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Blacks May be Bearing the Brunt of Covid-19, But Access to Data is Limited
Elizabeth Cooney
08 Apr 2020
Blacks May be Bearing the Brunt of Covid-19, But Access to Data is Limited
Blacks May be Bearing the Brunt of Covid-19, But Access to Data is Limited

The feds don’t keep racial data on the coronavirus, but local reports show Blacks are dying at multiple the rates of whites in some cities.

“African Americans in many large cities began to practice social distancing behavior much later than whites, largely due to the fact [whites] could stay at home to work.”

Stark statistics are coming to light only now and only in piecemeal fashion showing that African Americans are disproportionately affected by Covid-19. The racial divide in who gets infected, who gets tested, and who dies from Covid-19 is emerging from the few cities and states whose data are public.

African Americans in Illinois, for example, accounted for 29% of confirmed cases and 41% of deaths as of Monday morning, yet they make up only 15% of the state’s population, according to the Illinois Department of Public Health, one of just a handful of government agencies sharing information on who is hardest hit by the virus. Michigan mirrors Illinois, with 34% of Covid-19 cases and 40% of deaths striking African Americans, even though only 14% of Michigan’s population is African American. The story is similar in Wisconsin, where ProPublica first reported that African Americans number nearly half of the 941 cases in Milwaukee County and 81% of its 27 deaths while the population is 26% African American.The Centers for Disease Control and Prevention distributes data on age, gender, and location of Covid-19 patients but not their race or ethnicity. The CDC did not respond to a request for comment made on Monday, but on Tuesday CDC spokesman Scott Pauley pointed to information sent to the agency from public health departments around the country. “Unfortunately, case report forms are often missing important data, including race and ethnicity. To address this and other data gaps, supplementary surveillance systems are being stood up to better capture ethnicity and race data, as well as other key demographic or clinical information.”

“African Americans in Illinois, accounted for 29% of confirmed cases and 41% of deaths, yet they make up only 15% of the state’s population.”

CDC’s current posture has set off challenges from legal and medical professionals to release that data so resources can be better allocated to the people who need them the most.

The Lawyers’ Committee for Civil Rights Under Law and nearly 400 medical professionals have demanded that the U.S. Department of Health and Human Services release daily racial and ethnic demographic data on Covid-19 tests, cases, and outcomes. They cited both the 1964 Civil Rights Act and the Affordable Care Act, which prohibit discrimination in health care services. The absence of data amounts to denial of appropriate care, the group argues.

“We are deeply concerned that African American communities are being hardest hit by the Covid-19 pandemic, and that racial bias may be impacting the access they receive to testing and healthcare,” Kristen Clarke, president and executive director of the committee, said in a conference call with reporters on Monday.

The grim reality reflected in those limited statistics fits with longstanding research on the social determinants of health as well as the very specific risk factors that come into play for the spread of the coronavirus.

“Racial bias may be impacting the access Blacks receive to testing and healthcare.

Lisa Cooper, an internal medicine physician and a professor at the Johns Hopkins Bloomberg School of Public Health, said she’d have to speculate, given the dearth of data, but she listed multiple reasons why as a group African Americans of lower income are more likely to become ill: People working for an hourly wage don’t have the luxury of being able to shelter at home or the means to buy two weeks’ worth of healthy food. They may work in jobs deemed essential, such as in public transportation, public safety, or health care. If they quit, they would lose their health insurance, if they have it, and access to health care. If they continue working, they risk exposure to the coronavirus. And they are more likely to have diabetes, high blood pressure, or asthma, chronic conditions that put them at higher risk for more serious Covid-19 illness.

“African Americans in many large cities began to practice social distancing behavior much later than whites, largely due to the fact [whites] could stay at home to work,” Cooper told STAT.

Like dominoes, one risk factor topples into another, said Brian Williams, a trauma surgeon, intensive care doctor, and associate professor at University of Chicago Medicine. He was shocked when he learned that in his city, 70% of the people who died from the virus were African American, according to data analyzed by WBEZ.

“I’m disheartened because the disparity is so great and I wish I could do more, although I’m a doctor with a certain skill set that is useful right now,” he said in an interview. “I wish I could do a lot more.”

If there were more complete information, more could be done to help people who are sick and stanch the spread of disease, he said.

“People working for an hourly wage don’t have the luxury of being able to shelter at home or the means to buy two weeks’ worth of healthy food.”

“We need to have a demographic breakdown of who will be impacted and how we as a health care system can deploy all our resources and personnel in the most efficient and effective manner to ensure the safety and well-being of the entire American public,” Williams said. “Now we’re flying blind because we don’t know.”

That racial and ethnic demographic data are being collected — it’s just not being reported out to the public, said Uché Blackstock, an emergency physician in Brooklyn, N.Y.

“I think it speaks to just how broken our system is,” she said. “We actually have the data in our city. All of the electronic medical records systems collect racial and ethnic demographic data. It’s a matter of getting our Department of Health to disclose what that data shows. ”

Williams is looking beyond the current crisis, beyond the surge of patients he fears is still coming.

“This affects all of us, either directly or indirectly,” he said before returning to the ICU. “And when the pandemic is over, our recovery plan should be one of unity in order to rebuild a better society that recognizes the shared humanity of everyone living within our borders.”

Liz Cooney is editor of STAT Plus, STAT’s subscriber-only service for pharma, biotech, business, and policy coverage. She served as the Boston Globe’s inaugural White Coat Notes blogger, before moving on to science writing and editing stints at Harvard Medical School and the Broad Institute of Harvard and MIT. Most months you’ll find her training for marathons.

This article previously appeared in Stat News.

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