Robust Data Collection on COVID Disparities Will Help Direct Resources to Hardest Hit Communities
WASHINGTON – Congresswoman Ayanna Pressley (MA-07) and Senator Elizabeth Warren (D-MA), along with Congresswomen Karen Bass (CA-37), Barbara Lee (CA-13) and Robin Kelly (IL-13), today led their colleagues in reintroducing the bicameral 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 and other demographic data on COVID-19 testing, treatment, vaccination, and fatality rates and use all available surveillance systems to post daily updates on the CDC website showing data disaggregated by race, ethnicity, sex, age, socioeconomic status, disability status, county, and other demographic information.
“From the onset of the pandemic, we’ve been calling for robust data collection and disclosure on racial disparities in COVID-19 to ensure we marshal life-saving support and resources to the communities most impacted,” said Congresswoman Pressley. “That which gets measured gets done, and with disparities in vaccine access emerging in Black, Latinx and Indigenous communities in Massachusetts and nationwide, it is essential that we collect and publish anonymized demographic data on vaccine recipients. We must prioritize equity in our vaccination efforts, and passing our bill to mandate this data collection is critical to that effort.”
“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.”
“The coronavirus is disproportionately killing Black people,” said Rep. Bass. “This pandemic has exposed the deficiencies and inequalities of our healthcare system that Black communities know all too well, and have experienced for generations. As vaccines become available, now is the time for our nation’s leaders to use race-based data to finally address these disparities and save Black lives. 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.”
“There is no disputing that this pandemic has disproportionately impacted Black, Brown and communities of color, and systemic racism in our public health system is to blame,” said Rep. Lee. “We have been consistently fighting for targeted data collection to understand, address, and invest in providing life-saving resources to the communities hit the hardest. Especially during the vaccine distribution process, it’s more important now than ever to address racial health disparities. I’m proud to be working with Representatives Pressley, Kelly, and Bass, along with Senator Warren, to collect and publish demographic data so crucial to helping communities of color survive this pandemic.”
“We have learned the hard way that if we do not require data collection on racial equity through legislation, we will never get it. When this pandemic began, the Centers for Disease Control refused to collect and analyze racial disparity data,” Congresswoman Kelly said. “Early data only came from courageous states that published their data and asked for help saving lives. Collecting race and ethnicity data is critically important to ensuring equitable vaccine access. Only with comprehensive and meticulous data can lawmakers enact policies that will truly aid communities that have been hardest hit.”
From the beginning of this pandemic, Black, brown, and American Indian/Alaska Native (AI/AN) people in the United States have suffered the largest burden of illness, hospitalization and death from COVID19. The Centers for Disease Control and Prevention (CDC) reports that AI/AN people are nearly four times as likely as white people to be hospitalized for COVID-19, and that Black and Hispanic/Latino people are about twice as likely to die of COVID-19 as white people. Nonetheless, significant gaps in data reporting remain. Even a year into the pandemic, race and ethnicity data is available for only half (51%) of COVID-19 cases.
The legislation is co-sponsored by Representatives Adriano Espaillat, Brenda L. Lawrence, Gregory W. Meeks, Val B. Demings, Alexandria Ocasio-Cortez, Dwight Evans, Rashida Tlaib, Bonnie Watson Coleman, Grace Meng, Lisa Blunt Rochester, Kweisi Mfume, Hank Johnson, Yvette D. Clarke, Diana DeGette, Eleanor Holmes Norton, Pramila Jayapal and Senators Tammy Baldwin (D-Wisc.), Richard Blumenthal (D-Conn.), Cory Booker (D-NJ), Tim Kaine (D-Va.) Amy Klobuchar (D-Minn.), Edward J. Markey (D-MA), Jeff Merkley (D-OR), Jacky Rosen (D-Nev.), Debbie Stabenow (D-Mich.), Chris Van Hollen (D-Md.), and Ron Wyden (D-Ore.).
Specifically, the Equitable Data Collection and Disclosure on COVID-19 Act would require the reporting of the following data disaggregated by race, ethnicity, sex, age, socioeconomic status, disability status, county, and other demographic information:
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;
Data related to COVID-19 outcomes, including fatalities;
Data related to COVID-19 vaccinations, including the number and percentage of vaccines administered to each group, the number of vaccines offered, accepted, refused, and the most common reasons for refusal.
It would also authorize $50 million in emergency supplemental funding to HHS to conduct or support data collection on the racial and ethnic implications of COVID-19, including supporting capacity building in state and local health departments to collect and transmit racial and ethnic data. Finally, it creates a Commission on Ensuring Data for Health Equity to provide guidance on how to better collect and analyze demographic data in responding to future public health emergencies.
The Equitable Data Collection and Disclosure on COVID-19 Act is endorsed by the National Birth Equity Collaborative, Seattle Indian Health Board, and National Council of Urban Indian Health.
From the onset of the pandemic, Congresswoman Pressley and Senator Warren have led efforts in Congress to ensure an equitable response to the pandemic that addresses existing racial disparities in the United States.
Last month, Rep. Pressley wrote to Massachusetts Governor Charlie Baker urging him to step up vaccination efforts in Black and Brown communities amid troubling reports of growing racial disparities in vaccination and vaccine access across the state.
In April 2020, Rep. Pressley and Sen. Warren, along with Sen. Markey, led their colleagues in introducing the Equitable Data Collection and Disclosure on COVID-19 Act, legislation to require the federal government to collect and publicly release racial and other demographic data on COVID-19. 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. Aspects of the legislation were included in an COVID-19 relief package signed into law later that month.
In April 2020, Rep. Pressley urged Governor Baker to rescind the Commonwealth’s proposed Crisis of Care Standards that would have disproportionately harmed Black and Brown communities and the disability community.
In March, Rep. Pressley and Sen. Warren urged HHS to collect racial and ethnic demographic data on testing and treatment for COVID-19 to identify and address racial disparities.
Rep. Pressley, Sen. Markey, and Sen. Warren also 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.
Congresswoman Pressley and Senator Warren has also written to the Department of Health and Human Services (HHS) asking for HHS’s report on the administration’s efforts to address racial disparities in health care access and outcomes, as required by the Patient Protection and Affordable Care Act (ACA).
At the request of Congresswoman Pressley and Senator Warren, the Government Accountability Office (GAO) has agreed to investigate how COVID-19 relief funds have been distributed to disproportionately affected communities.