By Hilary Beard
Black AIDS Institute, via George Curry Media
DURBAN, South Africa – With all the talk about HIV-related health disparities, no group can make a stronger case than transgender men and women.
Almost 50 times more likely to acquire HIV than any other adults, transgender people form “the very heart of the global HIV/AIDS epidemic,” says Dr. Chris Beyrer, president of the International AIDS Society and co-chair of AIDS 2016. “They are the most heavily burdened of any of the key populations.”
This week, transgender leaders from around the world gathered at the first trans pre-conference to the International AIDS Conference (AIDS 2016) to shed their “invisibility.”
In the pre-conference session titled “No More Lip Service: Trans Access, Equity and Rights NOW!”, trans activists challenged donors, NGOs, CBOs and others in the AIDS movement to center trans people, protect trans human rights, improve access to quality health care, and ensure the resources follow the disease.
Globally, 19 percent of transgender women have HIV; no data is available for trans men. Yet though highly visible in their communities, trans people are “invisible in most research and data collection,” states a report by the IRGT: A Global Network of Transgender Women and HIV. The missing data proves deadly in efforts to understand and respond to HIV/AIDS among trans people. Donors don’t allocate funds to end AIDS among those who statistically don’t exist.
As if not being counted weren’t bad enough, what little data exists often categorizes trans people as MSM.
“HIV has often been ignored or we’re mentioned with the MSM community,” says Blossom, a Black trans woman (BTW) living with HIV. “We are not MSM, we are trans women; we are a totally separate community.”
Abhina Aher, chair of the Asia Pacific Transgender Network, agrees.
“We are not men; we are transgendered women, and we need the resources, the strategies, and the data that would really count our numbers,” she explained.
Activists say they want what so many others take for granted – the right to be counted.
Earlier this year, the Transgender Law Center published a groundbreaking study, “Positively Trans,” on trans and gender non-conforming people living with HIV/AIDS (PLWHA). The research underscored the exceedingly difficult conditions under which most trans people live.
For instance, 65 percent of American trans women made less than $23,000 per year; more than 40 percent had been jailed at some point. Respondents described problems with hormone therapy and side effects, mental health care, personal care, ARVs; HIV-related, housing and employment discrimination as well as discrimination in public accommodations, among other difficulties. Most had acquired HIV five years after changing their identity to trans/gender nonconforming, a reality that underscores their vulnerability to HIV.
“Our medical systems are not equipped to deal with trans issues,” said Aher. Consequently, that prevents many trans PLWHA from accessing care and treatment.
“A lot of literature created does not have us in mind, does not speak to us when we go into the healthcare facility,” says Dee Dee Ngozi Chamblee, 55, of Atlanta, who was diagnosed positive at 27. “Anything that does not look like it pertains to me, I’m not going to pick it up. I’m not going to read it and I’m not going to get the message that’s being targeted for my community.”
African Americans in this group suffer disproportionately. A study of 253 Black trans women (BTW), found that, among those who had at one point had had a male partner, 38 were HIV positive and half were unaware of it. Those who didn’t know their positive serostatus were more than twice as likely to have experienced physical assault or incarceration and were almost three times as likely to have experienced intimate partner violence within the past year than their HIV-negative sisters. Half were depressed, 42 percent were homeless, 24 percent were abusing more than one substance and 19 percent were engaged in sex work.
“They are poor; they are hungry and the predators are waiting to put them in compromising high-risk situations, where they’re forced to choose between eating or performing that sex act. It’s a catch 22 – you’re going to be hungry or you’re gonna have HIV,” says Chamblee.
Like so many others, the transgender community wants to be self-reliant.
“We can solve our own problems,” Aher says. However, for that to happen, donor organizations, NGOs, CBOs, and other organizations must allow trans people to lead in their unique ways.
“Our leadership may vary from what you’re used to in an organizational structure,” explains Octavia Y. Lewis, 35, who leads gender-related programming at the The Hetrick-Martin Institute, which serves LGBTQ youth in New York City. “You are subjecting us to your standards without understanding that to get to your meeting, some of us could have been murdered just for walking down the street; others may not have had any food and had to jump the turnstile, which could have caused them to be arrested; others may not have had a roof over their head or access the information you were trying to disseminate.”
Dee Dee Chamblee, founder of LaGender, an organization in Atlanta that offers “solutions not punishment for people just trying to survive,” expressed similar sentiments.
“We are often exploited because of our desperate situation. That pits us against each other and creates competition,” she said. “Often there are people in jobs that we should have, who are not as invested because they are not living the experience. Then there are privileges – whether you’re White, a trans man, have access to resources, or have mother and a father who accepted you. All these things come into play when you bring a group of people together and should be addressed.”
In response to the dire statistics and to give voice to transgender people, during “No More Lip Service,” Greater Than AIDS showed clips from the Empowered: Trans Women and HIV video series.
“It’s time for you to stand in your entire truth. You’ve already shared your story and struggles of other things; why not this?” Blossom, who had recently appeared on Caitlyn Jenner’s [formerly Olympic gold medalist Bruce Jenner] show, but did not publicly disclose her HIV-positive status, said to herself before recording a video for the Empowered campaign. “This campaign helped open me up and be that inspiration for someone else who might be going through the same thing.”
In a session on the power of storytelling, Chamblee and Lewis showed short films and spoke of the healing they experienced as they told their life stories.
“My friends were dead and I was waiting to die, but after seven years I didn’t. I said, ‘Brush off the flowers and the dirt; it don’t look like I’m going nowhere,'” recalls Chamblee. “So I started asking Spirit, ‘Why was I dealt these cards?’ The more I asked, the more Spirit started doing miraculous things. When you find out that Spirit loves you, your whole universe changes. So I asked, ‘What am I supposed to do?’ And it said, ‘Tell them that I love them.'”