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Wednesday, December 1, 2010

Curbing "an epidemic within an epidemic"

By Joseph Erbentraut -

Elizabeth Rivera-Valentine of TransCEND
Elizabeth Rivera-Valentine of TransCEND
As HIV/AIDS service providers commemorate World AIDS Day, many see Dec. 1 as an opportunity to once more make their case for much-needed resources to address the disproportionately high rates of HIV/AIDS among transgender Americans.

While the available data has been somewhat limited in activists’ attempts to determine the precise prevalence of what’s often described by an "epidemic within an epidemic," recent reports have shed led on the grim reality of HIV/AIDS among trans people. The National Transgender Discrimination Survey’s Report on Health and Health Care, released by the National Center for Transgender Equality and the National Gay and Lesbian Task Force last month, reported an HIV infection rate of 2.64 percent-four times the rate of the general population-among more than 7,000 respondents.

24.9 percent of African Americans respondents said they are positive. Sixty-one percent of respondents with HIV said they have engaged in sex work. And 91 percent of those who said they are positive identified themselves as male-to-female or otherwise gender non-conforming.

While NCTE and NGLTF’s report is widely recognized as the largest of its kind, activists stress much more research is still needed to more fully understand the unique concerns facing trans people. Most information on the topic, until this point, has been based on smaller, less representative samples and anecdotal evidence; while larger HIV/AIDS studies have mostly lumped trans people (most commonly trans women) in with men who have sex with men (MSM)-if they are included at all. Findings of HIV infection among trans people have varied wildly from 14 to 69 percent.

The Centers for Disease Control and Prevention is in the beginning stages of a study that will survey trans people in a dozen cities around the country. The agency is set to launch the study next year, but the CDC’s most recent trans-specific data dates back to 2005.

The current dearth of quality and representative research data serves as an obstacle to the funding needed to support trans-specific programming and prevention messages. "Without that data, you can’t really apply for grants because you can’t show a demonstrated need to do more research or create programming for this target population and that’s another barrier to really starting to address the problem," said Pete Subkoviak, policy coordinator at the AIDS Foundation of Chicago.

Public health agencies in Chicago and across Illinois have begun to use more trans-inclusive HIV intake forms. Subkoviak stressed, however, these are not common in other parts of the country-and trans people with HIV are often left in the dark.

Health care system "a minefield of discrimination" for trans people
Beyond the dearth of trans-specific HIV/AIDS data, broader discrimination against trans people presents a far larger obstacle to curtailing the epidemic among this disproportionately vulnerable population. In the same NCTE and Task Force report; 28 percent of trans people reported being harassed in medical setting; 28 percent also said they had postponed medical care due to being disrespected or discrimination; and 19 percent reported medical providers refused to treat them all together. Fifty percent of respondents reported their medical providers seemed uninformed about trans-specific care and had to "teach" them.

Michael Silverman, executive director of the Transgender Legal Defense Education Fund and head of the Transgender Health Initiative of New York, described the health care system as "a minefield of discrimination for transgender people," leading many trans people to go elsewhere for medical care. He described the situation as a case of "government neglect."

"A clear message is sent by the health care system," said Silverman. "We’re not welcome here, this system does not understand us and we should rely upon ourselves to figure out how to get what we need in ways other than through the mainstream health care system. And that’s a real problem in a population that has high rate of HIV infection."

As a result of discrimination, a widespread distrust of many health care providers and economic barriers; some trans people turn to the black market to access hormone and silicone injections to aid with their transitions. And as a result, they don’t hear trans-specific prevention messages on needle sharing and other risky behaviors.

In order to reach those who do not use the traditional health care system, grassroots efforts have sprung up in many larger cities to provide them the services and care they need.

TransCEND, an affiliate of the AIDS Action Committee of Massachusetts, is one such program. The organization’s services-led "by trans girls for trans girls"-include access to a variety of housing, medical and legal resources as well as a drop-in space with public Internet access and a lounge area allowing trans people to connect with each other.

Elizabeth Rivera-Valentine, community organizer for TransCEND, said many of the trans people who utilize the program are caught in a "spiraling lifestyle" of risk factors linked to difficulty in locating permanent housing, affordable, culturally-competent medical care and employment. As a result, many turn to sex work as a means of survival.

"A lot of the girls we see end up out on the street," said Rivera-Valentine. "The shelters are turning them away because they’re not supporting their gender identity. They’re turned away from employment opportunities for the same reasons."

Boston resident Dee Borrego is one such client.

She was homeless and struggling to come to terms with her gender identity when she tested positive five years ago. Borrego, 26, saw her diagnosis as a death sentence, but she credits TransCEND with connecting her to other trans people with HIV and allowing her to be open about her status.

"TransCEND and other HIV organizations here provided a framework for me to understand what it would be like to live with the disease," Borrego said, stressing the need for more compassion for those with HIV. "Everyone living with this disease is just like everyone else on this planet. We’re all human beings who experience the same emotions, the same highs and laws, joys and disappointments and I think people having more compassion and understanding for us is something that is really going to strengthen our community, our country and our planet."

Trans people with HIV often "swept under the rug"
Despite the myriad of concerns trans people face, securing funding from other LGBT and HIV/AIDS service providers remains difficult. TransCEND and other programs are not particularly common. And as evidence to this point, Chicago’s nationally-acclaimed LGBT health center Howard Brown, which provides many services specifically targeted at low-income and trans people, will need to close by the end of the year unless it closes a $500,000 funding gap.

"There are organizations and groups that say they’re there for us, when in reality they are not," said Rivera-Valentine. "We are a community that is more often than not swept under the rug. We are the taboo community. People have a tendency to be ashamed of our community and unless they’re given a directive that they have to deal with this, they’re not going to. We’ve been struggling for years to be recognized as a community within a community, one that’s in dire need of support."

As activists consider what changes could be made to better address HIV and broader health-related concerns facing the trans people, most say the solution can start relatively small-changing care providers’ intake forms to be more trans-inclusive and other actions. Other potential solutions include using social media to spread trans-specific prevention messages.

Most importantly, however, health advocates said it is up to trans people themselves to advocate for change; demanding equal, discrimination and harassment-free access to health care. Silverman stressed they "need to stand up, be counted and demand what we need."

"We face a lot of discrimination from the people who control the levers of power," said Silverman. "While some organizations advocate for the needs of this community, we face an uphill battle. But we will create institutions that are responsive to the needs of the transgender community and work with existing institutions to meet those needs."

Rivera-Valentine agreed.

"I think a lot of people in the community struggle with the internal dialogue of ’If I step up will anyone hear my voice?’ But people do hear and do listen," said Rivera-Valentine. "It takes people with the courage to step up and say, ’You know what, I’m not going to take this anymore.’ That’s when people start to listen."

And while Borrego still struggles to find stable employment and encounters some discrimination, she said she feels blessed to have found housing that allows her to focus on her health. Borrego does not regret living openly with HIV. And she hopes her openness will help educate other trans people who may remain apprehensive to address the epidemic within their midst.

"I get to live openly and honestly about my life without any self doubts," said Borrego. "I think within the transgender community, as in any community, there is a real sense of invincibility. The feeling is that this is something that will happen somewhere else, to someone else, but it’s still very common."
Joseph covers news, arts and entertainment and lives in Chicago. 
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