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When David Toussaint first heard about PrEP, a daily pill that guards against infection with HIV, he thought it was too good to be true. A 55-year-old actor and writer in New York, Toussaint came of age at the height of the AIDS crisis, when information about the virus was scant and sex had become synonymous with fear and death.
“Sex was terrifying without a condom,” Toussaint tells Them. “I would panic at the slightest thing that happened.”
Eventually, in the mid-1990s, the development of antiretroviral therapies would make infection with HIV into a chronic illness rather than a death sentence. Yet Toussaint’s fear persisted. Once, after having protected sex with an HIV-positive man in the early aughts, he found a pimple that had bled slightly during the encounter. Fearful he had contracted the virus, Toussaint anxiously waited the six weeks it takes for HIV to show up on a blood test, endured the terror of going to a clinic, then bided his time for another two weeks for the result, which was negative. The ordeal will sound familiar to many gay men who grew up in the shadow of the 1980s, whether they experienced the crisis with their own eyes or absorbed its trauma secondhand.
Now on PrEP (short for pre-exposure prophylaxis), Toussaint is free to have condomless sex without fear. “I’m sorry my friends who died didn’t live to see the day we didn’t have to wear condoms,” he says. “It’s a truer intimacy and we deserve it.”
The Federal Drug Administration first approved PrEP in 2012 under the brand name Truvada, and in 2014 the Centers for Disease Control released guidelines recommending its use among high-risk groups, including men who have sex with men and transgender people. In October, the FDA approved a second drug for use as an HIV prophylactic among gay and bisexual men: Descovy, which studies show is as effective as Truvada but may affect kidney function and bone density less.
From 2014 to 2017, PrEP use among gay and bisexual men shot from 6 percent to 35 percent in 20 major U.S. cities, according to a CDC study released last year. Over the same time period, rates of HIV infection among men who have sex with men in these urban enclaves have declined precipitously: by 37 percent in New York City, 47 percent in San Francisco, 13 percent in Los Angeles, and 17 percent in Chicago.
Along with PrEP, which has been shown to be more than 99 percent effective with daily use, treatments for those infected with HIV have begun to loosen the stranglehold the epidemic has long had on the community. Known as “treatment as prevention,” or TasP, current drug regimens are able to bring the virus to undetectable levels, which research has shown makes those infected unable to transmit HIV. While the AIDS crisis is far from over, PrEP and TasP have given some a glimpse of what that day will look like in certain swaths of America.
“For 20 years, most sexual encounters were filled with trepidation,” says Damon Jacobs, an HIV-prevention advocate and therapist in New York City. “Now, with successful biomedical interventions for HIV, people are able to connect sexually without the risk it will result in a lifelong chronic deadly disease. That has been a major shift in emotion and spirit.”
That shift in the gay psyche, however, falls along the familiar fault lines of race, class, and geography. One in eight gay and bisexual men lives in a “PrEP desert,” according to a 2019 study, where the nearest provider of the regimen is more than 30 minutes away. They are disproportionately concentrated in rural areas and the South, but even those who live close to cities have trouble accessing care: A quarter of people living in “PrEP deserts” reside in the suburbs.
Uptake has also been slower among ethnic minorities and the poor. A CDC analysis of 23 cities reported that 43 percent of white men took the drug compared with 30 percent of Latinx men and 26 percent of Black men. Despite the existence of programs that make the regimen available at no cost to those without insurance — including a new nationwide program from the Department of Health and Human Services — those without coverage are four times less likely to adopt the regimen than those with it.
While major cities have seen dramatic dropoffs in infection rates, progress has been far slower across the country, with infection rates for men who have sex with men ticking down a mere 3 percent from 2014 to 2017. More alarming, it has skyrocketed for Latinx men nationwide by 18 percent during the same time period, and by a shocking 38 percent for gay and bisexual Black men between the ages of 25 and 34.
Still, it is impossible to ignore the profound ways that PrEP adoption has changed gay cultural mores in what were once the epicenters of the AIDS epidemic. In study after study, gay and bisexual men report that it has freed them from the fear and anxiety once endemic to sex. They feel they have greater control over their sex lives. They feel proud of the small part they play in curbing the epidemic. They are less likely to rule out sex or relationships with HIV-positive people. As one study participant told Canadian researchers, “Sex has been liberating again, thanks to PrEP.”
Before the FDA approved PrEP in 2012, members of the public health community debated whether it would lead gay and bisexual men to be more reckless about sex, a phenomenon academics call “risk compensation,” and send rates of other STIs soaring. Some HIV/AIDS advocacy groups opposed its approval, as did some activists.
But several years in, those fears have proven overblown. PrEP has indeed allowed some gay and bisexual men to feel more comfortable enjoying sex without condoms. While several recent studies have found moderate levels of risk compensation among adherents, it has not fundamentally altered sexual behavior or led gay and bisexual men to have more sexual partners.
“We have enough qualitative and quantitative research to indicate that some people choose not to use condoms consistently or at all while they’re taking PrEP,” says Julia Marcus, an infectious disease epidemiologist at Harvard Medical School. “Whether PrEP has contributed to overall changes in sexual behavior, however, is difficult to answer, especially because condom use was already declining before PrEP came on the scene.”
Marcus pointed out that condom use has been decreasing steadily since the early 2000s and that it may simply be that those who are more likely to have unprotected sex are also more likely to take PrEP. No matter all the contributing factors, it stands to reason that if one eliminates the risk of catching or transmitting HIV, it changes the sorts of sex gay men feel comfortable having.
“Gay people always carried the burden of having to be the condom police,” Jacobs says. “Now, we can communicate that ‘I enjoy sex without latex barriers’ without fear of stigma. That is a beautiful change in terms of human connection.”
As with condomless sex, STIs like chlamydia, gonorrhea, and syphilis have risen among gay and bisexual men since the advent of PrEP. The CDC recently reported that rates of STIs have reached historic highs, with gay men disproportionately affected by the increase. This was particularly true when it came to syphilis, with gay men accounting for 54 percent of new infections in 2018.
But as researchers are quick to note, the rise may simply reflect increased screening for bacterial STIs: Current CDC guidelines recommend that PrEP users undergo comprehensive testing for STIs at least every six months. Rather than contribute to increasing STIs, PrEP may be the vehicle for reducing them.
This is the idea behind statistical modeling by Samuel Jenness, an assistant professor in the Department of Epidemiology at Emory University. Jenness has shown that adoption of PrEP should in fact reduce the rate of STIs even with moderate levels of “risk compensation” if users stick to CDC clinical practice guidelines.
“If we treat PrEP not just as a pill that people take every day but as a sexual healthcare program with STI screening, we will treat enough STIs in a year to offset any rise caused by decreased condom use,” Jenness says. “But the levels of screening are nowhere near recommended levels and maybe that’s why we’re seeing upticks in STI rates.”
According to one 2017 survey, a quarter of primary-care providers had not even heard of PrEP, and many prescribe the drug without requiring patients to return every six months for comprehensive testing, as is recommended. The findings suggest further outreach and education for providers is key not only to proper implementation of PrEP, but fighting other STIs as well.
The public health establishment has, wittingly or not, long leveraged fear in the course of combating HIV and other STIs. This has manifested itself in the ways officials have communicated — or rather, failed to communicate — accurate information about both PrEP and TasP. By 2016, evidence had begun to mount that HIV-positive people could not transmit the virus if they maintained an undetectable viral load. Couched in the cautious, opaque language of scientific inquiry, the information was not trickling down to patients. That year, advocacy group the Prevention Access Campaign launched Undetectable = Untransmittable (U=U), a marketing campaign aimed at educating the public about the findings.
“For HIV-positive people, U=U sheds that stigma about being carriers of disease,” says Murray Penner, executive director for North America at the Prevention Access Campaign. “It normalizes HIV — if you're undetectable, you can't pass on HIV, unlike being contagious with even a common cold."
Public health officials have been similarly remiss in communicating just how well PrEP works. With trials showing efficacy rates as low as 44 percent and as high as 99 percent, experts have expressed varying levels of confidence in the drug. The variability, however, stems from lack of adherence to the daily regimen rather than reflecting the efficacy of drugs like Truvada and Descovy. Taking PrEP seven days a week makes the drug regimen more than 99 percent effective; it is 96 percent effective if taken four days a week, and 76 percent effective if taken two days a week.
“People are reluctant to say ‘no risk’ because of stigma. There are scientists and researchers who will say you can never completely eliminate the risk of something happening,” Penner says. “But the fact is there have been zero transmissions in studies from people with HIV who are undetectable. We suggest that phrases like ‘virtually no risk’ or ‘essentially no risk’ are not useful, and in fact can be harmful, because they put doubt in people’s minds.”
These qualifiers may appease scientists who fear speaking in absolutes, but they create confusion about the real-world efficacy of PrEP. The CDC itself will only go as far as saying that its users have “effectively no risk” of contracting the virus.
Some advocacy groups have been guilty of actively feeding fear and stigma. For the last several years, the AIDS Healthcare Foundation — which opposed the approval of PrEP to begin with — has run nationwide advertising campaigns encouraging condom use and warning about increasing STD rates, which the organization says highlights the “shortcomings of biomedical interventions like PrEP.” AHF’s campaigns have included ads warning of a “syphilis tsunami,” a “syphilis explosion,” and drug-resistant strains of gonorrhea.
But as PrEP and TasP help alleviate anxiety in the gay community around sex, many public health experts have begun to reconsider the ways they communicate with the public about sexual health and STIs.
Harvard’s Marcus has been among the prominent voices calling for this change. With successful biomedical interventions against HIV, terms like “unsafe sex,” “risky sex,” and “unprotected sex” to denote condomless sex have become outdated and imprecise; they do more to feed stigma than communicate information about STIs, she notes in a recent paper.
Marcus urges researchers and clinicians use more neutral language in discussing sexual behavior, using precise terms like “condomless receptive anal sex” or “multiple anal sex partners” without qualifying such behavior with negative language.
“Clinicians and researchers end up with a reductive, disease-focused perspective where we forget that there are other things that matter to people about sex, including intimacy and pleasure. Sex is not ‘risk behavior’; sex is sex,” Marcus says. “The World Health Organization defines sexual health not only by the absence of disease, but also by a holistic state of physical, mental, and social well-being related to sexuality.”
“We all know that there’s more to sex than not getting gonorrhea,” Marcus adds.
In New York City, Demetre Daskalakis, deputy commissioner for the Division of Disease Control of the New York City Department of Health and Mental Hygiene, has advocated for a more holistic approach to combating HIV.
“New York City has focused on delivering the message that people should have happy sexual sex lives,” Daskalakis tells Them. “We are shifting the dialogue away from guilt and stigma and into areas of sexual health. PrEP has been an important piece of that.”
Under his tenure, New York has rebranded its STI testing centers as “sexual health clinics” that serve HIV-positive and -negative New Yorkers alike and opened its first “Quickie Lab” to provide rapid testing for chlamydia and gonorrhea. New York has also replaced ads showing graphic photos of STIs with cheerful placards that encourage testing and PrEP adoption.
“We can’t keep HIV prevention hostage to other STIs,” Daskalakis says.
To scale its approach, the City has partnered with medical clinics and front-line providers to create PlaySure, which encourages sex-positive approaches to sexual health and HIV prevention. The Department has also made outreach to communities of color a cornerstone of its efforts to combat the virus, employing culturally and linguistically sensitive messaging in its public-information campaigns.
These changes have made New York a model for HIV prevention. Not only have rates of HIV infection plummeted among gay and bisexual New Yorkers; rates of PrEP uptake do not differ significantly among white, Black, and Latinx members of the community.
“Whether you’re gay, trans, or cis, you should have a pleasurable sex life that doesn’t equate your sexuality with death and disease,” Daskalakis says. “The evidence and data show that fear-based campaigns don’t work.”
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