Trans Women Battle Rising Rates of HIV Infections

by Shaun Knittel

EDGE Media Network Contributor

Monday June 24, 2013

Transgender women are 49 times more likely to have HIV compared to other populations. That makes them one of, if not the fastest, growing population of HIV-positive people in the country. Both facts are virtually unknown to the American public. The reason? Transgender women have been mostly left out of the HIV narrative.

In fact, they've been incorrectly lumped into other categories, such as gay men, or men who have sex with men. According to Miss Major, a 70-year-old transgender woman of color, and the executive director of TGI Justice Project, a San Francisco-based advocacy organization that fights for the rights of transgender, intersex, and gender-variant people who are in prison or have served jail time, most HIV data collection methods don't distinguish between transgender and nontransgender women.

A recent article published on HIV Plus Magazine's website showed how systematic mislabeling and ignorance are a grim daily reality for many trans women.

Patricia (not her real name) said she knows that grim reality all too well. A little over five years ago she was living as an out transgender M to F in Salem, Oregon, and life, for the moment, was good. In 2009 she tested positive for HIV and everything changed. Depression set in, brought on by guilt, and her world went dark.

"I was so angry at myself. I thought, 'Here you are [Patricia], age 34, living with the body and gender identity you've always known was you and you go and screw it all up by getting HIV,'" she said. "I felt guilty because I had always advocated for protected sex and yet I wasn't practicing safe-sex myself."

The depression was intense and for a moment, however fleeting it lasted, Patricia said she contemplated suicide.

"That is what jolted me. This whole idea of harming myself scared me," Patricia said. "I immediately began to read about Seattle and how they have one of the largest trans populations in the nation. I booked a plane ticket the next day."

A 2009 National Institutes of Health report found that nearly a third of transgender Americans are HIV-positive. The study also indicated that many transgender women may not know their HIV status due to a series of cultural, social and economic barriers. Patricia is one individual who took drastic steps to find her way around these barriers.

"I don't regret moving to Seattle," said Patricia. "It helped save my life, eventually."

Once in Seattle, Patricia says she sought out the help and support from established trans groups and supportive organizations in order to find out her next steps as an HIV-positive trans woman.

"Needless to say, although some people were supportive, I still ran into discrimination," she said. "Only it wasn't so much to do with just my gender identity, it was stigma around being HIV positive, black and trans."

Transgender women of color are at a greater risk for HIV infection than their white peers. The NIH study noted that African-American and Latina transgender women had the highest infection rates; among those transgender women of color surveyed, more than 56 percent of black trans women were HIV-positive, and Latina trans women had an HIV infection rate of 16 percent.

Patricia said she has decided not to disclose her status because "it's hard enough living trans and black in America. The last thing I need is for everyone to know that, too."

Data Collection Overlooks Gender Identity

"Transgender women have been contracting HIV since the beginning of the epidemic, but the data collection has not always allowed for capturing gender identity and more often than not transgender women were lumped in with MSM or men who have sex with men," Gunner Scott, director of programing at Pride Foundation, told EDGE. "Additionally, there has been very little specific outreach, prevention strategies, or public education specifically for transgender women or gay and bisexual transgender men. What may be occurring is more accurate data collection and a growing awareness of the need for services and prevention efforts targeted for transgender women and also for transgender men."

Scott said he believes there has been a concern within the transgender community, "but there is also little to no transgender-specific materials or education about HIV/AIDS or STIs until recently and even now it is still not enough or take into account being sex positive or targeting non-transgender partners of transgender women and men."

Marsha Botzer, former co-chair for the National Gay and Lesbian Task Force and longtime transgender activist, told EDGE, "Some individuals may hold back on any intimacy at all until their identities match their presentations, becoming active without education around safe sex. We always need more conversation in the community, more education."

Botzer said she does see awareness and concern in the community, for example "peers discussing HIV/AIDS in support systems and actively encouraging each other to act safely."

"We know people who are ill, and we know the pressures of life and survival that can contribute to infection," said Botzer. "Not all of us are as educated as we should be, but there have been -- to my knowledge -- attempts to create care and education structures for transgender people almost from the beginning of the epidemic."

Botzer said that the structures come and go, depending often on the energy and drive of a small group of people, and noted that, Ingersoll has brought caregivers to groups to speak, and other groups have been active in direct outreach for a long time.

Trans Discrimination Hampers Economic Well-Being

Transgender women often require regular hormone therapy, and many of those who can afford the out-of-pocket expense undergo various forms of gender-reassignment surgery. But with multiple medications necessary already (such as estrogen, which must be taken weekly), HIV-positive trans women are less likely to regularly use antiretroviral medication than are their nontransgender peers. An NIH study indicated that some transgenders feel the HIV medications would interfere with their hormones. In addition, antidiscrimination laws rarely cover transgender women.

"In the majority of the states in the U.S., it's legal to discriminate on the basis of gender identity," says JoAnne Keatley, director of the Center of Excellence for Transgender Health at the University of California, San Francisco. "You can deny a person employment or you can terminate someone who is transitioning on the job merely because they are transgender."

That kind of discrimination has a devastating effect on the economic well being of transgender people. According to a 2011 report from the National Center for Transgender Equality, transgender people were four times more likely than the general population to live with a household income less than $10,000 a year, and more than twice as likely to be homeless. And 90 percent of the 6,450 transgender people surveyed nationwide reported being the target of harassment, mistreatment, or discrimination at work.

Botzer founded Ingersoll in 1977 as a spin-off of support programs held at Seattle Counseling Service. In the early years, the format, focus and mission of Ingersoll was guided by emerging understandings of how personal self-discovery can be facilitated and deepened by group and community work. These ideas, energized by the past example of Ingersoll and the then current work of LGBT and Allied activists, gelled into the fundamental support format still in use today.

Ingersoll was formed when there were few resources available to people who questioned or felt uneasy with their birth assigned gender or with the strictures of gender behavior society enforces. There were few if any doctors or therapists who were trained and supportive. The early mission of Ingersoll included seeking out and training supportive professionals and educating officials about the needs and concerns of the community.

Patricia said her health, at the moment, is in good shape. She wishes she could say the same for employment. She has been out of work for six months and is wondering where a 34-year-old black transwoman could be gainfully employed.

"Ingersoll and many others in our area have worked hard to build a network of educated care providers who are willing to help and be accessible," said Botzer. "But this often depends on the individual providers giving and doing much more than their jobs require, and they do it! This is a pattern I know has been the case for other groups of patients. All the fears and prejudices that can come from not understanding transgender lives are multiplied, especially for people of color."

Shaun Knittel is an openly gay journalist and public affairs specialist living in Seattle. His work as a photographer, columnist, and reporter has appeared in newspapers and magazines throughout the Pacific Northwest. In addition to writing for EDGE, Knittel is the current Associate Editor for Seattle Gay News.