By Hannah Critchfield

American Indians account for 1 percent of the COVID-19 cases in the state, according to the North Carolina Department of Health and Human Services website, according to the U.S. Census, about 2 percent of North Carolinians identified as American Indian in the last census.

But Gregory Richardson, executive director of the North Carolina Commission of Indian Affairs, is concerned the rate of infection is actually much higher.

“When you move across the state — to the Lumbee, Coharie, Waccamaw Siouan, Occaneechi, we have no ability to see data in terms of the impact of COVID-19 on these tribal communities,” said Richardson. ”You could have cases in the tribe, but unless families tell you by word-of-mouth who’s been diagnosed, you don’t know how many cases you have.”

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North Carolina boasts the largest American Indian population east of the Mississippi River, with eight state-recognized tribes comprising a total of about 168,000 people. (The Eastern Band of Cherokee is the only one also recognized by the federal government.)

Yet Richardson and others are worried many of them are lost in the state’s missing demographic data in their confirmed COVID-19 count.

As of June 18, of the 48,188 tests the state has conducted that have come back positive for the novel coronavirus, 14,794 of them, about a third of the total, lack information about the race of the infected person.

The state is trying to remedy these gaps in data collection due to recent requirements from the federal government.

“We agree … that it is very important for us to now make the next step and get more information broken down by county,” said Mandy Cohen, secretary of the state Department of Health and Human Services, at a June 17 press conference. She said that this information was likely to come in next week. “Right now you can go and there’s an interactive map that helps you look at our cases both by county and by ZIP code, and we hope to layer on additional race and ethnicity data.”

‘Independent, disjointed health care system’

Cohen said that the problem initially arose at the local level. DHHS relies on local health department employees, as well as some additional contractors through the Carolina Community Tracing Collaborative, to conduct contract tracing.

“Often when we get a positive test, our tracers at the local health department call folks up and they talk to them about staying isolated,” said Cohen. “And in that context of it, they capture some additional information.”

Cohen said that until recently, exactly what data they collected was somewhat ad hoc — a tracer might ask for someone’s name and birthday but may neglect to ask about gender or race.

“The information that was transmitted was often … just enough information to get that result back to the ordering provider and to the patient,” Cohen said in a June 10 press conference. “It was a very manual process of collecting that data, so it wasn’t often capturing race and ethnicity.”

In the United States, health disparities have long played out along racial divides. American Indians, for example, have a higher prevalence of infectious disease death than non-Hispanic whites, and the highest rate of diabetes nationwide, according to the Centers for Disease Control and Prevention.

The lack of data poses problems for other racial groups. For instance, existing data show that Black people have disproportionately higher rates of the virus. Black North Carolinians account for just 22 percent of the population, but 26 percent of all state COVID-19 cases. With missing data, it could be that the infection rate is higher, or lower.

“That is statistically significant,” said Cohen. “Even if you account for the missing data that we have there.”

Accurate data collection will be critical moving forward, as Cohen said they are nevertheless using racial and ethnic demographic data to shape the state’s response.

“We know that we need to be focusing our response efforts to target what the data is showing us, which is that our historically marginalized communities are disproportionately impacted,” she said. “And so we need to bring our response to meet that data.”

Labs not required

As of June 4, the federal government now requires laboratories testing for the novel coronavirus to report race and ethnicity data, according to guidance from the U.S. Department of Health and Human Services.

“I will tell you that we have a very disjointed, independent health care system across the state,” said Gov. Roy Cooper at a press conference on Monday. “There’s still some reporting that we want that we’re not getting. But I know that we’re working to make sure that all of that demographic data is reported to us.”

When a person tests positive for COVID-19, DHHS or a local health department enters their demographic information into the North Carolina Electronic Disease Surveillance System (NC EDSS). At some labs, this is done electronically — test results and demographic information collected about the person automatically feed into the system. Laboratories without electronic reporting send results to the state agency or local health department through a fax or electronic message, and then health employees must enter it manually.

At the Monday press conference, Cohen added that DHHS is working with their information technology department to make data collection a more automated process.

The changes in lab reporting may signal shifts in numbers for American Indians with COVID-19, but gaps in particular tribal affiliation will remain.

American Indians in the state, like other racial groups, may begin to see more accurate overall numbers — but gaps will still remain when it comes to determining which tribal nations are experiencing higher rates of COVID-19.

Local health departments are encouraged to ask people diagnosed with COVID-19 who identify as American Indian about tribal affiliation, said Kelly Haight Connor, a spokesperson for the state DHHS, but it’s not likely that lab results will routinely include information on tribal nations.

“That process is not done quite yet, but we’re working very, very rapidly to make this a much less manual process,” she said, noting that DHHS currently collects demographic information at the tail end after a test is confirmed positive and contact tracers reach out. “Cause right now, we just go one-by-one and make phone calls.”

Haight Connor said contact tracers are also looking back to past confirmed COVID-19 cases with missing demographic data in an attempt to recover their information.

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Critchfield is NC Health News' Report for America corps member. Report for America is a national service program that places talented emerging journalists in local newsrooms to report on under-covered...

One reply on “North Carolina lacks critical racial data for a third of its COVID-19 cases. Here’s why.”

  1. Native Americans is an ethnicity. We are not recognized due to poorly written federal regulations (and laws). Labels matter – and until we get this resolved – our people will continue to be harmed by barriers to gather data.

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