The CDC did not respond to questions about what percentage of confirmed coronavirus deaths are missing race and ethnicity data. The new guidance, which standardizes how labs and testing locations should collect demographic data, will not require states to backfill gaps for earlier cases.
Meanwhile, data collection disparities among individual states have grown ever wider. Experts say that the persistent lack of data could determine whether the most vulnerable communities get the testing, contact tracing and resources for hospitals and clinics they need as new cases surge. It could also dictate preparedness for a second wave.
In some states, like Ohio and Wisconsin, health officials spent weeks painstakingly tracking down the data and compiled race and ethnicity information for the vast majority of their coronavirus cases. But many states have largely failed at that task to date.
Minnesota is missing race and ethnicity details for roughly 20 percent of its coronavirus cases, according to data compiled by the COVID Tracking Project. But already, African Americans who make up just 6 percent of the population account for more than a quarter of Covid-19 patients and 8 percent of deaths. Latinos account for 5 percent of the population and 28 percent of cases and 4 percent of deaths.
Arizona’s data already show Native Americans making up a disproportionate percentage of cases, though with racial details for one-third of cases missing, it’s difficult to measure the true toll. More than two dozen other states group Native American cases into a broader “other” category or don’t collect the data at all, a practice that tribal leaders say makes it difficult to target resources where they are most needed.
In Oakland County, Mich., which encompasses the Detroit metropolitan area, African Americans comprise 14 percent of the population, 31 percent of cases and 36 percent of deaths.
“One of the things we’ll be able to do better if there’s a second wave is respond more quickly to communities of color and help to mitigate the virus there sooner,” said David Coulter, the county’s health executive. “If we had acted on these disparities sooner in the first wave, we could’ve probably saved more lives.”
And in South Dakota — which houses the nation’s third-largest Native American population — officials are not collecting race or ethnicity data for deaths at all despite indications that minority populations across the board are bearing an outsize burden of the disease.
“I am suspicious that we may actually be underreporting some of these disparities,” said Utibe Essien, a health equity researcher at the University of Pittsburgh.
Ebony Hilton Buchholz, an associate professor of anesthesiology at the University of Virginia, said she expects a similar spike attributed to Memorial Day festivities to happen two weeks following the Floyd protests. But she said that if the protests presented a risk, racism too is a public health threat.
“The same determinants that lead to worse health outcomes are the same determinants that lead to an increase in what we see with police brutality,” said Hilton Bucholz. “If you look at the intersectionality of pandemic and protest they share the same vein. It’s the same disease.”
Two months after Trump announced that a council led by Housing and Urban Development Secretary Ben Carson and Sen. Tim Scott (R-S.C.) would craft a plan to address minority populations disproportionately ravaged by the virus, no such plan has been released. HUD did not respond to a request for comment about the plan.
One month after saying the White House “will soon be awarding a large contract to guarantee a national network” to improve testing and care for racial and ethnic minorities, the contract has not been awarded.
HHS spokesperson Mia Heck told POLITICO that the administration plans to finalize that contract at the end of the month, and that HHS has a “foundational national strategy” that includes efforts to boost testing in socially vulnerable areas and a series of initiatives aimed at supporting Covid-19 care for minorities.
Still, the absence of any concerted national effort to fill in the data gaps has raised particular worries about states like Texas, which have put little effort so far into investigating the true depth of the impact on black and brown patients.
The state — which is home to the nation’s second-largest Latino population — has no racial or ethnic data for more than 80 percent of its cases and 7 out of every 10 of its coronavirus deaths. It was not until June 5 that Gov. Greg Abbott committed to step up the state’s effort to collect that information, following weeks of pressure from state lawmakers.
California still faces access and data gaps making it hard to ascertain just how badly the coronavirus has affected people of color, said Bob Kocher, a venture capitalist and former Obama administration official who’s now advising the Golden State’s testing efforts. Of the state’s roughly 1,000 testing sites, only about 100 are run by the state — the state-run labs are reporting racial and ethnic data but the rest are not.
“If you’re low income and not Caucasian, you probably have low access to care,” said Kocher. “There’s such a shortage of health care in some pockets, it’s a health care desert.”
The state has been trying to target communications and testing to underserved communities by working with local organizations and sending mobile labs run by the National Guard, he said. But part of combating the virus over the long term is getting “good baseline testing capabilities in all communities,” which often are lacking in communities of color, with underfunded and understaffed health centers.
Health officials have also encountered cases where hospitals are reluctant to collect the details for fear the results will reflect poorly on them or the surrounding community — especially when others are not doing it consistently either.
“Maybe it just has to be, you don’t provide the data, you don’t get paid,” said Marcus Plescia, the chief medical officer for the Association of State and Territorial Health Officials. “It’s got to be a level playing field.”
Uché Blackstock, a physician on the front lines of the pandemic in New York, also thinks about the devastating loss of fellowship and family in the minority communities still battling the virus.
“We will likely see the repercussions of the pandemic on these communities not only for decades but for centuries if we don’t move urgently and swiftly to address the underlying factors including structural racism,” said Blackstock, who also founded Advancing Health Equity, an organization trying to close gaps in care.
“If we don’t really get those accurate numbers,” she added, “we will never truly grasp how vulnerable black and Latino communities were before this pandemic and during the pandemic.”