The transgender community has been left out of the HIV conversation for far too long. Transgender women are highly affected by HIV, yet we lack proper surveillance data to accurately assess HIV prevalence in this community. Limited evidence shows that the prevalence of HIV among transgender women is in the range of 22 to 28%. Additionally, in a single study in New York City, the Centers for Disease Control and Prevention (CDC) reported that 93% of 234 transgender people who received an HIV diagnoses between 2010 and 2015 were black/African American or Hispanic/Latino. The combination of disproportionate rates of HIV in trans-women and even starker rates in minority-trans populations suggests that transgender people are being left behind in our efforts to end the epidemic. Without a proper understanding of the epidemic among the transgender community, then adequate education, prevention, and treatment become more difficult. Fortunately, this month the National Institutes of Health (NIH) and the CDC took steps to improve upon the weak guidelines and lack of research for transgender populations. 

The NIH formally designated sexual and gender minorities (SGMs) as a disparity population for research purposes. SGM will serve as an umbrella term for “lesbian, gay, bisexual, and transgender populations, as well as those whose sexual orientation, gender identity and expressions, or reproductive development varies from traditional, societal, cultural, or physiological norms.” Despite recent expansion of legal rights and improvements in overall societal attitude toward SGM, these populations still face higher burdens of certain diseases, including depression, cancer, and HIV. According to the NIH, SGMs that live in areas with concentrated anti-SGM prejudice die 12 years sooner than SGMs living in accepting communities, demonstrating that marginalization and discrimination lead to poorer health outcomes. This new designation will increase the NIH’s ability to study unique health challenges faced by SGM populations, including HIV, in addition to researching how to close gaps for access to health care and other disparities.

The CDC also issued a brief last week outlining the importance of involving the transgender community in the National HIV/AIDS Strategy. The brief highlighted the lack of reliable HIV surveillance data for transgender populations. Acknowledging that HIV in transgender communities is a complex topic with compounding social issues, the CDC cited social rejection and stigma; intimate partner violence or physical abuse; difficulty accessing education, employment, and housing; and lack of access to HIV testing, diagnosis, care, and prevention as challenges associated with increased risk of HIV among transgender people. Defining these challenges is an important step as federal agencies begin to involve transgender populations in the HIV conversation. Also included in the brief were specific actions the CDC is taking to address insufficient prevention methods, the lack of surveillance data, and the need for collective action in combating the epidemic. 

First, the CDC called for more High-Impact Prevention strategies tailored to address transgender people’s needs. One way the CDC hopes to better tailor interventions is by funding community-based organizations (CBOs) that come from and specialize in reaching transgender communities. Additionally, efforts to expand uptake of Pre-Exposure Prophylaxis (PrEP) among transgender women and to better target outreach using epidemiological data through Data to Care strategies are underway.

Second, accurate surveillance has been a major hurdle in combating the epidemic in the transgender community. According to the issue brief released last week, the CDC implemented mechanisms to improve the understanding of HIV in the transgender community through modifying the collection of national surveillance data. The issue brief specifically highlights:

  • Revising the data fields used in CDC’s National HIV Surveillance System (NHSS) to better account for sex and gender identity;
  • Issuing recommendations and statistical tools for health departments to collect information on current gender identity and report these data to the NHSS;
  • Working to raise awareness among health care providers of the importance of collecting complete data on sex and gender identity; and
  • Initiating analyses of HIV testing among transgender people through CDC’s existing Behavioral Risk Factor Surveillance System.

Finally, the CDC issued a call for collective action, citing the need for federal actions to coincide with the efforts of health departments, state and local agencies, CBOs, and community leaders. Policymakers and public health leaders must be on the same page as advocates and community members if there is to be a cohesive movement to address HIV in transgender populations. We have the tools to address the HIV epidemic—they just must be applied in ways that are culturally appropriate for the transgender community.

The CDC and NIH both took critical steps in acknowledging and addressing disproportionate health burdens shouldered by transgender people. While the NIH’s declaration was broad, there will be a direct effect on how HIV is studied in the transgender community. The CDC’s briefing more specifically outlined ways they will address HIV in the transgender community including reducing stigma, strengthening surveillance data, and promoting prevention and treatment. AIDS United would like to thank both agencies for taking much-needed steps in addressing health disparities pertinent to ending the HIV epidemic in the United States.