Lawmakers Push CDC for New Demographic Data on Coronavirus Patients

A health care worker with the UNLV School of Medicine tests a patient for the coronavirus at a drive-thru testing site March 24 in Las Vegas.

A health care worker with the UNLV School of Medicine tests a patient for the coronavirus at a drive-thru testing site March 24 in Las Vegas. John Locher/AP

A group of 17 lawmakers asked the Centers for Disease Control and Prevention to collect sex, race, ethnicity and other information to spot potential inequities in health care. 

A bicameral group of lawmakers called on the Centers for Disease Control and Prevention to broaden the demographic data it shares regarding people’s access to COVID-19 tests and care.

Sen. Ron Wyden, D-Ore., and 16 congressional colleagues penned a letter to CDC Director Dr. Robert Redfield urging the agency to expand the information it discloses regarding coronavirus patients. Doing so could help demonstrate inequities in testing and care that certain demographics of people may disproportionately face during the global health emergency.

“Access to testing continues to be a troubling and big question mark. We need to understand who is able to get tested and if they can get the health care they need,” Wyden told Nextgov via email Wednesday. The senator added that he’s becoming “increasingly concerned that specific communities—especially communities of color—are getting hit harder than others.”

Presently, CDC only releases some of the data it collects, which mostly encompasses age groups of patients testing positive, hospitalizations and fatalities. But in the letter, the members note that “it is important to document if particular groups in the United States are at greater risk for the virus and why.”

In that light, they requested that the agency take several deliberate actions. 

First, the lawmakers want CDC to publicly report demographic information—including sex, race, ethnicity, whether the person is a health care provider and more—in relation to each patient’s  access to testing, positive test results, hospitalizations, intensive care unit admissions, and fatalities on the Human Infection with 2019 Novel Coronavirus Person Under Investigation and Case Report Form. Wyden and his colleagues also request that the agency provide an input for health care workers’ “specialty” on those forms, and update the categories for race, ethnicity, sex, primary language and disability status, so that they are consistent with the Health and Human Services Department’s Guidance on Data Collection Standards. Finally, the lawmakers said CDC should make the demographic data available as a National Center for Health Statistics public-use data file so that relevant experts and federal agency officials can access and make use of the information.

“Researchers and public officials need data to know why [certain groups might be harder hit by COVID-19] and what must be done to right those wrongs,” Wyden said. “We also need a better understanding of how health care workers on the frontlines are being impacted."

The letter follows other requests from government officials, and policy and civil rights experts who have raised concerns that the virus is already making a disproportionate impact on African Americans and others. And at a press briefing held by the Coronavirus Task Force Tuesday, President Trump and the National Institute of Allergy and Infectious Diseases Director Dr. Anthony Fauci further reiterated the problem.

“We’re seeing tremendous evidence that African Americans are affected at a far greater percentage number than other citizens of our country,” the president said.

Fauci also noted that “unfortunately, when you look at the predisposing conditions that lead to a bad outcome with coronavirus—the things that get people into [intensive care units] that require intubation and often lead to death, they are just those very comorbidities that are, unfortunately, disproportionately prevalent in the African American population.” 

“So we're very concerned about that. It's very sad,” Fauci said. “There's nothing we can do about it right now, except to try and give them the best possible care to avoid those complications.”

The lawmakers have not received a response from the agency regarding their request for more information.

"To effectively beat this virus, we need complete transparency to get the full picture,” Wyden said.