HIV Surveillance Data is Barrier to Allocating Resources to Serve Transgender Persons

The Southern AIDS Strategy Initiative (SASI), a groundbreaking research initiative now housed at the Southern AIDS Coalition, has released The Transgender Surveillance Report: IDENTIFICATION AND REPORTING OF GENDER IDENTITY AMONG INDIVIDUALS DIAGNOSED WITH HIV IN THE DEEP SOUTH. This study closely examines how Deep South states are collecting gender identity information in their HIV surveillance programs, the barriers faced in collecting this information, and explores possible solutions. The study also examines the Center for Disease Control and Prevention’s (CDC’s) reporting on gender identity information and CDC resources aimed at helping states collect gender identity data.

Dr. Susan Reif, SASI Research Coordinator and the report’s lead author, highlights the importance of this report, “The Deep South region of the United States (defined as Alabama, Florida, Georgia, Louisiana, Mississippi, North Carolina, South Carolina, Tennessee, and Texas) has borne a particularly high HIV burden and is a significant driver of the US HIV epidemic. Transgender people, particularly transgender women, have been identified as being at higher risk for HIV.  Unfortunately, documentation of gender identity data among those diagnosed with HIV in the Deep South states is incomplete, resulting in a lack of accurate gender identity information in HIV surveillance data and a subsequent suboptimal ability to tailor the allocation of limited resources for transgender people living with HIV.”

According to state public health officials, the collection of gender identity information in HIV surveillance is challenging due to a range of barriers, including: the need for streamlined data systems, the lack of commitment by medical providers to collect gender identity information, incomplete gender identity documentation in electronic medical records, and the lack of cultural sensitivity on the part of many medical providers and others working with transgender individuals.

Marissa L. Miller, President of TransSolutions, LLC and a southern trans leader, agrees with the report findings, “We cannot successfully end the HIV Epidemic, certainly not as suggested in the Federal Plan to End HIV by 2030, if we don’t dismantle broken systems, adapt those that create sustainability, and recognize [the role of] safety as it relates to health outcomes.  We must vigorously seek and engage the most effective and current systems to end the epidemic, that includes new effective systems data collection tools that consider the needs of transgender persons—especially Black transwomen, who are disproportionately impacted by HIV.” The report offers specific recommendations to the Department of Health and Human Services (DHHS) and CDC to improve HIV surveillance reporting to ensure the appropriate focus in allocation of limited resources:

  • That DHHS, through the CDC and other federal agencies, provide financial and technical assistance support to states to improve data collection, including the creation of systems that allow relevant databases to sync with each other;
  • That the CDC and other federal agencies provide increased federal funding to support gender identity cultural sensitivity training for providers working with people being tested and treated for HIV. Training should be focused on sensitivity around transgender-related issues and should provide for the meaningful involvement for members of the transgender community;
  • That the CDC develop formal guidance and provide technical assistance to target and educate labs and other medical organizations on best practices to develop and implement data collection systems that routinely capture gender identity data while also guaranteeing that privacy and confidentiality are protected and non-discrimination are in place; and
  • Once these recommendations are in place or no later than 2023, the CDC should establish benchmarks for completion of gender identity information on the CDC-required Case Report Form used by the states to report HIV cases to the CDC.

The report was made possible with funding from the Ford Foundation and through research at the Center for Health Policy and Inequality Research at Duke University.  The full report is available here at: or

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