Tyreese Taylor and Roi Johnson sit on the hardwood floor in front of their vogue class in downtown Pittsburgh. Vogue is a dance form defined by poses that a fashion model might strike, combined with confined, yet athletic, movement. It’s as though a catwalk has been crossed with a dance floor. At Project Silk, where the class is held, vogue is a favorite pastime.
Taylor and Johnson are 22-year-old Pittsburghers who came out as gay to each other in middle school and have frequented Project Silk since they were teenagers. Taylor says he can tell Johnson anything without fear of judgment, and Johnson admires Taylor for his courage. The best friends have grown into leadership roles at the center. Run by Community Human Services, Project Silk is a nonclinical health space that provides support for LGBT people of color ages 13-29, as they learn about housing, employment, education, and wellness.
Each Tuesday evening, Taylor is the vogue instructor, and Johnson leads the warm-up. On this night, Johnson spreads out his legs and leans over toward his left foot, instructing the 14 dancers facing him to do the same.
Behind them is the entrance to a computer room. A television, stereo, futon, and black couch are on the other end of the space. The rest of the décor seems to reinforce the tragic reality of Centers for Disease Control and Prevention (CDC) statistics: In the United States, young, homosexual African Americans are more vulnerable to contracting HIV than any other demographic. For all of medicine’s advances in taking on HIV and AIDS, these young people are slipping through the cracks.
Here at Project Silk, a condom dispenser has been affixed to a closet door. Someone has hung on the wall a drawing of an AIDS ribbon wearing boots; posters proclaiming "Testing makes us stronger" and "Born Brave" drape walls and doors.
In 2015, African Americans made up 13 percent of the nation’s population and 45 percent of new HIV cases. And, of the latter number, 67 percent were men who have sex with men (MSM). Allegheny County’s HIV statistics reflect what’s happening nationally among MSM. According to the county health department, men constitute the majority of new infections, and the “risk factor attributed to the greatest number of new HIV cases” is MSM. And here, infection rates among African Americans are almost seven times higher than among people of European descent.
As he stretches to the left, Johnson begins telling the class about the importance of staying limber before dancing, but he stops midsentence when he notices a friend in the front row.
“I said left,” Johnson says. “You went to the right.”
“That is exactly why I failed gym,” the friend says.
The class erupts in laughter, and after a minute, the warm-up continues. In conversation later, Taylor and Johnson say they joined Project Silk to meet other LGBT people. Before Project Silk, Johnson says Taylor was the only gay person he knew.
“[Project Silk] opened up a whole bunch of doors to a whole bunch of other things,” says Johnson, who wants to be a music producer or a nurse someday. (For now, he’s doing a lot of babysitting for family.) “I’ve met new people, found jobs.” Taylor, who aspires to be a journalist, says that frequenting Project Silk also has helped him understand the importance of getting tested for HIV.
Grassroots organizations like Project Silk are integral to AIDS Free Pittsburgh, a public health movement that aims to eliminate new AIDS cases and cut the rate of new HIV cases by 75 percent in Allegheny County by 2020.
Inspired by similar collective impact initiatives in New York and San Francisco, AIDS Free Pittsburgh is made up of 23 groups—government, social service, and health care organizations, as well as the University of Pittsburgh.
Between 2011 and 2014, Allegheny County averaged 128 new HIV infections per year. The highest number of cases during those years, 132, was in 2014.
By 2015, 2,830 people were living with HIV in the county. That year, 57 new cases of AIDS developed, as well as 145 new HIV cases.
“It was headed in the wrong direction,” says John Mellors, chief of the Division of Infectious Diseases at the University of Pittsburgh.
Mellors believes that the epidemic had slipped out of the public’s consciousness. And it’s not just the general public that’s disengaged from the conversation; those at high risk are detached from the reality of the epidemic, as well. “Minority MSM are not connected to major health care institutions.”
So how do you get people’s attention?
“You can’t do it from Scaife 8, overlooking [Petersen Event Center],” says Mellors. “You have to have a grassroots movement. And that’s what AIDS Free Pittsburgh is all about.”
Fortunately, Pittsburgh is not among the 25 U.S. cities with the highest rates of HIV contraction, yet that 2015 spike in new HIV cases was cause for concern. And it motivated Pitt and UPMC faculty to reach out to other Pittsburgh organizations to start the collective.
AIDS Free Pittsburgh launched in late 2015, when UPMC and Allegheny Health Network (AHN) pledged a combined $1.5 million to end the epidemic in the region.
A similar statewide initiative in Washington aims to cut new HIV cases in that state in half by 2020. A global partnership involving the United Nations, called Fast-Track Cities, focuses on eradicating AIDS in certain major metropolises worldwide by 2030.
But AIDS Free Pittsburgh appears to be the only AIDS eradication movement in a city of this size. Organizers believe Pittsburgh can serve as a proof of concept for Rustbelt and Midwestern cities.
Before AIDS Free Pittsburgh, community organizations taking on the epidemic were not always communicating. “And they certainly didn’t want direction from the major health care organizations,” Mellors says. “They’re filling in gaps that aren’t covered by those health care organizations. So, I was pleased with the willingness of people [to join the effort].
“As soon as one institution or entity begins to drive it, it’s not going to work,” Mellors says.
Now the organizations know more about what the others are doing and are aligning their efforts. Julia Och, AIDS Free Pittsburgh project manager at the Jewish Healthcare Foundation, says partnering enables the organizations to build off of what the others are doing: “For example, we know that Pittsburgh AIDS Task Force, Planned Parenthood, and Prevention Point [Pittsburgh] already each have a really robust volunteer base.”
The partners are taking a three-pronged approach to ending AIDS in Allegheny County: HIV testing, treatment, and prevention. HIV testing will be the “fulcrum” for AIDS Free Pittsburgh’s success, says Mellors.
Several entities within the initiative offer free testing. But to normalize testing, you must first end stigma.
When the AIDS epidemic hit America in the 1980s, many were afraid to share a drink with, or even hug, people living with HIV. That fear seems etched into our nation’s psyche.
“There’s even stigma within my generation in 2017,” says Taylor.
According to the CDC, sexually active gay and bisexual men should get tested every three to six months. However, several people interviewed for this article claimed to know of others who were afraid to be seen walking into a clinic.
Physicians can make the problem worse without realizing it, Och points out.
A physician might say, Oh, you don’t need an HIV test, do you? or not offer one at all, Och says. “Yet the routine testing recommendations are for everyone 13 to 64. That’s been a CDC guideline for 10 years. By not following that, health professionals are contributing to stigma.”
Macedonia Family and Community Enrichment Center (FACE), a nonprofit outreach program, is working to end shame around HIV and AIDS throughout the wider African American community here.
Located in the Hill District, Macedonia FACE uses its relationship with the Macedonia Church of Pittsburgh to educate and promote wellness. The organization also takes on other issues like truancy and bullying.
Jane Eastman (not her real name) has been a client of the organization’s support services for years.
In 2006, she moved from New York to a borough outside of Pittsburgh after a bad breakup. Lonely and still reeling from the end of the relationship, Eastman had a one-night stand with an acquaintance. Six months later, after donating to the Blood Bank, she received a call from the Health Department. She thought it was strange that they wanted her to come in and talk.
Learning that she had HIV depressed her for a couple years. “I thought it was the end of the world,” Eastman says. It took her more than a year before she gathered the courage to tell her mother and daughter. It didn’t get any easier when more people found out. “The whispers,” she says. “That’s pretty hard to deal with.”
While struggling with depression, Eastman began taking antiretroviral drugs: four in the morning and three at night. And then she sought counseling at Macedonia FACE. Through one-on-one sessions and group meetings, her confidence grew. She became friends with other people living with HIV and slowly realized that, with antiretroviral medication, being HIV-positive is no longer a death sentence.
Mellors, who holds Pitt’s endowed Chair for Global Elimination of HIV and AIDS, calls antiretroviral therapy “a miracle in itself.” And he says the goal of no new AIDS cases by 2020 is feasible.
“If you’re infected, you should not develop AIDS,” he says. “You should get treatment long before you develop AIDS.” Some patients have viral loads so low that HIV can’t even be detected unless they stop taking medication. Eastman now takes three pills a day and might be able to drop down to just one soon. She’s in a relationship and expects to watch her granddaughter grow up.
Sometimes people still accuse her of having AIDS. One time, at a party, the host demanded she drink out of a paper cup and eat off a paper plate. “The stigma is still there because young kids need educated on it,” she says.
Ushers and pastors at Macedonia Church wear AIDS ribbons, and earlier this year, for National Black HIV/AIDS Awareness Day, Macedonia FACE produced a short video featuring leaders from African American churches throughout the region. The production, which was shown to more than 20 congregations, urged people to “Get educated. Get tested. Get involved. Get treated. Get talking,” to normalize the conversation around HIV/AIDS.
Reverend Richard Wingfield, of Unity Baptist Church in Braddock, Pa., was featured in the video, and he says his congregation’s reaction to viewing it was positive. “The stigma is a reality in this area,” Wingfield says. “[The video] helped. I think what also would help is . . . watching it every couple of months, just as a reminder.”
Infectious disease highlights how intricately humans are linked, yet building connections seems to be one of AIDS Free Pittsburgh’s biggest challenges.
Doctors, for example, may want to intervene, but they might not be clued in to what some young LGBT people are experiencing in their day-to-day lives. Consider this: between 20 and 40 percent of homeless youth are members of the LGBT community.
“People are literally couch-surfing through transactional sex. Or any kind of transactional service they need to provide to get basic needs, like housing and food. And that’s happening every night,” says Project Silk’s director of youth programs, Jess Netto.
As Netto sees it, part of her job is bridging a chasm between two worlds—health care institutions and young LGBT people. Project Silk has a youth advisory board, and Netto schedules meetings involving its members, including Taylor and Johnson, and health care providers from AIDS Free Pittsburgh. Taylor says these are productive meetings. A doctor might talk to them about health insurance, and Taylor and his friends might share ideas about how to reach LGBT youth. “It’s good to have your voice heard,” Taylor says.
Ken Ho, a physician and assistant professor of medicine at Pitt, is Project Silk’s medical director. He has attended Project Silk events, and he says speaking to its members has helped him understand why some young people don’t go to a doctor.
“It can be something as simple as, for example, I don’t like it because I’m a transgender woman, and I’m called by the wrong name in the waiting room,” says Ho.
“That’s really important. It may seem like a small thing, but it can send a strong message to someone experiencing health care for the first time.”
Note that transgender people carry a disproportionate burden of new HIV cases—in 2013, the number of new infections in that population was three times the national average. Transgender women—i.e., people who were assigned male gender at birth but identify as women—are included as part of the CDC’s MSM statistics. This is controversial, and the CDC has recommendations for changing data-collection methods to better serve this group.
There is a pill you can take to stave off HIV. It’s called PrEP (pre-exposure prophylaxis).
AIDS Free Pittsburgh offers Ho, who is on the organization’s board, a broader platform to build awareness about PrEP and other methods of prevention.
According to the CDC, taking PrEP once a day can reduce the chances of contracting HIV through sex by more than 90 percent. Ho started a PrEP clinic at UPMC in 2013, and he is conducting clinical trials evaluating long-acting injectable PrEP, as well as topical PrEP. (For five years, Ho has also been medical director of the Pitt Men’s Study—part of a larger study funded by the National Institutes of Health—that has been following 3,000 men to track the epidemiology, virology, immunology, and pathology of HIV since 1984.)
PrEP is meant for anyone at a high risk for contracting HIV. Yet it’s controversial because of concerns that people will stop using condoms while taking PrEP. Also, the cost—$1,300 a month—is steep.
Mellors says that PrEP is highly effective. He’s adamant that people who are at risk need to take it: “By highly effective, I mean 90 percent. If we had a vaccine that was 90 percent effective, [the epidemic] would be over.”
An AIDS Free partner program headquartered at the Graduate School of Public Health trains health care providers throughout the Mid Atlantic on HIV related issues, including prevention strategies like PrEP.
Yet, “A lot of the people who are at risk don’t have insurance,” Ho says. AIDS Free Pittsburgh has set aside funds to provide PrEP to people who are uninsured.
Gilead, the company that makes Truvada—the brand name for PrEP—helps fill this gap, as well, with a program that delivers three-month’s worth of pills to those who apply. “You can fill out paperwork and renew it and get it again,” Ho says. “But it doesn’t cover the cost of the doctor visits and the lab work that you need.” AIDS Free Pittsburgh is building a program so that clinics can bill the initiative for these costs too.
Taylor calls PrEP a “game-changer,” and he predicts AIDS Free Pittsburgh will be successful if it “just keeps doing what it’s doing.”
He says that most of his friends at Project Silk take PrEP. And Johnson is such a fan of the drug that he posed for an ad promoting its use that ran on the side of area buses. Taylor and Johnson have stable living situations, though. Not everyone they know is so lucky.
“Taking a pill daily is difficult if you don’t have a place to store your things,” Netto says.
The professionals at Macedonia FACE would agree with Netto. In a recent gathering of the FACE team, heads nod as a program manager describes how stigma around HIV/AIDS and the high infection rate inside the African American community are pieces of a larger problem: