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GMHC Statement on the CDC

The roll-back of collecting information about LGBTQ people may have far-reaching health consequences

Contact: Cub Barrett | 212-367-1561 |

NEW YORK, NY (May 30, 2018)Earlier this month, a Centers for Disease Control and Prevention (CDC) official announced that, starting in 2019, the agency will begin to scale back data collection specifically around sexual orientation and gender identity, effectively erasing vital data about LGBTQ individuals in the United States and potentially damaging their health.

As reported by UCLA’s Williams Institute, the Behavior Risk Factor Surveillance System, or BRFSS, will no longer include the module on LGBTQ issues. According to the report, “the sexual orientation and gender identity module has been an optional module since 2014, and has been used by over 30 states and territories.”

The removal of this module will directly affect the data and information about health care needed by the LGBTQ community. Additionally, since this is the only federal health survey that has provided a snapshot of the health and socioeconomic status of transgender people in the U.S., researchers were, for the first time ever, able to estimate the number of people in the transgender population. Without this module in future reports, the federal government will no longer track this population.

“Folks working in health care and direct services will now have little data to rely on in order to address health disparities within the LGBTQ population, which will lead to a lack of evidence for claiming needs for funding, projects, or programs to assist and work directly with the LGBTQ population,” said Kelsey Louie, CEO of Gay Men’s Health Crisis (GMHC). “The BRFSS also provided evidence that transgender individuals are at higher risk of poverty, supporting claims made by smaller HIV studies that we rely on to help us deliver the specific services that transgender people need. The role of creating data around this population will now fall back on smaller studies that do not have the same scope and diversity that national federal surveys were able to collect, and place a burden on organizations that may not have the capacity for this kind of task.”

“We know that transgender women as a population have one of the highest rates of HIV/AIDS in the United States, but we will now begin to lose the annual data that supports that. This will directly affect our ability to create education, prevention, and treatment plans to reach this population,” said Kaleb Dornheim, Advocacy Specialist at GMHC. “At GMHC, we work every day with the transgender and gender nonconforming (TGNC) population, as they are one of the fastest-growing populations of HIV-positive people in the country. We help them fight barriers to health care since they consistently face discrimination, harassment, transphobia, providers without cultural competency training, a lack of insurance, and stigma in their daily lives and health care settings. These are dehumanizing interactions that keep TGNC people from accessing health care and prevention. Without the ability to create programs to work with these communities based on specific needs, their quality of life will suffer greatly.”

In order to create public health policy and interventions to end the HIV/AIDS epidemic, as well as create holistically healthy LGBTQ individuals across the United States, we need to have the data to support our programs and drive the interventions that each community needs. By removing programs that collect this data, the CDC and the federal administration are sending a strong message that the health care of LGBTQ individuals are not a priority and do not matter enough to collect information on their needs and lives.


About Gay Men's Health Crisis: Gay Men's Health Crisis (GMHC) is the world's first HIV/AIDS service organization. GMHC is on the front lines providing services to over 12,000 people living with and affected by HIV/AIDS. Programs include: testing, prevention, nutrition, legal, supportive housing, mental health and substance use services. GMHC also advocates for stronger public policies at the local, state and federal levels with the goal of ending AIDS as an epidemic. For more information, visit