CLN - Feature

How laboratory medicine can support healthy American Indian communities

Ongoing studies and initiatives aim to reduce barriers to care.

Yaakov Zinberg

American Indian and Alaska Native (AI/AN) communities experience some of the worst racial and ethnic healthcare disparities in the United States. From 2008 to 2019, self-identified AI/AN individuals had an average life expectancy of 72.7 years, 6.5 years shorter than the national average. Though each population faces unique health needs and challenges, AI/AN individuals are, on average, more likely to die from diabetes, heart disease, chronic liver disease, cancer, and suicide than white Americans.

Fortunately, there have been some highly successful interventions. For example, the Special Diabetes Program for Indians, which Congress established in 1997 to fund diabetes treatment and prevention services in American Indian communities, has been credited with reducing end-stage diabetic renal disease by more than half in this population.

Although sometimes overlooked, laboratory medicine is emerging as an avenue for improving health outcomes in these communities. Partnerships between laboratorians, researchers, and tribes are shedding light on specific gaps in healthcare and the ways that diagnostic testing could help fill them.

Colonoscopies and Cologuard in rural Alaska

Alaska Natives — the Indigenous people of Alaska who make up over 15% of the state’s population — experience the highest rates of colorectal cancer (CRC) of any population globally. The reason why remains unclear. Factors associated with CRC risk in other populations, such as diet, tobacco use, and a sedentary lifestyle, might be at play. Researchers are also studying whether unique genetic determinants might be involved.

There’s no doubt, however, that timely screening serves as the single most effective way to mitigate these cancers. Screening rates have improved dramatically in Alaska Native communities, up from less than 40% in 1999 to 69% in 2024.

“Alaska Native people actually have higher screening rates than non-Alaska Native people in our state,” said Diana Redwood, PhD, MPH, a senior epidemiologist at the Alaska Native Tribal Health Consortium (ANTHC). As an expert on CRC screening methods and prevention for Alaska Native people, Redwood noted that these high screening rates are particularly impressive given the logistical challenges Alaskans living in remote areas face when it comes to accessing care.

“Imagine you have to fly from New York to Miami to get your colonoscopy,” she said. That’s a rough approximation of the distance some Alaska Native people need to travel to receive a screening — and driving usually isn’t an option since roads don’t connect to most rural areas. The timing often isn’t in people’s control, either: Only one regional hospital within the Alaska Tribal Health System offers colonoscopies year-round, while some others set up week-long screening clinics throughout the year.

Redwood credits several factors for the extraordinary increase in CRC screenings. “It’s a multi-
component approach,” she said. “We do a lot of provider training, making sure that family history is checked and that those with a history get screened earlier and more frequently, in addition to using local Alaska Native patient navigators to help guide people through the screening process.”

Additionally, ANTHC places strong emphasis on engaging with tribal leaders to understand how to best communicate the importance of CRC screening. “We’ve been told by Alaska Native elders that having more humor in the message is really important,” Redwood said. That advice has led to the introduction of an 8-foot-tall, walkthrough inflatable replica of a human colon at community screening awareness events.

The introduction of Cologuard, a multitarget, stool-based DNA test, is currently being experimented with for CRC screening expansion, since the test is noninvasive and patients collect samples at home.

However, there are still logistical hurdles. All Cologuard samples are processed at the lab for Exact Sciences (the test manufacturer) in Madison, Wisconsin, and must arrive within 96 hours of collection. As part of a recent study, Redwood and colleagues set up a preprocessing facility in Anchorage, Alaska, for samples that otherwise would not have made the 96-hour deadline. Although that facility was only in operation for the duration of the study, it’s a proof of concept for the establishment of future sites, Redwood said.

Earlier surveys conducted by Redwood and her colleagues show that Alaska Native people view stool-based testing quite favorably, at least when compared with the inconvenience and discomfort associated with colonoscopy. Another study she conducted showed that multitarget stool testing in a cohort of Alaska Native people resulted in fewer false negative results compared with fecal immunochemical testing, which detects blood in stool.

A colonoscopy remains the recommended screening test at the Alaska Native Medical Center, because it’s more accurate than Cologuard and allows for pre-cancerous polyps to be removed during the procedure, but the center encourages multiple testing options.

“I fully subscribe to the idea that the best test is the one that gets done,” Redwood said.

HbA1c awareness in the Lumbee Tribe

The HbA1c test plays a crucial role in diagnosing prediabetes and diabetes. However, Ryan Dial, MCLS, a citizen of the Lumbee Tribe of North Carolina, found that many of his community members were either unfamiliar with the test or didn’t understand the significance of their results. Dial manages the Southeastern American Indian Cancer Health Equity Partnership at the University of North Carolina (UNC) Lineberger Cancer Center. With a background in laboratory science, he was motivated to collect data on the HbA1c testing experiences and health history of Lumbee people.

At the ADLM 2025 Annual Meeting, Dial shared the results of his research project, which surveyed 173 Lumbee adults in North Carolina. The key finding: 36% had never received an HbA1c test.

“In a completely perfect world, if everyone was following the United States Preventive Services Task Force recommendations, that number would be zero,” Dial said during the presentation. That’s because high-risk individuals, such as members of the Lumbee Tribe, should be screened in adolescence according to those recommendations. Other results from the survey underscore the importance of timely HbA1c screening: 72% of respondents had a family history of diabetes, while a little over 20% were diagnosed with the disease.

Dial also found that younger people were the least likely to have been screened or be familiar with HbA1c testing. “Diabetes is seen as a disease that you get when you’re 40 or 50, but unfortunately, I have to break it to our youth that we don’t have the privilege of waiting until we’re 40 to worry about this.”

Dial continues to analyze data from the survey and improve understanding in the Lumbee community about the importance of laboratory testing.

Lessons from COVID-19

The COVID-19 pandemic, and the unique diagnostic testing requirements it created, shined a light on strategies that could improve access to testing for AI/AN communities. One survey of 679 American Indian individuals living in the Great Plains found that people who were unable to isolate if they tested positive were only half as likely to be tested. Additionally, testing uptake was greater among those who worked full-time, possibly because negative test results were required to return to work after showing symptoms, or because those with full-time jobs are more likely to have health insurance.

Another study, which surveyed 778 AI/AN patients and 77 providers from urban areas in the U.S., found that patients' concern about contracting the virus during an in-person appointment was the most commonly reported barrier to COVID-19 testing. Although difficulty finding transportation to a clinic was the barrier least often reported by patients, it was the one most frequently cited by healthcare providers — an indication that providers may sometimes misunderstand the reasons why their patients hesitate to receive diagnostic testing.

During the early days of the pandemic, First Nations organizations in Manitoba, Canada, partnered with public health and government officials to ensure access to testing and treatment for First Nations people. Although they experienced disproportionate rates of COVID-19 infection, testing rates among First Nations were twice as high as those of other residents of Manitoba.“[This shows that] First Nations’ sovereignty over their data and health priorities can support First Nations health and well-being during a public health emergency,” the authors of a study on First Nations-led COVID-19 interventions wrote in a 2024 publication.

Open communication and cultural sensitivity

Laboratorians and researchers seeking to work with AI/AN communities should be mindful of cultural sensitivities and the history of misconduct in this area, according to Ronny Bell, PhD, MS, chair of the division of pharmaceutical outcomes and policy in the Eshelman School of Pharmacy at UNC and a member of the Lumbee Tribe.

“There might be hesitancy [among tribes to participate] because of some of these past exploitations,” he said, the most famous case being that of the Havasupai Tribe of Arizona and researchers at Arizona State University. In the 1990s, tribe members donated blood samples to the researchers with the understanding that they’d be used only for genetic studies on diabetes. In reality, the samples were also used for studies on schizophrenia, the tribe’s origin, and their degree of inbreeding — topics considered taboo in the Havasupai community.

It was an egregious violation of informed consent, especially considering that many AI/AN communities, including the Havasupai, view blood as sacred. The case was taken to court and eventually settled in 2010; one of the terms of the settlement was the return of the samples to the Havasupai Tribe so the blood could be buried.

The case serves as a striking reminder that laboratory medicine professionals should carry out their research and initiatives in full partnership with the communities they seek to support.

Yaakov Zinberg is a writer based in the Boston area. +LinkedIn: https://www.linkedin.com/in/yaakov-zinberg-276056198/

Read the full May-June issue of CLN.

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