A quick look at the HIV/AIDS epidemic
by Gretchen P. Kenagy, Ph.D., MSW
In 1996, Newsline magazine devoted a section of its April issue to “AIDS in the Transgender Community.” HIV-positive transgender women, all of whom had been sex workers at some point in their lives, were profiled. Nora, a peer educator and substance abuse counselor for the Gender Identity Project at the Lesbian and Gay Community Services Center was asked the following with regard to HIV/AIDS services: “How do you think transgender people fit into the big AIDS picture?” She had this to say:
“There is invisibility. People don’t think about transgender people in the picture of AIDS. In [Greenwich] Village, for years, for decades there were transexuals, male to female, which is what I’d like to talk about—the Village has always had tons of them. Basically on every block lived one or a few of them. Slowly, the AIDS epidemic came up, and it engulfed everyone. I can tell you that now that I’ve been living here; there is nothing, there is hardly anything.”
The word invisibility has been used repeatedly to describe transgender people in the midst of the AIDS epidemic. Too often, they have been missing from HIV prevention efforts, left out of or denied treatment options, avoided in HIV/AIDS research, and discounted in HIV surveillance. Many have literally disappeared in death, victims not only of AIDS, but of societal misunderstanding and indifference.
I have been working as a researcher, educator, advocate, and friend to the transgender community for 12 years. I began this journey by studying HIV/AIDS among transgender people in Philadelphia. It used to be that every conversation about transgender people included the question: What does transgender mean? The transgender movement has made great advances in securing civil rights for transgender people and, in the process, has educated Americans on what it means to be transgender. Questions remain, but now, most people seem to be familiar with the term. I have always liked the definition my trans-activist friend wrote in 1997: “…gender-identity is the manner in which we think of ourselves, our internal conviction about being men or women, male or female, masculine or feminine (and both or neither).” I may have added confusion rather than clarity here. This quote says “gender identity” and I am attempting to describe the term transgender. It seems that the recently acquired familiarity I mentioned may still need elaboration.
The language used to describe the term transgender is constantly changing and no single definition can wholly capture its meaning. Despite this, a common set of terms and definitions does exist. “Transgender” encompasses gender identity and gender expression. Gender identity describes the gender with which people identify. Gender expressions are the activities and behaviors people use to express their gender identity. While not all transgender people identify their gender as male or female, two gender identity categories, also called gender vectors, have been widely used by transgender people and in the transgender literature. Male-to-Females (MTFs) are people whose birth-assigned gender is male, but whose gender identity is female, and female-to-males (FTMs) are people whose birth-assigned gender is female, but whose gender identity is male.
It is important to be able to define transgender in order to understand transgender and HIV/AIDS. So, what do we know about the impact of HIV/AIDS on the transgender community? We know a little. What do we know about HIV infection and HIV risk among transgender people? We know a little. How have we done with regard to addressing HIV/AIDS among transgender people? The answer, simply put, is not well enough.
Since the late 1990s, many needs assessment studies have been conducted in U.S. cities and locales including Atlanta, Boston, Chicago, Houston, Los Angeles, Minneapolis-St. Paul, New York, Philadelphia, Washington, D.C., and San Francisco. Together, the findings from these studies paint a picture of HIV/AIDS among transgender people and the picture, especially among the most vulnerable within the community, is bleak.
The needs assessment studies have consistently found high levels of HIV infection among male-to-female (MTF) transgender people, particularly MTF sex workers. High HIV infection rates among MTFs were found across the country. The lowest level (4%) was found in Minneapolis-St. Paul. In Chicago and Philadelphia, 15% and 19% of adult MTFs self identified as being HIV-positive. Twenty-two percent of MTFs surveyed in New York and Atlanta were HIV-positive. Higher rates were found in Houston (27%), Washington, D.C. (32%), and San Francisco (25%, 35%, and 47% in various reports). Among a sample of MTF sex workers in Atlanta, 68% were HIV-positive.
HIV-risk factors include lack of or inconsistent use of protection during sex, high numbers of sexual partners, and injection drug or hormone use, including needle sharing. Among MTFs, HIV/AIDS is disproportionately affecting racial minorities, particularly African Americans. Related issues of violence, discrimination, and lack of transgender-specific HIV/AIDS services to prevent and treat HIV/AIDS are contributing to HIV risk and are having a damaging impact on the overall health of the transgender community.
While almost all HIV studies of transgender people include MTFs, inclusion of FTMs in studies is not as common. The limited data shows that, compared to MTFs, HIV-infection levels among FTMs are low (e.g., 2% in San Francisco and 3% in Washington, D.C.). The available data on HIV risk, though, gives cause for concern. For example, a colleague and I analyzed data from two needs assessment studies in Philadelphia and Chicago, which included FTMs, to compare risk for HIV infection between MTFs and FTMs. We found that compared to MTFs, FTMs were significantly less likely to have used protection the last time they had sex and significantly more likely to have engaged in recent high-risk sexual activity. Our findings suggest that FTMs are at risk for HIV/AIDS and we have called for a thorough examination of these risk factors.Transgender people must be counted, not discounted, included, not excluded, in the nation’s efforts to prevent and treat HIV/AIDS.
For several years, there has been talk about conducting a national needs assessment to study HIV among transgender people. This study would be useful as long as it is not in lieu of other research in this area. Because let’s face it, we know that transgender people have many needs when it comes to HIV/AIDS. We need to study the impact of HIV prevention programs, HIV/AIDS medications, and a host of other related issues rather than checking and double-checking that, in fact, transgender people need help. They do.
Of course, conducting research in this area is not an easy task. The political climate over the past seven years has been reluctant to put resources toward stopping the spread of HIV/AIDS in the transgender community. The current political climate appears to be moving toward change and I am hopeful that change will include advances in HIV/AIDS prevention and treatment services for transgender people as well as much needed research. What steps can be taken to do this? Here are a few:
- Include transgender people as a separate category in the CDC HIV/AIDS Statistics and Surveillance system. The CDC combines transgender people with the men who have sex with men (MSM) HIV/AIDS surveillance category. Therefore, there is no way, at the national level, to track HIV/AIDS among transgender people. In addition to limiting knowledge about transgender people and HIV/AIDS, this unfortunate categorization also negatively impacts the HIV funding directed toward this community.
- Target all transgender people in HIV prevention strategies. Prevention messages need to include all transgender people at risk and this includes transgender men.
- Bring more HIV-positive transgender people into care and provide them with top quality HIV treatment regimens.
- Educate physicians and other health care professionals on transgender identity and health.
- Provide transgender-specific HIV/AIDS prevention and treatment services.
- Broaden the scope of research on HIV/AIDS among transgender people. Research on transgender health must move forward to include a broader array of studies including the effects of HIV/AIDS medications and transgender hormonal therapy and evaluation studies to assess program outcomes.
- Increase—significantly—funding for HIV/AIDS prevention, treatment, and research.
Recently, I attended a graduation ceremony. I had the privilege of watching my students walk across the divide from student to professional and begin a new chapter in their lives. I was filled with pride and happiness for their achievements—the ones past and the many that will come.
As the ceremony proceeded, I couldn’t help but think of the transgender people I know who are courageously working to transform society; working to make society safe for all transgender people and to stop the devastating impact of HIV/AIDS in their community. They are truly living out the ambitious calls to change the world put forth by the graduation speakers. I also thought of the transgender people I knew who never had the chance to achieve dreams, like earning a degree, because of HIV/AIDS.
When the graduation ceremony ended, I felt that our work has just started. There are still many transgender people who are vulnerable and at risk. Transgender people must be counted, not discounted, included, not excluded, in the nation’s efforts to prevent and treat HIV/AIDS. We must work to ensure that all transgender people have the opportunity to pursue their dreams and do not fall prey to very preventable obstacles like HIV/AIDS.
Gretchen Kenagy, Ph.D., MSW, is a Senior Research Associate at the American Medical Association and owner of GPK Consulting in Chicago, which offers services including evaluation research, grant writing, and academic presentation and teaching skills for health and human service professionals, academicians, and graduate students in the social and behavioral sciences. Visit www.gpkconsulting.com.