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.
鈥淲e kind of felt like someone was airing our dirty laundry, or just coming in and invading our privacy at a very private moment,鈥� 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鈥檚 Facebook page. But then they started noticing those numbers appear elsewhere, like in , and then, most alarmingly, statewide .
鈥淲e felt that was unjustifiable,鈥� Lucero said.
He and his colleagues knew how many people were sick, but they didn鈥檛 think it was the right time to share that information with people outside of the pueblo.
鈥淲e were trying to keep that information quiet. There was going to be an appropriate time, an appropriate place...under our terms,鈥� he said. 鈥淲e 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.鈥�
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.
鈥淭here was such chaos and so much uncertainty about what was going on and how it was kind of seeming to be unraveling for us,鈥� Lucero said.
At that point, he said, 鈥渢he last thing we needed鈥� 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鈥檇 been branded as a COVID hotspot, and to think: What鈥檚 the point of being a sovereign nation if you aren鈥檛 treated like one at a critical moment?
鈥淲e are sovereign nations,鈥� said Lucero, who pointed out that the Pueblo of Zia has been in the area since the 1300s 鈥� at least. 鈥淭he 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.鈥�
There鈥檚 a name for what Lucero described: . It鈥檚 something that tribes and researchers like Stephanie Carroll have been fighting for a lot lately.
鈥淲e really need to have Indigenous data by 鈥� and for 鈥� Indigenous peoples,鈥� said , who is an associate director for the Native Nations Institute at the University of Arizona, where she鈥檚 also a professor of public health. She identifies as Ahtna, from the in Alaska.
She co-founded the , which tries to ensure that tribes have control over data about their people, and that it鈥檚 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.
鈥淪ome 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,鈥� said Carroll. 鈥淭here wasn't systemic change.鈥�
And the incremental change that had occured crumbled.
鈥淲hen 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.鈥�
Carroll says there are some notable exceptions. The Navajo Nation collects and 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鈥檚 important, because data sovereignty isn鈥檛 just about being polite to other nations. Data is powerful, and depending on how it鈥檚 used, it can hold the answer to solving problems or, Carroll said, it can be 鈥渨eaponized.鈥�
Last month, 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 , Carroll suspects that New Mexico鈥檚 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. 鈥淩eporting of tribal-specific data is making tribes more visible in ways that can result in harm and ignores inherent Indigenous sovereign rights,鈥� she wrote.
(A spokesperson for the hospital said the ProPublica article was 鈥渕isleading,鈥� that their COVID-19 screening practices 鈥渁re based on state and national guidelines,鈥� and that 鈥渁ll 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鈥檚 Office and the [New Mexico health department] to be at increased risk, such as nursing home patients, dialysis patients and hard-hit geographical areas.鈥�)
In late June, Carroll was among an international group of researchers that released on how to share Indigenous COVID-19 data in a way that doesn鈥檛 sow misinformation and misuse.
But misuse of data is only one issue. According to Abigail Echo-Hawk, missing data can be harmful as well.
鈥淎s 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,鈥� said Echo-Hawk, who is a citizen of the , 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鈥檚 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鈥檚 discovery of the racial designation hospital staff gave him: white.
鈥淚 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,鈥� said Echo-Hawk. 鈥淎nd my experience isn't unique.鈥�
Studies in places like Washington and Oregon that many patients there were racially misclassified in hospital discharge records 鈥� 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 Lab, only about half of U.S. states report Indigenous COVID deaths. The others either haven鈥檛 seen Indigenous deaths due to the virus, or they lump them into a category called 鈥淥ther.鈥� And to Echo-Hawk, that misstep isn鈥檛 just a bureaucratic glitch 鈥� it鈥檚 an act of violence.
鈥淭he implication of that is, we effectively disappear within the data,鈥� said Echo-Hawk. 鈥淚 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.鈥�
And data-driven decisions are only as good as the data they鈥檙e based on.
鈥淲e know right now that that data is really, really bad,鈥� Echo-Hawk said. 鈥淯nless something changes with that, what we鈥檙e going to see is the impacts of COVID-19 grow within our community and as a direct result of that, that impacts every community.鈥�
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鈥檛 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 鈥渟liver鈥� of data, about COVID-19 testing, but there鈥檚 a lot more that she and her colleagues at other tribal epidemiology centers need.
鈥淗owever, the CDC has continued to refuse full access to the data,鈥� said Echo-Hawk, who first spoke about the issue with .
In early July, a group of senators including some from New Mexico, Arizona and Montana 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鈥檚 鈥渨orking to increase risk factor, morbidity and mortality data access for Tribal Epidemiology Centers (TECs) to support tribes in their critical response efforts,鈥� and has set up secure transfer and data use agreements so TECs can now receive COVID-19 case data.
鈥淭ribal epidemiology centers are valuable partners in fighting the COVID-19 pandemic, and CDC takes its responsibility to share public health data with them seriously,鈥� the statement said. 鈥淭he 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.鈥�
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鈥檙e 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, 九色网 in New Mexico, with support from affiliate stations across the region. Funding for the Mountain West News Bureau is provided in part by the .
Copyright 2020