Teens today have never known a world where HIV was a certain death sentence. They missed the “plague years” of AIDS—the confusion, the pop-cultural discussions, the general feeling of hopelessness regarding the disease. This is sometimes referred to as “historical privilege.” It means that through no fault of their own, teens could be unaware of the enormity of the epidemic—the havoc it wreaked, the damage it is still very much capable of causing.
By 1996, all of today’s teens were born and antiretroviral therapy had been tested and approved by the FDA. It proved to be so effective at extending lives that many have come to regard HIV as a manageable chronic condition. That view is simplistic: it ignores the several systemic and cultural barriers for populations hit hardest by HIV (like trans women, black women, and black MSM—men who have sex with men—particularly in the South). But despite (and in some cases, because of) teens’ lack of experience with the worst effects of the AIDS crisis, they remain an at-risk group.
According to the CDC’s most recently reported numbers, U.S. citizens aged 13-24 accounted for 22 percent of new HIV diagnoses in 2015. That’s a number disproportionate to the overall population, albeit slightly—in 2013, the year for which the most recent Census breakdowns by age are available on the Census Bureau website, people aged 10-24 made up 20 percent of the U.S. population (When it comes to these numbers, “teens” are generally assessed within the broader group of people aged 13-24, the U.S.-government approved definition of “youth.” It bears mentioning that 80 percent of the diagnoses detailed above occurred in youth aged 20 to 24).
“With medicine being what it is, this should be a non-issue,” said Emily Brown, field organizer at Georgia Equality, an LGBT advocacy organization based in Atlanta. But because of a storm of factors, HIV remains an issue for a generation that should be shielded by medical technology—antiretrovirals decrease viral load in HIV positive people to the extent that the disease becomes undetectable in blood tests and exponentially more difficult to transmit, if not impossible in the majority of cases. They also protect HIV negative individuals who take them from contracting the virus, via what’s called PrEP (or pre-exposure prophylaxis) with efficacy up to 99 percent. If everyone at risk were treated, the theory goes, HIV would disappear.
But you can’t treat what you aren’t aware of. According to the CDC, only 10 percent of sexually experienced high school students have been tested for HIV.
“That’s a failure of the system for youth,” said Adam Leonard, a nurse practitioner with the San Francisco Department of Public Health who provides PrEP and HIV care to youth and works as an assistant clinical professor of nursing at the University of California at San Francisco. “It means we’re not having conversations with youth in the first place. We’re making assumptions about youth who are and are not ‘at risk’ for HIV or youth aren’t willing to disclose their sexual activity because of stigma.”
The lack of dialogue is key, according to the dozen or so experts—doctors, youth educators, youth living with HIV—I interviewed for this article. This is not an easy to talk about, and given the cultural intersections of 2017—the “historical privilege” combined with the considerable rates of new infections among youth—it’s a difficult subject for some teens to wrap their heads around. A Kaiser Family Foundation survey from 2012 found that “most young people say they are not hearing much about HIV/AIDS. Three out of five say they ‘rarely’ (37 percent) or ‘never’ (27 percent) saw or read any news coverage about HIV/AIDS or other STDs in the last year. It is also not coming up much in everyday conversation: 39 percent say HIV or other STDs have not come up at all in the last year.”
It gets worse: Though the majority of respondents to that survey of 15 to 24 year olds said they’d feel “comfortable” being close friends or working with someone who is HIV positive, the majority also said they’d be uncomfortable being roommates with, having their food prepared by, or being in a relationship with someone who is HIV positive. According to Gilead, the drug company that makes Truvada (thus far the only FDA-approved form of PrEP), people who were under 25 years old who started PrEP in the survey period (2012, when it was approved to September 30, 2015) comprised just 7.6 percent of PrEP users in the U.S.
A Shared Risk
HIV disproportionately affects certain populations—including with U.S. youth. It follows that out of the 8,807 youth who were diagnosed with HIV in the United States in 2015, the vast majority (81 percent) were MSM. Out of the newly diagnosed male youth, 55 percent were black, 24 percent were Hispanic/Latino, and 16 percent were white. It’s worth noting that, per the pioneering research of Greg Millett, black MSM have not been found to engage in riskier behavior than white MSM.
Teens are just as susceptible to racism, homophobia, transphobia—which foster stigma and systematic disparity contributing to new infections—as their older counterparts. They fall prey to the substance abuse that is sometimes associated with HIV (both in intravenous drug use and the way drugs can facilitate to riskier sex). In the U.S., teens like adults live in an era where what state you live in drastically affects your access to insurance, which is adding to the problem in the South and its black residents since it’s mostly southern states that didn’t adopt the ACA’s provisions.
“If you were to overlay a map of Medicaid expansion and where we’re seeing new HIV diagnoses, they basically line up with states that don’t have Medicaid expansion through the ACA and states where we’re seeing incredibly high rates of HIV infections,” said Leonard on the socio-economic aspect of new infections. Of the Southern AIDS Strategy’s assessment of the nine states that had the highest HIV and AIDS diagnosis rates in the U.S. from 2008 to 2013— Alabama, Florida, Georgia, Louisiana, Mississippi, North Carolina, South Carolina, Tennessee, Texas—none of them had Medicaid expansion (Louisiana has since expanded). Pew estimates that 55 percent of black people live in non-Medicaid expansion states (versus 42 percent of whites, 38 percent of Latinos, and 23 percent of Asians). Given the disproportionate rates of HIV among black people, doesn’t take a medical professional to see the pattern.
But there are unique factors that make them particularly vulnerable.
“The younger they are, the less likely they are to have insurance, the less likely they are to be working in a job that provides insurance,” said Deontez Wimbley, 24, who’s based in Atlanta and works as a community health educator/Teen Action Group coordinator for Planned Parenthood Southeast. “They’re more likely to have limited resources. They may know certain things, but if they don’t have the connection to the resources to capitalize on what they might know, that’s a huge issue there as well.” Aside from his work, which puts him in contact with hundreds of youth per year, Wimbley is an expert on the virus because he was diagnosed in 2012, back when he was a teen.
For a variety of reasons, a disease that one may or may not have doesn’t take priority in a teen’s life the way other factors do.
“Young people come to us in crisis all the time, and by and large, their crisis has nothing to do with their HIV status,” said Bridget Hughes, director of youth services at New York’s LGBTQ youth support center the Hetrick-Martin Institute, which serves about 2,000 people aged 13-24 a year (500 to 600 are first-timers). “The crisis that is motivating them to walk through our doors and to connect with LGBT service providers is extreme depression, isolation, loneliness. It’s homelessness. It’s dealing with violence. It’s dealing with an unsafe school environment or unsafe foster care placement or an unsafe home life. It’s developmentally appropriate that that’s what they see as the crisis.”
Skye Adrian, 21, who does advocacy and policy work at NYC-based organizations FIERCE and CAMBA, can speak to this experience firsthand. Months after emigrating to the U.S. from Jamaica in 2015 when he was 18, Adrian’s parents kicked him out of the house when they found out that he’s gay. He stayed with friends, which soon compromised his safety and health.
“There was one person I was staying with and he said for me to stay there I had to have sex,” he recalled. “I didn’t have anywhere else to go so I did. And he insisted on not using a condom. After it happened he revealed that he was HIV positive. And that’s when I went in to get PEP.” PEP is post-exposure prophylaxis, an antiretroviral regimen with slightly more drugs that PrEP that a person takes for about 30 days to prevent HIV after potential exposure.
Adrian remains HIV negative today and eventually secured housing via the Ali Forney Center, which aids homeless LBGT youth with a variety of services including a shelter and drop-in center. He acknowledged that his experience is not necessarily the norm for at-risk teens: “When you’re trying to figure out where you’re going to sleep at night, you’re not going to be concentrated on taking a daily pill,” he said. “If you don’t have stable housing, you could be walking around with your belongings because you have nowhere to hold them. You lose your PrEP pills, you lose all those things.”
What Do They Know?
Kaleb Anderson, 19, was diagnosed with HIV last year, as chronicled in an essay he published recently on VOX ATL, “HIV Tried Me. It Lost: My First Year In College.” Before he started attending DePauw University in Indiana, Anderson went to an all-boys high school in Atlanta, where he was taught sex education by someone who, in his estimation, “wasn’t that well educated.” For a gay youth like Anderson, his sex-ed was missing crucial information—it was devoid of queer-sex knowledge to the extent that he had no sense of how the disease was impacting his community until he started working at Atlanta’s Grady Hospital. (Atlanta has the fifth highest new-diagnoses rates in the country among all populations, and just like virtually everywhere else, black MSM there are disproportionately affected). Even after he became better acquainted with HIV through his work at Grady, he didn’t know what “undetectable” meant. He learned only after he was diagnosed. He didn’t trust PrEP to protect him, either.
“We all thought it was a joke. We didn’t think this little pill could actually do something,” he told me regarding his friend group of mostly queer black youth. “Before being diagnosed, I never considered taking PrEP and I knew exactly what it was. Now I suggest PrEP to all of my friends. If I would have been taking PrEP, would that have made a difference in how I am now?”
The majority of the experts I talked to told me that comprehensive sex education across the country, taught by actual experts (not, say, gym teachers) is key to giving youth the tools they need to protect themselves. But not only does the quality of sex ed vary wildly by state and school, it is on the decline and the majority of it emphasizes abstinence, which is more of an ideal than a reality given the sexual nature of the human species.
“We have huge problems with stigma here,” said Josh Bruce, director of education at the Birmingham AIDS Outreach, which serves the metro area of Birmingham, Alabama, and its six surrounding counties, in a variety of facets, including school sex ed programs. “We are in the Bible Belt. HIV to them means, gay gay gay dirty dirty dirty bad bad bad. Some of the more affluent schools, those are where we get the kickback of, ‘Oh that’s not a problem here.’”
Bruce said the poorer schools that are seeing sexual health problems manifest firsthand—not coincidentally, these schools are often predominantly black—are more likely to accept his services.
But along with a lack of education, there’s the damage of miseducation.
“There’s so much I have to untangle and weed through and disprove and demystify, to where after I’ve done that to educate in a way that is constructive, half of the time is gone,” said Wimbley. “I have to disprove certain ideas about condoms, I have to disprove that you have to be Magic Johnson to get medication. The willingness to learn is not an issue, the issue is [youth] have already learned so much and so much of it is incorrect.”
Teen knowledge of HIV and its accompanying issues varies wildly depending on whom you ask. Ashley Murphy, who’s 19 and was diagnosed at birth with HIV, speaks at conferences all over North America (she’s Canadian, but often comes to the U.S.), and says in her experience, kids don’t know too much about HIV, including the concept of “undetectable.” Skye Adrian, the 21-year-old homeless youth-turned-advocate, though, says the majority of youth he comes across in his work are familiar with the concept.
Spencer Kelly, 20, a rising junior at Howard, works with the Grassroot Project, which places student athletes in schools around DC to lead a multi-week sex-education program. Kelly taught about 12, mostly black and Latin seventh and eighth graders one period a week for eight weeks at Meridian Academy last spring semester.
“When we said, ‘Does anyone know what PrEP is?’ They were like, ‘The blue pill?’,” recalled Kelly. “Some of their family members or people that they know are part of the LGBT community. It was great to see that they are aware of someone identifying as non-heterosexual.”
Being adjacent to HIV can go a long way to provoke youth enlightenment. The aforementioned Kaiser Family Foundation study found that “nearly three times as many Black youth, and twice as many Latinos, say HIV/AIDS is an issue that concerns them personally as compared to whites.” Wimbley cited the Health Belief Model, a tool used to help predict health behaviors, to say that perceived susceptibility “allows people to realize the severity of the issue and how it can knock on their front or back door.”
“If I were to look at black MSM who are out, they don’t necessarily have to be sexually active, but involved in some way on a community level, there is a higher knowledge about undetectable and PrEP and HIV regimens because they are more likely to encounter someone who is HIV positive,” added Wimbley.
“The thing I see that’s really beautiful and inspiring is that when LGBT youth are in community with one another, and they do have a sense of safety within their own community, their ability to not only want to learn more and understand about sexual health and become empowered around their health, they also become very invested in each other’s health,” said Bridget Hughes. Being a visible member of a community is a major weapon against harm, but, like HIV itself, being out is not necessarily a priority for youth who are merely trying to survive.
“That only happens when they’re able to be in community with one another and have some degree of stability and safety,” added Hughes. “It’s easy to do sexual health education in that context. It’s not easy to do it when you’re the one gay kid in a class, or you’re not out, or you were just called a faggot and now you’re in sex ed class. That’s not a context where we can do real, effective work. The reality is most LGBTQ young people on the planet are not at Hetrick-Martin Institute. They’re out there on their own.”
Invincible or Inevitable?
Complicating the youth perception of HIV is the invincibility complex associated with young people.
“The more they’re on meds, the more they’re tired of doing it and they’re also young and invincible,” said Dr. Demetre Daskalakis, deputy commissioner for the Division of Disease Control at the New York City Department of Health & Mental Hygiene. “You could go down the list: cystic fibrosis, diabetes. You name it. They all have the same story: ‘I don’t want to do this ‘cause I’m fine.’”
Josh Bruce told me about a kid he counseled who went a year without getting treated after testing positive for HIV.
“He kept saying, ‘I’m busy with school,’” said Bruce. “It got to the point where I told him, ‘There’s no point in you going to school, there’s no point in getting a college degree if you don’t go see a doctor.’ I think when I got real serious with him, finally it clicked.”
But other extreme ways of thinking about HIV are common in youth, too.
“We always talk about the sense of invincibility,” explained Dr. Uri Belkind, director of the HOTT Program, which serves youth at New York’s Callen-Lorde Community Health Center. “Speaking amongst colleagues, we were seeing more this sense of inevitability—[young] MSM just waiting to becoming infected. Being terrified of getting tested, being terrified of just knowing, ‘This time it’s going to be positive.’”
This is but a trend visible in some youths—every expert I talked to said youth mindset is too broad to be able to make accurate generalizations.
“I really don’t believe that because I’m gay or because I’m black and young that means I’m going to get HIV,” said Skye Adrian. “It’s just that, I feel now that I know that the particular target community it’s uprising in, I know I’m at a higher risk of getting HIV if I have unprotected sex. For me, that means I need to be a lot more careful.”
But There’s Hope
New York is one example of a place where new HIV infections in youth are going down. For example, in 2011, the city saw 825 new diagnoses in the 13-29 age group. By 2015, that number was at 670. New York City Department of Health & Mental Hygiene’s Daskalakis calls New York state “a wonderland of opportunity to be able to access HIV treatment and prevention,” with a variety of programs like some mentioned here, an aggressive PrEP promotional campaign, and the ability to access sexual health resources with discretion. (With that said, Daskalakis reports that the group with worst viral suppression in NYC are adolescents.) Daskalakis contrasts such accessibility with Southern town he recently visited, which he declined to name, where the Department of Health, a crucial spot for sexual health tests and treatments, was surrounded by churches. That could be prohibitive, if a person can even get to the testing center at all—there are plenty of people affected by HIV in the rural south, for example, who have no means of transportation and are effectively stranded.
And earlier this year, New York state expanded its minor-consent laws, which allow at-risk youth to start taking PrEP without needing their parents’ permission. Leonard said there are only about 10 states in the country (including California) where this is law—otherwise it’s up to jurisdictions and health departments as to whether they allow youth to consent to STI prevention.
Of course, as bad as things are in some regions, the replacement of the Affordable Care Act with a program that would leave over 20 million Americans without insurance would be positively devastating in a variety of ways, including the realm of HIV.
“Insurances covering trans health services has been a huge, huge step because now our patients are actually invested in getting medical insurance,” said Callen-Lorde’s Dr. Uri Belkind. It makes sense—jumping through bureaucratic hoops to prevent a disease may be too abstract an experience for some youth to have the patience to endure. The immediacy of needing hormones and doing what it takes to get them, though, is a far more concrete experience of cause and effect.
Deontez Wimbley runs a program that consistently educates 15 teens in the metro Atlanta to be peer-health educators, including instances of informal contact (so if they overhear a misconception about sexual health on the bus, for example, they speak up to correct it). These kinds of conversations are important for youth who are, more oftentimes than not, having them in non-medical settings. Furthermore, youth may feel more comfortable talking to their peers about sexual health than adults, who often speak to them in a condescending manner that doesn’t given them enough credit for their own lived-in experience.
The brave teens I talked to for this piece have been galvanized into activism as a result of their experiences with or adjacent to HIV. “A lot of what happened during my homelessness was a result of not knowing what resources were out there for you to go to get stuff,” said Skye Adrian. “A huge part of why I went into this job was to be that point of contact person I would have needed when I was going through the same thing.”
By sharing his life in his VoxAtlanta essay, Kaleb Anderson has already watched his influence manifest. “A friend texted me yesterday and said he went to get tested because he read my story,” he said. “I realize that I’m an inspiration for a lot of people and a lot of people around me.”
Ashley Murphy has watched attitudes soften as a result of living openly with her status, smashing stereotypes in the process (“When people think about HIV, they don’t usually think about an 18-year-old white girl from Canada,” she said in an interview last year).
“I don’t even have to tell a lot of people I have HIV,” she said. “A lot of people, I meet them and they’re like, ‘We should follow each other on our social media!’ And if someone follows me on Instagram, in my bio, it says, ‘Born HIV positive.’ There’s really no secret to be had.”
Such was the case with Murphy’s current boyfriend, who’s also 19 (but HIV negative). It wasn’t until after they started dating that they discussed her serostatus. He didn’t know much about HIV but was “fine” with it. His mother, though, was not. Murphy’s boyfriend pushed back, told his mother he was going to be with Ashley, and his mother educated herself.
“That shows people can change, they can grow, they can learn,” said Murphy, who spends a large portion of her life as a speaker facilitating that change, that growth, that knowledge.
“I’m very grateful I have HIV,” she told me. “I don’t know a life without it, but I don’t want to know a life without it. My life is great. I’m very healthy, I have a great support system. There’s nothing I can really complain about.”
Illustration by Jim Cooke.