Every 30 hours, a gay or bisexual adolescent boy under 18 in the U.S. is diagnosed with HIV. Gay and bisexual teen boys are disproportionately affected by HIV, accounting for almost two-thirds of new infections among adolescents.
Young gay and bisexual men of color are hit especially hard, accounting for over three-quarters of these infections. HIV rates are rising among Latino adolescent boys , and 1 in 2 black men who have sex with men are expected to become HIV positive in their lifetimes.
Given these alarming numbers, you might expect that substantial efforts are aimed at HIV prevention in these groups of boys. But that’s just not the case — out of 61 HIV prevention programs endorsed by the Centers for Disease Control and Prevention that focus on changing HIV risk behavior, zero are for gay or bisexual teen boys.
A handful of researchers, including the team I work with at Northwestern University, are chipping away at this problem by developing such programs. In the meantime, there is one potent tool that can curb the HIV epidemic in teens: a once-daily pill.
The problem is that barely any gay teen boys are using it, and few teens are talking about it.
In May 2018, the Food and Drug Administration approved a once-daily pill called Truvada that combines two anti-HIV drugs, tenofovir and emtricitabine, for HIV prevention in teenagers weighing at least 77 pounds. This pill is part of a strategy known as pre-exposure prophylaxis (PrEP), which can prevent HIV from taking hold and spreading throughout the body. Truvada was approved for HIV prevention among adults in 2012 and has been used treat HIV since 2004.
PrEP is safe, with limited side effects. It is highly effective — if taken as prescribed it can reduce sexual transmission of HIV in gay and bisexual men by 92 percent, possibly even higher with perfect use.
Places like Los Angeles County, San Francisco, and New York state recognized the effectiveness of PrEP for teens even before the FDA approved its use for them.
So why aren’t teens using it?
For starters, most aren’t aware of PrEP. In 2015, only 16 percent of gay and bisexual teen boys knew about PrEP. In a spring 2018 study, several colleagues and I found that awareness had risen to 55 percent. We also found that when they do learn about PrEP, they report very high levels of interest in it.
Stigma also plays a role in the lack of adoption of PrEP. The unfounded perception that PrEP users are promiscuous is a well-known obstacle to its acceptability in adults, and it’s possible that perception exists in teens, too.
Structural obstacles restrict access. PrEP is covered by health insurance. Yet teens whose parents don’t approve of their sexual orientation don’t want to be “outed” by an insurance bill. Without insurance, PrEP is prohibitively expensive — approximately $2,000 per month (though medication assistance programs can defray some costs).
Other barriers that can make getting on PrEP seem nearly impossible include murky laws regarding adolescents’ rights to self-consent to HIV prevention services; challenges finding a doctor who knows about PrEP, let alone is willing to prescribe it; lack of transportation to get to the routine doctor visits required when starting PrEP; and difficulty scheduling those visits outside of school hours.
The recent emergence of PrEP for teens calls to mind the disastrous rollout of the HPV vaccine, which prevents a sexually transmitted infection that causes cancer. When the vaccine initially became available for adolescents, public backlash hampered its uptake.
Parents’ concerns often centered around the possibility that the vaccine would encourage their teens to have sex (it doesn’t) and only after public health messaging began to emphasize how the vaccine could prevent cancer did the vaccine’s acceptability improve.
The implementation of PrEP in gay and bisexual teens may follow a similar trajectory. In one study, my colleagues and I interviewed parents of adolescent boys and asked them to imagine their son was interested in participating in a study testing PrEP. Overall, parents were motivated to protect their kids’ health and saw great value in PrEP. But they also had several concerns — that it would make their teen have risky sex, or that they couldn’t trust their kid to take the pill as prescribed. One mother told me, “What’s the point of taking a drug to prevent something you don’t have?”
As a parent myself, I can see where they’re coming from. But as a public health researcher, I know that teens are capable of making better decisions than they’re given credit for. In my clinical practice, I have witnessed the drastic toll HIV can take on my patients and their families, so the value of preventing an incurable and sometimes devastating disease that costs hundreds of thousands of dollars to treat over a lifetime outweighs my worries.
Although there are no widespread campaigns to promote PrEP for at-risk adolescents right now, getting parents on board by focusing on its long-term benefits rather than its short-term risks for gay and bisexual teen boys can prevent PrEP from encountering a fate similar to the HPV vaccine.
We talk about one day achieving an HIV-free generation. It is the responsibility of parents, health care providers, and public health professionals to equip teens with information about PrEP as part of routine sex education, and advocate for them to get PrEP if it’s right for them. Until then, one of the most potent tools in the fight against HIV in one of our most vulnerable populations will remain tragically underused.
Kathryn Macapagal, Ph.D., is a research assistant professor in the departments of medical social sciences, psychiatry, and behavioral sciences, and the Institute for Sexual and Gender Minority Health and Wellbeing, all at Northwestern University. She is also a Public Voices Fellow through The OpEd Project.