Recommendations for Inclusive Data Collection of Trans People in HIV Prevention, Care & Services

Published: October 17, 2012

What Is the Problem?

Monitoring the continuing spread of the HIV epidemic is essential for determining public health priorities, assessing the impact of interventions, and making estimates of current and future health care needs (Joint United Nations Programme on HIV/AIDS, 2006). Accurate data collection is essential for dissemination of reliable and factual public information and development of meaningful education and prevention programs, and care services. Currently many federal, state, and local agencies inaccurately collect data about individuals’ sex and gender. Most often, only one question is asked: What is your sex? or What is your gender?, and only 2 or 4 options are provided requesting only one choice: Male or Female, or Male, Female, Male-to-Female (MTF), or Female-to-Male (FTM). Today, this method is too simplistic and binary to accurately and effectively collect critical information to assess HIV incidence and prevalence, identify emerging trends, allocate resources, improve health care services, and address service gaps among populations of individuals.

At the end of 2003, an estimated 1,039,000 to 1,185,000 (about 1 in 247) persons in the United States were living with HIV/AIDS, with 24%-27% undiagnosed and unaware of their HIV infection (Centers for Disease Control and Prevention [CDC], 2006; Glynn & Rhodes, 2005; United States Census Bureau, 2008). In 2008, CDC estimated that approximately 56,300 people were newly infected with HIV in 2006 (the most recent year that data are available), and that there has been no significant decline among the yearly incidence of new infections in the last decade (CDC, 2008). One of the fastest growing populations to be infected with HIV is transgender people. In California, publicly funded counseling and testing sites reported that transgender women have higher rates of HIV diagnosis (6%) than all other risk categories, including MSM (4%) and partners of people living with HIV (5%), and African American transgender women have a substantially higher rate of HIV diagnosis (29%) than all other racial or ethnic groups (California Department of Health Services, 2006).

A transgender (trans) person is someone who has a different sex, gender identity, and/or gender expression than the one assigned to them at birth, regardless of their sexual orientation (Cabral, 2007; Sausa, Keatley, & Operario, 2007). Due to assumptions and/or discomfort among health professionals to ask questions about gender identity, trans people are either completely missed and not accurately counted in surveillance methods, or miscounted as MSM (often trans women are incorrectly counted as MSM). In addition, many funders, health departments and government agencies do not even allow for the reporting of trans people as clients and patients, as if they don’t even exist. A recent meta-analysis of 29 studies specifically focused on trans people underscored the alarming rate of HIV prevalence among trans people in the U.S. (Herbst et al., 2008). Overall, 28% of trans women tested positive for HIV, though when asked about their HIV status only 12% self-reported living with HIV. This highlights the extraordinary high rate (about 1 in 4) of trans women living with HIV. The high rate of trans women who are undiagnosed or unaware that they are infected is more than twice the national average (57% vs. 27%) (CDC, 2008; Glynn & Rhodes, 2005; Herbst et al., 2008). The same meta-analysis reported a rate of 2-3% (about 1 in 50) among trans men, though few studies accounted for or focused on the growing number of trans men who have sex with gay and bisexual men (Sevelius, 2007). With regards to incidence of new HIV infections, when data are gathered and reported, incidence percentage rates (adjusted for population size and number of persons testing) among trans women are often the highest rate reported among any population group and in many cases twice that of gay and bisexual men (San Francisco Department of Public Health (SFDPH), 2005 & 2008; Herbst et al., 2008).

Despite these high rates of HIV infection reported among trans women, there is also a concurrent lack of knowledge, comfort, and skills among health and social service providers who work with trans clients and patients (Clements, Wilkinson, Kitano & Marx, 2001; Hussey, 2006; Grossman & D’Augelli, 2006; Nemoto, Sausa, Operario, & Keatley, 2006; Shaffer, 2005). This lack of provider competency has resulted in many trans people avoiding health care services for preventive and urgent/life-threatening conditions (Shaffer, 2005), and trans people having a lower adherence to their HIV medication (Melendez et al., 2005; SFDPH, 2008).

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