Senator Elizabeth Warren (D-MA) is introducing the bicameral Equitable Data Collection and Disclosure on COVID-19 Act. The legislation is co-sponsored by Senators Kamala Harris (D-CA), Cory Booker (D-NJ), Edward J. Markey (D-MA), Jeff Merkley (D-OR), and 14 of their Senate colleagues. In the House, the legislation is being introduced by Representative Ayanna Pressley (D-MA-07), Chair of the Congressional Black Caucus Health Braintrust Representative Robin Kelly (D-IL-02), Chair of the Congressional Black Caucus Representative Karen Bass (D-CA-37), Representative Barbara Lee (D- CA-13), and is co-sponsored by more than 80 of their colleagues.
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, 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. It would require HHS to use all available surveillance systems to post daily updates on the CDC website showing data on testing, treatment, and fatalities, disaggregated by race, ethnicity, sex, age, socioeconomic status, disability status, county, and other demographic information.
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 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 were Black, compared with only 25% of the population. This past weekend, Chelsea, Mass., a predominately Latinx community, was cited as a hot spot in the COVID 19 outbreak, with initial reporting confirming 400 new cases.
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.
It would also authorize $50 million in funding for the CDC, state public health agencies, the Indian Health Service, and other agencies to improve their data collection infrastructure and create an inter-agency commission to make recommendations on improving data collection and transparency and responding equitably to this crisis.
“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.”
“Black people and other people of color are being infected and dying from COVID-19 at alarming rates. Without the collection and publication of data at the national level, we cannot fully understand the scope of the issue and take appropriate action to help the most hard-hit communities. We need to right the historical wrongs that have led to deep health disparities for generations. This is a necessary step,” said Senator Harris.
“The story of communities of color bearing the brunt of public suffering is a tragically familiar one in our nation’s history. In order to best allocate resources and information, we need demographic data that will help us better understand these health disparities and act to end them,” said Senator Booker.
“This virus is shining a bright light on the deplorable inequalities that already exist throughout our society and economy. The racism and disparities impacting communities of color, and low-income, immigrant, and Indigenous communities were unacceptable before the pandemic, and we cannot come out of this crisis without addressing them in a comprehensive way,” said Senator Markey. “We need data on coronavirus testing, treatment and fatalities, broken down by race and ethnicity, gender, socioeconomic status, and more in order to ensure everyone gets the health care access and economic assistance they need to save their lives.”
“To fully combat the threat of coronavirus, we have to first recognize that serious race-based health disparities have existed in our communities for generations-long before the coronavirus hit,” said Senator Merkley. “It’s Congress’ responsibility to address this crisis for everyone, which means tackling this unacceptable reality head on. If we don’t document the scope of the disparities, we’ll never fix the problem. We need access to nationwide data.”
Other Senate co-sponsors of the legislation are Senators Dick Durbin (D-IL), Chris Van Hollen (D-MD), Tammy Baldwin (D-WI), Tom Carper (D-DE), Tim Kaine (D-VA), Ben Cardin (D-MD), Amy Klobuchar (D-MN), Bernie Sanders (I-VT), Sheldon Whitehouse (D-RI), Richard Blumenthal (D-CT), Sherrod Brown (D-OH), Mark Warner (D-VA), Debbie Stabenow (D-MI), and Gary Peters (D-MI).
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 and National Action Network.
According to her office, Senator Warren has been working to ensure racial equity in the federal response to COVID-19. Last month, she along with her colleagues wrote to Health & Human Services Secretary Azar urging HHS to collect racial and ethnic demographic data on COVID-19 testing and treatment. Last week, she along with her colleagues 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.