A New Day for HIV

How stigma, fear and race affect HIV outcomes in young men who have sex with men.
by Mac Irvine
“Good morning!” Romel Powell says to a student passing through the hall of Manley Career Academy High School on Chicago’s Southwest side. It’s 2 p.m.—hardly morning—but this is no slip of the tongue. It’s completely intentional, a trick Powell uses to catch you off-guard and get you to talk to him. As an education and prevention specialist for Sinai Health System working in communities with high risk for HIV infection, Powell says starting the conversation is often the hardest part.

It’s the end of May and Powell is finishing his outreach and education duties for the year. Since mid-April he has spent almost every Wednesday in Manley’s cafeteria, where he trades condoms and candy for a chance to educate young men about HIV, AIDS and other sexually transmitted infections. The student body at Manley is 94 percent black, and Powell has never met the only two students here who identify as openly gay. In fact, that low number is part of the challenge.

Powell is here to educate high-risk populations, and young men who have sex with men, particularly young black MSM, are at an increasingly high risk. But these men don’t necessarily define themselves as gay—and when HIV prevention literature is aimed toward gay men, they can be hard to reach.

Rates of HIV are growing fastest among MSM from ages 18-29, according to a recent report by the Chicago Department of Public Health. In 2011, 17.2 percent of men in this demographic were infected, up 3.5 percent in three years. These results were similar to the Centers for Disease Control’s national findings.

Despite the rising rates of infection, MSMs generally don’t feel at risk for infection and don’t get tested as frequently as the CDC recommends. But as Powell says, nothing’s black or white when it comes to sex. Many HIV prevention and outreach specialists agree that the confluence of racial tensions, stigma and fear explain both low testing and high infection rates.

We’d first arrived around 9:30 a.m. and assumed the position—seated behind a table in the small classroom attached to the corner of the cafeteria. Powell placed a stack of sexual health surveys, a few dozen condoms and three pens on the table in front of us. When the freshman lunch hour began at 9:52 a.m., incoming students barely noticed us. Powell rummaged through his black rolling Samsonite briefcase until he found two empty Snickers bags. He set them on the table and we waited. Within 45 seconds, 10 young men were in the room heckling him about the quality of the free condoms.

“Is this a magnum?” one said, inspecting the LifeStyle wrapper.

“This is the Kyng condom,” Powell said. “It’s cheaper than a Magnum and it fits the exact same size.”

The young man scoffed at the suggestion. Without missing a beat, Powell opened the wrapper and unrolled the condom over his fist. “Everybody thinks that LifeStyles are broke-ass condoms,” Powell said as he opened and closed his hand. The latex didn’t break. “So why do you think you can’t fit a LifeStyle?” he said.

These unfiltered conversations continued for the next few hours. Students filled out the surveys assessing their risk of HIV in exchange for candy and condoms. Some asked questions about sex and relationships. Others bragged about their sexual escapades. Powell says the hyper-masculine conversations black men have about sex make it hard to identify MSM—not just here in the cafeteria, but community-wide.

“There is an expectation of what a black man is; they’re strong, masculine figures,” he says. “Everything that society expects of a black man doesn’t fit what society expects of MSM.” The difference between the black male identity and the traditional stereotype of a gay man has epidemiological implications for HIV infection, he said.

Back in 1981, AIDS, then called GRID for “gay-related immune deficiency,” was first recognized in the United States as an epidemic among injection drug users and gay men. Three years later, researchers identified HIV as the cause of AIDS, and the first widespread test for HIV was released the following year. In 1987, the FDA approved AZT, the first treatment for the virus.

There’s always been a racial dimension of any official response to the epidemic, according to Dr. Darrell Wheeler, dean of Loyola University’s School of Social Work in downtown Chicago. Wheeler has studied the epidemic for the majority of his career and says it was first considered a white gay man’s disease. Black MSM who didn’t identify as gay saw themselves at low risk for HIV. He argues that this unfortunate disconnect continues.

“For a lot of people, the term ‘gay’ is a sociopolitical term,” he says. “That means you’re going to live in a certain neighborhood, that you’re going to act a certain way, that you’re going to be interpreted as flamboyant.”

Anthony Galloway, prevention program manager at the AIDS Foundation of Chicago, says the prevailing messages about at-risk populations during the early stages of the AIDS crisis overlooked minorities while targeting white gay men. “People saw images of people that didn’t look like them, and so they assumed it wouldn’t impact them in the same way,” he says.

As I spent the day shadowing Powell, I thought about the disproportionate effect of AIDS on young black men, but also how fear and stigma associated with HIV often transcend race. I watched him trying to convince young men at Manley to protect themselves and their partners, and the conversations hit close to home.

As a young gay man myself, I know that young men my age have a high, and rising, rate of infection. As a white gay man, I know my risk is statistically lower than for black MSM. But like so many young people, male and female alike, I’ve had one-night stands and met partners online. The CDC recommends that I test at least twice per year, but before embarking on this story I had never been tested. Testing is critical, of course, in managing HIV if you contract it and in knowing what precautions to take in order not to pass it on.

I’ve been sexually active for almost three years and still avoided testing despite the sex and pro-testing messages that were drilled into my subconscious via education and media. So what exactly stood in my way? In retrospect, I think it was fear – fear of knowing.

Every time HIV came up in conversation among friends or in class, I immediately felt my pulse race. Several times after beginning college, I made plans to attend free testing but always made last-minute excuses and bailed. Fear kept me, like the many community members Powell is trying to reach, blissfully—albeit dangerously—unaware.

I made an appointment to get a Uni-Gold rapid test at Howard Brown Health Center on Chicago’s north side. Because of their speed, ease of use and accuracy, rapid tests, like Uni-Gold, have been an increasingly critical tool for outreach workers since they were first introduced in 2002. I rode the train to the clinic and felt—as cliché as it is—like I was on a roller coaster approaching the top of its first hill all the way to the entrance. When I arrived, I filled out the paperwork and had my test. I anticipated the drop. Less than five minutes later I was called for my results.

I spent those few minutes thinking about the possibilities. If I tested positive, at least I knew and could start treatment. “People are living longer and looking healthier,” as Galloway from the AIDS Foundation of Chicago says. I had convinced myself I would be OK no matter what when my testing counselor read my negative result. Knowing my status was empowering, and I left feeling giddy, but that doesn’t mean I’m in the clear. Regular testing is crucial because my status could change.

Powell’s regular testing helped him catch his infection in its early stages. Like nearly one in five young men who have sex with men, about six years ago, he tested positive for HIV. He recognized that he was among the highest risk group in the country for contracting HIV, but with regular testing and a partner he trusted, the diagnosis came as a shock.

Powell is biracial and grew up in foster care with a “white and racist” mother and a “black and racist” father. As a result, he says he struggled to settle into a racial identity; he identified as Latino for five years and even learned some Spanish because an ex-boyfriend was Puerto Rican. His sexuality was less of a question. Powell says he’s been out as gay since he was 9 years old.

Powell tested in April 2007. He was 21 years old. The rapid tests popular today were prohibitively expensive for widespread use at the time, so he left after having his blood drawn and waited to hear from the center. When the calls came, he ignored them—an easy task for a restaurant chef who drank almost every night after the kitchen closed. (Alcohol abuse is almost three times more common in LGBT populations, according to the National Council on Alcoholism and Drug Dependence.)

On May 8, he finally answered the phone. The counselor asked him to come in immediately.

The following day, he sat in the lobby of the center. He was quickly escorted to a confidential space to hear his results. He says the counselor reading his results was not at all empathetic. “It was just, ‘Oh, you’re HIV-positive. I’m sorry.’ It took a while to set in,” he says. “I think I might have even laughed.”

The rest of the day was a blur. He called his ex-fiancé. He left the center. He broke down in the alley. He pulled himself together. He boarded a southbound Red Line train to Belmont and continued on his day. He boarded a flight to Alaska the next day to work as a chef at a resort.

While in Alaska, his new awareness of his HIV status exacerbated an existing alcohol problem. “Finding out I was positive just gave me another reason to drink,” he says. For three months, he says, he was drunk almost every day. He saw a doctor who monitored his viral load and white blood cell count. His conditions were stable so he didn’t need to go on antiretroviral medication to combat the virus, and he was practicing safe sex.

He returned to Chicago in September 2007 and got involved with the HIV community, volunteering with outreach efforts for agencies on the North Side. His alcohol use continued. At the end of March 2010 he was offered a spot in a clinical trial testing the efficacy of a unique combination of ARVs. “The only question I had was, ‘Can I take my medications with alcohol?’”

The regimen was a constant reminder of his status. Within weeks, he tried crystal meth for the first time. Within six months, he went from smoking to injecting. Within another six he was homeless and staying with his boyfriend. The two became escorts, traveling the nation to turn tricks. “It was a nice way of seeing the county,” he says. He took “zero precautions” to protect himself or his clients. He’d do “anything, anywhere, anytime, anyone.” In 2011, he was in and out of rehab and treatment, on and off of meth and ARVs.

On Jan. 28 of last year, Powell left for a vacation—to rehab. After three months, something clicked. He started working the twelve steps. In August he left rehab and again started volunteering for HIV organizations. In February, he turned this volunteer work into a career when he started working at Sinai Health Systems. Here, his own experience informs his approach to dealing with young men in his outreach work.

Powell says that embracing his race, sexuality and HIV status were essential parts of helping him get clean. He had been using drugs to numb the shame of his past and of being HIV-positive, he said, but once sober he no longer had a choice but to confront these insecurities. In doing so, he gained another tool to help his outreach. Helping young MSM overcome these kinds of stigmas is something he now does every day. Identifying with students and understanding what young black MSM go through helps him build relationships. “If someone is struggling with something I’ll reveal a little bit to let them know they’re not alone,” he says.

Young men’s attitudes toward HIV have changed as the course of the disease, and the availability of treatment, has changed, says Zach Stafford, behavioral research associate at Lurie Children’s Hospital’s Center for Gender, Sexuality, and HIV Prevention. “Young men think, ‘If I get HIV, I’ll just get on the meds,’” he says. Some even see HIV as an inevitable part of their lives, unfortunately. Others fear that a positive diagnosis, if they are open about it, could drive partners, friends or family away.

“Being HIV-positive isn’t something that people always embrace with open arms. When you tell someone that you’re positive, they may stop loving you,” Stafford says.

Still, there are encouraging developments. In 2011, more than 99 percent of MSM surveyed in Chicago had received an HIV test, up from 95 percent in 2008. The number of Chicago MSM who know their status is also increasing.

Identifying early infections is critical for disease control, says Robert Gratzer, HIV testing coordinator and principle researcher at the Center for Gender, Sexuality, and HIV Prevention. But increasing early detection means improving rapid-testing technology, making it more affordable and doing the hard work Powell is accomplishing: making testing for HIV part of a normal conversation.

Young black MSM are more likely to be incarcerated, chronically homeless or live in poverty.  Policies meant to control the spread of HIV should address racial inequality before they can significantly impact disease control, says Loyola University’s Wheeler. “Our interventions ultimately don’t resolve structural barriers,” he says. “The interventions aren’t aimed to change structural factors.”

Powell sees this struggle play out while he talks to students. They brag about not using condoms, having sex with multiple partners, getting “their girls” pregnant. He says they’re showing off a version of masculinity. He insists they take as many condoms as they need, and urges them to protect themselves and their partners from the disease. He can’t change the fact that at least four in five students in this high school are low-income, that only half will graduate in five years, and only six percent meet state testing standards—the types of problems Wheeler says need to be addressed before HIV prevention strategies can make more fundamental strides.

Powell says he hopes to help open up lines of once-closed conversation. “All I can do is give them the tools,” he says. “What they do after is out of my control. I just hope for the best.”

If he does his job well, Powell says, he won’t have a job in 10 years, but he doesn’t see that happening. With the increasing number of new infections in young men, an HIV-free generation may not be on the horizon. But Powell sets a positive example of life with HIV for young, black MSM. He’s almost two years sober, enrolled in classes at DePaul University studying general psychology, back on antiretroviral medication, and in the first months of a new career in social work. When Powell wishes someone a good morning in the middle of the afternoon, he genuinely means it. “It doesn’t matter what day or time,” he says. “It’s always morning in my world.”

Other stories

Tuned In

Jorge Valdivia created a safe space for LGBT Latino youth through public radio.
by Jason Lederman

From The Ground Up

When it comes to educating people on LGBT issues, sometimes politicians don’t cut it.
by Julia Haskins

Finding the T

A trans woman comes into her identity through local activism.
by Julia Haskins

© 2012 Medill Equal Media Project
Medill School of Journalism | Northwestern University
Questions? Comments? Email the editor!