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

Episode Date: September 28, 2020

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 [e-mail] pcm.adswizz.com for information about our collection and use of personal data for sponsorship and to manage your podcast sponsorship preferences.NPR Privacy Policy

You're listening to Shortwave from NPR. In August, more than five months into the pandemic, Jordan Bennett Begay was about to see some data she'd been waiting for for a long time. Yeah, no, truly, I was really excited because there hasn't been any data on American Indians or Alaska natives since the started the pandemic from the CDC. That's right, until last month, while universities had released a good day, bit of data about COVID and its effect on some Native American and Alaskan natives, the CDC really hadn't.

Jordan 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. As well as the 2020 census and all of Indian country. No big deal, just all of Indian country, huh? Yeah. Just the whole... I know.

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 Alaskan native persons in 23 states. 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. The report said, because of existing inequities, Native Americans and Alaskan 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 Jordan 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. The nation's now reporting nearly 4,000 COVID-19 cases in a population of 175,000.

Had an infection rate greater than New York State. 8 p.m. curfews on weekdays and on weekends, a 57-hour lockdown. Not even the gas stations are open. 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 English. Arizona and California, the Yakima 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 it a larger problem. 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. This episode, what the CDC does and doesn't know about COVID in Native American and Alaskan native tribal nations and how Jordan is working to get more data to the people who need it most. I'm Maddie Safaya and you're listening to Shortwave from NPR. 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. Persisting social and economic inequities. We're talking about access to healthy food. food, housing, income levels, stuff like that.

Here's Jordan again. Yeah, I know there's 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, overcredit households. And there's a number of inequities that this pandemic is bringing out. More on that in a bit. But first, Jordan says that the CDC report is notable

for what it does not include. 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 hotspots in Indian country. And they account for at least a third of all the COVID-19 cases, according to the report. They also left out states like Oklahoma, Washington, California, Colorado, thousands and thousands of cases. And researchers from the CDC were up front. about leaving all that data out. Here's Sarah Hatcher again.

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. And that was really, at least surprising to me, because how can you not capture this data right here?

You have Arizona where, you know, like in the Salt River Pima, Maricopa, and Nians. community, Heala River Indian community, White Mountain Apache. Their cases are in the thousands. You have the Tonahonam Nation and the Navajo Nation and the Pasquayaki tribe. It's just missing thousands of cases in this one state. There's just so many gaps 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. 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. 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. 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. So throughout history, they 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 Round Health Clinics came about. 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 Jordan says that's something a lot of them do not want to do, not with the federal government, or even with reporters like her. 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 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. So that's one thing, trust. There's also the reality that doctors can get race or ethnicity wrong. 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 Linux or origin.

like Dominguez or Garcia or, you know, so they assume they're Latinx, but they're not. And if those people wind up dying, that same incorrect data can wind up on their death certificate. 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? 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 Alaskan 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 Alaskan natives and Native Americans. 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 this public health experts there know these tribal communities and how they're set up. 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 three and a half 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. Jordan Bennett Begay is not just reporting on this problem, the lack of available data about COVID in some tribal nations. She's trying to solve it. So I guess just to start, I started this like spreadsheet back in March out of just sheer curiosity. 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. 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.

Or a lot of tribes have tribal radio stations. So we'll get data from there as well. And Jordan and her colleagues don't just grab the data and run. They call the tribes up, verify it. Of course, it's introducing myself being respectful and saying what we're doing, who I'm with, why we're doing it. And then once the tribe gives the okay, they make that data public. 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. 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, Jordan. Yeah, it is, it is. And I think I have to do, I think it's giving 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 in 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, because they know their communities, too. Jordan's data collection effort got noticed by researchers at Johns Hopkins Center for American Indian Health, who back in May partnered with.

Jordan 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. We're going tribe to tribe trying to collect all this data. They've recruited more than 30 volunteers to do this, which is really great. They 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.

So I'm looking forward to it. It's kind of awesome, Jordan. Just like reporter to reporter, you were like, I want to gather. I see that there's no data out here. I want to gather it myself. And now you've got Johns Hopkins in 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.

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 kids say? Mind blown these days. Mind blown. That is what the kids say.

Thanks so much to Jordan Bennett-Megay, 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 Jordan'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 Brett Bachman, edited by Jeff Brumfield, and fact-checked by Burley McCoy and myself. I'm Maddie Safaya. Thanks for listening to Shortwave. from NPR.