns or worries did you have at the time that made you want to use PrEP? Did you have any concerns or worries about starting PrEP? In the clinic, what were you told about PrEP and how to take it? What has your experience been like taking PrEP? What has been easy about it? and What has been hard? The following demographic variables were also collected to identify individual characteristics of the women: age, race, ethnicity, and level of education. All participants were provided a $20 USD incentive and a roundtrip public transportation card (value $5.00 USD). Study staff obtained written informed consent from eligible study participants. The institutional review board at the Albert Einstein College of Medicine approved the study.

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Data Analysis

All interviews were audio-recorded and transcribed by a professional transcription service. Interview transcripts were imported into Dedoose® (a web-based qualitative research software program) to facilitate data management and analysis. Our study team was composed of four members, including a linguistic anthropologist, health services researcher, an Infectious Diseases physician, and a study coordinator with experience in qualitative research. Structural coding was used to identify responses to questions in the interview guide (MacQueen, McLellan, Kay, & Milstein, 1998). Following a review of a priori themes, we used thematic analyses to identify emerging, salient themes and relationships. The codebook was revised iteratively, and once finalized, a minimum of two team members coded each transcript. We used the constant comparative method (Strauss & Glaser, 1967) throughout to ensure that codes were applied consistently. Discrepancies in coding were resolved through consensus.

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Results

We contacted 47 potential participants via mail or telephone; 40 participants were eligible. Of those excluded, three were transgender women, two were sexually active with women only, and two were Spanish speaking only. Of the 40 eligible participants, 14 consented to participate. The remaining eligible participants were unable to be contacted, declined to participate, or did not want to speak with research staff. We continued to recruit participants until we achieved theoretical saturation, which was indicated when no new concepts emerged from participant interviews.

Median participant age was 40 years (interquartile range: 35–49). Most participants were either non-Latina Black (35%, n = 5) or Latina (50%, n = 7). About half of the participants had completed high school or a graduate equivalency degree (43%); about half had completed college or beyond (43%). The majority of participants learned about the Oval Center from a health care provider or community-based organization (42%) or through a friend or partner (35%). All reported having had condomless sex with at least one male partner.

We identified three distinct phases along the PrEP care continuum: (a) seeking PrEP, (b) linkage to PrEP care, and (c) initiating and continuing PrEP. In each phase, we found specific facilitators of and barriers to PrEP uptake and continuation.

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Phase 1: Seeking Pre-exposure Prophylaxis

The initial phase of the PrEP care continuum describes the process by which participants came to know about PrEP as an HIV prevention method and where to access PrEP. We found that facilitators to seeking PrEP included self-awareness of heightened risk of HIV infection and having a trusted PrEP referral source. We also found that a common barrier in this phase was misinformation or lack of information about PrEP.

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Self-awareness of heightened risk of HIV

The awareness of having a partner living with HIV or multiple sexual partners motivated most participants to consider PrEP. Of the 14 participants, 11 were in a known serodiscordant relationship at the time they sought PrEP and cited the serodiscordant relationship as the motivation for seeking PrEP. Participants often sought out PrEP as an HIV prevention strategy in addition to or in place of condoms. For example, one 39-year-old Black participant who discovered her long-term partner had become HIV-positive during their relationship shared the following:

If there were just only condoms, I don't think that I would be so open or receptive to my child's father because the condoms, as we know, are not 100%. But if I have maybe two things, two protections in place, you know (that's better).

Similarly, a 36-year-old Black woman in a long-standing serodiscordant partnership described:

I believe that [HIV is] something you can never fully protect against. I feel like by me taking PrEP, it reduced the chances. And I believe honestly if it wasn't for the PrEP I probably would be positive. Because the, you know, when you're married to someone there are times that you are not really just focused on condoms and things of that sort. So it was like a second safety net, so to speak.

For the few participants who were not in serodiscordant relationships, an understanding that inconsistent condom use and multiple partners increased the risk of acquiring HIV infection was motivation for pursuing PrEP. A 36-year-old Black woman engaged in sex work noted her awareness of HIV risk: “I do work as a sex worker. I don't do it as a heavy duty type stuff, but on occasion, I do have sex for money…That does put me at a risk.”

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Trusted pre-exposure prophylaxis referral source

Having a trusted PrEP referral source, such as a primary health care provider, partner in a relationship, or a friend living with HIV, facilitated interest in seeking PrEP. One participant who was a 49-year-old Latina noted that:

I found out (about PrEP) because I have a friend more than 33 years…We grew up together. He's HIV-positive. I told him I'm going out with a partner—he's HIV-positive. He was telling me to go to a clinic, that they have services for PrEP.

Another 47-year-old Latina woman reported that she immediately started PrEP after disclosing to her long-term gynecologist that she had recently become sexually active with a man who was living with HIV: “He said, ‘How long have you been sexually active with him?’ I said, ‘Well, it's been 2 weeks,’ and he said, ‘You should've came to me’… He, right away, put me on (PrEP).”

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Misinformation and lack of information about pre-exposure prophylaxis

Some participants reported that they had initially dismissed the idea of taking PrEP due to misconceptions portrayed in the media or an overall lack of information about what PrEP was and how it works. One participant who was a 49-year-old Latina in a long-term relationship with a newly diagnosed partner living with HIV dismissed PrEP because advertisements and other related media gave her the impression that PrEP was only for gay men:

When they first were talking about PrEP in the news, they were talking about, “Oh, there's a drug only gay men use and it's probably not a good idea for women to take it,” and that sort of thing…the way the media talked about it, that it was only for gay men. You didn't see the media talk about women taking it.

Another participant, a 39-year-old Black woman, mentioned that she had heard little about PrEP or how it worked to reduce the risk of acquiring HIV in the media or from health care providers. She noted that: “[I] was ignorant to the situation because the media don't portray PrEP. You don't go to your doctor and hear about PrEP. It's only recently, since I've been exposed to all of this.”

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Phase 2: Linkage to Pre-exposure Prophylaxis Care

The second phase of the PrEP care continuum was characterized by participants presenting to a clinical care site to obtain a PrEP prescription. Facilitators in this phase included having a positive provider interaction and clinic experience, a convenient and accessible clinic location, and having health insurance coverage.

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Positive provider interactions and clinic experience

Overall, participants reported positive interactions with the health care provider at the clinic. These positive experiences, determined by the women's perceptions that providers were knowledgeable, professional, and nonjudgmental, helped to diminish concerns prior to the visit. As one 35-year-old Black women stated:

I don't know if they were particularly supposed to serve the LGBT [lesbian, gay, bisexual, transgender] community and then it opened up to others…I figure because they serve that community, they deal with people more sensitively. It's a different dynamic.

Another 49-year-old Latina participant noted her appreciation of provider and staff levels of expertise and competence: “I felt comfortable with him cause I know that he's a well-educated doctor and he specializes in these things, so I felt okay, comfortable.” Two participants who were not in a serodiscordant partnership learned about and accepted a prescription for PrEP during a routine sexually transmitted infection screening visit because their providers effectively convinced them of their heightened risk of HIV infection. One of those women, a 35-year-old Black woman, recalled:

[The physician] asked me how concerned am I about HIV exposure. I try to keep it to one partner minimum, but at times I slip up and I don't use protection. That's a concern and the other person might not be telling the truth. I told her I was concerned and she let me know about it.

These findings suggest that the clinic environment facilitated confidence. Specifically, having a calm, quiet environment where anonymity was preserved was highly valued. One 39-year-old Latina participant described the study clinic and staff as: “…it's just so discreet, it's so peaceful. [Regarding the provider,] she's amazing and she's so professional. To me, it was like walking into a piece of heaven here on earth.” And a 36-year-old Black woman noted that she liked the clinic because:

Some places…you don't feel comfortable there, you know? I'm not being funny, you see like vagabonds hanging outside. You don't feel comfortable going in there because you're like hold on, is this a clean, legitimate place for me to be at? You don't even feel comfortable going to Planned Parenthood because hey, you don't know what's going to happen. Some anti person may come up…And that's not a good feeling.

Positive interactions with the clinic facilities and staff were a facilitator to continuing PrEP, especially having flexibility in follow-ups. For example, one 36-year-old Black participant reported:

They are so flexible with their schedules. So, if I can't come in on a certain date and it is 3 months past, I can call an appointment when I can come in and they will see me. That is great. That is such a relief. And then, I can keep taking care of myself.

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Convenient and accessible location

All the participants in this study noted that the study clinic was easily accessible, thus facilitating access to PrEP for the community. Participants also noted that the short initial wait time as well as the ease of scheduling follow-up visits and obtaining medication refills facilitated participant PrEP linkage. One participant reported that she was able to schedule an appointment within a week of initially expressing interest in taking PrEP. The clinic site is conveniently located near public transportation. Metro cards or taxi service were provided or covered by the clinic or health insurance. One individual, a 36-year-old Black woman, did miss several initial visits at the Oval Center due to difficulties accessing transportation; however, this logistical barrier was resolved through the assistance of the community-based organization that linked her to the study clinic:

[A representative from the organization] called me back, and she said, “Look, I have a new name, it's not too far from you. How about this, how about we pick you up and we get you there?” … And sure enough, here she comes in the big old Boom–that's how I got here.

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Having insurance coverage

In addition to having positive provider interactions and clinic experiences, a key facilitator in this phase was having insurance coverage. Of those who disclosed their insurance status, all had coverage with Medicaid except one participant who had Medicare. Additionally, PrEP assistance programs for clinic visits, laboratory tests, and medication were also available to patients if they qualified. Having coverage for clinic visits, laboratory tests, and medication was a significant facilitator to the uptake of PrEP. One 36-year-old Black woman expressed gratitude for health insurance coverage for PrEP, as she had previously experienced lack of coverage in other areas for essential medications: “If I had to struggle with covering my medications, forget about it. I would not be on any medications. I would probably be on some crazy street drugs.”

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Phase 3: Starting and Continuing Pre-exposure Prophylaxis

The last phase of the PrEP care continuum entails regimen initiation and continuation of use. Barriers in this phase included misinformation about PrEP from health care providers, concerns about PrEP safety, challenges at the pharmacy picking up prescriptions, and out-of-pocket health care costs.

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Misinformation from health care providers

Inaccurate information about PrEP or the lack of information about PrEP in general emerged as a key barrier to seeking PrEP. One participant, after having a condomless sexual encounter with a partner of unknown HIV status, tried to obtain a PrEP prescription from an urgent care center but was discouraged by the health care provider because of an inaccurate perception of at-risk women and a lack of understanding about PrEP safety protocols. The 35-year-old Black woman reported:

(The health care provider) was saying, “This is what gay men take. Based on what you've explained to me, you don't seem like you have much to be worried about.” Which I don't look at it that way. I know that it’s something that can affect heterosexual people. I don't think that I'm infallible because I'm straight. But her main thing was, “Well, if you're going to continue breastfeeding…I urge you not to take this.”

The participant did not receive PrEP from that provider, but instead sought out another clinic (the study clinic) to get a PrEP prescription.

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Concerns about safety

A barrier to initiating PrEP was concern about the safety of the medication. As one 39-year-old Latina participant expressed: “If this is that strong of a drug such that you can have unprotected sex with someone and not get HIV, I'm like, ‘Dang, the side effects must be through the roof’.” One 35-year-old Black participant opted not to start PrEP due to concerns about side effects. She struggled with accepting the risks of medications versus the benefits of protecting herself from HIV: “Am I doing harm to my body for no reason? Am I going to? That's another reason. It wasn't the biggest factor, but it did play a factor.” This participant believed that using condoms alone should be adequate protection from any HIV exposure.

However, despite some concerns about safety, most participants in our study found the risk of side effects acceptable once they reviewed them with a health care provider. Those who did experience side effects stated that they were brief. As a 34-year-old Latina woman noted: “They told me the first time you take the PrEP, you got diarrhea, and I got that. But now everything is okay.” Another 47-year-old Latina participant who was taking medications for bipolar disorder expressed concern about medication interactions and stated:

I was scared that they would not mix or whatever, but then when I sat down with [the physician] and she saw what, she said, “You're okay, you're fine.” So, I said, “Okay,” and went back on all my stuff.

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Pharmacy challenges

About a third of the participants experienced difficulty filling and sometimes picking up their prescriptions at the pharmacy. Some were told the medication was not available on site at the time and instructed to come back. One 49-year-old participant who was unable to fill her prescription recalls: “The pharmacist at one point, they didn't have it. They had to order it. They got the wrong ones. They had to reorder it, so it took a while from there. So it was like a month.” A 43-year-old White participant reported a 3-week delay between dropping off her prescription and when the medication was available for pick up. Additionally, this participant reported that when she finally was able to pick up the prescription, she felt singled out and subsequently stigmatized: “He gave me a packet, like a welcome packet. Like the side effects. It had like what the side effects are and stuff. Had big HIV on it. It didn't have my name on it, thank God.” Although she ultimately took the prescription home that day, this particular participant, who struggled with anxiety and depression, felt that her experience at checkout exacerbated her level of distress.

Not all participants experienced difficulties obtaining the prescription at the pharmacy. One 35-year-old Black participant received insurance navigation and filled her prescription at a local pharmacy with a working relationship to the clinic; consequently, she had minimal problems and quickly started on PrEP:

She basically asked me if I had a pharmacy, asked me if I had insurance and I told her I did have insurance. I told her who my insurance carrier was and she worked with me to find a pharmacist that could provide the medication closest to me. However, there was a little hiccup with that pharmacy and the availability of the medication, so she worked with me again to find me a pharmacy who did have my medication available. The pharmacy is fantastic.

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Out-of-pocket health care costs

Similar to its role in the prior two phases of the PrEP care continuum, having insurance coverage facilitated starting and continuing on PrEP. Although all had insurance coverage for health care visits, many had copays for the medications. For one 39-year-old Latina participant, it was surprisingly affordable:

I have Medicaid, so I think the copay was $3. I was like, “Oh my God, I can't believe it's affordable.” If you don't take it, it's like you're really doing yourself a disservice because … It's so affordable, why wouldn't you?

However, several participants reported that out-of-pocket costs for the medication were prohibitive. Even a few dollars was a deterrent for some, such as for this 43-year-old White woman:

It was hard to get the PrEP because I actually [just] got the prescription 3 weeks ago, and it just became available to me yesterday. Then there was a copayment of $3. Just getting the medication and having to pay for it. That was the downfall of it. Three dollars is not a lot, but I wasn't expecting to pay anything.

One 49-year-old Latina woman had significant copay costs: “I went to get the prescription, they were asking $368. I can't afford that. My copay is usually like $30, $35, and with the PrEP…they were saying the insurance doesn't cover.” Ultimately, she was only able to start PrEP using a pharmaceutical-sponsored drug assistance program many months after her initial visit.

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Pre-exposure prophylaxis rumination

All participants described an ongoing consideration of the pros and cons of taking PrEP that traversed all three phases of the PrEP care continuum. We characterized this cognitive process as “PrEP rumination”—a thoughtful deliberation about PrEP over time that inadvertently delays or prevents the uptake of PrEP. Some participants engaged in this process when deciding whether to seek PrEP, weighing the risks of PrEP versus contracting HIV. A 43-year-old White woman who was sexually active with multiple partners waited 4 months before filling her prescription: “You never want to think that you're going to get HIV…I wasn't ready to think about, well, if I get HIV, I don't want it. Like that's for somebody else.”

PrEP rumination was more active while contemplating safety concerns or hearing misinformation from providers, both for women in serodiscordant relationships as well as those with multiple sexual partners of unknown status. For several women, concerns about side effects delayed initiating PrEP. To minimize potential adverse side effects, one 39-year-old Black woman decided not to take PrEP when she was not having penetrative sex with her partner who was living with HIV: “I asked the doctor…what are the complications? They said it can mess with your organs and other stuff. So I wasn't taking it as much…Why should I mess up my organs?” Similarly, another 35-year-old Black woman struggled to weigh the benefits of using PrEP versus the potentially harmful side effects:

Do I really need to take it? It's a heavy hitter on the organs so I've got to go through all this testing, maybe I don't really need it. Then, my test came back negative, I was like, okay, maybe I don't need it.

For some, PrEP rumination emerged because of delays at the pharmacy or misinformation about the cost of medications; during these gaps in care some women heavily considered or reconsidered the benefits of PrEP. For a 35-year-old Black woman sexually active with a partner of unknown status, the pharmacy delay ultimately led her to decline PrEP:

Rite Aid Pharmacy…they almost never have your things ready for you that day. I thought about it and thought about it. Once they said we got the prescription but we didn't fill it, I just never went back for it…Because I was thinking about it and I was saying, “Well, if it can affect my organs, maybe I shouldn't.” I kept saying to myself I'm just going to be more careful moving forward, so I'm not going to take it.

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Discussion

PrEP uptake among minority women at risk for HIV infection is an understudied area of research. Our study contributes important findings about facilitators of and barriers to PrEP uptake among actual women prescribed and using PrEP as opposed to potential PrEP users. Using a three-phase PrEP care continuum (motivations and pathway to PrEP, linkage to PrEP care, and initiation and continuation of PrEP), we identified key facilitators and barriers. Facilitators that motivated participants to seek PrEP included having a known and identifiable HIV risk factor such as a sexual partner living with HIV, learning about PrEP through reliable sources such as friends with HIV or friends on PrEP, or trusted health care professionals. Facilitators for linkage to PrEP care as well as PrEP initiation and continuation included positive interactions with informed and culturally competent clinical staff, access to a discreet and convenient clinic, and insurance coverage. Barriers included misinformation and lack of information about PrEP, concerns about PrEP safety, and insurance and pharmacy difficulties. Our study findings were consistent with other studies in finding that among potential PrEP users, concerns about out-of-pocket costs of PrEP and its safety were enormous barriers to PrEP uptake (Auerbach, Kinsky, Brown, & Charles, 2015; Bond & Gunn, 2016; Flash et al., 2014; Goparaju et al., 2017) and that having an identifiable HIV risk factor was an important facilitator in motivating women to seek PrEP (Lambert, Marrazzo, Amico, Mugavero, & Elopre, 2018; Wingood et al., 2013).

The confluence of barriers led to ongoing deliberation about the possible benefits and risks of PrEP among our participants, which we described as PrEP rumination. The concept of PrEP rumination emerged as a key and novel finding that intersected with PrEP facilitators and barriers identified in our study. When women encountered misinformation about PrEP or had concerns about copayments for the medication or the safety of PrEP, this prompted an internal process of heavily weighing potentially negative aspects of engaging with PrEP with potential benefits. In some cases, internal deliberation resulted in the decision not to initiate PrEP. Delay in linkage to PrEP care, whether it was with obtaining an appointment or in filling a PrEP prescription, also provided an opportunity for women to reconsider the risks or benefits of PrEP.

These findings suggest the urgent need to focus future initiatives on increasing PrEP uptake and use among minority women. First, minimizing informational and structural barriers to PrEP is critical to engaging women in PrEP care as compared with other groups. Our findings suggest that it may be important to continually engage in conversations about PrEP using trusted resources such as community health care providers, patient navigators, and peer educators. Conversations with trusted and knowledgeable providers and clinic staff could be a more effective way to address concerns related to PrEP safety and guide clients through potentially challenging logistics such as insurance and pharmacy-related issues in filling or picking up PrEP medication. Second, helping women to accurately identify community- or individual-level risks, such as a higher prevalence of HIV in some communities, having a partner living with HIV, or being involved in sex work, has been shown to be a critically important facilitator for PrEP uptake (Blackstock et al., 2015). Providers should know that women may not perceive themselves to be at higher risk for HIV infection based on traditional risk factors alone. It may also be beneficial to consider discussing PrEP in the context of overall sexual health and wellbeing with concise and direct sex-positive and nonjudgmental messaging (Collier et al., 2017). Third, the importance of culturally competent health care providers as well as convenient and accessible health care settings cannot be underestimated, particularly with respect to engaging minority women at risk. These factors were persistent facilitators to linking and engaging women in PrEP in our study.

Our study had several limitations. First, we used a convenience sample due to challenges in recruiting participants. We suspect HIV-related stigma continues to affect women's willingness to discuss their reasons for taking PrEP. Despite the limitation of our sampling strategy, we provide insights on the experiences of women who have been prescribed and using PrEP. Second, we recruited women from one clinical site, which was a designated PrEP center with focused efforts on PrEP delivery. As such, our findings may not be generalizable to other clinics that do not have PrEP delivery infrastructure in place. Third, we also focused only on women with sexual exposure and therefore may not have captured other risk factors, such as injection drug use. Finally, the interviews were conducted with participants fluent in English, thus excluding Spanish speakers who may have specific linguistic or cultural barriers to and facilitators of PrEP uptake.

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Conclusion

Pre-exposure prophylaxis continues to be underutilized by minority women at risk for HIV infection. Identifying barriers to and facilitators of PrEP uptake among women prescribed and using PrEP, such as the novel cognitive phenomenon of PrEP rumination, may be helpful when considering how to optimize PrEP delivery to high-risk women in need of PrEP. Our findings may help to inform the development of future interventions focused on promoting PrEP uptake among minority women in urban settings.

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Key Considerations

  • To increase PrEP uptake, among women particularly, it may be important to continually engage women in conversations about PrEP using trusted resources, such as community health care providers, patient navigators, and peer educators.
  • Highlighting community- and/or individual-level HIV risk and discussing PrEP in the context of overall sexual health and wellbeing with sex-positive, nonjudgmental messaging are potential strategies to increase PrEP uptake among women.
  • Culturally competent health care providers as well as convenient and accessible health care settings may help to enhance opportunities for engaging women at high risk for HIV in PrEP care.
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Disclosures

The authors report no real or perceived vested interests related to this article that could be construed as a conflict of interests.

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Acknowledgments

O. J. Blackstock was supported by funding from the National Institute of Mental Health under grant K23MH102129 (PI: O. J. Blackstock). The authors would like to thank the study participants, community stakeholders, and staff from the study site.

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References

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Keywords:

HIV; pre-exposure prophylaxis; prevention; women

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