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Abigail analyzed data, and found that indiginous people are 3.5 times more likely to be diagnosed with covid-19, and that on official data they are counted as “other” “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.” they don’t giver reservations access to the covid-19 stats, and she cant reliably tell you the numbers, whether its because of access to testing, or just not being able to tell.

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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.

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 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."
*Correction, 28 September, 3:50 p.m.: An earlier version of this story incorrectly stated that the census excluded all American Indians until 1860. It excluded the vast majority, but some American Indians living in white settlements were counted.

doi:10.1126/science.abe9552

Lizzie is Science's Latin America correspondent, based in Mexico City.

More from News

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COVID-19 data on Native Americans is 'a national disgrace.' This scientist is fighting to be counted

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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.

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Talked more about low income and how covid affects that, diabetes is 60% more likely to happen to african americans, because they are more likely to be low income, and unable to afford nutrient full foods. Minorities are most likely to suffer from obesity, magnifying the effects of covid.

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In April, Dr. Anthony Fauci, the United States' leading expert on infectious diseases, spoke in a press conference about the impact Covid-19 is having on communities of color, particularly African Americans.

"When all this is over - and as we've said, it will end - we will get over coronavirus, but there will still be health disparities, which we really do need to address in the African American community," he said in an April 7 press briefing.

Those "disparities" Fauci mentioned are linked to early numbers that show African Americans are disproportionately dying from Covid-19. In Michigan, black people make up 14% of the state's population, but account for 41% of coronavirus deaths, according to data released by Michigan's government. In Illinois, black people make up 14% of the population, but account for 32.5% of coronavirus deaths, according to the state's Department of Public Health.

In Louisiana, where black people make up about 33% of the population, Gov. John Bel Edwards said in early April they account for more than 70% of the state's coronavirus deaths, with the majority of these fatalities taking place in New Orleans. And in New York City, black and Latino people are twice as likely to die from the virus than their white peers, according to data bythe local government. All of these figures are based on the most recent data released to the public,with more states and local governments being pressured to share a racial breakdown of their numbers.

"There are definitely multiple reasons why we're seeing black communities be disproportionately impacted by Covid-19," New York-based physician Dr. Uche Blackstock tells CNBC Make It. She explains that when you look at the "social determinants of health," such as where a person lives, worksand the quality of health care they have access to, you will see that structural racism has left African Americans "vulnerable and marginalized."

"Even before this [pandemic], we had significant health inequities," she adds, while emphasizing the increased levels of diabetes, high blood pressure, hypertension, asthma and obesity in the black community. "And what we're finding out is that these are the underlying medical conditions that result in very serious complications from Covid-19."

CNBC Make It spoke with Blackstock, along with five otherblackdoctors, nurses and experts, to get their thoughts on how housing location, health-care access and distrust in the medical system have all contributed to theracialhealth disparities we see today.

Due to a history of housing discrimination and redlining, which is the systemic practice of refusing government resources to predominantly black neighborhoods because they've been deemed a financial risk, generations of African Americans have been forced to live in areas that lack access to healthy food options. Many of these neighborhoods, which researchers have categorized as " food deserts" are filled with fast food restaurants and small corner stores that have more junk food options thanfresh fruits and vegetables.

"I think it's really important to understand that dietary choices aren't moral choices," says Dr. Chinara Tate, director of nutrition at Mount Sinai Eating and Weight Disorders Center of Excellence in New York. She explains that for many black and brown people living in poor communities, the food choices they makearemade through a survival mindset, and they don't have the luxury of thinking about the long-term impact of their diet. "If you have the option of purchasing an onion for a dollar or purchasing a meal for a dollar, it makes the most sense to purchase the meal, even if it's not the healthiest option because an onion is not going to feed your family."

As a result, residents in these communities tend to rely on high calorie foods that are cheaper and more accessible, says Dr. Jessie Marshall, an assistant professorof internal medicineatthe University of Michigan Medical School. "And we know that results in chronic diseases such as diabetes, high blood pressure and obesity," she says. "So again, Covid-19 did not create these racial disparities that we are seeing. It simply magnified these disparities in unbelievable ways."

In 2017, 55.5% of African Americans had private health insurance, compared to 75.4% of white Americans, according to the U.S. Department of Health and Human Services. That same year, 43.9% of African Americans relied on Medicaid or public health insurance and 9.9% were uninsured altogether.

This disparity in health care is linked to the employment of African Americans who, along with Latinos and Hispanics, are overly representedin low-income roles that often lack insurance and benefits for hourly workers. Today, 63% of Latino or Hispanic workers and 54% of black workers earn low wages, compared to 40% of Asian American workers and 37% of white workers, according to a 2019 report by the Brookings Institution, which found that even in these low-wage roles, black and Hispanic workers earn less than white workers with the same education level and experience.

Low wages, according to the study, are categorized as jobs that pay a median salary of $10.22 per hour or $17,950 per year. Some of these roles include grocery store clerks, home health aides, fast food workers and other service sector jobs that have been deemed "essential" during the coronavirus pandemic. Not only do these roles require workers to work outside the home, but many of them also offer no paid sick or family leave.

"Anyone who knows the history of America is not surprised," says Belinda Archibong, assistant professor of economics at Columbia University's Barnard College. Despite the Civil Rights Act of 1964 prohibiting employment discrimination, she says black Americans still face racial and gender barriers that keep them locked out of top jobs. In situations where black workers have been forced to hold positions with little to no benefits, she says she's watched first-hand how they have ignored long-standing health issues because of the cost.

"I've seen my own family go through the fact that when you don't have health insurance you basically avoid the doctor until it's like a life-or-death scenario," says Archibong. For many essential black and brown workers, she says it may be common for them to not even know they have underlying health conditions because they don't have insurance to visit a doctor regularly. Therefore, if they get Covid-19, and it's paired with untreated health conditions, their odds of beating the virus could be low.

For black Americans who do have access to health insurance, going to the doctor is not always a smooth process as there has been a long-standing distrust between black patients and medical professionals. This distrust, according to many experts, is linked to the Tuskegee Syphilis Experiment in 1932 where the U.S. Public Health Service used black men to conduct a secret study on the progression of the deadly syphilis disease in order to find a treatment.

The study initially involved 600 black men, 399 of whom had syphilis and 201 who did not, according to the Centers for Disease Control and Prevention. The men were not told the purpose of the study and were instead told that they were being treated for "bad blood."The study, which was supposed to run six months, ended up lasting for 40 years, with the men unknowingly being used as test subjects. In order to track the progression of the disease, researchers and doctors did not provide any treatment to the men for their illnesses, even though a cure for syphilis was found in 1947. As a result, many of the participants died, went blind or experienced other severe health problems. In some cases, wives of the participants also became infected and their kids were born with congenital syphilis.

Beyond the Tuskegee experiment, black Americans have also lacked trust in the healthcare system after years of feeling unheard by medical professionals, says Dr. Utibe Essien, a health disparities researcher and assistant professor of medicine at the University of Pittsburgh School of Medicine. He points to modern-day research that shows that even when black patients voice concerns about their health, they are sometimes ignored or treated differently than their white counterparts.

Another way this plays out, he says, is seen in the black maternal health crisis. Black women have the highest maternal mortality rate of any racial group in the U.S., dying 2 1/2 times more often than white women during childbirth. This disparity, he says, became an even bigger headline when high-profile celebrities like Serena Williams and Beyonce opened up about their highly complicated child births. "These are experiences that whether you're a poor African American or rich African American, known or not known, are unfortunately being had by many of us."

Recognizing a history of implicit bias in health care, the CDC recently advised medical professionals to "identify and address implicit bias that could hinder patient-provider interactions and communications" during the pandemic.

Dr. Earl Campbell, who is treating Covid-19 patients at Yale New Haven hospital, says one way to improve the level of trust between black patients and medical professionals is to diversify the medical workforce. Currently, just 5% of physicians in the U.S. are black. Campbell, who makes up part of that small workforce, is the first African American advanced endoscopy fellow at Yale.

Blackstock agrees with Campbell about workforce diversity and started the organization Advancing Health Equity in 2019 to address the many disparities we see today around patient treatment, care, implicit bias and workforce numbers.

Her hope, she says, is that once this pandemic is over, more attention will be paid at the policy level where "government officials really think about how we can prevent this from happening in the future." This includes, she says, "addressing social determinants of health" that have long impacted the black community.
Don't miss: Shut out of PPP loans, struggling with no child care: How Covid-19 is impacting women-owned small businesses

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Racial health disparities already existed in America- the coronavirus just exacerbated them

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In April, Dr. Anthony Fauci, the United States' leading expert on infectious diseases, spoke in a press conference about the impact Covid-19 is having on communities of color, particularly African Americans.

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BIPOC has had disproportionately high death, case, and hospitalization rates in comparison to their percentage of the population, while whites has been disproportionately low, and a higher risk of exposure and lower access to testing.

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Data gathered early in the pandemic showed that communities of color are disproportionately affected by COVID-19 across the United States. But incomplete data left a muddy picture of these disparities.

Today, as the U.S. has surpassed 200,000 COVID-19 deaths, and reached nearly 7 million confirmed cases, racial data is more complete, and the trend is crystal clear: People of color get sick and die of COVID-19 at rates higher than whites and higher than their share of the population.

The trend has persisted - and in some cases worsened - since NPR analyzed this data in May. As the country struggles to bring the pandemic under control, Blacks, Latinos and Native Americans bear an unequal burden

An NPR analysis of the latest data available from the COVID Tracking Project shows how this plays out state by state. ( Jump to charts below to look up your state). Here are the key findings of the national picture:

African Americans continue to get infected and die from COVID-19 at rates more than 1.5 times their share of the population.

In Missouri, Kansas, Wisconsin and Michigan, African Americans are dying at a rate more than 2.5 times their share of the population.

Increasingly, Hispanics and Latinos die from COVID-19 at rates higher than their share of state populations. In May, this was true in only seven states, but now it is true in 19 states and the District of Columbia.

Hispanics and Latinos have a disproportionate rate of infection in 45 states and the District of Columbia.

The Native American and Alaskan Native share of death and sickness is disproportionate to their population in 21 states out of the 36 states with sufficient data. That rate is five or more times greater than population share in Utah, Montana, New Mexico and Wyoming.

White, non-Hispanic deaths from COVID-19 are lower than their share of the population in 36 states and the District of Columbia.

As the months have passed, the availability of statewide race and ethnicity data has increased dramatically. When NPR first reported on this issue in May, only 51% of cases and 88% of deaths had an identified race. Since then, 65% of new cases have an identified race, and states have been working to identify the race of deaths previously recorded without a race.

Researchers who have been tracking racial disparities in COVID-19 outcomes since early in the pandemic say these trends are now impossible to ignore.

Samantha Artiga, director of the Disparities Policy Project at Kaiser Family Foundation, recently published a distillation of a wide range of research on these racial disparities.

"When you look at that continually growing body of research, the findings very consistently show that people of color are really bearing the heaviest burden of COVID-19 at every stage, from risk of exposure, to access to testing, to severity of the illness and eventually death," she says.

And these trends are confirmed wherever COVID and race data are collected.

Increasingly, the CDC has provided a variety of race and ethnicity data, something it was slow to do initially. On August 18, the CDC released data showing that Blacks, Latinos, and American Indians are experiencing hospitalizations at rates 4.5 to 5.5 times higher than non-Hispanic whites.

The COVID Racial Data Tracker did an analysis comparing white death rates to other groups. Hispanics and Native Americans are both dying about 1.5 times the rate of white people. And African Americans are dying at 2.4 times the white rate.

NPR's analysis shows that nationally, this death rate is still the highest of any group, despite modest improvements since May. Blacks continue to be over-represented in deaths in 33 states and territories. In May, death rates in 9 states were more than double their population share. As of late September, they are double in only four states.

COVID-19 related deaths among Hispanics and Latinos are cause for increasing concern. In May, the national death rate for Latinos was below their proportion of the population, but it has steadily crept up. There are now 20 states where the number of Hispanic deaths is greater than their share of the population, up from just seven in May.

"I think this really reflects the shifting of hotspots into Southern and Western regions of the country where Hispanic people make up a greater share of the population," says Artiga.

Meanwhile, these communities test positive for COVID-19 at disproportionate rates in almost every state.

For American Indians and Alaska Natives, the picture has become clearer as data becomes available and sample sizes grow. At least 19 states have disproportionately high cases for AIAN individuals and 15 states have disproportionately high death rates. In Arizona, over 500 Native Americans have died from COVID-19, 12% of the state's overall tally. Only 4.5% of the population of Arizona is Native American.

Behind all these disparities lies an even deeper, entrenched problem of health inequity in our society, explains Greg Millet, director of public policy at amfAR.

"It's not by dint of circumstance or luck that predominantly white counties - by and large - have not had as many diagnoses as compared to more diverse counties," he says. "There's a systemic issue that's underlying all of this."

As the pandemic stretches on - and these trends continue - the people meticulously collecting this information are fighting to keep perspective.

"At the end of the day, these numbers are huge, but each number is a human life lost or affected by this," says Rachel Lee, project manager at the COVID Racial Data Tracker. "These are actually people, family members and friends being killed."

"I pray [whenever] our data shifts - 'help me to see the people behind these numbers' - because otherwise, they're just going to be numbers."
Methodology
Coronavirus case and death data by race and ethnicity are based on publicly available data collected by the The COVID Racial Data Tracker. Race and ethnicity population data comes from the 2018 American Community Survey from the Census bureau. Certain territories are excluded from our analysis due to lack of recent demographic data. Due to the inconsistent race and ethnicity reporting from states, it is possible for the white category to include Hispanic/Latino individuals that are counted both as a race and a Hispanic/Latino ethnicity. These inconsistencies could cause a slight overestimate in white case and death rates and a slight underestimate in Hispanic/Latino case and death rates. Where possible, we use the ACS count for non-Hispanic whites, rather than all whites.

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As Pandemic Deaths Add Up, Racial Disparities Persist - And In Some Cases Worsen

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Data gathered early in the pandemic showed that communities of color are disproportionately affected by COVID-19 across the United States. But incomplete data left a muddy picture of these disparities. Today, as the U.S.

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Economically BIPOC usually live in more low income areas, which were also disproportionately affected, access to medical care.

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We need to keep testing, and offer more PPE for essential workers. We need to offer testing sites in black, and mostly minority or underfunded neighborhoods. Because one of the reasons that minorities are suffering more with covid is because many don't have access to healthcare, which discourages people from going to the hospital in fear of losing money needed for shelter, and other necessities. There are two ways to combat those, universal healthcare, and a higher minimum wage.