WASHINGTON, D.C. – U.S. Senator Cory Booker was joined by almost 100 colleagues in both Houses of Congress wrote to U.S. Health and Human Services (HHS) Secretary Alex Azar to fulfill HHS’ commitment to its Healthy People 2020 objectives by collecting data on sexual orientation and gender identity during the coronavirus disease of 2019 (COVID-19) pandemic.

The COVID-19 pandemic is more likely to impact members of the LGBTQ community than the general population. According to a recent report, members of the LGBTQ community are more likely to “lack access to adequate medical care, paid medical leave, and basic necessities during the pandemic.”

“The current lack of demographic data that includes sexual orientation and gender identity will make it difficult for health care providers and policymakers to clearly identify and address the prevention and treatment needs of lesbian, gay, bisexual, transgender, and queer (LGBTQ) communities and will exacerbate the challenges that these populations are already experiencing during the COVID-19 public health emergency,” wrote the bicameral group of lawmakers to Secretary Azar. “We strongly urge you to include information on sexual orientation and gender identity as part of any COVID-19 data collection efforts.”

Currently, the Centers for Disease Control and Prevention's (CDC) COVID-19 Case Report Form does not include questions about whether a patient identifies as LGBTQ. It is unclear if supplemental surveillance activities such as COVID-NET include these questions or if any upcoming surveys will include these questions. This not only contradicts the HHS Healthy People 2020 objectives to improve the collection of health data on LGBTQ populations, it also ignores the objectives of Section 4302 of the Affordable Care Act’s provisions to strengthen federal data collection efforts.

Congress and governmental agencies rely on data to create better health programs, direct vital resources to communities, and better the health of all people residing in the United States. “The fact remains that we know little about the social and economic circumstances of the LGBTQ population at large. For these reasons, we believe that it is critical for the federal government to work with states and localities to provide disaggregated data on sexual orientation, gender identity, and other demographic characteristics when reporting COVID-19 tests, cases, and fatalities to the CDC,” the lawmakers concluded before urging Secretary Azar to create and implement the tools to collect this critical data.

The lawmakers also asked a series of questions about how HHS will document and report on the impact of COVID-19 on LGBTQ communities,; and requested an explanation of the agency’s outreach to LGBTQ communities and organizations about the COVID-19 pandemic to date. Organizations supporting this letter include the Center for American Progress, Family Equality, Lambda Legal, and the National LGBT Cancer Network.

The letter was also signed by Sens. Bob Menendez (D-NJ), Tammy Baldwin (D-Wis.), Sherrod Brown (D-Ohio), Ed Markey (D-Mass.), Bernard Sanders (I-Vt.), Richard Blumenthal (D-Conn.), Catherine Cortez Masto (D-Nev.), Sheldon Whitehouse (D-R.I.), Robert P. Casey, Jr. (D-Penn.), Kirsten Gillibrand (D-N.Y.) and Kamala D. Harris (D-Calif.), Dick Durbin (D-Ill.), Elizabeth Warren (D-Mass.), Cory A. Booker (D-N.J.), Tina Smith (D-Minn.), Amy Klobuchar (D-Minn.), Mazie K. Hirono (D-Hawaii), Jacky Rosen (D-Nev.), Jack Reed (D-R.I.) and Jeff Merkley (D-Ore.).

Joining Rep. Grijalva in the House Representatives were Reps. Colin Z. Allred (D-Tex.-32), Alma S. Adams, Ph.D (D-N.C.-12), Karen Bass (D-Calif.-37), Earl Blumenauer (D-Ore.-03), Lisa Blunt Rochester (D-Del.), Suzanne Bonamici (D-Ore.-01), Julia Brownley (D-Calif.-26), Tony Cárdenas (D-Calif.-29), Ed Case (D-Hawaii-01), Judy Chu (D-Calif.-27), David N. Cicilline (D-R.I.-01), Gilbert R. Cisneros, Jr. (D-Calif.-39), Yvette D. Clarke (D-N.Y.-09), J. Luis Correa (D-Calif.-46), TJ Cox (D-Calif.-21), Jason Crow (D-Colo.-06), Susan A. Davis (D-Calif.-53), Danny K. Davis (D-Ill.-07), Madeleine Dean (D-Pa.-04), Peter A. DeFazio (D-Ore.-04), Eliot L. Engel (D-N.Y.-16), Veronica Escobar (D-Tex.-16), Adriano Espaillat (D-N.Y.-13), Bill Foster (D-Ill.-11), Jesús G. "Chuy" García (D-Ill.-04), Sylvia R. Garcia (D-Tex.-29), Jimmy Gomez (D-Calif.-34), Deb Haaland (D-N.M.-01), Alcee L. Hastings (D-Fla.-20), Jahana Hayes (D-Conn.-05), Pramila Jayapal (D-Wash.-07), Eddie Bernice Johnson (D-Tex.-30), Henry C. “Hank” Johnson, Jr (D-Ga.-04), Joseph P. Kennedy, III (D-Mass.-04), Ro Khanna (D-Calif.-17), John B. Larson (D-Conn.-01), Barbara Lee (D-Calif.-13), Ted W. Lieu (D-Calif.-33), Zoe Lofgren (D-Calif.-19), Alan Lowenthal (D-Calif.-47), Carolyn B. Maloney (D-N.Y.-12), Sean Patrick Maloney (D-N.Y.-18), Lucy McBath (D-Ga.-06), A. Donald McEachin (D-Va.-04), James P. McGovern (D-Mass.-02), Gregory W. Meeks (D-N.Y.-05), Grace Meng (D-N.Y.-06), Debbie Mucarsel-Powell (D-Fla.-26), Eleanor H. Norton (D-D.C.), Alexandria Ocasio-Cortez (D-N.Y.-14), Ilhan Omar (D-Minn.-05), Jimmy Panetta (D-Calif.-20), Chris Pappas (D-N.H.-01), Chellie Pingree (D-Maine-01), Mark Pocan (D-Wis.-02), Katie Porter (D-Calif.-45), Ayanna Pressley (D-Mass.-07), Mike Quigley (D-Ill.-05), Jamie Raskin (D-Md.-08), Kathleen M. Rice (D-N.Y.-04), Harley Rouda (D-Calif.-48), Lucille Roybal-Allard (D-Calif.-40), Linda T. Sánchez (D-Calif.-38), José E. Serrano (D-N.Y.-15), Donna E. Shalala (D-Fla.-27), Albio Sires (D-N.J.-08), Adam Smith (D-Wash.-09), Darren Soto (D-Fla.-09), Jackie Speier (D.-Calif.-14), Tom Suozzi (D-N.Y.-03), Mark Takano (D-Calif.-41), Dina Titus (D-Nev.-01), Rashida Tlaib (D-Mich.-13), Lori Trahan (D-Mass.-03), David Trone (D-Md.-06), Lauren Underwood (D-Ill.-14), Juan Vargas (D-Calif.-51), Nydia M. Velázquez (D-N.Y.-07), Bonnie Watson Coleman (D-N.J.-12), and Jennifer Wexton (D-Va.-10).

The full text of the letters can be found here and below.

Dear Secretary Azar,

We write today to urge the U.S. Department of Health and Human Services (HHS) to fulfill its commitment to its Healthy People 2020 objectives by collecting data on sexual orientation and gender identity during the coronavirus disease of2019 (COVID-19) pandemic.  The current lack of demographic data that includes sexual orientation and gender identity will make it difficult for health care providers and policymakers to clearly identify and address the prevention and treatment needs of lesbian, gay, bisexual, transgender, and queer (LGBTQ) communities and will exacerbate the challenges that these populations are already experiencing during the COVID-19 public health emergency.  We strongly urge you to include information on sexual orientation and gender identity as part of any COVID-19 data collection efforts.

Congress relies on data to create better health programs, direct vital resources to communities, and better the health of all people residing in the UnitedStates.  Like other marginalized groups, the LGBTQ community faces multiple health inequities.   With scarce demographic information available about the LGBTQ population,  it is difficult to provide quality care and solutions.  In 2010, HHS created the first-ever Healthy People objectives regarding LGBTQ health data collection.   The HealthyPeople objectives are science-based, ten-year national objectives for improving the health of all Americans.   The Healthy People 2020 objectives recognized the need to increase the number of surveys that collect information on sexual orientation and gender identity.

Currently, the Centers for Disease Control and Prevention's (CDC) COVID-19 Case ReportForm  does not include questions about whether a patient identifies asLGBTQ.  It is unclear if supplemental surveillance activities such asCOVID-NET include these questions or if any upcoming surveys will include these questions.  This omission not only contradicts the HHS Healthy People 2020objectives  to improve the collection of health data on LGBTQ populations,  but it also ignores the objectives of Section 4302 of theAffordable Care Act to strengthen federal data collection efforts.

Data collection on sexual orientation and gender identity is an opportunity to eliminate barriers to culturally competent care.  Questions about sexual orientation and gender identity allow individuals to disclose who they indeed are, if they so choose, and may allow individuals to feel safe sharing information that is relevant to their care.   Inclusive and nondiscriminatory health care settings are urgently needed, as this pandemic is more likely to impact members of the LGBTQ community than the general population.  According to a recent report, members of the LGBTQ community are more likely to “lack access to adequate medical care, paid medical leave, and basic necessities during the pandemic.”   Additionally, specific health risks and conditions that disproportionately impact the LGBTQ community, such as smoking, asthma, and HIV may increase the risk of developing a severe case of COVID-19.

Collecting demographic data on sexual orientation and gender identity is increasingly common in major health surveys and public health surveillance systems, such as the CDC’s National HIV Surveillance System, Behavioral Risk Factor SurveillanceSystem, and Youth Risk Behavior Survey.  Indeed, HHS has already developed internal guidance for collecting sexual orientation and gender identity data in a uniform manner to ensure that this data can be easily aggregated into established instruments.   A strong and growing body of research shows that patients and providers readily understand these questions and are willing to answer them,  and that asking these questions does not distress or otherwise negatively impact cisgender heterosexual patients.

In light of the history and current prevalence of unlawful discrimination against members of the LGBTQ community in health care settings, HHS should emphasize that disclosing information about sexual orientation or gender identity is voluntary.  Additionally, HHS should provide guidance to health care providers about how to ask these questions in a sensitive manner that emphasizes confidentiality.

Achieving health equity in this pandemic includes taking an equitable approach in COVID-19 surveillance systems that collect data on patients' race, ethnicity, sex, primary language, sexual orientation, gender identity, disability status, and socioeconomic status in line with federal standards.  The fact remains that we know little about the social and economic circumstances of the LGBTQ population at large.  For these reasons, we believe that it is critical for the federal government to work with states and localities to provided is aggregated data on sexual orientation, gender identity, and other demographic characteristics when reporting COVID-19 tests, cases, and fatalities to the CDC.

Accordingly, we request that HHS undertake the following actions and address the status of any such actions in response no later than May XX, 2020:

  • Create a plan to integrate sexual orientation and gender identity data variables into COVID-19 surveillance systems.
  • Share guidance with health care providers about why data on sexual orientation and gender identity is essential, and best practices for asking patients to disclose this information voluntarily.
  • Take steps to ensure that federally run health facilities collect data on sexual orientation and gender identity, including Veterans Administration hospitals and the National Institutes of Health Clinical Center.
  • Share guidance with state health departments on how and why to include sexual orientation and gender identity data in their own COVID-19 surveillance efforts.
  • Explain how HHS will document and report on the impact of COVID-19 on LGBTQ communities.
  • Explain HHS’ outreach to LGBTQ communities and organizations about the COVID-19pandemic to date, including which offices in HHS are responsible for and have undertaken this outreach.
  • Reach out to national, state, and local LGBTQ organizations to collect community concerns and opportunities related to the impact of the COVID-19pandemic on LGBTQ health.

Given the exponential spread of COVID-19 in the United States, we urge you to create and implement the tools to collect data about our most vulnerable populations during these unprecedented times.  Thank you for your attention to this critical matter.