During the first few weeks of the COVID-19 pandemic, state health officials did not actively collect data on hospitalizations and deaths by race or ethnicity, missing a vital opportunity to catalog and address potential inequities in access, treatment and outcomes for marginalized populations that other states have seen experience inordinate harm from the virus.

With 226 Colorado deaths recorded from COVID-19, as of April 9, and virus case numbers still rising statewide, state officials have only now begun requesting detailed demographic information from local health departments and hospitals, according to the Colorado Department of Public Health and Environment. Reporting entities are currently providing race and ethnicity data for only about 30% of positive test cases, state officials said.

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The knowledge gap is troubling for health care advocates, who point out clear evidence of discrimination and inequity in past public health emergencies, as well as among COVID-19 cases in other states with larger populations of color. Missing such data means missing the chance to direct extra resources to heavily impacted communities, alter treatment guidelines where inequities appear, and design control and prevention strategies for future COVID-19 outbreaks, they said.

“We know we need the information to make good policy. We have to have the data in real time to make real-time decisions, especially at moments like this when it’s a real crisis,” said Maggie Gómez, deputy director of the Center for Health Progress in Denver. (The organization is a Colorado Trust grantee.)

Failing to do that “can cost lives,” she added. “Here in the 21st century, we have the tools at our fingertips—we just need to use them.”

“I do think it’s important to release demographic information. It is important to inform the response in a number of ways,” said Jeff Bontrager, director of evaluation and research for the nonprofit Colorado Health Institute (CHI, also a Colorado Trust grantee).

State health officials acknowledged that in an interview on Wednesday, April 8, saying they are pressing harder for race and ethnicity information from test labs and providers, adding that epidemiology protocols call for patient interviews and confirmations that are time-consuming.

“Obviously, it’s very important to understand the population that is most impacted by this epidemic,” said Dr. Rachel Herlihy, the state epidemiologist.

A prominent civil rights group, the Lawyers’ Committee for Civil Rights Under Law, joined hundreds of physicians and advocates this week in demanding the federal Centers for Disease Control and Prevention (CDC) release national race and other demographic information for COVID-19 patients. The letter cited reports by media outlets like The Atlantic and ProPublica, showing that while demographic breakdowns by states are patchy at best, those that do have them are showing enormous disparities.

The Washington Post reported that in Illinois, African Americans make up 41% of COVID-19 deaths while they are 14% of the overall population; in Louisiana, African Americans have suffered 70% of deaths while making up 33% of the population.

African Americans and Latinx residents in the United States and in Colorado suffer from asthma, diabetes and heart conditions at higher rates than whites, and those conditions can intensify the impact of severe COVID-19 cases.

When asked about specific COVID-19 patient demographics, several major Colorado hospitals and health systems — specifically, Denver Health, UCHealth, SCL Health and Centura Health — either did not respond, or said they only report such information to the state and could not release it to the public.

The Tri-County Health Department, serving Adams, Arapahoe and Douglas counties, has broken out more specific demographic information on its COVID-19 cases so far, including racial and ethnic backgrounds. Of the 1,347 positive COVID-19 cases in these counties reported by Wednesday, 534 were among whites, 329 Latinx, 123 African American, 70 Asian American and 13 Native American or Pacific Islander.

“We share [these data] because we believe this is an important component of characterizing an important health issue like COVID,” Tri-County Health Executive Director Dr. John Douglas Jr. said in a statement. “We are currently looking at whether disease severity is worse in African Americans as has been reported elsewhere, [though that analysis is] not yet complete.”

The state currently releases demographic information on COVID-19 cases that includes county of origin and age range, such as cases and deaths among people age 60 to 69. The state data show a heavy concentration of severe cases and deaths in people above age 70. The cumulative total of 226 COVID-19 deaths as of April 9 included, for example, 179 people age 70 or older. That could reflect the high number of outbreak hotspots detected in Colorado skilled nursing facilities, and the increased vulnerability the CDC has warned about in older Americans.

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Vulnerabilities that researchers will want to check, Gómez said, include documented high rates of environmentally related health conditions in communities that are predominantly people of color, especially in neighborhoods with historically worse industrial or automobile pollution. For example, Pueblo County, with its relatively high Latinx population, has higher asthma rates that have been previously associated with nearby coal-fired power plants, Gómez noted.

“We can’t address health disparities without having the proper data,” she said. “We know disparities have existed for centuries.”

CHI’s Bontrager said real-time knowledge of detailed demographics can inform public health in the following ways:

Disproportionate deaths in certain communities can influence public health education through targeting and language translation efforts.

People with a higher rate of dangerous underlying conditions, such as heart disease or diabetes, could be given access to extra testing, distancing or treatment efforts.

Communities known to have higher rates of uninsurance or underinsurance may be avoiding COVID-19 testing or care for concerns about cost, and public policy changes could address that.

Still, Bontrager and Gómez both observed, it’s important not to use demographic information to stigmatize or invade the privacy of any community subset.

“It’s important for us to acknowledge that sometimes when we talk about these disparities by race or ethnic group, for example, it may come across to the audience that that group of people is the cause of the problem,” Bontrager said. “It’s not something inherent in the group that makes them disproportionately affected. It can be geography, income, a lot of other risk factors.”

Freelance writer Michael Booth wrote this story for The Colorado Trust, a philanthropic foundation that works on health equity issues statewide. It appeared at coloradotrust.org on April 8, 2020. The number of Colorado deaths attributed to COVID-19 and other related statistics were updated on April 10, 2020.

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