PrEP, or Pre-Exposure Prophylaxis, is an anti-HIV medication used to keep HIV negative people from becoming infected. It has been shown to be safe and effective at preventing HIV infection when taken as prescribed. Patients taking PrEP must take it every day for it to be effective and agree to follow-up testing every 3 months. PrEP was approved by the FDA in 2012 and has exploded onto the gay dating scene and hook up culture. Some call PrEP a miracle drug because it provides an unprecedented level of HIV protection, especially for those who are HIV negative and single, non-monogamous, or in serodiscordant (one partner HIV-positive, one negative) relationships. For a community of people who were drastically impacted by the AIDS crisis, few people would disagree that PrEP is a miracle. That said, PrEP has completely changed the landscape of gay dating and hook up culture. Since I find few discussions of these alternative impacts of PrEP, I thought I would check in with some followers (both users and non-users) for their opinions.
- Do you now or haven you ever taken PrEP? If so, how long have you (or did you) use it?
I personally have not taken PrEP before. –Respondent 1
I’ve taken PrEP for almost two years now. – @allenstarby
I began taking PrEP late September/early October of 2017. I currently still have an active Truvada prescription. – @celestialflute
- If you take PrEP, what makes it a good thing for your lifestyle? If you do not take PrEP, why do you feel it is not right for you?
I think there are two reasons I never used PrEP. The first being I was uncomfortable being out to my healthcare provider. The second is because by the time I learned about PrEP I wasn’t that sexually active and didn’t see it as a necessity. – Respondent 1
It’s an added layer of safety and makes me feel more confident in my dating/sexual choices. -@allenstarby
I’d suffered for years with anxiety about contracting HIV. After sexual encounters, it wasn’t uncommon for me to have panic attacks and drop everything to visit Planned Parenthood for a test. Condoms and being choosy with partners were my methods for safer sex, but I clearly still felt vulnerable. A friend on PrEP convinced me to look into it, and I made an appointment with an LGBTQ-affirming primary care doctor. After going on PrEP, my anxiety around sex plummeted – it truly changed my life and helped me feel good that I was taking care of my body. There are so many scary statistics out there about HIV rates in the LGBTQ community. I wanted to actively join the fight against HIV. – @ryanscollins1
PrEP is great for my lifestyle, simply because it adds an extra layer of protection. PrEP does not change my values about intercourse or romance, for that matter. I believe the pill is a medical gift that should be utilized by everyone looking to take measures for a healthier life. – @celestialflute
- Do you feel pressured to have unprotected sex because of PrEP?
I don’t, because I know that there are risks of other diseases. – Respondent 1
Yes. I remember when I first started taking PrEP the coordinator at the LGBT center recited his spiel about the benefits and risks. Then started sounding a little bit like a salesman, saying things – in his monotone “risk and benefits” voice, mind you – that condoms are boner killers, uncomfortable, and take the fun out of sex. I remember thinking that was weird. PrEP was still relatively new so I think he had to sell it more to some people, but it still didn’t give off the healthiest message in my opinion. I’m happy to say that I’ve gone back to that center and they’ve never said anything of that sort to me. So perhaps it was just a fluke. -@allenstarby
A few times in the past, people didn’t quite seem to understand why I was unwilling to go bare even while taking PrEP. Let me be clear: PrEP does not prevent any other STIs! PrEP became just another weapon in my arsenal – not the only one. – @ryanscollins1
Most certainly! Many men have assumed that because I am on the pill, I become this sort of jungle gym for them to experiment with. It does not matter whether they are on PrEP or not, they no longer find me as “risky” for carrying out their unsafe fantasies. Or…to take it further, some assume that I am a slut because I am on PrEP and that I would be willing to carry out their unsafe fantasies. – @celestialflute
- Do you think gay men have misconceptions about what PrEP protects and does not protect against (i.e. other STI’s)?
I think they understand that it protects against just HIV, but I don’t think they take into consideration the fact that there are other diseases out there, and that some of them are not curable (even if they are treatable). I had a friend who dealt with this, who was on PrEP and had unprotected sex with his sex partners. He eventually contracted herpes and while he is able to treat it, it does affect him and his sex life. – Respondent 1.
Yes and no. Frankly, the number of guys on apps who prefer bareback because it “feels better for them” astounds me. But I think they know the risks of contracting STI’s and do it anyway. Or they received such horrible sex ed and don’t listen to a PrEP coordinator, that they think they’re protected. – @allenstarby
I think gay men have misconceptions about anything gay related that’s not Beyoncé or Lady Gaga. Humor aside, some men have told me that as long as they do not contract HIV, they are ok with catching other STI’s because there is medication to fix the “lesser” STI’s. – @celestialflute
- Do you feel more free or uninhibited in your sexual life because of PrEP?
Sometimes, but not always. I’m a very careful sexual partner. I don’t drink that much, rarely smoke weed, never do hard drugs, and take care when I choose whom to sleep with. And yet, even with all those precautions, I contracted chlamydia at the beginning of this year. I still don’t know how. I hadn’t had sex in months and all the times before that had used a condom. PrEP didn’t help me then. -@allenstarby
Of course. Sex should be as free from inhibitions as possible and a space for queer people to be creative, feel good about themselves, and live out their pleasures and fantasies. I can focus more on the fun stuff because of PrEP. – @ryanscollins1
I actually feel more cautious in my sexual life. A lot of men on PrEP are becoming more sexually promiscuous, which makes me worry about the next epidemic that could hit the LGBT community. – @celestialflute
- Do you think PrEP has made the community better off?
I do. I think that HIV/AIDS has ravaged our community and any measure we can take to prevent this helps. – Respondent 1.
Ultimately, yes, I do. It’s taken some of the stigma away from HIV positive people. It’s made gay men feel more at ease in their bodies. And it’s started a small sexual revolution. That said, STD’s have sky rocketed in San Francisco according to my primary care doctor as well as a nurse at a local LGBT center. People are having more unprotected sex, and PrEP is on the rise. I can’t say if there’s a correlation, but I can say it’s a mighty strong coincidence. -@allenstarby
Oh, absolutely! It helps to prevent a disease we have yet to eradicate! HIV has stalked our community for so long, and any steps we take to beat it are good steps. – @ryanscollins1
PrEP has made the community better off because it allows us the opportunity to take an extra step toward having a safer sex life. I would add that many men have not made PrEP better for the community. Blame a person’s actions, not the medication. – @celestialflute
- Do you feel personally judged for using PrEP? If not using, do you judge others who are on PrEP?
I don’t judge anyone for using PrEP. I think that they recognize that this medicine helps protect against a vicious disease that has plagued our community for the past 30 years – Respondent 1.
Generally, no. Among my gay friends I’d say the guys not taking prep are the ones who feel judged. -@allenstarby
I have never felt judged for using PrEP, but I wouldn’t care if I did. My candor regarding my PrEP prescription has universally been received positively by people in the community and also allies. Nothing but good has happened to me because of it. I hope anyone who does feel judged for taking PrEP remembers they are part of a community that believes in them and supports their decision. -@ryanscollins1
I honestly thought that by taking PrEP, much of the HIV stigma that follows gay black men would decrease, however men have proven to be vicious all the same. It’s like you’re damned if you take PrEP and damned if you don’t. It’s time to do away with destructive perceptions of POC, in general. – @celestialflute
- When a guy tells you they are using PrEP, do you trust that they are taking it correctly and consistently?
I do yes. – Respondent 1.
I try to remain open and honest with people I meet, and hope they do the same. I’m also particular with who I sleep with. If a guy seems trustworthy and I’m attracted to him, and it mutual, I’ll go to bed with him. If he tells me he’s on PrEP I generally believe him. -@allenstarby
I can only trust myself to take PrEP as prescribed. I have to take care of my health so that I can also make sure I am keeping a future partner safe. – @celestialflute
- Do you worry about the long-term health effects of using PrEP on a daily basis?
Absolutely. I have ulcerative colitis, an autoimmune disease and my mother died of liver cancer. Every time I get my quarterly labs done I always check them myself to see if any numbers are terribly off. Ultimately I would rather not be on any medication, too many chemicals for my taste. But I recognize the necessary precautions I need to take. I’m nervous to keep taking it, but more hesitant to stop since my immune system is already compromised. -@allenstarby
I don’t. I’m under the watchful care of a doctor who knows what she’s doing! I see her every three months for blood testing, any necessary vaccines, and other tests. If any side effects or long-term health effects begin to show, I trust my doctor will alert me. – @ryanscollins1
Of course! That worry does not compare to my fear of contracting HIV, however. – @celestialflute
- When, if ever, would you consider starting or stopping your PrEP use?
I’m not sure when I would consider using PrEP, as I’m in a committed monogamous relationship so my sex life is limited to one partner now. – Respondent 1.
If I was in a committed monogamous relationship. Ultimately that’s what I want, but it’s hard to find while I’m gay, in my twenties, surrounded by smart tech boys who want to live out their Queer as Folk or Looking fantasies. -@allenstarby
PrEP can be very expensive without insurance and/or other assistance. Stopping (or not starting) PrEP may be a reality for some because of its high cost. My employer-provided insurance covers the bulk of my PrEP costs, but I also take advantage of a program run by Gilead (the maker of Truvada, a PrEP medicine). It’s a copay coupon card, and I encourage everyone looking into PrEP (or currently taking it) to check that out: https://www.gileadadvancingaccess.com/copay-coupon-card. At the end of the day, my PrEP is absolutely free. – @ryanscollins1
I would happily stop PrEP if I were in a committed and monogamous relationship. I hope to not need the medication my entire life…I know there are men out there somewhere that want something real and committed, right? – @celestialflute
- Do you feel you have fair and easy access to PrEP through your local medical/health resources?
I feel like I do with my health insurance, but for me the hurdle is being out to my healthcare provider. – Respondent 1.
Yes. I switched insurances about a year ago and the transition was seamless. -@allenstarby
I live in Cleveland, a liberal and accepting place. Recently the city has been blanketed with billboards supporting PrEP usage – and that has been awesome to see. I am also lucky to be near several health systems with LGBTQ-specific care, though the wait times to see some of those providers can be long. It’s clear that the barriers to getting PrEP are still too high. Finding a supportive doctor, taking time off work for those appointments, securing employer-provided health insurance with good benefits, and finding that copay coupon… those all had to happen before I even started PrEP. That’s a lot of work to obtain a medicine with huge public health benefits. I grew up in rural Ohio, and it can be extremely hard in areas like that to obtain LGBTQ-affirming care. It’s not easy to find transportation without a reliable car, and that can be a huge barrier for people with few resources or teens who find themselves without an adequate support system. Our community must find ways to provide proper outreach for everyone. -@ryanscollins1
For now yes, through school medical insurance. I am a bit worried about my choices after I graduate. That’s another can of worms. The government must do a better job of providing Truvada for our community. -@celestialflute
- Any other thoughts, comments, advice, tips?
I would say that while this is a great tool, it isn’t a total fix, especially against other STI’s. I’ve encountered too many guys who want unprotected sex simply because they take PrEP and I feel this misconception puts them at risk. – Respondent 1.
My maternal grandfather had affairs with men while he was married to my grandmother. After they divorced in the seventies, he came out, and married a man. The family was generally accepting from what I remember (or they were terrified of him, or both). In the mid nineties he revealed he had recently contracted HIV. He eventually died of AIDS when I was nine years old. So HIV/AIDS has always been present in my life. No one else in my family has it, but the shame and confusion it brought on my mother’s side of the family was palpable. When I was discovering my own sexuality, and eventually came out when I was a teenager, the thought of contracting HIV terrified me. I didn’t want to put my family, especially my mother through that again. It’s been an interesting exercise to wonder what my life would have been like had PrEP been available to my grandfather. Would he have guided me through life? Or would I have felt more shame? I can’t say. -@allenstarby
Take PrEP if you decide it’s a good fit for you, and even if it’s not, I highly recommend finding an LGBTQ-affirming primary care doctor. Doing that was one of the best decisions for me as a gay person. She knows the right questions to ask, and I’m not embarrassed or intimidated to talk with her. I found my doctor starting with a simple Google search. Don’t let anybody shame you for the amount of people you’ve had sex with. Sex- and kink-positivity celebrate the fun we create for ourselves and with others. Allow yourself to break down self-imposed barriers. Stay strong and trust there are people just like you and with similar interests. Keep looking if you haven’t found them yet. Be good to yourself. Wear condoms. Get tested regularly. Have fun! – @ryanscollins1
I will never regret being on PrEP. I do regret that a useful medication, as such is being so freely abused by gay men. It is not fair to our community and it is not fair to our history. There are people of all walks of life working hard to improve the LGBT community and the least we all can do is honor our bodies and stay safe. Lastly, I have met men who borrow PrEP from other people, having never been prescribed the medication. The medical testing one takes to be prescribed Truvada is extensive. The use of the medication could potentially be very harmful to the body, so doctors must make sure your body can handle it. Please take PrEP responsibly and as prescribed! @celestialflute
–Thank you to my participating followers and for the many more who offered but I was unable to interview. It is so powerful to be able to share REAL messages from REAL members of the community. For more information on PrEP and ways to get it, click here.