For years, Betty Sigala spoke to her family about her death: She didn’t want to be put on a machine and she didn’t want to die alone.
When she was admitted in June to the COVID-19 care ward at her local hospital, her family refused a ventilator. One of her grandsons persuaded the nurses to ignore the no visitors rule and let him in.
He set up an iPad so the family could speak with her, and then held her hand as she died.
Her granddaughter, Leticia Aguilar, 37, lit a fire for her that lasted four days and four nights, a tradition of their Pinoleville Pomo Nation. She cut her hair in mourning and sang and gave offerings to help her grandmother on the yearlong journey she would take to her final resting place, according to their traditions.
As Aguilar arranged for her grandmother’s burial, Liz Sigala, Aguilar’s aunt and Betty Sigala’s daughter, was admitted to emergency room care. She couldn’t breathe, gasping for air when she tried to speak.
Eleven days after her mother’s death, Liz Sigala died of COVID-19. The family held a double burial. Aguilar lit the fire once again.
Amid the ceremony and grieving, Aguilar made sure to fill out both death certificates, marking each of them “Native American.” She was proud she could do this last thing for them.
“I’m so glad that we were able to have them counted,” she recalled nearly eight months later. “It meant a lot for us as natives.”
Aguilar, who lives in Sacramento, California, feared that if she let hospital staff fill out the form, her family would be misclassified as Latino, white or marked as “other.”
Native American leaders across California said COVID-19 deaths have shrouded their communities, yet state figures show few American Indian people have died here compared with other states with significant Indigenous populations. Leaders and experts fear deaths in their communities have been undercounted because of a long history of Native Americans being racially misclassified.
This damaging practice can bar native people from getting the help and resources they actually need, they said.
California has the largest number of American Indians and Alaska Natives in the United States and the largest number of American Indians and Alaska Natives living in urban centers. They are often declared white, Latino or Black on official forms by uninformed hospital workers, according to community leaders and various studies. Sometimes they are simply listed as “other.”
Nearly 9,000 American Indians in California have been sickened by COVID-19 and 163 have died, according to the state public health authority.
Native American leaders said those figures do not reflect the death and sickness they’ve seen invade their communities, both on and off reservation land. It also doesn’t reflect national data that shows Native Americans, who are especially vulnerable to COVID-19 because of chronic diseases such as diabetes, heart disease and hypertension, are dying at horrifying high rates.
Data from the Centers for Disease Control and Prevention shows American Indians and Alaska Natives are the single group hardest-hit by the pandemic. They are diagnosed with COVID-19 at nearly twice the rate of white people, hospitalized almost four times as frequently and die at a rate of two and a half times that of whites.
As of December, 2,689 non-Hispanic American Indians had died of COVID-19, according to the CDC. However, many states do not separate American Indians into their own category, which public health experts suggest has lowered the overall tally of native deaths in the United States.
In California, native people comprise 0.3% of all deaths and diagnoses of COVID-19, and account for about 0.5% of the total population, at about 330,000.
The California Department of Public Health said it has worked to decrease instances of racial misclassification in recent years, but it conceded that officials may have misclassified American Indians in an attempt to prevent double-counting cases. Under state guidance, anyone who says they have American Indian heritage in combination with another race or ethnicity is counted as Hispanic/Latino or multiracial instead.
“This approach is the national standard for reporting disease rates and has several advantages,” the health department wrote in a statement to The Salinas Californian, part of the USA TODAY Network. “However, it also has limitations. Any classification system will not be able to capture the complexity and richness of racial identity.”
Acknowledging the problem doesn’t change the fact that the data is wrong, experts said.
“The problem is in the data itself,” said Virginia Hedrick, executive director of the Consortium for Urban Indian Health, a California nonprofit alliance of service providers dedicated to improving American Indian health care. “I don’t trust the state data. I haven’t ever.
“For me, this is a culminating event. This is historical trauma playing out in real time.”
Native American deaths go uncounted
For many Native Americans in California, it seems like every few weeks there’s another death. San Carlos Apache tribe member Britta Guerrero has donated to a number of funerals and attended a few via Zoom, streaming the proceedings in her living room. The familiar ceremonies and readings meant to guide her through her grief felt remote, unreal.
“I don’t think that we are able to even deal with the trauma of loss yet,” she said.
Guerrero, the executive director of the Sacramento Native American Health Center, has seen nine Native American people die in her immediate circle over the past year. Her clinic has donated or sent flowers to a dozen more funerals.
“We’ve been trying to go through the motions of grieving and burying people,” Guerrero said. “We know a lot of people are missing, and we won’t understand the gravity of that until we’re back together and we see who is gone.”
Guerrero’s own experience in the community and her work in American Indian health care have shown her the official tally of American Indian deaths is too low.
“There’s misclassification there,” she said, pointing to the health department’s decision to count people with multiple racial heritages as multiracial or Hispanic/Latino instead of American Indian.
The sense of loss that the living suffer is heightened by fear that their loved ones might be scrubbed from American Indian history by an inaccurate document.
Aguilar made sure she was the one to fill out her grandmother and aunt’s death certificates. If she didn’t, she worried her grandmother, who was of American Indian and Filipino descent, and her aunt, who had American Indian, Filipino and Mexican heritage, wouldn’t be classified as Native American by hospital staff.
Aguilar became aware of how common racial misclassification was in the run-up to the census last spring, which motivated her to ensure her relatives’ deaths were counted. The idea that their identity and culture could have been erased by the state counting system made her sick with anger.
“That only contributes to the invisibility of our people, which makes it harder for us to even access resources because we can’t prove we exist,” she said. “There is so much more meaning behind making sure we are properly counted as native people.”
‘We’re born Indian and we die white’
Evidence of racial misclassification of American Indians stretches back decades.
A 1997 American Journal of Public Health study that compared birth certificates of American Indians in California from 1979 to 1993 with death certificates during the same time span found that at the time of death, about 75% of native children were racially misclassified.
Misclassification was more likely if the child resided in an urban county outside of Indian Health Service delivery areas.
And a 2016 report by the CDC found that nationally, American Indians were misclassified up to 40% of the time on their death certificates.
These mistakes have far-reaching consequences. In one instance, racial misclassification resulted in undercounting the transmission of STDs through Arizona’s Native American population by up to 60%, according to a 2010 Public Health Report article. An undercount can result in less funding for treatment, as well as additional unintended health consequences, such as infertility, which is associated with untreated STDs.
“We’re born Indian and we die white,” said Hedrick, of the Consortium for Urban Indian Health. “I would argue that there are likely more Native Americans in hospital beds that are racially misclassified” than we know.
Tribal members said each American Indian death needs to be counted as an American Indian death. To do otherwise is to further erase a people who have faced kidnapping and forced assimilation of their children, indentured servitude and an 1851 state-funded extermination order that killed as many as 16,000, only to find themselves uncounted, made invisible.
State and county roadblocks frustrate tribal leaders
Tribal health care experts and leaders said they have struggled to challenge the state’s data on COVID-19 deaths because in some cases they were left in the dark by state and county governments. That left tribal leaders unable to contain the spread of the virus on their own reservations and fully understand the threat.
Concerned about the high rate of COVID-19 among the state’s native population, California State Assembly member James Ramos of the Serrano/Cahuilla tribes, chair of the Committee of Native Affairs, held a hearing on the disparities in November. There, he learned some counties refused to communicate with tribal leaders even to tell them if there was a positive case on the reservation because of health privacy protections. Other governments, such as state or county governments, are able to receive such data, which is more thorough than the COVID-19 data released on public sites.
In one case, citing HIPAA laws, a county refused to divulge case and death data to the chairman of the Yurok Tribe. The chairman oversees every aspect of the tribe, including healthcare. The Yurok, whose reservation straddles Del Norte and Humboldt counties in northern California, were forced to hire a health officer before they could get the needed information.
Neither Humboldt nor Del Norte counties immediately responded to media requests.
Ramos said state and county government officials endangered native people by denying them information. He said California has a history of refusing to understand or work with tribal governments.
Ramos, the first American Indian elected to state government in California, hopes to see more native people elected at all levels of government to help improve data collection and communication between Native leaders and governments.
He worried that if these issues aren’t tackled now, they won’t be solved before the next pandemic and will end in the death of more native people.
Ramos, too, has seen a loved one succumb to the virus. His uncle, an elder in his tribe and a source of support and inspiration for Ramos, died of COVID-19 in February.
In Central California, the Tule River Tribe in Tulare County also found itself cut off from potentially lifesaving data. Of its roughly 1,600 members living on the reservation, 179 have been diagnosed with COVID-19, or roughly 11%. Another 177 of the 357 who live off the reservation have been stricken ill.
Adam Christman, chairperson of the Tule River Indian Health Center and Tule River Tribe Public Health Authority, said California did not grant the reservation health center access to the California Reportable Disease Information Exchange, the state system all testing entities report results to.
“Having access to that system would make it easier for us to identify who should be isolating based on those test results, and monitoring them for quarantine and contact tracing,” Christman said.
After months of agitating for access, the tribe simply gave up asking.
‘Nobody’s going to help us’
Without data or consistent government support, tribal leaders and members have leaned on each other to keep each other safe by social distancing, wearing masks and getting vaccinated.
After an outbreak of six cases, the Yurok tribal council closed its reservation multiple times, suspended housing and utility payments and provided supplies such as food, PPE, firewood and emergency generators to residents. They also launched a contact-tracing team, a food sovereignty program and are working with United Health Services on vaccinating their eligible population.
“Basically the way we looked at it, nobody’s coming, nobody’s going to help us,” said Yurok Tribal Chairman Joseph James. “We’re a sovereign government. There’s things we need to work on to improve our daily lives and provide for our own people.”
Advocates and healthcare professionals at the Sacramento Native American Health Center have inoculated 72% of all American Indians 65 and older in the region eligible for the vaccine right now, far more than the state or national vaccination rate.
Ricardo Torres, a member of the Winnemem Wintu Tribe and secretary of the health center's board, helps manage a COVID-19 outreach campaign that has seen thousands of native community members receive masks and vaccines.
Over the last 12 months, Torres saw more than a dozen friends and acquaintances die from COVID-19. He worries more will follow, since only people 75 years and older initially had access to the vaccine in California. Native people born today have a life expectancy of just 73 years, more than five years less than the U.S. average.
“Our population is young,” said Torres. “We don’t have a lot of 75-and-over people. They’re already dead...The people that we need to get vaccinated are the younger people.”
A history of mistreatment at the hands of medical providers has led to distrust in the native community, and the swiftness of the vaccine rollout did not engender comfort.
“People can be vaccine-hesitant,” said Guerrero, of the Sacramento Native American Health Center. “There’s a lack of trust in the federal government...so now we’re really pushing a boulder up a hill.”
Until more Native Americans are vaccinated, tribal leaders said community members will continue to voluntarily social distance, wear masks and pray for good health.
“As the Indian people as a whole, as first peoples of this nation, we’ve dealt with pandemic, sickness, illness, historically since the beginning of time,” said the Yurok Tribe’s James. “Our people went through this before. We survived, and we’ll continue to survive.”
This article originally appeared on USA TODAY: COVID-19 cases: California Native American death data could be wrong