Frustrations grow over incomplete racial data on COVID-19 cases, deaths

Multiple states and U.S. territories are not fully reporting the racial makeup of COVID-19 cases and deaths, frustrating lawmakers and advocates who argue the missing data will hamper the coronavirus response.

Nearly three months after the first COVID-19 case was confirmed in the U.S., 10 states, including New Mexico and Nevada, and five territories have not released racial data on coronavirus deaths, according to the COVID Tracking Project and the Antiracist Research & Policy Center. 

While most states have released some data on the racial makeup of confirmed COVID-19 cases, the figures are often incomplete. Of the 1.1 million cases reported to the Centers for Disease Control and Prevention (CDC), the race is unknown in more than half. 

The result is an incomplete picture of the pandemic’s impact on people of color, who have been hit particularly hard by the deadly disease.

Part of the problem stems from the fact that states are not required to submit demographic data on COVID-19 to the CDC, lawmakers and advocates say. The ones that submit the information do so voluntarily.

Rep. Rosa DeLauro (D-Conn.), chairwoman of the House Appropriations subcommittee on health, said lawmakers have long known that the CDC’s surveillance of public health issues needs to be updated.

A report sent by the CDC to several congressional committees Friday “exposes the gulf that exists in our public health data,” DeLauro told reporters on a call Monday.

The report lacked complete data and the CDC said it was working to address the issue of incomplete racial and ethnic data coming from states and labs.

“Not all of our states are up to getting and providing this data. We cannot let these racial disparities go ignored and unaddressed,” DeLauro said.

Lawmakers and advocates say federal law should require states to report this information to the CDC.

“The CDC can’t mandate; the CDC provides guidelines. We need to come back and we need to mandate what gets done,” DeLauro said, referring to Congress. “We have to require states to do that, but we also need to provide the funding necessary to really create a strong public health infrastructure.”

One of the coronavirus response bills passed by Congress included $500 million to modernize the public health infrastructure, but the provision did not mandate the reporting of racial and ethnic data on the pandemic.

“This issue of access to data is essential,” said Michael McAfee, president and CEO of PolicyLink, a national research organization advocating for racial and economic equity.

“This is a values statement around who matters and whether we will erase them by ignoring the data that would tell the story of their plight, but also ignore them in terms of recovery efforts,” he said. “The bottom line is: If we are going to recovery successfully, if we are going to make sure those most impacted have resources they need to recover and thrive, this data is essential.”

After pressure from advocates and public health experts, most states now report the race and ethnicity of each COVID-19 case in some capacity. But the completeness of the data varies widely by state. And three states still don’t release the racial data of either COVID-19 cases or deaths: North Dakota, Nebraska and Nevada.

This makes it difficult to understand the scope of the problem and how best to use limited resources, said Utibe R. Essien, an assistant professor of medicine at the University of Pittsburgh who co-authored a study on this issue with colleagues from Yale and Tufts University.

“It’s wonderful that we have data way better than where we were at the beginning of April, and certainly way better than we were at the start of this crisis. But to be able to fully and clearly addressing disparities, we do need to have as close to 100 percent of these data available,” he said.

Essien’s study, which has not yet been peer-reviewed, found that black Americans were 3.5 times more likely to die of COVID-19 than whites. Latinos were two times more likely to die than whites.

However, states like Massachusetts and Pennsylvania were missing race data in more than 40 percent of their COVID-19 cases.

Joia Crear Perry, president of the National Birth Equity Collaborative, which works to address racial disparities in maternal and infant health, said she has faced similar struggles in getting states to track maternal deaths by race. Black mothers are disproportionately more likely than white mothers to die from pregnancy and childbirth. Congress eventually appropriated funding for states to track that information.

“There is an opportunity going forward for Congress and future administrations to require state and local health departments report data by race,” she said.