A PDF version of this entry is available for viewing and download here.
Pre-exposure prophylaxis (PrEP) is a once-daily prescription medicine, approved by the US Food and Drug Administration (FDA) since 2012, that can help HIV-negative individuals reduce the risk of getting HIV-1 when it is taken every day and used together with safer sex practices.
PrEP is endorsed by the US Centers for Disease Control and Prevention (CDC) as a science-driven public health approach to what remains a major health crisis in the United States. Used along with other preventive strategies, PrEP has the potential to help individuals at risk for HIV infection to protect themselves and, ultimately, to reduce HIV incidence. However, implementation of PrEP has been relatively slow to date and faces numerous and multifactorial barriers, as detailed below.
This piece is based on qualitative interviews of 15 patients conducted via teleconference between July 18 to July 28, 2017. A discussion guide, reviewed by program faculty members, featured open-ended questions that aimed to explore the subjective experiences and perspectives of patients regarding HIV PrEP and to elicit actionable data to improve patient-healthcare provider communications on this and related HIV prevention topics.
Future needs assessment entries will detail findings of quantitative surveys and additional qualitative interviews of both clinicians and patients.
This needs assessment is part of a larger initiative called Let’s Get Real About PrEP provided under the auspices of Albert Einstein College of Medicine and NovaMed Education, Inc. with program contribution from HealthHIV. This program is supported by an educational grant from Gilead Sciences.
Dr. Bisola Ojikutu of Harvard Medical School and Dr. David Hardy of Whitman-Walker Health provided technical development advice and review of the discussion guide prior to the interviews.
- Restricted access to PrEP due to cost, volatility in the insurance marketplace, the political climate, and prescriber pushback dominate participants’ concerns.
- Primary care providers unfamiliar with the LGBTQ community generally lack the knowledge, interest, and/or confidence to discuss PrEP or sexual health.
- Stigmatization of HIV and PrEP continue, particularly among groups not traditionally considered high-risk, such as heterosexuals, women, and youth.
Sample & Recruitment
A subset of 15 respondents to an online quantitative survey were recruited to participate in guided, semi-structured interviews conducted via teleconference either one-on-one or in small groups. With their permission, interviews were recorded and transcribed. Participants were recruited from a population of potential or current PrEP users that included men who have sex with men (MSM), transgender women, and women who have sex with men. Participants were also recruited via e-mails from the Washington, DC-based nonprofit organization HealthHIV to their mailing lists and posts to their social media followers.
Whether they were from Florida, California, Texas, New York, Georgia, Maryland, or Washington State, all participants were deeply immersed and active in their local LGBTQ communities. Two reported living with HIV and all said they knew people living with HIV. Eight reported taking PrEP and all said they had friends or acquaintances who were taking PrEP—from two or three to dozens.
One participant, describing the Washington, D.C. metropolitan area gay community said, “it’s the exception rather than the rule to find someone who isn’t on PrEP.” Participants were keen to clarify that PrEP awareness was virtually non-existent outside LGBTQ groups, and that concerned them.
When asked how they first learned about PrEP, most reported doing their own research after hearing about it in the media or on billboards, and/or from peers in online or in-person social networks. Three reported learning about PrEP from their healthcare provider.
“I honestly can’t remember the first time I saw it, just something I noticed. It was probably an ad campaign, or maybe someone mentioned it. But it was definitely not a doctor; it was just me having seen something and getting more information on my own.”
HIV Transmission Risk
Participants were asked to rank, from 1 (lowest) to 10 (highest), the risk levels for HIV transmission of behaviors described in three scenarios [Appendix A]. Rankings were similar for all three scenarios, with intravenous drug use/sharing needles being perceived as the highest risk (Scenario 2), inconsistent use of condoms as medium risk (Scenario 1), and monogamous (if trusted) sex as lowest risk (Scenario 3). Further discussion of the rationales behind their rankings revealed a unanimous agreement that IV drug use with dirty needles poses the highest risk because in addition to potential exposure, it diminishes the user’s ability to control their situation.
Participants qualified their ranking of monogamous sex as least risky, adding that it is impossible to be sure that someone who says they are HIV-negative actually is. They noted that some may lie about it while others are unaware of their status. A sampling of quotes illustrates this:
“I don’t trust reporting HIV negative, because that’s the majority of people running around with high viral loads is: Oh, I think I’m negative.”
“…a lot of people don’t necessarily know their status or with the stigma attached to HIV, some people are just ashamed of their status and lie. It’s not a pretty fact, but it does happen.”
“You can never be too careful because…who’s to say someone’s not gonna step outside [the monogamous relationship] and then you continue to have unprotected sex with them without knowing they’ve been exposed to someone else.”
“You can’t always assume that a monogamous relationship will always be respected.”
Participants saw PrEP as a leading method of lowering the risk of HIV transmission. About half cited concerns about contracting STIs as the main reason for using condoms in addition to PrEP:
“Use condoms, use protection, is a big one. Be open to asking your partners about their status. Going on PrEP is also huge, that’s one of the main reasons why I went on it because I feel protected now with it.”
“I would say [my opinion of PrEP] is overall positive. I’ve been on it for like four years. I agree with the freedom piece, however, for me, it’s freedom from HIV infection but it’s actually opened up a lot of other STIs I probably wouldn’t have gotten if I used condoms.”
“I’m not just thinking about HIV risk, I’m also thinking about STI risk.”
The main barriers the participants cited for other individuals not trying to reduce their risk for contracting or transmitting HIV included carelessness, stigma, and lack of education:
“Some people think HIV’s a thing of the past. There’s lack of information all around, around the risk involved with HIV and the preventative things you can do to not get HIV.”
“There’s shame, because sex is a ‘dirty thing’ and so buying condoms is, you know, I’m going to use them. I’m going to have sex. I should be so ashamed of this. There’s lack of knowledge.”
“People will have sex with random people off social networks or dating apps and when you ask, ‘Well, why didn’t you use protection?’ they say: Well, it didn’t look like they had anything. They looked like they were clean.”
PrEP Knowledge, Attitudes, and Beliefs
All participants were familiar with PrEP and knew that it is indicated for HIV-negative individuals, that it is taken daily, and that the potential for renal toxicity necessitates quarterly labs. None knew the two ingredients of PrEP; however, one knew the brand name, one knew the generic name of one of its two ingredients, and one knew it was a combination of two compounds (“it’s 30% 70% something, something”). Almost all knew that it was virtually 100% effective at preventing HIV transmission and characterized the known side effects—such as nausea, vertigo, and headache—as mild and transient, generally lasting one or two days. All believed it to be safe for those without kidney problems. Although they were familiar with some of the negative phrases used to describe PrEP and those who take it, most of the language describing it was positive or neutral (Table 1).
“Safety, I mean it’s my first solution to not getting HIV. I thought it was something I was destined to eventually get. So it’s given me freedom and a sense of security.”
“I think of it as exciting and freeing.”
“Now that there are so many people who take it, and there have been so many studies, I just believe in the science.”
When asked if they or someone they knew would think differently of someone if they found out they were using PrEP, the group was unanimous in their disregard for other people’s opinions in making their decision. In general, they reported stigma—from both inside and outside the LGBTQ community—as unpleasant, and sometimes, but not always, a barrier to initiating PrEP:
“I was actually surprised how negative people were after I started taking it.”
“I still definitely think there’s a stigma out there, or PrEP shaming, as some people call it. But I think that’s just because they’re just not informed, and not really educated about it.”
“Some people say that PrEP is a crutch for those who have risky behavior. Things like that kind of hold people back."
“Back when I was an early adopter and PrEP warrior, I was telling everybody and I got shaming from HIV-negative people who weren’t interested in PrEP saying, ‘Oh, you’re just a whore.’ Literally, people said this to me. HIV-positive people looked at me like I was…flaunting my HIV-negative status and somehow making them feel worse about being positive.”
“Oh my god, [some people are] comparing an HIV prevention medicine to people wanting to use recreational drugs. One has nothing to do with the other, but you’re considering both to be equally negative.”
Most participants worried that some populations are being left out of the PrEP discussion, particularly heterosexual women and youth, whom they believe should be targeted for education and outreach initiatives. Also unanimous was the concern over access restrictions—now and in the future—caused by instability in the insurance marketplace, national economic and political volatility, and geographic, racial, and socioeconomic disparities.
“The peace of mind is worth a lot for me, but I also have excellent insurance. When I hear people are paying six, seven, eight hundred dollars in co-pays a month, I really feel for them. I wouldn’t want to be in that situation. Thankfully, I’m not.”
“It’s almost like it’s the 1980s all over again. In small-town communities in the South, especially the African-American communities, it’s just a dire situation.”
“In New York, LA, San Francisco, you can get [PrEP] for free if you meet the criteria. Personal responsibility doesn’t work because someone making $8 an hour is never going to get PrEP.”
“I’m lucky to have [PrEP], to be able to pay for it, but if I got into trouble financially, it would go before I would not eat. It’s not a hassle for me. If it becomes a hassle, I’ll have to rethink it.”
Table 1. In their own words, participants’ characterizations of PrEP
Healthcare Provider Relationship
A participant taking PrEP whose PrEP provider was an infectious disease specialist, and another who splits his care between a primary care doctor and a PrEP clinic, both reported being satisfied with the relationship they have with their doctors. When asked if they trust their doctors’ advice and whether they had up-to-date information, both did. Some others were generally satisfied with their providers and trusted them. The rest of the group reported less favorable relations with most saying that, if the topics came up at all, they did not feel comfortable discussing sexual health in general, or HIV prevention in particular, with their primary care providers.
“Different medical professionals or physicians, they’re just not on that wavelength. I think they’re trying to get you in and out.”
“I have several friends that I don’t think have ever had an STI screen because their general practitioners aren’t giving them and they’re not looking for problems, so they’re not asking.”
A female participant said that, in her experience, primary care physicians do not typically ask about patients’ sexual history or discuss HIV testing, instead, they ask routine questions such as ‘when was the last time you had sex?’
“It was more being concerned with maternal health, just making sure you’re able to bear a child. It wasn’t to ask if you’re protecting yourself or even knowledgeable about preventative measures.”
Comments reveal a mixed bag of perspectives about the quality and quantity of participants’ specific communications about PrEP with their healthcare providers. Some were completely satisfied; others improved their relationships by initiating the discussions they wanted to have. There was consensus that ignorance and cultural incompetence within the medical community still exists, and personal experiences demonstrate that:
“My doctor actually said, ‘Oh we don’t even need to test you for HIV [because you’re on PrEP now].’ I said, ‘You absolutely have to keep testing because if I did become positive then I could have a mutation… I’m thinking: Why am I the smartest person in the room?”
“When I was ready [for PrEP], my doctor had changed [and said], ‘Absolutely not. If you want that, you have to go to infectious disease.’ Then he acquiesced three months later once he’d educated himself and several other patients asked for it.”
“My primary care physician did not know what [PrEP] was. She didn’t feel comfortable prescribing it to me. She wanted to send me to an infectious disease specialist so I found a new primary care physician. It was the straw that broke the camel’s back.”
“I had to educate [my healthcare provider]. He was really ignorant…totally unprofessional. He would say that I shouldn’t have sex, just ridiculous. He ended up leaving the practice.”
Some participants described similar experiences facing clinicians and office staff who were insensitive at best, and cruel, at worst—rendering their patients embarrassed and unwilling to talk about their concerns. Their chief complaint was the apparent unwillingness of some healthcare providers to acknowledge their own biases, learn about PrEP, or understand the needs and culture of their PrEP-eligible patients.
“There are many providers who have done a lot of harm with people who’ve gone in seeking PrEP, a lot of slut-shaming…and people have left the office feeling a lot worse about themselves and their behavior. Doctors have conversations about changing behavior instead of taking responsibility and action for their sexual health. And that’s unfortunate.”
Regimen Adherence: Common Factors
As discussed previously, the most troubling concern about PrEP for all but two participants were the direct and indirect costs associated with the regimen. In one group interview, participants agreed that for underserved populations and those living in poverty, a major barrier to adherence is transportation: getting to and from doctor’s appointments, picking up prescriptions, and going for lab tests require funds for public transportation when a personal vehicle is not an option.
Almost all participants had PrEP and its associated screening tests covered by insurance. Some used the Gilead co-pay assistance program to make up the difference when their own prescription drug coverage came up short. Others developed “workarounds” to get full coverage, using their own insurance for PrEP labs and going to local clinics or public health departments for STI screening. Another strategy mentioned was reporting an (fictitious) exposure to bypass the preventive diagnostics benefit altogether. Interestingly, quarterly screening was seen as both a boon and a bane by many participants. On one hand, it adds to the cost, on the other hand,
“[It’s] a great way of taking responsibility and in particular, every three months visits as a great way to keep up on healthcare.”
Most participants said they were not concerned about short-term side effects and didn’t know anyone who was. Those taking PrEP reported either no symptoms or had experienced some that were transient. Those not on PrEP didn’t know anyone who had any problems at all. Many, however, did mention their uncertainty over the impact of PrEP on their long-term health, notwithstanding their compliance with quarterly checks for renal function.
“…right now my concern about my long-term side effects is less than my concern about contracting HIV, but what are we all going to be like 20 years down the road when we’ve taken these drugs for five-plus years?”
Taking a daily pill was not considered by these particularly engaged patients to be a barrier to getting on and staying on PrEP, although one participant warned that PrEP is like any other daily medication in that people forget to take it or don’t understand the way it works. He explained that he knows people who don’t understand that it has to be taken every day, believing instead that it is to be taken just before having sex.
“There [should be] conversations and support around adherence, because if you go to anybody’s medicine cabinet, how many medications or unfinished prescriptions would you find?”
“If you’re [conscientious] enough to have that [PrEP] conversation in the first place, surely you can remember. A lot of people are already accustomed to taking vitamins or other medications every day. So, they’re just adding one more.”
Conclusions & Discussion
Participants’ descriptions of their own and others’ experiences reveal a significant disparity in access to PrEP between those who are educated, informed, and financially stable—and those who are not. Even with those advantages, they made clear, access to PrEP education and treatment is limited, and its future is uncertain for vulnerable groups, given the current political and economic landscape, and the enduring stigma associated with both taking it and not taking it.
Healthcare practices and providers in and/or familiar with the LGBTQ community are more comfortable addressing HIV prevention as part of routine care. They are better equipped to help their patients through the process of initiating and sustaining the PrEP protocol by navigating the insurance/pharmacy maze, monitoring adherence, and connecting them to online and community support resources. Most important, these practices and providers avoid the stereotyping and judgement that often alienate those interested in taking responsibility for their own wellbeing.
The insights from these interviews suggest that, with the exception of restricted access due to cost, many of the identified barriers may be eliminated by focusing educational interventions and cultural competency training on primary healthcare providers who are unfamiliar and/or uncomfortable with discussing HIV prevention in general, and PrEP specifically (Table 2).
Participants mentioned several popular online social networks and resources that are commonly used as forums for both formal and informal/personal HIV information. Healthcare providers, educators, and advocates may consider taking advantage of the unique opportunity to learn about and reach individuals interested in PrEP but not yet connected to reliable sources of information or advice
Table 2. Eliminating barriers to HIV prevention discussions in primary care
Takeaways for Healthcare Providers
1. Improve cultural competence by understanding population needs and community/geographic disparities in access related to education level and socioeconomic status or insurance coverage.
2. Update knowledge of current and emerging HIV prevention methods, including PrEP, and initiate discussion of associated risks, benefits, and effectiveness.
3. Include discussion of sexual health as a part of routine care.
4. Minimize referrals to infectious disease specialists.
5. Maintain a non-judgmental posture to facilitate patients’ comfort and candor.
6. Help patients navigate insurance/pharmacy/co-pay assistance maze.
7. Use published HIV risk assessment survey tools to initiate discussion of transmission risk.
8. Prioritize adherence to treatment regimen as is done with other medications.
9. Expand concept of at-risk individuals to include groups often left out such as heterosexuals, women, and youth.
10. Augment office visits with take-home materials from research and advocacy groups such the CDC and Prevention Access Campaign and distribute lists of helpful online resources and relevant social media networks.
HIV Transmission Risk Assessment Scenarios
1. Martin is a 19-year-old cisgender man who has sex with men and is not in a monogamous relationship. He wears condoms most of the time when bottoming, and infrequently when topping. He usually asks his partners whether they’re HIV positive.
2. Celia is a 45-year-old trans woman who injects heroin and sometimes exchanges oral or vaginal sex with her dealer for drugs. She usually uses her own works, but occasionally will share with someone she knows well.
3. Nick is a 55-year old cisgender man. He’s 4 months into a monogamous relationship with a man who reports that he’s HIV negative. They stopped using condoms after they’d been dating for 6 weeks.
Copyright Albert Einstein College of Medicine and NovaMed Education Inc. 2017.