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CDC revises surveillance to target transgenders
Provider insensitivity a barrier to interventions
In response to recommendations for collecting more HIV data from transgender people, the Centers for Disease Control and Prevention is revising the national system for reporting HIV cases to capture sex assigned at birth and current gender identity.
"This will improve the likelihood of accurately identifying diagnoses of HIV infection among transgender people," the CDC noted in an update on the complex issue recently posted on the web. (http://1.usa.gov/nmOWBT) Transgender communities in the United States are emerging as a high risk group for HIV infection, the CDC reported.
The term gender identity refers to a person's basic sense of self, of identifying as male, female, or some other gender (e.g., transgender, bigender, intersex). Transgender refers to people whose gender identity does not conform to norms and expectations traditionally associated with a binary classification of gender based on external genitalia, or, more simply, their sex assigned at birth. It includes people who self-identify as gender variant; male-to-female (MtF) or transgender women; female-to-male (FtM) or transgender men; many other gender nonconforming people with identities beyond the gender binary; and people who self-identify simply as female or male. Gender identity, gender expression, and sexual orientation are separate, distinct concepts, none of which is necessarily linked to one's genital anatomy, according to a recent CDC web post.
CDC is developing an HIV-related behavioral survey to monitor current HIV-related risk behaviors and prevention experiences among transgender women. In addition, the CDC is currently collecting information on gender identity in its HIV testing programs. To respond to a shortage of proven behavioral HIV prevention interventions for the transgender community, CDC funded researchers to develop ground-breaking interventions for transgender people. Data from this research will be available later in 2011. In addition, the CDC has funded organizations to adapt proven behavioral HIV prevention interventions for use with transgender people. Adapted curricula and supporting materials and technical assistance for implementing agencies are available. CDC-funded capacity building assistance (CBA) providers help community-based organizations (CBOs) serving transgender people to enhance structural interventions such as condom distribution, community mobilization, HIV testing, and coordinated referral networks and service integration. For example, through the YMSM and YTransgender CBO Project — CDC currently funds prevention programs for transgender youth of color through the Prevention Program Branch.
"Because surveillance data for this population are not uniformly collected, information is lacking on how many transgender people in the US are infected with HIV," the CDC noted. "However, data collected by local health departments and scientists studying transgender people show high HIV positivity."
In particular, data from CDC-funded HIV testing programs show high percentages of newly identified HIV infections among transgender people. In 2009, about 4,100 of 2.6 million HIV testing events were conducted with someone who identified as transgender. Newly identified HIV infection was 2.6% among transgender persons compared with 0.9% for males and 0.3% for females. Among transgender persons, the highest percentage of newly identified HIV infection was among blacks (4.4%) and Hispanics (2.5%). More than half (52%) of testing events with transgender persons occurred in non-clinical settings.
In New York City, from 20052009, there were 206 new diagnoses of HIV infection among transgender people, 95% of which were among transgender women. Approximately 90% of MtF and FtM people newly diagnosed with HIV infection were black or Hispanic. Newly diagnosed transgender people were more likely to have been in their teens or twenties than their non-transgender counterparts. Also, among newly diagnosed people, 50% of transgender women had documentation in their medical records of substance use, commercial sex work, homelessness, incarceration, and/or sexual abuse as compared with 31% of other people who were not transgender.
Findings from a meta-analysis of 29 published studies showed that 27.7% of transgender women tested positive for HIV infection (4 studies), but when testing was not part of the study, only 11.8% of transgender women self-reported having HIV (18 studies). In one study, 73% of the transgender women who tested HIV-positive were unaware of their status. Studies also indicate that black transgender women are more likely to become newly infected with HIV.
Many cultural, socioeconomic, and health-related factors contribute to the HIV epidemic and prevention challenges in US transgender communities, the CDC observed. Identifying transgender people can be challenging. Using gender alone is not enough because some people in this community do not self-identify as transgender. Using the 2-step data collection method of asking for sex assigned at birth and current gender identity increases the likelihood that all transgender people will be accurately identified. It is important to avoid making assumptions about sexual orientation and sexual behavior based on gender identity as there is great diversity in orientation and behavior among this population, and some identify as both transgender and gay, bisexual, or lesbian. The Institute of Medicine has recommended that behavioral and surveillance data for transgender men and women should be collected and analyzed separately and not grouped with data for men who have sex with men (MSM).
High levels of HIV risk behaviors have been reported among transgender people. HIV infection among transgender women is associated with having multiple sex partners and unprotected receptive or insertive anal intercourse. Additionally, many transgender women reported high levels of alcohol and substance use. These substances can affect judgment and lead to unsafe sexual practices, which can increase HIV risk. The few studies examining HIV risk behaviors among transgender men suggest some have multiple male sex partners and engage in unprotected receptive anal or vaginal intercourse with men; however, no studies have reported links between these behaviors and HIV infection among transgender men. Nonetheless, these are established HIV risk behaviors in other populations.
Discrimination and social stigma can hinder access to education, employment, and housing opportunities. In a study conducted in San Francisco, transgender people were more likely than MSM or heterosexual women to live in transient housing and have completed fewer years of education. Discrimination may help explain why transgender people who experience significant economic difficulties often pursue high-risk activities, including commercial sex work, to meet their basic survival needs. Social stigma also may explain why some transgender people engage in unprotected receptive intercourse with their sex partners. Qualitative data suggest that some transgender people who fear sex partner rejection or need their gender affirmed through sex may engage in unprotected receptive intercourse. High rates of depression, emotional distress, loneliness, and social isolation have been linked to suicidal thoughts and suicide attempts by transgender people. Therefore, interventions that address multiple co-occurring public health problems— including substance use, poor mental health, violence and victimization, discrimination, and economic hardship—should be developed and evaluated for transgender people.
Health care provider insensitivity to transgender identity or sexuality can be a barrier for HIV-infected transgender people seeking health care. Although research shows a similar proportion of HIV-positive transgender women have health insurance coverage as compared with other infected people who are not transgender, HIV-positive transgender women were less likely to be on antiretroviral therapy. Additional research is needed to identify factors that prevent HIV in this population. Several behavioral HIV prevention interventions developed for transgender people have been reported, generally involving relatively small samples comprised entirely or primarily of transgender women. Most have shown at least modest reductions in HIV risk behaviors, such as fewer sex partners and/or reducing unprotected anal sex acts, although none have involved a control group.