by Laura Barron-Lopez, Holly Otterbein, & Maya King
Early data shows the coronavirus is hitting black and brown Americans especially hard. But spotty government data collection and publication could prevent resources from flowing to the communities most ravaged by the pandemic.
In Florida, five counties have revealed that black and Latino Covid-19 patients are getting hospitalized and, in some places, dying at higher rates than white patients. In Michigan, African Americans make up 14 percent of the state’s population but accounted for 33 percent of the Covid-19 cases and 41 percent of deaths as of Monday.
And when Louisiana Gov. John Bel Edwards announced Monday that his state would begin releasing preliminary data on race and coronavirus deaths, he said he had a “disturbing” note: “Slightly more than 70 percent of all the deaths in Louisiana are of African Americans.”
“That deserves more attention,” said Edwards, whose state is about one-third African American, according to the Census Bureau.
But the majority of states either aren’t actively ensuring collection or aren’t releasing full racial and ethnic data on those tested and treated for coronavirus. And without that data, two dozen health professionals and policymakers told POLITICO, it will be difficult to provide communities of color the resources to treat and recover from coronavirus — and to diagnose it in the first place.
“We cannot have a colorblind policy,” said Stephen Thomas, director of the University of Maryland’s Center for Health Equity. “With a colorblind policy — ‘Hey, we're all in this together’ — we'll be left with an explosion of Covid-19 concentrated in racial and ethnic minority communities.”
Covid-19 has pushed to the forefront longtime health disparities among black, brown, Native American and other minority populations in the country. Health professionals have warned that black and Latino populations are at potentially greater risk of severe illness from the coronavirus, due to prevalent comorbidities such as diabetes, heart disease, hypertension and asthma.
Minority groups are also less likely to have health insurance, complicating their ability and willingness to seek treatment for illnesses.
“If you look at pretty much any disease process, African Americans have higher rates or poorer outcomes for those diseases,” said Dr. Ebony Hilton-Buchholz, an associate professor of anesthesiology and critical care at the University of Virginia. “We’re seeing that race literally is an independent risk factor for many of these disease processes. And it’s heightened [under Covid-19].”
Harder hit, but trouble getting tested
One dataset shows that minorities appear to have more difficulty getting tested for coronavirus. A team of doctors at the Universities of Virginia and Pittsburgh, partnering with the data-tracking firm Rubix, used data from seven states and more than 103 hospital groups and patient advocacy networks to show that thousands of minority patients were not receiving testing for the coronavirus despite showing symptoms.
Hilton-Buchholz pointed to New York, New Orleans and Atlanta as cities that are behind on equitable testing practices. Despite being home to large black and Latino populations, Louisiana is the only one of those three states that has released racial-ethnic data about testing, diagnosis or hospitalization from Covid-19. In Virginia, where Hilton-Buchholz practices, 53 percent of racial-ethnic data is listed as “unreported.”
“This is probably one of the most important lessons that we've learned from [Hurricane] Katrina, [from] the 2008 financial crisis: If we're not paying attention to data that is disaggregated by race and ethnicity, the efforts that we often put in place wash right over those communities and miss them,” said Michael McAfee, CEO of PolicyLink, a research institute focused on racial equity.
In Milwaukee County, Wis., as of Monday, African Americans make up almost half of confirmed coronavirus cases and 73 percent of the 45 deaths — compared with 26 percent of the county population. “A big reason why we see higher rates of Covid-19 in the [black] community is the institutional, historical, currently ongoing issue of lack of resources, and institutional and individual effects of racism,” said Dr. Benjamin Weston, director of Medical Services for the Milwaukee County Office of Emergency Management. “It certainly isn't coincidence why that community suffers the greater burden of the vast majority of diseases in our county.”
It’s an issue being raised in Congress, which has already passed legislation to spend $2 trillion in emergency funds combating the epidemic and its economic effects. Last week, five Democratic legislators sent a letter to the Department of Health and Human Services seeking the collection and release of coronavirus information related to race and ethnicity. Sen. Ron Wyden (D-Ore.) and several colleagues are planning to follow up with a letter to the Centers for Disease Control and Prevention asking for more reports on prevalence of coronavirus among people of color.
The CDC did not respond to questions about whether it has issued guidance to the states about gathering demographic data or if it plans to release racial and ethnic data on coronavirus.
Jeff Lancashire, a spokesperson for the CDC’s National Center for Health Statistics said the CDC will release demographic data on Covid-19 deaths, “but not for a while.”
Some of the gaps can be attributed to testing labs that are submitting reports with fields left blank or missing information. Effectively transmitting complete demographic data isn’t a new problem, said Janet Hamilton, head of the Council of State and Territorial Epidemiologists. But public health experts are “now in a situation where we need the information instantaneously,” Hamilton added.
“The public health reporting piece has been deprioritized and we're now seeing the effects of public health reporting consistently deprioritized year after year,” Hamilton said. “We don't have a first-century data superhighway because public health has been so underfunded for so many years.”
New York, which has been a national hot spot for the disease, has not released racial and ethnic data. A spokesperson for the state health department said such data “has not been part of our intake collection,” but it “is working to incorporate it going forward as part of our constantly evolving public health response.”
California isn’t releasing racial and ethnic data, saying the public health department is “continually assessing what information can and should be made public.” A Georgia health department spokesperson said race and ethnicity “is one of the questions on the form used by facilities to report testing results” but the state, which is 32 percent black, is not releasing the data.
And many states and organizations that are gathering racial data are still suffering from gaps in the reporting. An analysis of reports in one Indiana database found that 59 percent of tests came back without any race. “Every group is undertested based on the data we have,” said Brian Dixon, of the Regenstrief Institute, who attributed the under-reporting to a combination of manual data entry and pressure to return rapid results.
‘Maria, your district is in trouble’
Philadelphia City Councilwoman Maria Quiñones-Sánchez got a call on March 28 from Dr. Kathleen Reeves, a senior associate dean at Temple University’s Lewis Katz School of Medicine.
“She was like, ‘Maria, your district is in trouble,’” said Quiñones-Sánchez, who represents a largely Latino community. “She said they were getting an increase of Latinos testing positive for coronavirus and they were very concerned.”
Reeves said her concerns were based on “totally anecdotal” information. “Some of our practitioners thought they were seeing more Hispanic patients who were positive than other patients," she said.
But it’s impossible to know for certain how much trouble Quiñones-Sánchez’s district and other Philadelphia neighborhoods are in. The state of Pennsylvania is not collecting data on the race and ethnicity of people who contract coronavirus, though the city of Philadelphia has collected and released some limited figures showing about half of coronavirus cases in the city are African American.
The issue is especially important because decisions about setting up testing centers might be missing the most affected areas, Reeves said. Minority neighborhoods across the country have often been the last to see coronavirus testing sites set up, and Reeves noted that people without a car cannot access the drive-through sites in Philadelphia.
Maryland state legislator Nick Mosby, who represents West Baltimore, feels as though he’s “banging his head against the wall.” For two weeks, Mosby has pleaded with the state’s public health department to release data he believes it has gathered on the race and ethnicity of those being tested for the novel virus.
“We need the data right now,” Mosby said. “There's no way that you are reporting on age and gender, but in the same breath, you can't report out on race.”
In email exchanges with Maryland public health officials, Mosby was told the state health exchange would develop a plan of action to include race and ethnicity in its Covid-19 data. But progress on that plan won’t come until roughly April 10. Mosby sent a letter to Maryland Gov. Larry Hogan on Monday requesting he release racial data on testing, positive cases, hospitalizations and deaths.
David Holtgrave, a professor of public health at the University of Albany who worked on the HIV epidemic at the CDC in the 1990s, said it would be “very impactful” for the CDC to make a strong statement telling states how “critically important” it is to report and make public demographic data and health disparities.
But without widespread testing, racial and ethnic data will be incomplete, he said.
“Only when you get to that more widespread use of testing are you going to be able to start to really look at which communities are differentially impacted,” said Holtgrave. “And we need to get there as quickly as we possibly can.”
Darius Tahir contributed to this report.
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