City of Secrets
To reduce HIV among African-American men who have sex with men, researchers have learned to rely on the men themselves.
Tavon Vinson just did not have time for this call.
The popular gay 18-year-old, class president of Edmondson-Westside High, an actor, an athlete … his life was too vital, too full, to have the gears suddenly stripped from an engine that loved running at full throttle. And yet the voice on the other end of the line was attempting to do just that. A doctor, an old friend, a comforting face that normally Tavon enjoyed seeing. But now, in this moment, in this context, he was disembodied, his tone somber, his words halting yet imploring. It was as though the cell phone was discharging volts of fear along with the message:
“Tavon … you need to come in.”
“My test, MY TEST! Tell me, TELL ME!” pleaded Tavon.
“I can’t. Not over the phone. Please, just come in and we’ll talk. It’s OK.”
“Look, I have a track meet to run tomorrow. It’ll ruin my focus if I don’t know. Tell me. TELL ME!”
This wasn’t a negotiation. The young man was desperate, consumed by dread. He’d always protected himself during sex. And he went for regular HIV tests. And he’d had no partners at all since his last test, so what was going on?
To the doctor, the cause wasn’t the immediate concern. The result was. It came down to compassion versus clinical guidelines. In the end, compassion won out. The doc couldn’t string this young man along, not for one more minute. And so, in a sentence, he forever changed the young man’s life.
“Tavon. The test. It … was positive.”
On the other end of the line, silence. Then screaming. Then cursing. And through it all, like a mantra against the torrent of pain, the doctor repeating, again and again, “I’m sorry, Tavon. I’m sorry. I’m sorry.”
The phone call ended. Tavon, in a daze, instinctively went to the place that had always brought him comfort. Across the field from his home was the track. As the sun set, he sat cross-legged on the infield, surrounded by the gravel lanes and chalked lines that had brought him glory.
And he cried.
And he cried.
The numbers have remained consistent and horrifying through eight years and three separate research cycles by Bloomberg School scientists and colleagues from the Maryland Department of Health and Mental Hygiene.
According to the Behavioral Surveillance Research Study (BeSURE) sampling completed last December, 48 percent of African-American men who have sex with men (MSM) in Baltimore City are HIV positive. That’s far higher than the average of 28 percent found in the 20 other cities participating in the National HIV Behavioral Surveillance in 2008. (Researchers in Baltimore, like those in the other cities, recruited most MSM study participants from clubs and venues that might attract people who engage in higher HIV risk behaviors.) The prevalence is even more troubling when compared to the two other cohorts in the BeSURE sampling; African-American MSM surveyed in 2011 were infected with HIV at a proportion more than three times that of injection drug users, and eight times that of heterosexuals considered at high risk for infection. Baltimore’s MSM community is, in one sense, a microcosm of a global issue; a recent Lancet article authored by Bloomberg School faculty noted that in countries like France, Australia, and the U.K., the overall HIV rate is declining in populations with the exception of one group: MSM.
In Baltimore, a key challenge for reducing HIV among the MSM community is testing. More than two-thirds of those surveyed with HIV had no idea they were infected prior to testing in the study. That means many African-American MSM are not receiving critical HIV care services, says BeSURE principal investigator Danielle German, PhD ’09, MPH. “It is also a challenge for preventing HIV transmission to partners,” she says. BeSURE participants “get the full scope of pre- and post-test counseling, referral services and linkage to care. That aspect of our activities is as much of a priority for us as the data gathering.”
BeSURE is working on the problem because there’s little doubt that knowing one’s status greatly lowers transmission risk. The transmission rate for people who know their status is 2.7 percent, versus 10.4 percent for those unaware, says David Holtgrave, PhD, an HIV researcher and chair of the Department of Health, Behavior and Society (HBS). But the appalling infection rates don’t seem to be attracting larger community or public health attention. “If the rate of infection in the African-American inner city male population was the same in medical doctors in Baltimore,” says Carl Latkin, PhD, an HBS professor, “it would be considered a national emergency and a huge amount of attention and effort would be put into combating it. And from the inside, there’s a lack of effective grassroots organizations that have demanded that the city address it as a public health issue.”
That lack of community cohesiveness is perhaps the natural outcome of how MSM are seen by those in Baltimore’s African-American culture. To delve into that culture, to understand the stigma that in many influential corners is still attached to homosexuality, is to glimpse the nature of the challenge facing public health workers trying to encourage MSM to know their status and protect both their health and the health of the community.
At 49, Carlton R. Smith is old enough to remember when HIV was a death sentence. That it’s not anymore—at least for those who get tested and treated—is a message he conveys via the organization he founded in 2002, Baltimore Black Pride.
Consider the picture that Smith paints of the rejection a young, gay African-American male often encounters in the inner city. “It comes some out of the churches,” says Smith. “They preach out of the book of Leviticus that you’re an abomination. People who don’t have an understanding of the [religious] context hear that word and think they’re a blight on the planet. Sometimes, there’s a community sense of, ‘How dare you!’ You’re taught as an African American that you need to be a man and create and take care of your family. And now you’re going to come out and say you’re what? You’re gay? A homosexual?! Well now you’re useless to the community. You can’t produce children. Like a preacher said, ‘two spark plugs can’t get it together.’ So now you’re seen as disassembling the family and taking away from the community.”
Some of the factors that impair self-esteem are not unique to the African-American community. But racism, poverty and high unemployment are endemic in the inner city. Access to resources—and even public transportation—is an additional barrier to testing and care. For many young men, the hurdles to determining one’s status, let alone accessing care, are too discouraging to consider.
“When I talk to a lot of young people, they’re not worried about testing,” says activist Keith Holt, 26, who is HIV-negative. “They’re worried about living … ‘where am I staying at tomorrow? Will I have something to eat?’ It’s about what’s important to you at that moment. With HIV, it’s not something you think is affecting you right in the here and now, even though it is.”
And just as easily, discouragement can turn to anger, with deadly effects. “For people who have been kicked out of their house for being gay, or positive, or they can’t get insurance or medication or don’t know how to get it, they’re afraid they’re going to die, they’ve been through a lot,” says one HIV-positive community activist. “When you’re not getting help, and you have no one to talk to and you’re dealing with it by yourself … there’s a reason that people go crazy and have unprotected sex: They just don’t care anymore.”
And so the wildfire continues to rage.
For those on public health’s frontlines, spreading the test-and-treat message among Baltimore’s African-American MSM community is no easy task. That may be due to a lack of urgency on the part of younger MSM, who haven’t seen their peers die from AIDS in the numbers that older MSM have. Another barrier is that the African-American MSM community is so fragmented that an outreach effort or a single ad campaign is unlikely to reach all MSM.
“The conundrum of programs since I’ve worked in them here, in Seattle and New York, is that when we say we’re having a ‘gay’ event, we get men who identify as gay and it’s usually white or Asian gay men who make a certain amount of money,” says Anthony Morgan, an HIV health educator with the Lighthouse, a Bloomberg School project that conducts community-based disease reduction research and education in Baltimore. “And when you look around the room you notice that maybe there’s one or two Latino guys, and maybe a black guy. So do you say we’re just having a black men’s program, and see who is engaging in a certain type of sex? Do you say ‘MSM’ and risk that no one will connect with it? Or is that term too objectifying; does that just reduce you as a human to where you put your penis?”
There’s no shortage of groups that fall under the MSM banner. There are the out and open, who may well be in the minority; these include the club-goers who were recruitment targets of BeSURE’s cohort, and members of the ballroom scene, where “houses” compete in lavishly costumed and elaborately produced shows reminiscent of French haute couture runways.
But many African-American MSM lead fully or semi-closeted lives: professionals, college students, bisexuals, men on the “down-low” who meet regularly for sex with men in a tight-knit group that is never mentioned elsewhere. These groups are far harder to reach. In some cases, the reticence to discuss homosexual sex is so pervasive, it’s not even acknowledged by men who engage in sex with men as part of their work.
“One focus group we did was with men who sold sex,” says Latkin, an HBS professor. “And one guy brought in [male prostitutes] from The Block where they sold sex. What I found fascinating about that discussion was that here were six guys who knew each other, and nobody ever mentioned having sex with a man; they might say ‘a client,’ or ‘somebody,’ or this and that, but even in a group that was completely aware of each other’s behaviors, there was still a high level of stigma, of even talking about [MSM] for that group.”
Given this ongoing reluctance to self-identify sexual preferences or which subgroups one identifies with, behavioral interventionist Karin Tobin, PhD, says the best course might be to focus on education. She and Latkin have been piloting a program called Unity in Diversity, which targets African-American MSM (including MSM who also sleep with women) to educate them about their status, risk behaviors such as frequency of condom use and, most importantly, to encourage them to pass that information on to their social networks regardless of how they self-identify.
Tobin reports that three months after the seven group meetings, participants reported a reduction in the number of male sex partners and an increase in condom use compared to those in the control group, which had just a single risk-reduction counseling session. But what also caught her ear was how participants didn’t readily verbally identify with being gay or part of an MSM subculture. “In our experience with guys in Unity in Diversity, if we don’t bring it up, they’re not bringing it up. I’m not going to force a label on anyone,” says Tobin. “I think folks come in waiting for that shoe to drop, for you to put a label on them. And even if someone were to think, looking from the outside, that a person identifies as gay, he may never use the term, ‘I’m a gay man.’”
Activist Adrian Ross, 26, agrees that a simple, broad test-and-treat message is probably best: “Take a message targeted to the ballroom community. What is a D.L. [down-low] or ‘straight-identifying’ [MSM] going to know about the ballroom scene? Nothing. What he does, he does in the dark, fast and quick.”
Whether Tobin’s efforts have a long-term effect on Baltimore’s MSM HIV crisis remains to be seen, but what all sides agree on is that any inroads will need tremendous community buy-in. Identifying and gaining the trust of the key stakeholders is where the game is really at. MSM are taking leadership positions in the community for their friends and other young men who need support.
In Baltimore, being educated, tested and treated for HIV is a hit-or-miss proposition. The city’s school system barely touches upon the subject. For the inner-city African-American MSM community, comprehensive, one stop test-and-treat shops sensitive to their issues are hard to find. Single-focus, free clinics can be so obvious that to be seen there is the scarlet-letter equivalent of saying, “Oh … you, too.”
It’s no wonder Latkin says, of the overall academic, city and state public health push to engage the African-American MSM community in HIV awareness, there’s no coherent plan. “There’s inadequate monitoring of what’s going on in the community. We don’t know when people drop through the cracks,” says Latkin. “If someone is treated at Hopkins but then goes to University of Maryland, we don’t know, they may be lost. Maybe there’s too much testing in the community and not enough linkage to care. Or maybe one group has been inundated with [“get tested”] messages every day and another hasn’t gotten a message in months. It’s completely fragmented, how we approach it, and this leads to huge inefficiencies and lack of effectiveness.”
Acting Baltimore City Health Department deputy commissioner Patrick Chaulk, MD, MPH ’89, says the city is doing its utmost to provide testing and care. As in other U.S. cities, individuals who receive a positive diagnosis at a Baltimore City health facility are referred to a care provider. “But we take it a step further; if you get diagnosed we have same day referral in which we drive you to a provider, wait for you to get everything done, and then drive you home,” says Chaulk. “We do two of those visits in the first six months [after an HIV diagnosis]. I don’t know of any other city that does that.”
Still, with Baltimore missing a major grassroots African-American MSM-oriented organization like Washington, D.C.’s Us Helping Us, the movement to bring a message of hope and cohesion to those most at-risk has landed squarely on the shoulders of those with the most energy and awareness: the city’s African-American gay youth.
Before he could become an AIDS activist, Tavon Vinson first had to survive the emotional plunge following his diagnosis. Vinson and his doctor believe he was infected by a contaminated needle during a neighborhood cleanup. Regardless of how HIV got into his body, he still had to deal with it. He was nearly driven to suicide by the isolation he felt, but Vinson rallied, thanks in large measure to being invited to a gathering of positive-status youth in Denver by Melody Lynch, an outreach coordinator at Hopkins’ Harriet Lane clinic.
There, Vinson discovered that his status wasn’t a reason to be distraught, that all around him were hundreds of vital young people who could even joke about their status while taking care of themselves. At a talent show there, he read a poem he’d written. It would change his life. The poem, which chronicled his experiences post-diagnosis, won him national recognition and led to a book of poems on lifestyle and HIV titled Positively Me.
Vinson, who was part of the club scene when he first came out, recalls that HIV hung over the crowd like a specter, acknowledged but unspoken. “We were aware, but we didn’t talk about it,” says Vinson, now 22. “And if people were positive, many weren’t going to tell,” and risk being ostracized from having relationships.
Looking back, Vinson says his support system was cobbled together almost serendipitously. There was a relative born with hepatitis C who made sure to get regular liver biopsies, refrained from drinking and told potential partners that he had the infection. “Before he had sex he always told his partners. So if he could handle it, I figured I could.” And there was the older female teacher who, learning of Vinson’s status, said, ‘Baby, I’ve got diabetes. You gotta take care of yourself, I’ve gotta take care of myself, otherwise we’re both gonna die!’”
Now, Vinson has turned his poetry into conversations with concerned youth. His favorite part? Breaking down myths about what the “face” of HIV looks like. In the middle of a PowerPoint presentation, he’ll suddenly turn serious and warn the audience that he’s about to show them what someone with HIV looks like. “I’ll say, ‘Now, if your stomach is weak you should probably leave.’” Then Vinson hits the button, and there’s his handsome, smiling, healthy-looking face, eating an ice cream cone. “Cracks ’em up every time,” he laughs.
Keith Holt has used his grin to reach at-risk MSM as well. It can be seen on posters for the campaign the 26-year-old helped come up with, “Have Balls, Get Tested,” a Baltimore City Health Department outreach effort aimed at the city’s ballroom community, of which Holt is a part.
To Holt, the idea of a community-gathering spot in Baltimore for young gay African-Americans is a key toward building a safer, healthier community. “When I came out at 17, I realized right then there was no support, no place for me to go. There was Project Olympus, part of HERO [the Health Education Resource Organization, which lost its funding]. I’d like to start something like that again. Some place people know they could come, chill, afterward put on some music and vogue, get to know your peers, and talk about what you’re going through. It’s amazing there’s no place like that here now. You know, the world is coming along in accepting people and their sexuality. I would think the support here would have increased versus decreased.”
For Adrian Ross, activism was triggered by simple observation. “I saw people I was hanging out with all coming up positive. A dear friend became positive, and he never knew until he had full-blown AIDS. It changed my life, and got me out in the community to get people tested,” says Ross. He admits that it was only a few years earlier that he knew nothing about HIV. “They don’t speak of HIV in health classes,” he says of his high school education in Anne Arundel County. “They talk about ways for you not to get people pregnant. It should be mandatory that you take ‘HIV 101’ in high school.”
Ross has found his message is best conveyed through Facebook, where he receives at least two or three messages a week from scared youth seeking education, support and testing information. Ross, who has worked for several Baltimore HIV initiatives, says that many organizations are out of touch with how youth truly interact with social media. “They need to change or they won’t reach who they want to target,” he says. He’s also been shocked to find that some federally funded city HIV-testing programs he’s worked with have turned their back on the MSM community, perhaps looking for other HIV at-risk groups more willing to be tested. “In this city, with this kind of [MSM] work, a lot of people aren’t really dedicated, in my opinion. The last organization I worked at … I was told ‘I’m sick of you targeting the MSM community,’ even though MSMs have the highest risk.”
Taken as a group, these young MSM advocates hit on some common themes: Show commitment. Build trust. Have compassion. Give us professionals who can relate to our world.
It is a message folks such as Danielle German, Karin Tobin, Carl Latkin and Anthony Morgan are hearing loud and clear. By identifying and engaging young, well-connected advocates—think of it as finding the tipping point for MSM at risk for HIV—Karin Tobin says the prevention message can spread organically, from within the community. “We are all embedded within naturally occurring social networks; we are not only influenced by everybody we know, but we are influencing them,” says Tobin. “And so if we can train anybody within this network to educate others, they’re going to influence somebody else; it may well have a broader impact.”