North Carolina is home to the largest population of Native Americans in the East. But, public health data on Native Americans has been misrecorded nationwide, leading to an underestimate of the health disparities between American Indian and Alaska Native people and the general United States public, according to a new study from the journal JAMA.
The study explains that statistics become distorted when funeral directors misidentify the race of a Native American person on their death certificate. This happens more often when the cause of death is heart disease or cancer, and less often when the cause of death is violence, drugs, and alcohol.
The lack of representative health data impacts public health efforts, including in North Carolina, and has the potential to further entrench health disparities.
"Public health action is driven by data," said Ryan Dial, the American Indian Health Program Manager at UNC Lineberger Cancer Center and UNC American Indian Center. Dial is a citizen of the Lumbee Tribe in North Carolina.
Dial worries that the statistics don't paint the whole picture.
"People look at incidence rates and mortality rates of native communities and assume, 'Oh, there's not a disparity there. There's not a problem. We can move on.' …There are struggles with the community that aren't being shown by just numbers."
Undercounting Native Americans
Official statistics have long shown differences in health outcomes between Native Americans and the rest of the U.S. population. But these data often come from records such as death certificates. Researchers found that 4 in 10 self-identified Native Americans and 6 in 10 mixed Native Americans had their identity incorrectly recorded on their death certificate.
The paperwork is usually filled out by funeral directors who might not know the race and ethnicity of the deceased. So, when funeral directors make assumptions, it becomes solidified in the written record.
To see the true health profile of Native American populations, researchers drew on a survey that accounted for self-identified race and ethnicity. They found that American Indian and Alaska Natives have a life expectancy of 6.5 years less than the national average, meaning that they are expected to live as long as someone from El Salvador or Bangladesh. That gap is almost three times greater than official statistics suggest.
Also, official mortality statistics do not accurately represent the number of Native Americans who die from conditions like heart disease and cancer.
'Any kind of agency where data is recorded' – the invisibilization of Native Americans
Jesalyn Keziah, a citizen of the Lumbee tribe, the largest tribe in North Carolina, says that nearly any time she has walked into any office, anywhere, her race is misidentified.
"This happened the last time that I went to the DMV to update my registration. Even though I was listed as American Indian before, when the person who was attending went into my registration, it came out and was listed as white," she said.
"It's happened to me multiple times (whether it be) medical, driver's license, any kind of agency where data is recorded," she said. "So I think self reporting is really important."
Keziah is the executive director of Triangle Native American Society, an organization that protects and promotes Native American identity in the region.
TNAS's founding members helped pass legislation to include "Native American" as a checkbox on official forms, such as school enrolment, according to Keziah.
To Ryan Dial, the issue of statistical misclassification and erasure are intricately related to the issue of visibility. And, these enmeshed ideas first came about in colonial America.
“There's a term called paper genocide. Really, it can even be traced back to the first recorded records that Europeans took of Native people,” said Dial.
Paper genocide is the deliberate destruction or falsification of statistical records pertaining to a specific group. White settlers in America likely undercounted Indigenous people in their first censuses of the New World in order to create the impression that they had become extinct when that wasn’t the case. Dial said that in a time when colonists were trying to define “us” versus “them,” when Native Americans weren’t counted on paper, that was akin to being discounted from society.
To Keziah, that issue has persisted to this day. "We're still fighting invisibility as a population, and there's a lot of misinformation about who native people are, what we look like."
Ryan Dial agreed. He said that people tend to hold preconceived notions about Indigenous people that are incorrect, and tend not to understand Native American issues.
"They still view native people of somebody from the past," said Dial. "They don't realize that, like every time you go to Walmart, you potentially are passing a native person you know. A native person could be your dentist, it could be your auto mechanic. It can be somebody here at UNC, a professor."
Working through the blind spots
Cancer, specifically, is one cause of death that is underreported in Native American and Alaska Native populations, according to the JAMA study.
Dial is involved with the Southeastern American Indian Cancer health Equity Partnership, or SAICEP. It represents a collaboration between Duke University, UNC Lineberger, and Atrium Health Wake Forest Baptist – the three comprehensive cancer centers in North Carolina – and the Native American communities in their catchment areas.
Through a grant by The V. Foundation, SAICEP is working to understand and address cancer disparities in Native populations, focusing on youth cancer risk. They are focusing on HPV vaccination rates, commercial tobacco usage, and sun exposure.
According to Dial, Native people use tobacco far more than the general population, and HPV vaccinations are the best way to prevent cervical cancer. For those two risk factors, there was very clear data to support public health action. Check, and check. But, there was insufficient data on the last front: Skin cancer.
"We miss people, you know? And it's hard to say even how much," Dial said.
Around the same time, Dial was approached by two students at the UNC Dermatology Society, Urvi Patel and Khizra Ahmad. They had just received a $10,000 grant from Projects for Peace for a skin cancer prevention project in Native American communities. They heard about Dial's work, and wanted to know whether he had any resources on skin cancer in Native American populations. He had to tell them that data isn't represented in the reports of North Carolina health disparities.
"I didn't want to wait for that data to come before we did anything," he said.
Together, Patel, Ahmad, and Dial began handing out sunglasses, sunscreen, and other preventative "swag" at community events. They spoke with tribe members to raise awareness about skin cancer risks and screening opportunities.
Where the numbers falter, Dial is a proponent of using other forms of data. He attends traditional talking circles—traditional forums for community and knowledge sharing—in order to understand the impact of cancer on his communities.
"The perspectives our community has, the stories that they have to tell about their burdens with cancer and other health issues … that is data," he said.
In those encounters, Dial said that he also encourages Native Americans to check with their medical doctors to see whether their medical records reflect their Native status.
Counting on the future
There are two ideas that Dial says he catches himself repeating a lot. It helps him think about his and others' responsibility to address Native American health disparities.
"Native people deserve to not be burdened by these diseases," said Dial. "If we're able to help one or a handful of Native people in the state get screened or detected earlier, to me those are metrics that make our job worth it."
Also, importantly, to make that happen, academics, public health practitioners, organizers, and all others who care about reducing Native American health disparities need to foster sustainable, equitable relationships with tribes.
Dial has been involved with tribal health for a long time, but he says "it's not conditional on me just being an enrolled citizen of the Lumbee… Those kinds of relationships are very possible with my non native colleagues and with our institutions. UNC, Duke, all these organization institutions, can have these deeply rooted relationships with tribes."
