Table 3.
Barriers to PrEP initiation and persistence
Broad factors | Themes | Participant quotes |
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Structural factors | Cost (being told PrEP was free and then having to pay a fee) | “They told me PrEP would be free, and so I said, “Okay.” Once I got to the pharmacy, I had to pay for it. It was, like, $50. Having to pay for it was an issue for me.” – [23-year-old, currently not taking PrEP] |
Lack of discreet clinics | “The stigma cause we have an HIV clinic in the same location.”—[Nurse] “I think telehealth would be the best, because you don't have to worry about people who sees them comin' to a certain clinic, and, it could be more discrete if it's offered.” – [Nurse Practitioner] |
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Time commitment (for medical appointments and picking up medication) | “Honestly, just, like, time. Time to go to the pharmacy to pick it up, time to go to the checkup, time to you know, anything. I just don't have time to do it, so I kinda just said, "Well, let me just stop having so much sex and stop having sex without condoms.”—[26-year-old, currently not taking PrEP] |
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Competing Interests / Not Wanting to Take a Daily Medication | “I think it’s mostly because it’s something you have to take daily. And most men don’t want that responsibility.”—[34-year-old, currently taking PrEP] “Some people feel like their everyday lives are too busy to have to remember to take a pill.” – [PrEP Navigator] |
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Social factors | Not Knowing Anyone Taking PrEP (Needing to “mentally prepare”) | “I didn’t really know anyone on PrEP. I had friends who were HIV positive. Even though I know some of the same medications are used, I still think it’s probably different.”—[24-year-old, currently not taking PrEP] “They're thinking about PrEP, and they'll get back with me at a later date.”- [PrEP Navigator] |
Unaware of HIV Risk | “From the people that I have been workin' with, especially those newly diagnosed, I don't think they were really worried about it prior because they are shocked. I don't think they realized the risk and how rampant the cases are in this area.” – [Licensed Master Social Worker] “A lot of it is the ones with the “I don’t need it because I’m in a relationship and so I don’t have to be on it.”—[Nurse] |
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HIV Stigma and Homophobia (assumption of promiscuity, not wanting to be labeled gay, fear people think they are living with HIV) | “I think it's just not wanting to be labeled as gay or as someone who has sex with men.”—[26-year-old, currently not taking PrEP] “I think they relate PrEP to HIV. And, sometimes, no matter how much you tell’em that it actually prevents HIV, they’re like, ‘Ah, no. People will think I got it.’”- [Nurse] “They think that you're sexual promiscuous. I think that's where the message needs to be. It only takes one time to get HIV.”—[Licensed Master Social Worker] |
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Fear Partners Will Find Out They Take PrEP | “They don’t want their partners to know that they’re takin’ PrEP. They don’t want their partners to believe they out there cheatin’ and that’s why they taking PrEP every day.”— [Nurse] “Because I’m married, and I don’t want my husband to think that I’m out there doin’ something.” – [Nurse] |
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Behavioral factors | Sexual Risk Behaviors (only one sex partner) | “I've been in a relationship with my fiancé for nine years now. I just didn't feel the need for it to be for me because I know what my partner is doing, and he knows what I'm doing.”— [26-year-old, currently not taking PrEP] “I’m seeing only one person, and we are monogamous as well as that person goes and gets regular checkups and things of that nature. I’m not really too concerned about it.—[24-year-old, currently not taking PrEP] |
Denial (“it won’t happen to me”) | “I think some people, especially in their thirties, just think that ‘If I haven’t gotten it yet, I’m probably not gonna get it’ or ‘That can’t happen to me.’”—[34-year-old, currently not taking PrEP] “Most people, I guess, aren't so conscious of how bad HIV is. When it comes to STDs or HIV, people feel like, "Oh, it's not gonna happen to me, so I don't feel like I need to take that." And it just really all comes back to being self-conscious about your health.”—[26-year-old, currently not taking PrEP] “I think a lot of them are still in the mindset of, "It won't happen to me. "Even though they don't always use condoms and they can come back with Chlamydia or Gonorrhea, or Syphilis. I think it's more so the denial.”—[Nurse Practitioner] |
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Less Priority for Prevention VS. Treatment | “Even though it can prevent something, they don't see the benefit of it because it's not actually treating somethin'.”—[Nurse Practitioner] “One of my best friends, we talked about it, and I was like, "You know you got to do what you got to do." Sometimes, we do get wrapped up and caught up in the social life and just havin' a good time, and we're not thinkin'. One time can change your life.”—[32-year-old, currently taking PrEP] “Comin' in when they're technically not sick. That's a challenge.”—[Nurse Practitioner] |
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Clinical factors | Misunderstood Side Effects (Fear of dependency) | “When I took PrEP, it kinda freaked me out when I started breaking out in hives, so I stopped takin' it for a while. And I just recently got on Descovy.”—[24-year-old, currently taking PrEP] “I know one guy who told me, ‘No. I’m not trying to be poisoned.’” – [Nurse] “I just don't wanna be dependent on medication if that's a better way of saying it. Minor headaches and things of that nature, I try to wait them out.”—[32-year-old, currently taking PrEP] |
Fear PrEP Won’t/Work | “I'm paralyzed with the fear. "I don't know if this really works," What if this is just somethin' else? I don't know. What if it really doesn't work? I'm a person where I am gonna try to form my own opinion of it. But stuff like that definitely weighs on people's head – [29-year-old, currently not taking PrEP] “A lot of them I have talked with believe you could end up catching HIV if you take PrEP”.—[Nurse] |