COVID-19 data on Native Americans is ‘a national disgrace.’ This scientist is fighting to be counted | Science

By Lizzie WadeSep. 24, 2020 , 12:20 PM

Science’s COVID-19 reporting is supported by the Pulitzer Center and the Heising-Simons Foundation.

Abigail Echo-Hawk can’t even count how many times she’s been called a troublemaker. It’s happened at conferences, workshops, and even after she testified before Congress—all places where she has advocated for the full and ethical inclusion of American Indians and Alaska Natives in public health data. “I didn’t used to know what to say,” she says. “Now, my answer is, ‘Is calling for justice making trouble?’”

As the director of the Urban Indian Health Institute (UIHI) and the chief research officer for the Seattle Indian Health Board, Echo-Hawk has been working for years with Indigenous people, mostly in cities, across the United States to collect data about their communities. She has also advised the Centers for Disease Control and Prevention (CDC), the National Institutes of Health, and many universities on best practices for analyzing data about American Indian and Alaska Native communities. Now, the COVID-19 pandemic has given Echo-Hawk’s work even more urgency.

Voices of the pandemic

The virus has taken a disproportionate toll on many Indigenous communities in the United States. But its full impact is unclear because of problems Echo-Hawk has long fought to correct, including racial misclassification and the exclusion of Indigenous communities from data sets and analyses used to make health policy decisions.

“Abigail has highlighted the inadequacy of, the restricted access to, and the delays in receiving data” about how COVID-19 is affecting Indigenous people in the United States, says Spero Manson, director of the Centers for American Indian and Alaska Native Health at the Colorado School of Public Health, who is Pembina Chippewa. “But it all builds on her prior work.”

Echo-Hawk, who is a citizen of the Pawnee Nation of Oklahoma, grew up in rural Alaska. She credits her interest in public health to the values she saw modeled by the leaders and members of her tribal communities. “They think about the health and well-being of an entire community in a very holistic way,” Echo-Hawk says.

She had a different experience after moving to Seattle for college and seeking prenatal care for her first pregnancy at a local hospital. When a medical assistant found out that Echo-Hawk was Indigenous, she began to aggressively question her about drinking and drug use. (Echo-Hawk was doing neither.) “That was very traumatic for me … I was treated in a way that a lot of people of color are, and that is with disdain, discrimination, and outright racism. And it inhibited my care,” she says.

She didn’t see a doctor again until her second trimester, when she went to the Seattle Indian Health Board. There she was welcomed, trusted, and treated with respect. That experience set Echo-Hawk on a path that eventually led to studying health policy at the University of Washington, Bothell, and working at the research program Partnerships for Native Health, now at Washington State University. She became director of UIHI in 2016.

“The system of colonialism in the United States has created, and continues to increase risk factors for, poor health outcomes in Native communities,” Echo-Hawk says. The U.S. government removed many Indigenous communities from their lands and confined them to reservations. Many didn’t have access to medical care and were cut off from their traditional diets and lifestyles, including spiritual practices that were tied to their homelands. Today, American Indians and Alaska Natives have higher rates of obesity, diabetes, asthma, and heart disease than white Americans, as well as higher rates of suicide. The system of oppression in the United States, Echo-Hawk says, “has built a perfect environment to kill us in a pandemic.”

But data showing the pandemic’s full impact on Indigenous communities across the country have not been collected, and accessing the information that does exist can be an uphill battle. Citing privacy concerns, for example, CDC initially denied tribal epidemiology centers, including UIHI, access to data about testing and confirmed COVID-19 cases, even though it was making those data available to states. What’s more, data collected by tribes, local and state health departments, and national agencies are often wildly inconsistent, says Desi Rodriguez-Lonebear, a social demographer at the University of California, Los Angeles, and a citizen of the Northern Cheyenne Nation. “I cannot tell you with any sort of certainty the number of positive cases of COVID-19 on my reservation right now,” she says. “It’s shocking.”

It also reflects an old pattern, Rodriguez-Lonebear says. “For so long, data has been used against our people.” For example, the U.S. census, which began in 1790, excluded all American Indians until 1860, and didn’t count those living on reservations until 1900. The census data were then used to justify the invasion and settlement of supposedly empty land, Rodriguez-Lonebear says.

Today, American Indians and Alaska Natives make up about 2% of the U.S. population but are often left out of national data analyses or marked as statistically insignificant. “I see being eliminated in the data as an ongoing part of the continuing genocide of American Indians and Alaska Natives. If you eliminate us in the data, we no longer exist,” Echo-Hawk says.

One way this erasure happens is through racial misclassification, Echo-Hawk says. Documents such as hospital intake forms might not give people the option to identify as American Indian or Alaska Native, lumping them into an “other” category. Similarly, CDC reports maternal mortality data by three racial categories: white, Black, and Hispanic. All other races are classified as “other.” When UIHI did its own analysis of maternal mortality, it found that urban American Indian mothers were 4.2 times more likely to die during or shortly after pregnancy than non-Hispanic white mothers.

Echo-Hawk is pushing for similar detail on COVID-19 cases. Before the pandemic, she traveled the country working with Indigenous communities and training scientists at universities and other institutions to change their data collection and analysis practices. Now, she can’t leave Seattle because of the pandemic, but she’s working up to 15 hours a day, 7 days a week. “This is probably the most troubling time ever in my career,” she says. Echo-Hawk and others pushed CDC to give tribal health authorities access to COVID-19 cases—with some success. Still, the data are “a sliver” of what she asked for, she says. “The federal government is failing to uphold their end of the bargain,” Rodriguez-Lonebear agrees. CDC did not respond to a request for comment.

Echo-Hawk is a co-author on a recent article in the Morbidity and Mortality Weekly Report that found American Indians and Alaska Natives were 3.5 times more likely to be diagnosed with COVID-19 than non-Hispanic white people. “That is a gross underreporting,” she says, because the study could only analyze data from the 23 states that reported patients’ race and ethnicity over 70% of the time. “The data is a national disgrace,” and the gaps affect all communities of color, Echo-Hawk says. “How can decisions be made in the United States to prevent, intervene, and treat COVID-19, when you can’t even truly tell what populations are most affected?”

“Data can be used as a weapon to further marginalize and harm communities of color,” especially Indigenous communities, agrees Kelly Gonzales, a citizen of the Cherokee Nation who studies the effects of systemic racism and colonialism on health at the Oregon Health & Science University–Portland State University School of Public Health. As a founding member of the independent Black, Indigenous, and People of Color (BIPOC) Decolonizing Research and Data Council, she draws on Echo-Hawk’s work to design and teach methods of data collection and analysis that advance racial justice. “On days where doing this work in the context of ongoing white supremacy and colonial violence feels really challenging and impossible, I remember her doing this work, and I remember I’m not alone.”