Transgender and HIV: Risks, Prevention, and Care
Until recently, the impact of the HIV/AIDS epidemic on the transgender community has been largely ignored. In 1992, the University of Minnesota Program in Human Sexuality received a grant from the American Foundation for AIDS Research to develop one of the first transgender-specific HIV prevention programs. Ever since, we have received requests for program materials from communities around the world. A network of targeted prevention efforts emerged. To disseminate findings and share expertise, we invited representatives of these efforts to contribute to this special issue of the International Journal of Transgenderism.
In 1994, Minnesota's transgender community participated in the state-wide HIV community planning process. Focus groups identified several risk factors: Invisibility, poverty, shame, low self esteem, loneliness, and sharing needles for hormone or silicone injection. Many saw acceptance, even for one night, as worth the risk of infection. The chronic lack of HIV prevention efforts targeting the transgender community was seen as supporting a denial of risk already widespread in the community. Myths about HIV that predominate in society as a whole are reflected in the transgender community in unique ways. For example, some transexuals believe a change from a gay or lesbian to a heterosexual role, or a change from male to female, provides them with protection from HIV, without any concomitant behavior change (Minnesota Department of Health, 1994).
These and other transgender-specific HIV risks and prevention needs received national attention during a community research development meeting held in conjunction with the 17th National Lesbian and Gay Health Conference/13th Annual AIDS/HIV Forum in 1995. Hosted by the Program in Human Sexuality, this meeting brought together community representatives, researchers, and funders to define HIV prevention priorities. The transgender working group recommended building trust between communities, researchers, and policy makers; multi-site, epidemiological studies of HIV prevalence; prevention programming not limited to sex workers; empowerment; and international collaboration. Transgender participation in this meeting also exposed the limitations of existing HIV prevention and research in general. Transgenders challenge oversimplified notions of sex, gender, and sexual orientation that have defined established epidemiological categories of risk and corresponding interventions. Sex and gender are not binary; sexual orientation and behavior are not synonymous. Identities and behaviors are not static; they fluctuate over time and across situations. Understanding transgender identity and sexuality forces us to move beyond these limitations, appreciate the context and complexity of HIV risk, and develop more effective interventions for all.
Assessment of the needs of HIV positive transgender persons revealed inadequate psychosocial support and a lack of transgender knowledge and sensitivity on the part of health providers and prevention workers (Bockting, Robinson, & Rosser, 1998). The Gender Identity Support Services for Transgenders (1995)--a Boston-based project founded by transgender activist Rebecca Durkee--developed a curriculum and trained providers. The Harry Benjamin International Gender Dysphoria Association--a professional organization of providers and researchers--formed a task force on HIV/AIDS and surveyed gender clinics and surgeons regarding treatment services for HIV positive transgenders (Avery, Cole, & Meyer, 1997). Findings showed little uniformity in how providers approach HIV positive transgender clients. The Benjamin Association adopted the following resolution ensuring HIV-positive transgenders access to sex reassignment services: "The availability of sex reassignment surgery should not be denied solely on the basis of blood seropositivity for blood born infections (such as HIV, hepatitis B or C, etc.)" (Robinson, 1997).
The silence around transgender and HIV has broken. Here, we present reports on the first generation of transgender HIV prevention, research, and care initiatives. We thank the editors of the International Journal of Transgenderism, Friedemann Pfaefflin and Eli Coleman, for giving us this opportunity, and acknowledge the assistance of Brunhild Kring. We dedicate this special issue to the memory of Lou Sullivan, founder of the community organization now known as FTM International, who died of AIDS in 1991.
The first article by Inciardi, Surrat, Telles, and Pok illustrates how marginalization impacts the effectiveness of HIV prevention programming for transvestite sex workers in Rio de Janeiro, Brazil. The study assessed HIV prevalence, drug use, and sexual behavior of 100 travestis, and shows how their identities intersect with HIV risk. Prevention needs to take participants' unique self-views and sexual roles into account. Even though introduction of the female condom appeared promising, safer sex instructions seem insufficient to address the complexity of travestis' HIV risk.
Medical anthropologists Kammerer, Mason, and Connors contend that neglected health and social service needs of transgenders affect their HIV risk. Through ethnographic research in Boston, Massachusetts, the authors identified misperceptions of providers that interfere with care. They recommend HIV prevention strategies that contribute to diminishing the social stigma that shape both transgenders' HIV risk and their difficulties in obtaining appropriate services.
Reback and Lombardi report on the experience of serving transgenders in a community-based harm reduction program in Hollywood, California. The authors examined the role of sex work and substance abuse in HIV risk. Sex work was associated with greater substance use, greater numbers of both exchange and non-exchange sexual partners, but also with higher use of condoms. Thus, the authors conclude that in their sample, sexual HIV risk of sex workers may be lower than that of non-sex workers. They recommend that future studies explore how the legal, social, and economic situations of transgender persons contribute to marginalization and participation in sex work.
Clements, Wilkinson, Kitano, and Marx assessed the level of HIV risk behaviors and access to services among transgender individuals in San Francisco, California. Unprotected sex, sex work, and injection drug use were common. The authors expose the multiple barriers that transgender people face in accessing HIV prevention and health services. High levels of unemployment and homelessness demonstrate the need for job training, education, and housing placement. Participants called for hiring transgender persons to develop and implement targeted services.
As part of a larger study in Quebec, Canada, Namaste identified salient issues for female-to-males: A lack of educational materials accounting for their bodies and sexualities; denial of risk; poor access to needles for hormone injection; low self esteem; and administrative practices that exclude female-to-males from social services. Namaste challenges us to consider how socio-political factors contribute to transgenders' vulnerability to HIV infection. She also explains how research can facilitate social integration of transgenders through active involvement and collaboration.
Hein and Kirk present the results of their collaboration in offering a series of HIV prevention workshops for Enterprise, a support group for female-to-male transexuals of different sexual orientations and stages of gender transition in Greater Boston, Massachusetts. Going beyond information-based strategies, their approach uncovered psychosocial and sexual issues of participants. Participants explored the roles and meanings of particular sexual behaviors in the context of their identity development. The workshops therefore focused as much on sexual health as on HIV prevention.
Bockting, Rosser, and Coleman discuss the process of bringing together various segments of the transgender community in Minneapolis/St. Paul, Minnesota to develop targeted HIV prevention education. Community members were actively involved in every aspect of the program. The community's distrust of researchers, practitioners, and policy-makers surfaced; working through the associated conflicts deepened mutual respect and solidified future collaboration. The article illustrates how university-based gender programs can facilitate community building and empowerment.
Warren reviews the HIV prevention efforts of the Gender Identity Project in New York City, a peer-driven project that relies on transgender people to help each other to assess community needs and create support mechanisms. The Project produced a video focusing on HIV prevention in the context of community building, which includes transgender and transexual persons, crossdressers, and drag queens talking frankly about their transgender-specific HIV risks. Other prevention strategies include a multicultural and multi-identity peer outreach and education team, tailored safer sex kits, and services that address psychosocial issues affecting HIV risk.
Wilson reports on his findings in performing sex reassignment surgery for HIV positive transexuals in Detroit, Michigan. The author has provided this service since 1988 when the ethics committees of the two medical centers in which he operates deemed it unethical to withhold surgery because of HIV positivity alone. Kirk follows with recommended guidelines for selecting and preparing HIV positive patients for genital reconstructive surgery, and discusses how to manage these patients postoperatively. Finally, Kirk discusses her experience of implementing these guidelines at the Transgender Surgical and Medical Care Center in Pittsburgh, Pennsylvania.
Together, these reports reflect the gap between the extent to which the AIDS epidemic has affected the transgender community and the availability of appropriate and sensitive prevention and care services. The social stigma transgender people face compounds their HIV risk through neglect, low self esteem, hunger for validation, rejection, employment discrimination, and disenfranchisement. At this time, we do not have an adequate response to the enormity of this problem. On the positive side, the transgender community has been able to mobilize and empower itself and has found a voice that no longer can be ignored. Transgender HIV prevention services now do exist and are growing. Health professionals are becoming more aware and knowledgable. Transgender HIV prevention research contributes to a deeper understanding of the context of HIV risk. We call on transgender and nontransgender people alike to work together to promote our health and wellbeing.
This issue of the International Journal of Transgenderism is dedicated to the memory of Lou Sullivan: one man who made a difference.
Walter Bockting, Ph.D. & Sheila Kirk, M.D. Guest Editors
Bockting, W.O., Robinson, B.E., & Rosser, B.R.S. (1998). Transgender HIV prevention: A qualitative needs assessment. AIDS Care, 10(4), 505-526.
Gender Identity Support Services for Transgenders (1995).
The invisible community: Transgenders and HIV risks: Training curriculum. Boston, MA: Beacon Hill Multicultural Psychological Association.
Minnesota Department of Health (1994), AIDS/STD Prevention Services Section (1994).
Minnesota comprehensive HIV/STD prevention plan 1995-1996. Minneapolis, MN: Minnesota Department of Health. Robinson, B.E. (Ed.). (1997).
HBIGDA resolutions. The Harry Benjamin International
Gender Dysphoria Association Newsletter, 7(2).