Imagine if your state health department put out a press release specifically naming your family, and listing the number of your family members with COVID-19.
That, says Ken Lucero, is exactly how it felt in April when New Mexico announced a coronavirus hotspot in his community, the Pueblo of Zia.
“We kind of felt like someone was airing our dirty laundry, or just coming in and invading our privacy at a very private moment,” said Lucero, who is a tribal administrator with the pueblo. He also has a PhD in social justice and previously ran the Center for Native American Health Policy at the University of New Mexico.
Lucero and his colleagues had been posting updated COVID numbers on the pueblo’s Facebook page. But then they started noticing those numbers appear elsewhere, like in news articles, and then, most alarmingly, statewide press releases.
“We felt that was unjustifiable,” Lucero said.
He and his colleagues knew how many people were sick, but they didn’t think it was the right time to share that information with people outside of the pueblo.
“We were trying to keep that information quiet. There was going to be an appropriate time, an appropriate place...under our terms,” he said. “We were trying to be very protective of our community and of our people, and for someone to come in and kind of sideswipe us like that was very disheartening.”
About 900 people live in the Pueblo of Zia. When the virus hit, community leaders were trying to identify positive cases, coordinate how to keep people safe without widespread panic, organize food and water donations and figure out how to shut down the village so no one would come or go unless it was an emergency.
“There was such chaos and so much uncertainty about what was going on and how it was kind of seeming to be unraveling for us,” Lucero said.
At that point, he said, “the last thing we needed” was to have to fend off reporters who wanted to know just how bad the COVID situation was, to wonder what kind of discrimination his community members might experience because they’d been branded as a COVID hotspot, and to think: What’s the point of being a sovereign nation if you aren’t treated like one at a critical moment?
“We are sovereign nations,” said Lucero, who pointed out that the Pueblo of Zia has been in the area since the 1300s — at least. “The information about our people is ours and should be ours to control and to allow use of it. Anything less than consultation or information or requesting permission is unacceptable.”
There’s a name for what Lucero described: data sovereignty. It’s something that tribes and researchers like Stephanie Carroll have been fighting for a lot lately.
“We really need to have Indigenous data by — and for — Indigenous peoples,” said Carroll, who is an associate director for the Native Nations Institute at the University of Arizona, where she’s also a professor of public health. She identifies as Ahtna, from the Native Village of Kluti-Kaah in Alaska.
She co-founded the United States Indigenous Data Sovereignty Network, which tries to ensure that tribes have control over data about their people, and that it’s used to advance their wellbeing. She says they were making progress with state offices and universities. But then the pandemic hit, and began to highlight all the cracks in the system.
“Some places where we thought we might've made progress in asserting the rights of tribes to be at the table or asserting the ethical responsibilities or working with Indigenous peoples, we see that that's not really the case,” said Carroll. “There wasn't systemic change.”
And the incremental change that had occured crumbled.
“When you end up in a situation of rapid change, and you need information quickly, the institution reverts back to behaving like it always did and how its policies and practices are actually written," Carroll said. "And most of those are from the settler-colonial perspective.”
Carroll says there are some notable exceptions. The Navajo Nation collects and reports its own COVID-19 data, through its health department and epidemiology center. And the state of Arizona releases ZIP-code-level COVID-19 data, but suppresses the numbers about tribes until or unless the tribe agrees to it.
Carroll said that’s important, because data sovereignty isn’t just about being polite to other nations. Data is powerful, and depending on how it’s used, it can hold the answer to solving problems or, Carroll said, it can be “weaponized.”
Last month, reporting from the publications ProPublica and New Mexico In Depth based on anonymous sources suggested that a hospital in Albuquerque was racially profiling women who entered the hospital to give birth, assuming that soon-to-be-moms were at high risk of COVID-19 if they lived in pueblos, regardless of whether those pueblos were actually in ZIP codes classified as COVID-19 hotspots.
As she wrote on Twitter, Carroll suspects that New Mexico’s policy of publicly releasing ZIP-code-level COVID-19 data has likely contributed to assumptions about the COVID risk of certain people, including Indigenous women. “Reporting of tribal-specific data is making tribes more visible in ways that can result in harm and ignores inherent Indigenous sovereign rights,” she wrote.
(A spokesperson for the hospital said the ProPublica article was “misleading,” that their COVID-19 screening practices “are based on state and national guidelines,” and that “all patients, visitors and staff entering our facility are screened for COVID-19 based on exposure, symptoms of COVID-19, and communities that are determined by the Governor’s Office and the [New Mexico health department] to be at increased risk, such as nursing home patients, dialysis patients and hard-hit geographical areas.”)
In late June, Carroll was among an international group of researchers that released recommendations on how to share Indigenous COVID-19 data in a way that doesn’t sow misinformation and misuse.
But misuse of data is only one issue. According to Abigail Echo-Hawk, missing data can be harmful as well.
“As data advocates, we have been saying for many years that American Indians and Alaska Natives are some of the most racially misclassified within hospital records,” said Echo-Hawk, who is a citizen of the Pawnee Nation of Oklahoma, and directs the Urban Indian Health Institute, one of 12 tribal epidemiology centers in the country.
She said a big issue right now is the fact that lots of people are being misclassified by hospital staff as white or Latinx, or something else. She’s experienced this firsthand, when her son was hospitalized a few years ago in Seattle. The condition itself was stressful enough, but so was Echo-Hawk’s discovery of the racial designation hospital staff gave him: white.
“I had to go to the administrator and I had to argue with her that my son was not white, he was in fact, American Indian or Alaska Native,” said Echo-Hawk. “And my experience isn't unique.”
Studies in places like Washington and Oregon have shown that many patients there were racially misclassified in hospital discharge records — often miscoded as white, or with missing race information. Echo-Hawk suspects such misclassification is even more likely to happen to COVID-19 patients, who may not be in a condition to clarify their identity, and when relatives may not be allowed to accompany them to the hospital.
According to the nonpartisan APM Research Lab, only about half of U.S. states report Indigenous COVID deaths. The others either haven’t seen Indigenous deaths due to the virus, or they lump them into a category called “Other.” And to Echo-Hawk, that misstep isn’t just a bureaucratic glitch — it’s an act of violence.
“The implication of that is, we effectively disappear within the data,” said Echo-Hawk. “I believe that eliminating us in the data through racial misclassification and non-collection of the data is an ongoing act of institutional racism that is resulting in the continuing genocide of American Indians and Alaska Natives. It effectively eliminates us. And as a direct result of that, then the resources that our community needs aren't being directed to us because the government is making data-driven decisions.”
And data-driven decisions are only as good as the data they’re based on.
“We know right now that that data is really, really bad,” Echo-Hawk said. “Unless something changes with that, what we’re going to see is the impacts of COVID-19 grow within our community and as a direct result of that, that impacts every community.”
But at this moment, Echo-Hawk is focused on a more basic hurdle: Getting access to Centers for Disease Control and Prevention health data to the millions of American Indian and Alaska Native people who live in cities, not on tribal lands. They represent about 70% of the Indigenous population in the U.S., and they don’t show up in Indian Health Service numbers. So, Echo-Hawk asked the CDC for COVID testing data and also data on conditions like asthma and diabetes, which can worsen COVID-19 outcomes, data that she said could help tribes and states get a handle on this virus. She said she did get a “sliver” of data, about COVID-19 testing, but there’s a lot more that she and her colleagues at other tribal epidemiology centers need.
“However, the CDC has continued to refuse full access to the data,” said Echo-Hawk, who first spoke about the issue with Politico.
In early July, a group of senators including some from New Mexico, Arizona and Montana wrote to the CDC and the Department of Health and Human Services demanding an explanation for why they appear to be withholding the data from tribal epidemiology centers.
In a statement, the CDC told the Mountain West News Bureau that it’s “working to increase risk factor, morbidity and mortality data access for Tribal Epidemiology Centers (TECs) to support tribes in their critical response efforts,” and has set up secure transfer and data use agreements so TECs can now receive COVID-19 case data.
“Tribal epidemiology centers are valuable partners in fighting the COVID-19 pandemic, and CDC takes its responsibility to share public health data with them seriously,” the statement said. “The data is expected to be transferred to all Tribal Epidemiology Centers by July 15. CDC is working to address access to other data and will continue to work with tribal and other involved stakeholders to do so.”
In the meantime, at the Pueblo of Zia, Ken Lucero said the local outbreak has waned, at least for the moment. There is one active case of COVID-19. The pueblo has enacted much stricter measures than states in the area, requiring proof of a recent, negative COVID-19 test before allowing someone to exit the pueblo, ensuring everyone has masks and hand sanitizer and designating specific days for residents to leave for shopping and non-urgent appointments.
They no longer post COVID-19 case updates online. Instead, Lucero said, they’re printed on paper and distributed door by door.
This story was produced by the Mountain West News Bureau, a collaboration between Wyoming Public Media, Boise State Public Radio in Idaho, KUNR in Nevada, the O'Connor Center for the Rocky Mountain West in Montana, KUNC in Colorado, KUNM in New Mexico, with support from affiliate stations across the region. Funding for the Mountain West News Bureau is provided in part by the Corporation for Public Broadcasting.