People Are Going off PrEP in the COVID-19 Era Because They’re Not Having Sex

If anyone’s been a cheerleader the past several years for pre-exposure prophylaxis (PrEP), the practice of taking the HIV meds Truvada (emtricitabine/tenofovir disoproxil fumarate) or Descovy (emtricitabine/tenofovir alafenamide) daily (or near-daily) to prevent getting HIV from sex, it’s gay New York City–based therapist Damon L. Jacobs, LMFT. He started the Facebook group PrEP Facts shortly after Truvada was approved for PrEP by the Food and Drug Administration (FDA) in 2012—it now has more than 20,000 members—and he’s proudly called himself a “Truvada whore” in his tireless promotion of PrEP as a way to end continued HIV infections in high-risk populations, such as gay men and transgender women—especially in Black communities, where HIV rates are dramatically higher than elsewhere.

Because of PrEP, “I’m not scared of sex for the first time in my life, ever,” Jacobs told me for a New York magazine story on PrEP in 2014. “That’s been an adrenaline rush.”

But guess what? Reflecting anecdotes circulating among (primarily) gay men nationwide, Jacobs has gone off his PrEP for the first time since he started it nearly a decade ago. COVID-19—and the social distancing that has sprung up to minimize its spread, which also involves, well, sexual distancing—made him do it, he says.

“I realized somewhere around March 21 that I was not going to have sex at all for a while,” says Jacobs, who is single. “I wasn’t able to have sex without fear until PrEP, and now the fear”—not of getting HIV, but of getting or spreading COVID-19—“is back. And I don’t want to put sex and fear back together in my lived experience.”

So, because he’s planning not to have sex for at least the near future, he says, until we know more about when and how we can come together again safely, he sees no reason to be on his PrEP.

It’s something that PrEPsters nationwide—even globally—are also doing. In Washington, D.C., Matthew Rose, with the global-AIDS advocacy group Health GAP, says he just went off his PrEP for the first time in five years. “I know I’m not going to be having sex for a long time,” he says. “And otherwise, it’s not a medication that is critical to my life function.”

In Brooklyn, Jason Rosenberg, a programmer for a cultural institution, says he went off PrEP recently for the first time in a year and a half, not long after his last sexual encounter in late February. “Within a week of being quarantined, I figured out that this would be a long-term isolation and that I wasn’t going to be sexually active,” he says. “I also figure our clinics are under a lot of demand with COVID, and my trying to get my PrEP refills and labs right now is taking time and energy out of people’s workday and health care.”

Also in Brooklyn, José Sanchez, a freelance nonprofit worker, jokes that “my Descovy bottle is collecting dust” since he stopped taking PrEP after the Super Tuesday primary elections on March 3. “The only reason I take it in the first place is to have sex safely and pleasurably, and I can’t hook up anymore for the time being,” he says.

In Manhattan, Joe Osmundson, Ph.D., a professor, says that both he and his partner had been taking PrEP for when they had three-ways or more, but now that it’s just the two of them, they’re both off it. Plus, he says, he’s not in the mood for recreational sex. “I’m so stressed all the time, holding all the sadness and death in New York City right now, so I’m not particularly missing the world of circuit parties and hookups.”

And in London, Will Willow, the cofounder of PrEPster, which made PrEP available in the United Kingdom well before the country’s National Health Service approved the drug for prevention use, says that he is off his PrEP, which he took to prevent HIV from sex outside his primary relationship. “If I don’t need it, then I’m going to give my body a break from it,” he says.

The Hold-Outs

It’s not just random dudes reporting a PrEP-cation, either. Staffers at HIV and LGBTQ agencies nationwide say that they are definitely hearing about PrEP clients going off their PrEP—or at least calling to ask if it’s OK if they discontinue it for now. And that’s exactly what experts are urging.

“We really recommend that patients always consult with providers before going on or off any medication,” says Michael Castro, M.P.H., the PrEP manager at Chicago’s LGBTQ-serving Howard Brown Health, adding that “a handful” of patients have recently let them know they’re dropping their PrEP. “On the other hand, some are saying that they want to stay on it just because they’ve worked so hard to build up their adherence routine.”

There’s yet another reason why at least some folks are staying on PrEP amid the COVID shutdown even though they’re not having sex: Scattered anecdotal and as-yet-unproven reports from doctors that their patients on HIV meds, whether that’s positive folks on treatment or negative folks on PrEP, seem to be getting COVID-19 at lower rates than other patients, or with lesser duration or severity.

It’s important to point out that—although a new study in Spain is currently trying to determine if giving PrEP to frontline COVID-19 health workers can prevent them from getting the virus, or at least mitigate its length and effect—currently no hard evidence exists that any HIV med works against COVID-19, despite what some may hope.

Still, the rumors have been enough to keep some folks on their PrEP. “I figured I’d stop it when the COVID thing started,” says B., a writer from Queens. “Then I heard from a friend that his doctor, who is gay and fairly well-known, was saying he noticed that his patients on PrEP with COVID weren’t getting as serious symptoms as others. So I’ve felt scared to stop PrEP, even though I haven’t had sex other than cuddling with my partner for more than two months now.”

Others who might want to stay on PrEP right now are those in a relationship with an HIV-positive person, especially if one or both parties are not entirely sure that the positive person is consistently HIV undetectable (which would render their HIV untransmittable to others.)

And according to C.J. Tobe, director of community health at Desert AIDS Project in Palm Springs, California, while some patients there are going off their PrEP, they’ve also had some new PrEP enrollments, which he thinks is a good thing, including from a harm-reduction point of view. “It’s very apparent here in Palm Springs that a lot of the MSM [men who have sex with men] community is not adhering completely to social distancing,” he says. “We can sit here and say, ‘Stay away from people and don’t have sex,’ but people often deal with stress by having sex.

“Our advice,” he continues, “is to stay home and masturbate.” In fact, the agency has even partnered with the porn star Trenton Ducati on a campaign encouraging just that. And, of course, many folks are having “virtual sex” in couples or full-on “orgies” via video platforms or apps like FaceTime and Zoom. (Read TheBody contributor JD Davids’ piece here, on his The Cranky Queer website, on how to have sex in the COVID-19 pandemic. Think of it as the coronavirus counterpart to the pioneering How to Have Sex in an Epidemic, the 1983 tract by Michael Callen and Richard Berkowitz that is widely hailed as having “invented” AIDS-era safe sex.)

Still, says Tobe, “We know that virtual sex isn’t going to work for some people.” So, he says, just as activists came up with harm-reduction tips for having sex during the height of the AIDS epidemic—reduce your number of partners, have non-penetrative sex, or wear a condom if you do—activists are now doing the same for IRL sex in the COVID era.

“Instead of having 20 sex partners a week, you can have sex every day with your favorite,” he says. Other harm-reduction tools for sex-during-COVID, says Castro at Howard Brown, include abstaining from sex when you’re sick or having symptoms, having frank conversations with potential sexual partners about whether you or they have been exposed to COVID already (and hoping everyone is telling the truth), washing your hands thoroughly before and immediately after sex, and/or avoiding mouth-to-mouth or hand-to-mouth contact during sex, since it is understood that the COVID virus enters the body through the eyes, nose, and mouth.

What Does the Future Hold?

Of course, everything that’s happening now is a short-term response to COVID’s interference with physical intimacy. “It’s a disruption in human connection, touch, sexuality,” says Jacobs. “And that feels sad. But you have to ask yourself if the consequences of having sex with someone right now is something you really want to live with, especially if you share a home with people who may be more vulnerable than you.”

Then again, humans are not wired to abstain from IRL sex or to have virtual, no-touch sex forever. What will happen if COVID social distancing mandates stretch into the late spring, summer, and fall, as they well may?

“Some of my therapy clients have told me they feel more at risk of being harmed by loneliness than by COVID,” says Jacobs. “They said they’ve had sex with a few people who’ve also been completely isolated. And I’m like, ‘OK.’ It’s not my role to tell people what to do, but to help them think about ways of reducing harm to themselves or others.”

Says T., a New York City therapist who is staying on his PrEP in the hope that it might prevent or mitigate COVID-19, “I’m not sure any single gay man I know has really reckoned with what it means if the quarantining and social distancing drags out into 2021 and 2022. Is abstinence really a long-term option?”

One thing is clear: Plenty of gay men are still on the hookup apps, like Scruff and Grindr—if not necessarily to find IRL hookups, then to have social and emotional connection, flirtation, pic-swapping, and even perhaps virtual sex in a time of isolation. (It’s not often-enough noted that one’s nightly Scruff or Grindr “grid” of possible sex partners often evolves into one’s informal support network of neighbors and friends.)

“I’m totally on Scruff and Grindr right now,” says Rosenberg. “When we lack physical connection, some type of connection with friends and past lovers is crucial to process our feelings over.”

In London, Willow says that though his app profiles prominently state that he is not looking for sex right now, “I’m using the apps to talk to guys about the sex they’re having right now” from a health and harm-reduction point of view. But he says he understands why many are still looking for physical intimacy even amid a quarantine: “Who doesn’t want to be held, especially if you’re single and on your own?”

And as for PrEP, there’s the possibility—which worries prevention activists—that some who go off their PrEP now may not go back on it later, too distracted or unmotivated to reboot prescriptions and do those every-three-month lab tests.

Most of the PrEP users spoken to for this story said they’d definitely go back on it—but perhaps in formats other than daily, such as the 2-1-1 approach (take two PrEP pills the day before sex, one the day of, and one the day after) or the “T’s and S’s” approach, which is taking PrEP on Tuesdays, Thursdays, Saturdays, and Sundays. Such approaches, both backed by research, reduce pill burden and can make refills last longer as well as reduce possible long-term side effects (the evidence for which, thus far, is minimal.)

It’s all part of the bigger question of what our sex lives are going to look like going forward in the COVID-19 era. “At some point, we’ll have to make a change in how we distance,” says Rose, “because our way of life cannot sustain these conditions for more than a few months.”

Meanwhile, not only are some folks finding ways of getting sexual satisfaction during COVID-19—they’re also finding innovative ways of “selling sex” for a good cause. In New York City, Jake, who works for a children’s charity, has changed his Grindr name to @feetpicsforcharity. “I’m telling guys that if they make a donation to any charity and send me a photo of the receipt with their identifying information redacted, I’ll send them pictures of my feet. I’ve raised $650 so far,” he says.

Talk about putting one’s time off PrEP to good use. Are his feet that amazing?

“They’re really big,” he says. “And I have a willingness to share them with people who want to do good in the world.”