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International LGBT researchers come to Pitt to battle HIV-related stigma back home 

"They're working in circumstances that as Americans, we just can't imagine."

To four visiting scholars in Pittsburgh, curing the global AIDS epidemic might have nothing to do with medicine. They're not working in laboratories on the next generation of antiretrovirals, or looking for a breakthrough vaccine. They've been on the front lines of a problem that is at once both more elemental and infinitely complicated.

Stigma.

It's why an engineer-turned-activist from Pakistan, who despite his attraction to men didn't hear the word "gay" until he was 18, is trying to figure out why HIV-positive men in his home country often never seek treatment — even if they know their status. Or why the first person to speak publicly about being HIV-positive in Belize is trying to understand the barriers to HIV-testing there, despite threats of assassination.

"They see the barriers in their work is not giving pills to people, it's getting them to take the pills," explains Ron Stall, director of the Center for LGBT Health Research at the University of Pittsburgh. "We now have the tools that we need to stop the epidemic, but what we don't have are ways to break through the stigma."

Under Stall's direction, four visiting scholars from China, Pakistan, Belize and South Africa are spending the next five months devising research projects to address HIV-related health crises in their home countries. The projects range from understanding the barriers that keep people from receiving care to testing the efficacy of at-home HIV screening.

The program, funded by the Foundation for AIDS Research (amfAR) and hosted by Pitt, is designed to take people who are already part of organizations that are connected to LGBT populations in their home countries, so they can take advantage of that social infrastructure to conduct research.

International scholars meet with the University of Pittsburgh's Ron Stall
  • Photo by Renee Rosensteel
  • International scholars meet with the University of Pittsburgh's Ron Stall (center) to discuss their research. From left: Weibin Cheng, Eric Castellanos, Shery, Liesl Theron

"We get applications every year from people who say, 'There's a price on my head, and if you don't pick me I might die,'" Stall explains. "One of the commonalities of the global HIV epidemic is that it's a very rare country indeed where gay men are not doing worse than the background population. What we're hoping, of course, is that the scholars we're training turn into leaders."

But before they could begin breaking down the stigma that contributes to one of the world's worst public-health crises, they had to first escape it themselves.

Eric Castellanos remembers with a disarming smile the period in her life when she contracted HIV.

She was 20 years old, just a couple years after she'd fled the small, heavily Catholic Belizean town she grew up in, a place where no one seemed to understand — let alone accept — her gender identity. (Though Castellanos sometimes identifies as a man, she says she is comfortable with female pronouns for this story.)

She'd hitchhiked to Mexico City and fallen for a man whom she'd met while volunteering at a hospice care center. But they were growing apart, partly because he was HIV-positive and Castellanos wasn't. "This was my first love," Castellanos recalls, "he was so fearful of infecting [me] with HIV."

Castellanos gave him an ultimatum: "We either have to go our own way or I have to get HIV as well." He eventually agreed to start having unprotected sex, and eight months later, on Dec. 24, 1995, she tested positive.

"It was a conscious act on my part to be HIV-positive," she says. "Love makes you do crazy things."

It's not a story she often shares — "I don't want to encourage anyone to be HIV-positive" — but she says it helps explain how in the seven years since her partner died, she became one of the most prominent activists in Belize and the first to talk openly about her sexuality and HIV status in the media.

Castellanos hadn't planned to leave Mexico. She had mostly bad memories of a childhood in Belize, where her gender nonconformity lead her parents to insist on testosterone injections and took her to a clinic that promised to "cure" her homosexuality. But she'd lost the healthcare she'd gotten through her partner and had little choice.

When she arrived, she began noticing how marginalized the LGBT community was compared with Mexico. There was nothing like the gay clubs she'd experienced there, and "The [HIV] medication I was taking in Mexico didn't even exist in Belize."

The stigma associated with HIV-positive people was immense. "The image people had of HIV was someone in bed dying, which contributed so much to discrimination," Castellanos says. Belize has the highest rate of HIV in Central America, with a prevalence rate of 2.3 percent, and the rate is thought to be much higher among gay and transgender populations, according to amfAR.

Castellanos began devoting herself to reducing the stigma of HIV, laying the groundwork for an organization that would advocate on behalf of the positive population. She started work on a degree in social work (still in progress) and eventually founded the Collaborative Network for Persons Living with HIV in Belize (CNET+).

Though it started mainly as a support group, over the past four years the organization has grown to include everything from condom distribution to a text-message system to remind people to take their medications.

And now, armed with some of the research methods she's learning at Pitt, she's hoping to tap back into CNET+ and survey hundreds of people to better understand what the barriers are to HIV testing in Belize. "It will give us so many tools to work from and design projects to work with the population and make recommendations to the government," she says.

Still, Castellanos isn't expecting progress to be easy. Since she's appeared in Belizean media as an advocate for HIV-positive people, she's received numerous death threats. She doesn't walk the streets alone in Belize — and after pressure from the U.S. embassy, Belizean authorities offer some security.

"As much as I love my country and am so committed to change things there, in the days I've been here, I've had dreams of never going back," she says.

In a country where homosexual acts are outlawed — and, in some cases, punishable by death — Shery isn't afraid to walk in public holding his boyfriend's hand.

"If two men are together and they show romantic affection in public, no one actually gives it a second glance," Shery says of his experience growing up in Pakistan, a culture he describes as "homo-affectionate." "On that front, it's a little more comfortable to live there."

But while they can be affectionate, they can't adopt children, hold property together or risk telling their parents about their relationship. (Shery asked that his last name not be used.)

And since it's expected that "children [take] care of you when you get old," Shery says, "there are no old-age homes. It is scary if you're by yourself. There is no safety structure."

One of the four international scholars at Pitt, Shery has long struggled to reconcile his sexual identity with Islam, his parents and, most of all, himself.

"For 19 years I thought I was the only gay man in Pakistan. I didn't have any friends who were gay. I was a little effeminate; I was harassed in my school a lot — even in the college and university, I segregated myself," the 31-year-old recalls.

Still, Shery landed a coveted well-paying job as an engineer at Siemens/Nokia in Pakistan after college — hating almost every moment of it. He'd begun to meet gay people in Pakistan; his first exposure came at 19, when he discovered online forums where men would arrange to have sex with other men.

"I wasn't comfortable having sex back then," he says, but it was a relief that other people had the same feelings.

After five years as an engineer, he quit, told his parents he got fired, and considered showing up at a meeting for Naz Health Alliance, an organization that provides resources to men who have sex with men, and to transgender people. Even though he worried there would be photos of him at the meeting, and that he'd be publicly outed, he attended.

The organization was just getting off the ground in 2007 as the AIDS crisis in Pakistan intensified. Between 2005 and 2013, the number of people suffering AIDS-related deaths in Pakistan increased fourfold — just one of the problems Naz sought to address.

The organization had enough funding to open six community centers in five cities across Pakistan. It offers snacks and STD testing and serves as "a place where they could mobilize easily without the threat of being harassed," Shery says. It was also a place where he finally felt accepted.

Shery rose through the ranks and says the organization often flies under the radar, which sometimes makes it difficult to do effective public messaging and get HIV-positive people into treatment. In addition to laws against homosexual behavior left by British colonizers, "The hardest is the Sharia law, under which people could even be sentenced to death if they are found having sex outside their marriage ... and gay marriage isn't legalized," Shery explains.

And even among the people who overcome the stigma of getting tested, many people who learn they are HIV-positive are never treated.

That's a problem Shery is trying to address while he's at Pitt. He's designing a study that asks why people who know their status are never treated, which could eventually lead to interventions to interrupt that pattern.

Most of his theories about why people don't get care are broad and anecdotal: "We are doing work, but we don't know how to properly document it, how to publish it, analyze it," he says.

For Stall, the Pitt researcher who oversees each project, a project like Shery's is an example of the program's purpose: to support people who already have relationships with public-health organizations "where they could actually make something happen."

"These are the folks on the front lines, and we're trying to give them some of the tools they need to create data, be able to interpret data, and use the data to be resources in their home countries for the fight against HIV," Stall explains.

Watch Stall interact with the international scholars long enough, and it's clear he has a deep reverence for their research. They're asking fundamental questions about HIV in their countries, to be sure, but they're questions no one else has been brave enough to pursue.

"They're working in circumstances that as Americans, we just can't imagine," Stall says. "Each of [them] are heroes of the AIDS epidemic."

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