Public Comment

National HIV Surveillance System: Public Comment

June 2022

In April, the Centers for Disease Control and Prevention requested comments on its intention to collect new information through the National HIV Surveillance System, including sexual orientation and updated gender identity response options.

  • Luis A. Vasquez
    Staff Attorney, Former
Public Comment


The Centers for Disease Control and Prevention (CDC) conducts national surveillance for diagnosed cases of HIV that includes critical data reported across the spectrum of HIV disease stages from diagnosis to death. Data collected as part of the National HIV Surveillance System (NHSS) are the primary data used to monitor the extent and characteristics of the HIV epidemic in the United States. While the CDC has long written about the prevalence of HIV diagnoses among LGBT people—in particular gay, bisexual, and other men who have sex with men—their ability to identify sexual minorities through the NHSS has derived from reporting sexual experiences rather than direct measures of their sexual orientation identity.


The CDC has estimated that among the 34,800 new HIV diagnoses in the U.S. in 2019, 70% (24,500) were attributed to individuals reporting male-to-male sexual contact, and Black men who have sex with men (MSM) are the most likely to report being impacted by HIV. A recent Williams Institute report found less than 1% of cisgender and transgender LBQ women were living with HIV, compared to 8% of GBQ men. However, 7% of transgender LBQ women live with HIV. NHSS data that directly identifies sexual and gender minorities could enable researchers to examine differences among LGBTQ people and provide insight into effective strategies for HIV treatment and prevention.


Scholars write in support of the CDC’s proposed addition of a measure asking for self-identified sexual orientation, and its maintaining of existing two-step measures of gender identity. They provide legal and social science research to justify the collection of sexual orientation and gender identity (SOGI) information and provide support for collecting SOGI data in accordance with 2022 recommendations from an ad hoc panel of the National Academies of Science, Engineering, and Medicine.

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National HIV Surveillance System: Public Comment