The Limits Of CDC Data On COVID In Native Americans : Short Wave A recent CDC report estimates Native Americans and Alaskan Natives are 3.5 times more likely to get COVID-19 than white people, and those under 18 are more likely to test positive.

This report is the first time the federal government has released hard numbers on the coronavirus in tribal nations, but it is most notable for what it does not say about how the virus is affecting Native Americans and Alaskan Natives. And some scientists believe that the CDC's current numbers are an underestimate.

Jourdan Bennett-Begaye, reporter and deputy managing editor of Indian Country Today, explains why the CDC data is so limited in scope — and her efforts to bring more data transparency to the table.

Jourdan wrote about the CDC's findings here. Support the work of Indian Country Today here.

Email the show at shortwave@npr.org.

The CDC Doesn't Know Enough About Coronavirus In Tribal Nations

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MADDIE SOFIA, HOST:

You're listening to SHORT WAVE...

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SOFIA: ...From NPR.

In August, more than five months into the pandemic, Jourdan Bennett-Begaye was about to see some data she'd been waiting for for a long time.

JOURDAN BENNETT-BEGAYE: Yeah, no. Truly, I was really excited because there hasn't been any data on American Indians or Alaska Natives since the start of the pandemic from the CDC.

SOFIA: That's right. Until last month, while universities had released a good bit of data about COVID and its effect on some Native American and Alaska Natives, the CDC really hadn't. Jourdan would know. She's a reporter and editor with the public media news organization Indian Country Today. She's also a citizen of the Navajo Nation, and she's been covering the pandemic since the beginning.

BENNETT-BEGAYE: As well as the 2020 census and all of Indian country.

SOFIA: No big deal, just all of Indian country, huh?

BENNETT-BEGAYE: (Laughter) Yeah.

SOFIA: Just the whole...

BENNETT-BEGAYE: (Laughter) I know.

SOFIA: That data that she'd been waiting to see was released by the government as part of a weekly CDC report in mid-August. The title at the top read, COVID-19 Among American Indian and Alaska Native Persons in 23 States (ph).

BENNETT-BEGAYE: And when I read it, it was kind of already something that I knew and a lot of Native public health experts already knew. And what I was really looking for is, you know, what is new that they gave to us?

SOFIA: The report said, because of existing inequities, Native Americans and Alaska Natives are 3.5 times more likely to get the coronavirus than white people. But anyone who'd been looking at tribal nations as closely as Jourdan had could have told you that they were being hit especially hard. For example, at one point earlier this year, the Navajo Nation, which spans parts of Arizona, New Mexico and Utah...

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UNIDENTIFIED REPORTER: The Nation's now reporting nearly 4,000 COVID-19 cases in a population of 175,000.

SOFIA: ...Had an infection rate greater than New York state.

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UNIDENTIFIED REPORTER: Eight p.m. curfews on weekdays and on weekends, a 57-hour lockdown - not even the gas stations are open.

SOFIA: That was just one tribal nation that got a lot of attention. Many others had infection rates that were also higher than the hard-hit states in the Northeast, like the Colorado River Indian Tribes in Arizona and California, the Yakama in Washington state or the White Mountain Apache Tribe in Arizona. And data from the states where many of those reservations are located weren't included in the CDC report, which gets at a larger problem.

BENNETT-BEGAYE: If there's not enough data, how do you know where the impact is? How do you know where you could send testing to, where there's a lack in testing? You have to have that data in order to create policies and to also figure out how to distribute vaccines.

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SOFIA: This episode - what the CDC does and doesn't know about COVID in Native American and Alaska Native tribal nations and how Jourdan is working to get more data to the people who need it most. I'm Maddie Sofia, and you're listening to SHORT WAVE from NPR.

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SOFIA: This report from the CDC, which we'll link to in our episode notes, does say two important things. The fact that Native Americans and Alaska Natives are more likely to get the virus - that's one. The second thing is that compared to white people, young folks in those communities, people under 18, tested positive at higher rates. When it comes to these findings, the CDC did make one thing clear. Here's one of the researchers on the study Sarah Hatcher.

SARAH HATCHER: It's really important to note that this disproportionate impact is likely driven by persisting social and economic inequity, not because of some biological or genetic difference.

SOFIA: Persisting social and economic inequities - we're talking about access to healthy food, housing, income levels - stuff like that. Here's Jourdan again.

BENNETT-BEGAYE: Yeah. In all, they're just, like, public health infrastructure - or in, like, the lack of investment in the public health infrastructures in Native communities. And you have, you know, overcrowded households. And there's a number of inequities that this pandemic is bringing out.

SOFIA: More on that in a bit - but first, Jourdan says that the CDC report is notable for what it does not include.

BENNETT-BEGAYE: This report did leave out tons of cases right now. It only looked at 23 states, and it didn't include Arizona, which is one of the hot spots in Indian country. And they account for at least a third of all the COVID-19 cases according to the report.

SOFIA: They also left out states like Oklahoma, Washington, California, Colorado - thousands and thousands of cases. And researchers from the CDC were upfront about leaving all that data out. Here's Sarah Hatcher again.

HATCHER: Our analysis is really not generalizable beyond those 23 states overall. And we're not really able to speculate whether we expect the overall rate to be higher or lower if we included more states.

SOFIA: The reason some states got left out was because the data they recorded about race and ethnicity, including that for Native American and Alaska Native COVID cases, was incomplete.

BENNETT-BEGAYE: And that was really - at least surprising to me because I - like, how can you not capture this data right here? You have Arizona where, you know, like in the Salt River Pima-Maricopa Indian Community, Gila River Indian Community, White Mountain Apache - their cases are in the thousands. You have the Tohono O'odham Nation and the Navajo Nation and the Pascua Yaqui Tribe. There's - it's just missing thousands of cases in this one state.

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BENNETT-BEGAYE: There's just so many gaps, like, in this data as well. I think it just points to how the CDC doesn't really know tribal communities and know the Indian health system and how it's built and set up.

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SOFIA: So let's talk about that. Now, it's much more complicated than this. But basically, when tribal nations signed treaties giving up their land, the federal government promised to provide them with health care and set up the Indian Health Service, a government-funded network of hospitals and clinics.

BENNETT-BEGAYE: I mean, they are to deliver adequate health care to tribal nations, but that's not what's happening right now. And that's what the pandemic is very much highlighting.

SOFIA: For years, the IHS has been way underfunded. Per person, the federal government spends about half the amount of money on the IHS as it does Medicaid. And that's part of the reason a lot of tribes, over time, have stepped up to establish their own privately run tribal health clinics.

BENNETT-BEGAYE: So throughout history, there were all IHS, but then tribes wanted to, you know, take hold and own and operate their own health care. So that's how these tribally run health clinics came about.

SOFIA: At this point, the large majority of health care facilities are operated by tribes - about 80%. And those facilities are encouraged but not required to share data that they collect on the coronavirus. But Jourdan says that's something a lot of them do not want to do, not with the federal government or even with reporters like her.

BENNETT-BEGAYE: Even now as, like, a Navajo woman, as a Navajo reporter, it's also difficult for me to try to get the data because - and I understand that. Like - you know, I grew up around it. My background is in health. And so I know, you know, it's because of settler colonialism. But it's also research, too. Like a lot of times in medical research, you have researchers going in - parachuting in and parachuting out, and they don't give back that data. I mean, at least from everything that I've seen the past several months, trust is, like, the main factor in this.

SOFIA: So that's one thing - trust. There's also the reality that doctors can get race or ethnicity wrong.

BENNETT-BEGAYE: In California, where it's pretty prevalent from what sources tell me, some doctors will just check a box on Native people because of their surname. Their surname is more likely to be coming from, like, a Hispanic or Latinx origin, like Dominguez or Garcia or - you know, so they just assume they're Latinx, but they're not.

SOFIA: And if those people wind up dying, that same incorrect data can wind up on their death certificate.

BENNETT-BEGAYE: Right. You don't know what's going on or the impact of the pandemic if you don't have that data. If you don't know what the person died from, how are you going to prevent it and prevent more from dying from it?

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SOFIA: These factors - lack of trust, underfunded public health infrastructure, racial misclassification - all add up to a picture of the pandemic that isn't complete. For example, there's an alarming lack of COVID hospitalization data for Native American or Alaska Native folks, stuff like if somebody was admitted to the hospital, the ICU or even died. Compared to white people, the CDC only has about a third of that information for Alaska Natives and Native Americans.

BENNETT-BEGAYE: And I think that's just - again, it just goes back to how well, you know, the state health department or even, like, the CDC or those public health experts there know these tribal communities and how they're set up.

SOFIA: These huge gaps in data are part of the reasons why some scientists think the CDC's key number - that Native Americans and Alaska Natives are 3 1/2 times more likely to get the virus - might be wrong. One epidemiologist, Dean Seneca, who worked for the CDC's Office of State, Tribal, Local and Territorial Support for more than 18 years, said the number could be much higher.

DEAN SENECA: Oh, yeah. No, I think definitely it's much higher because things are severely undercounted.

SOFIA: Jourdan Bennett-Begaye is not just reporting on this problem, the lack of available data about COVID in some tribal nations - she's trying to solve it.

BENNETT-BEGAYE: So I guess just to start, I started this, like, spreadsheet back in March out of just sheer curiosity.

SOFIA: And for the last six months, she and some colleagues at Indian Country Today have been compiling their own data sets on cases, deaths, test rates and other metrics from tribal nations. She'll find that data anywhere it's publicly available. Sometimes that means a tribal press release.

BENNETT-BEGAYE: Which are put onto their Facebook or social media pages, which is, from what I've seen, been a huge form of communication for them.

SOFIA: Or a lot of tribes have tribal radio stations.

BENNETT-BEGAYE: So we'll get data from there as well.

SOFIA: And Jourdan and her colleagues don't just grab the data and run. They call the tribes up, verify it.

BENNETT-BEGAYE: Of course, just introducing myself, being respectful and saying what we're doing, who I'm with, why we're doing it.

SOFIA: And then, once the tribe gives the OK, they make that data public.

BENNETT-BEGAYE: We put our data out there. We put our homework out there to show people what's happening. Right? And that's part of that trust-building with our communities.

SOFIA: So basically you're, like, emailing with tribes. You're going on their Facebook. You're trying to scrape the data from social media, from asking people directly. Like, that's a lot of work, Jourdan.

BENNETT-BEGAYE: (Laughter) Yeah, it is. It is. And I think I have to do - I have to give (ph) a lot of credit to our team as well because, you know, I think this is also why that's very important to have, you know, diversity in a newsroom and in health care and in all forms of industries. Right? You have people who bring a lot of experience and their networks with them, too. So if it wasn't for them, you know, I wouldn't have been knowing what's happening, you know, in Ho-Chunk Nation up in Wisconsin or maybe in the Pueblos in New Mexico or up in Washington state or in Alaska 'cause they know their communities, too.

SOFIA: Jourdan's data collection effort got noticed by researchers at Johns Hopkins Center for American Indian Health who, back in May, partnered with Jourdan and her news organization to create a more comprehensive database of information about how the virus is affecting tribal nations - a way to rapidly and transparently share their data with the people who need it most.

BENNETT-BEGAYE: We're going tribe to tribe trying to find all - collect all this data. They've recruited more than 30 volunteers to do this, which was really great. They're - have their engineering team helping us out. And I'm really excited for this. I'm really excited to see what comes out of this.

SOFIA: Yeah, yeah.

BENNETT-BEGAYE: So I'm looking forward to it (laughter).

SOFIA: It's kind of awesome, Jourdan. Just like reporter to reporter, you were like, I see that there's no data out here; I want to gather it myself. And now you've got Johns Hopkins and this partnership with a lot more people coming to actually find out what's going on - you know, what the data say about COVID in these communities. It is objectively very awesome.

BENNETT-BEGAYE: (Laughter) Yeah. No, it is. It is. And I won't lie. I was really pumped when they reached out. And I was just like blown - what do the kid say, mind blown, these days (laughter)?

SOFIA: Mind blown, that is what the kids say.

Thanks so much to Jourdan Bennett-Begaye, a reporter and managing editor with Indian Country Today, which, just like NPR, is a nonprofit news organization that relies on the support of its audience. You can support their work and also find more of Jourdan's reporting at the links in our episode notes.

Special thanks to Jessica Atwell over at Johns Hopkins Bloomberg School of Public Health for some major data assistance.

This episode was produced by me and Brent Baughman, edited by Geoff Brumfiel and fact-checked by Berly McCoy and myself. I'm Maddie Sofia. Thanks for listening to SHORT WAVE from NPR.

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