By Sen. Elizabeth Warren and Reps. Ayanna Pressley, Karen Bass, Robin Kelly and Barbara Lee
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Illustration for article titled Congress Must Mandate Release of Coronavirus Demographic Data—Including Race and Ethnicity
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The coronavirus pandemic is a crisis unlike any we’ve seen in our lifetime. In the United States alone, hundreds of thousands of people are confirmed sick, more than 20,000 people have died, and more than 16 million have filed for unemployment.

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Already, we are seeing the ways in which the pandemic is impacting communities unequally. The early data is alarming: The virus appears to be infecting and killing people of color at higher rates. This reflects the structural racism and systemic inequalities that existed in our country long before the outbreak began.

People of color are more likely to live in neighborhoods exposed to environmental hazards like polluted air, which can cause respiratory diseases like asthma that increase the risk of complications from coronavirus. They are more likely to lack access to clean water needed for hand-washing. They are less likely to have health insurance and less likely to have their health concerns taken seriously, despite higher rates of heart disease, diabetes, and other underlying conditions correlated with coronavirus mortality. People of color are also more likely to work in low-wage jobs that cannot be done remotely. They are essential workers on the frontlines of this crisis. And because of generations of entrenched structural racism, they also have fewer financial resources to lean on in the event of health problems or economic disruption, making it more difficult to stay home and avoid exposure.

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To effectively slow the spread of the virus and ensure communities of color get equitable testing and treatment, we need data. We’ve already called on the federal government to expand the collection of racial, ethnic, and other demographic data on coronavirus testing and treatment. Today, we are introducing legislation to mandate it. While some states and localities have moved to publish data to better inform the public and our health care response, others have not. That’s why we need a national approach, and our bill must be included in the next coronavirus relief package.

While public coronavirus data on race and other demographic characteristics is limited, we are already seeing some clear trends. Early reporting suggests that black communities have been among the hardest hit. In Michigan, blacks account for 33 percent of confirmed COVID-19 cases and 40 percent of fatalities, despite making up only 14 percent of the state’s population. In Louisiana, 70 percent of those who have died from COVID-19 so far are black, compared with 32 percent of the state’s population. The pattern continues in Milwaukee, Illinois and North Carolina. Partial data from Boston shows that among people whose race was reported, more than 40 percent of people infected were black, compared with being only 25 percent of the population. In Chelsea, Mass., a community largely made up of Latinx families, we’ve seen a hot spot emerge with 400 cases newly reported. And it’s not just the black community that is suffering: low-income communities, people with disabilities, immigrants, and tribal communities are on the frontlines of the coronavirus crisis.

These patterns are alarming. We also know that the data we have so far is insufficient. The Centers for Disease Control and Prevention (CDC) has released some initial data and so have some states and cities. But we need to leverage all of the data available to us to take on this crisis. Our legislation would require the CDC to update its website daily with the number of individuals tested for COVID-19 and the number of positive tests, hospitalizations, ICU admissions, outcomes, and deaths by race, ethnicity, sex, age, socioeconomic status, disability status, county, and other demographic information. It would also authorize $50 million in emergency supplemental funding to the Department of Health and Human Services (HHS) to conduct or support data collection on the racial, ethnic, and other demographic implications of COVID-19. Under our legislation, we also make sure that all necessary steps are taken to protect privacy, and to engage in meaningful tribal consultation, during this process. The bill requires a public summary of statistics and a report to Congress within 60 days of the end of this public health emergency.

We also create a multi-agency Commission chaired by the National Academy of Sciences and made up of representatives from federal agencies; state, local, and tribal officials; and independent experts to identify barriers to collecting data on racial and other demographic disparities, and make recommendations for how to best use this data to promote health equity. This Commission must submit a report to Congress within 60 days, and every 180 days until the end of the public health emergency.

We’ve already urged HHS to expand the collection of racial, ethnic, and other demographic data and release it. President Trump has also indicated that there are plans to begin making some of this data available. But we can’t rely on the Trump administration to do this on its own. We need to make this law. We’ve introduced this legislation with Senators Kamala Harris, Cory Booker, Edward J. Markey, Jeff Merkley and 14 of our Senate colleagues and over 80 of our colleagues in the House. In the coming days, we will be urging Congressional leadership to pass this bill in the next coronavirus relief package. We need this data to save lives. We have no time to waste.


Senator Warren is the senior senator from Massachusetts. Representative Ayanna Pressley represents Congressional District 7 in Massachusetts. Representative. Robin Kelly is the chair of the Congressional Black Caucus Health Braintrust and represents Congressional District 2 in Illinois. Representative Karen Bass is the chair of the Congressional Black Caucus and represents Congressional District 37 in California. Representative Barbara Lee represents Congressional District 13 in California.

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