American gay men who have chosen to take pre-exposure prophylaxis (PrEP) are aware of their own risk of being exposed to HIV and see PrEP as providing 'an extra layer of protection' on top of their efforts to use condoms, some or all of the time. The use of PrEP can help reduce anxiety and provide greater 'peace of mind', men reported in in-depth interviews.
The study also sheds light on the motivations of men who stopped taking PrEP or who chose not to take it at all. Most frequently this was because their sexual relationships or behaviour had changed, but concern about potential side-effects also deterred a number of men.
The findings were presented to the 9th International Conference on HIV Treatment and Prevention Adherence in Miami earlier this week. Hailey Gilmore and colleagues interviewed 87 American men who have sex with men who were enrolled in iPrEx OLE – a programme which offered men who had participated in a clinical trial of PrEP the possibility to take, or continue to take, PrEP after the randomised study had ended. Whereas the effectiveness of PrEP had previously been unknown, by this stage men had learnt that it could help prevent HIV infection.
Around seven-in-ten participants chose to take PrEP. Those who did so generally saw themselves as being at risk of acquiring HIV, whereas staying HIV negative was very important to them. One man mentioned that a lot of his friends and sexual partners were HIV-positive and described himself as having a “higher exposure rate” than other people. Another man talked about having sex without condoms:
“It’s not something I do all the time, but it happens, it has happened, you know. It’s happened in various points of my life, when I’ve been down or something like that. That said, you know for me risky sex is... you know, you hook up and people want to have sex without condoms, it’s just what happens today. This is a reality. And sometimes that person is me, and sometimes it’s the other person.”
When describing PrEP, interviewees made analogies with safety devices such as seat belts or parachutes. They said PrEP provided an extra layer of protection, especially in the event of condoms not being used or not working properly.
“We all have our slips sometimes where we’re, like, engaged in sex and stuff like that and either we’re intoxicated or we just feel a certain way about a person, you know, we really don’t take, you know, the safest route all the time. But I make sure I take my pill, like, everyday or especially the times where I go out and have sex, whether I'm protected or not. So, because all the time... I’m not protected all the time.. I guess that makes me feel comfortable in a way...so that helps.”
“In the end where you wake up, F*** what did I do? It’s not as bad, it’s not; you don’t have this guilt-ridden thing. You’re not sweating for two weeks before you get a test at Magnet. You can breathe a little easier knowing all right; it’s not quite as bad.”
PrEP made some situations easier:
“After he disclosed his status to me that was almost like the big hurdle for me. I was trying to figure out like how exactly can I get around it?... How exactly could I get around to having sex with him and being confident and okay and comfortable? And then I realised an opportunity like this, you know, how PrEP is like, 'Ah, here is the opportunity to do so'.”
Some men found that PrEP had 'fringe benefits' that they weren’t expecting. For example, one said that the routine of daily pill taking had given him stability in other aspects of his life too.
Turning to those men who stopped taking PrEP or who never took it, this was most frequently because the individual’s relationships and sexual behaviour had evolved.
“Well, so my circumstances have changed a little since when I first entered the study, the first half of it. I’ve been living with the same guy for two and a half years now and we’re both negative. And there’s no sex outside of the house... and it just doesn’t seem worthwhile to take the active drug.”
However, some men were also concerned about PrEP having side-effects:
“If it’s bad for my liver, I don’t wanna take that stuff. I think that’s the answer. If it’s, if there’s any side effects, especially, I mean, I’m healthy right now...I feel really good and I am healthy and so I don’t, I don’t want to take something that’s gonna give me side effects.”
The researchers noted that this most frequently reflected a fear of side-effects than actual experience of them. They recommend greater dissemination of accurate information about the safety of PrEP. Moreover, during audience discussion, Jim Pickett of the AIDS Foundation of Chicago urged health agencies to reflect the interview themes in the information they provide about PrEP. He said it should be described in positive terms – as a thoughtful, smart and healthy choice. Messages about ‘peace of mind’ are more likely to be appealing than a focus on risky behaviours and partners, he suggested.
Gilmore H et al. To Take or Not to Take PrEP: Perspectives from Participants Enrolled in the iPrEx Open Label Extension (OLE) in the United States. 9th International Conference on HIV Treatment and Prevention Adherence, Miami, abstract 440, June 2014.