Reps. Pressley, Kelly, Bass, Lee, & Sen. Warren Introduce Legislation to Require Federal Government to Collect & Release COVID-19 Demographic Data Including Race and Ethnicity
WASHINGTON – Today, Congresswomen Ayanna Pressley (MA-07), Karen Bass (CA-37), Chair of the Congressional Black Caucus, Robin Kelly (IL-02), chair of the Congressional Black Caucus Health Braintrust, and Barbara Lee (CA-13), along with Senators Elizabeth Warren (D-MA), Cory Booker (D-NJ), Kamala Harris (D-CA), Edward J. Markey (D-MA), and Jeff Merkley (D-OR), and more than 85 of their colleagues introduced the Equitable Data Collection and Disclosure on COVID-19 Act. The bill would require the Department of Health and Human Services (HHS) to collect and report racial, ethnic, and other demographic data on COVID-19 testing, treatment, and fatality rates, and provide a summary of the final statistics and a report to Congress within 60 days after the end of the public health emergency.
The legislation comes as reports across the United States point to stark racial disparities in COVID-19 cases and fatalities. In Michigan, Black residents account for 33% of confirmed COVID-19 cases and 40% of fatalities, despite making up only 14% of the state’s population. In Louisiana, 70% of those who have died from COVID-19 so far are Black, compared with 32% of the state’s population. Initial data from Boston shows that among people whose race was reported, more than 40 percent of people infected with COVID-19 were Black, despite making up just 25% of the city’s population. This past weekend, Chelsea, a predominately LatinX community in the MA 7th, initial reporting confirmed 400 new cases, making the city one of Massachusetts’ biggest hotspots.
Specifically, the bill would require HHS to use all available surveillance systems to post daily updates on the CDC website showing the following data disaggregated by race, ethnicity, sex, age, socioeconomic status, disability status, county, and other demographic information, including:
- Data related to COVID-19 testing, including the number of individuals tested and the number of tests that were positive;
- Data related to treatment for COVID-19, including hospitalizations and intensive care unit admissions and duration; and
- Data related to COVID-19 outcomes, including fatalities.
The bill also would establish an inter-agency commission to make recommendations in real time on improving data collection and transparency and responding equitably to this crisis.
“History has shown us that in the face of any public health crisis, communities of color disproportionately suffer,” said Congresswoman Pressley. “We are less likely to have access to quality and affordable health care and more likely to live with underlying conditions. The stark racial disparities in COVID-19 cases and deaths are a disturbing reminder of that reality, and makes clear the need for nationwide, race-specific data collection. I’m proud to sponsor the Equitable Data Collection and Disclosure on COVID-19 Act because it’s past time the Department of Health and Human Services begins collecting race-specific data on this pandemic nationwide so that we can fully understand the scope of the crisis and respond. We need to ensure that communities of color have adequate access to testing, treatment, and economic support.”
“The coronavirus is disproportionately killing Black people,” said Rep. Karen Bass, Chair of the Congressional Black Caucus. “This pandemic has exposed the deficiencies and inequalities of our healthcare system that Black communities know all too well, and have experienced for generations. Now is the time for our nation’s leaders to use race-based data to finally address these disparities and save Black lives. That’s why the Congressional Black Caucus is fighting for healthcare equality. The Equitable Data Collection and Disclosure on COVID-19 Act will put us one step closer to providing practical solutions to closing the inequalities in the healthcare system, which includes robust funding and resources to the hardest-hit communities.”
"The limited data released shows a shocking but unsurprising trend. African Americans are dying from COVID19 complications at much higher rates than their neighbors. It's imperative that the federal government and all agencies collect and make ability high-quality data, including racial data, so we can better target resources in the immediate term to save lives while working to prevent disparities in future public health crises and pandemics," said Congresswoman Robin Kelly, chair of the Congressional Black Caucus Health Braintrust.
“Centuries of structural racism has created a system where African Americans and other communities of color struggle to access quality health care – making the current crisis even more deadly,” said Congresswoman Barbara Lee. “As elected officials, we have a responsibility to ensure that every community has the resources they need to stay safe. I’m proud to work with my colleagues on the Equitable Data Collection and Disclosure on COVID-19 Act to mandate that the Department of Health and Human Services collects and discloses race-specific data on the victims of this pandemic. After Leader McConnell’s stunt last week to block a relief bill with these requirements, it’s clear we can’t wait to act. No one should face a worse health outcome because of the color of their skin.”
“We are facing a crisis unlike anything in our lifetimes -- and it is hitting communities of color, people with disabilities, low-income communities, and Indian Country especially hard,” said Senator Warren. “Because of government-sponsored discrimination and systemic racism, communities of color are on the frontlines of this pandemic. To effectively slow the spread of the virus and ensure our response is robust and equitable, we need comprehensive national data on who is getting infected, who is getting treatment, and who is dying. That is how we can truly contain COVID-19 and save lives.”
In addition to Congresswomen Pressley, Kelly, Bass, and Lee, the Equitable Data Collection and Disclosure on COVID-19 Act is co-sponsored by Representatives Terri A. Sewell (AL-07), Bennie G. Thompson (MS-02), Jan Schakowsky (IL-09), Alexandria Ocasio-Cortez (NY-14), G. K. Butterfield (NC-01), Dwight Evans (PA-03), Alcee L. Hastings (FL-20), Stephen F. Lynch (MA-08), Donna E. Shalala (FL-27), Susan Wild (PA-07), Gregory W. Meeks (NY-05), Danny K. Davis (IL-07), Wm. Lacy Clay (MO-01), Eleanor Holmes Norton (DC-00), Joyce Beatty (OH-03), Marcia L. Fudge (OH-11), Joaquin Castro (TX-20), Tony Cárdenas (CA-29), Brenda L. Lawrence (MI-14), Lisa Blunt Rochester (DE-00), Mark Pocan (WI-02), Eddie Bernice Johnson (TX-30), Lori Trahan (MA-03), Deb Haaland (NM-01), Adam Smith (WA-09), Jesús G. “Chuy” García (IL-04), Jackie Speier (CA-14), John Lewis (GA-05), Kathy Castor (FL-14), Mary Gay Scanlon (PA-05), Joseph P. Kennedy, III (MA-04), Steven Horsford (NV-04), Yvette D. Clarke (NY-09), André Carson (IN-07), Andy Levin (MI-09), Grace Meng (NY-06), Nanette Diaz Barragán (CA-44), Adriano Espaillat (NY-13), Rashida Tlaib (MI-13), Henry C. "Hank" Johnson, Jr. (GA-04), Eliot L. Engel (NY-16), Jahana Hayes (CT-05), Bobby L. Rush (IL-01), Linda T. Sánchez (CA-38), Cedric L. Richmond (LA-02), Darren Soto (FL-09), Daniel T. Kildee (MI-05), Grace F. Napolitano (CA-32), Alma S. Adams, Ph.D. (NC-12), James P. McGovern (MA-02), Debbie Dingell (MI-12), Derek Kilmer (WA-06), Maxine Waters (CA-43), Frederica S. Wilson (FL-24), Gwen Moore (WI-04), Seth Moulton (MA-06), Marcy Kaptur (OH-09), Earl Blumenauer (OR-03), Judy Chu (CA-27), A. Donald McEachin (VA-04), Donald M. Payne, Jr. (NJ-10), Jerrold Nadler (NY-10), David Scott (GA-13), Paul D. Tonko (NY-20), Alan Lowenthal (CA-47), John B. Larson (CT-01), Donald S. Beyer Jr. (VA-08), Hakeem Jeffries (NY-08), Nydia M. Velázquez (NY-07), Lauren Underwood (IL-14), Debbie Wasserman Schultz (FL-23), José E. Serrano (NY-15), Sanford D. Bishop Jr. (GA-02), Joe Neguse (CO-02), J. Luis Correa (CA-46), Jamie Raskin (MD-08), Stacey E. Plaskett (VI-00), Jimmy Gomez (CA-34), Ilhan Omar (MN-05), Diana DeGette (CO-01), Jason Crow (CO-06), Val Demings (FL-10), Anthony G. Brown (MD-04), Norma Torres (CA-35), Robert C. “Bobby” Scott (VA-03), and Raúl Grijalva (AZ-03).
The Equitable Data Collection and Disclosure on COVID-19 Act is endorsed by the National Urban League, Lawyer’s Committee on Civil Rights, Asian & Pacific Islander American Health Forum, National Birth Equity Collaborative, Meharry Medical College and National Action Network.
"We applaud Representative Pressley, Representative Kelly, Representative Bass, Representative Lee, and Senator Warren for sponsoring the 'Equitable Data Collection and Disclosure on COVID-19 Act,' which will provide funding and mandate the release of comprehensive and publicly-available racial and ethnic data on testing, treatment, and health outcomes," said Kristen Clarke, President & Executive Director of the Lawyers' Committee for Civil Rights Under Law. "Preliminary data released from around the country indicates that African Americans and Latinos are disproportionately being infected and suffering worse health outcomes from COVID-19. Data transparency and a commission to ensure that communities of color receive equitable health care, including testing and treatment, is critical to protect individuals and ultimately end this pandemic."
“The American Medical Association and our Center for Health Equity believe the nationwide collection and release of race and ethnicity data will be a pivotal step in the war against COVID-19 for our most vulnerable communities. To combat this disease, we need to know who is affected and dying. This legislation will give public health experts the data needed to honestly face this pandemic – and others that follow,” said American Medical Association President Patrice A. Harris, M.D.
Congresswoman Pressley has been working since the start of the COVID-19 outbreak to ensure racial equity in the federal response. Last month, she wrote to Health & Human Services Secretary Alex urging HHS to collect racial and ethnic demographic data on COVID-19 testing and treatment. Last week, she sent a letter to the Centers for Medicare and Medicaid Services (CMS) calling on the agency to immediately release racial and ethnic data of Medicare beneficiaries who are tested or hospitalized for COVID-19.
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