Understanding and Addressing Health Disparities among American Indians

Webinar hosted by Patagonia Health

Welcome and Introduction

Good afternoon, everyone, and welcome to today's webinar hosted by Patagonia Health. Today's topic is understanding and addressing health disparities among American Indians. If you aren't familiar with the Zoom webinar platform, take a look at the control panel at the bottom of your screen. Here you can configure your audio settings, send chat messages, and ask questions.

We are so excited to hear from today's speakers. They are both from the University of North Carolina and are leaders and educators in advancing American Indian health equity through community engagement, cancer prevention, and chronic disease research. They are also both citizens of the Lumbee Tribe.

All right. Without further ado, I'm going to pass this over to our speakers.

We want to briefly touch on some important milestones that have shaped American Indian and Alaska Native health policy. That is also one of the terms we're going to discuss, so if you see "AIAN," know that we're referring to American Indian and Alaska Native peoples.

Dr. Bell will start with an overarching view of some of the health disparities and social determinants of health affecting American Indian and Alaska Native populations, and then hone in on health outcomes and health inequities among American Indians in North Carolina. I'll round it out by sharing some lessons learned from our work here at UNC with our tribal nations in the state.

What Is a Native Nation?

I always like to start before we get into the meat of what we do and why we do it by leveling the conversation on what a Native nation actually is. That definition is so important to our work, especially because at the end of the day, what we both do is outreach and engagement with American Indian peoples. It's very important to understand who those people are and how they are organized, particularly the people we work with and the people we want to engage.

Native peoples, and particularly Native tribes, exist in a very unique position as a sovereign entity, and that sovereignty predates any other government that has been here. Our indigenous tribes are the original government structures of this area. I want to state clearly that our sovereignty as Native nations is not granted to us by the federal government. It can be acknowledged or not acknowledged by federal and state governments, but our right to govern ourselves, our right to organize as tribal nations, has existed long before there were federal or state governments here in the United States or North Carolina.

I have this quote from a very prominent Lumbee scholar and historian, Dr. Malinda Maynor Lowery, from her book on the Lumbee Indians, published in 2018. I think she does a good job of describing the position of Native nations:

"Tribes are not static societies. They are composed of dynamic networks of kinship and place. Tribes have members, but they are not clubs or interest groups."

There are two very important points here. One, she gives a good framework for how to think about tribal nations. All tribal nations have these two dynamic networks: kinship and place. Another way I like to put it is that we have always known the answers to the questions of "Where are we from?" and "Who are our people?" That's no different for the Lumbee Tribe. We know where our home is, we know our connection to that land, and we know who our Lumbee people are. These are the key pillars of a Native nation: the relationships we have to each other and the relationships we have to our land.

Terminology

I also want to briefly touch on some of the terms we use to describe indigenous people. Even though these terms are often used interchangeably, it really does matter to define them, because they can potentially refer to different people. It's not a case of one being objectively right or wrong; it's more about which term is most appropriate given the situation.

Indigenous / Native:

The most inclusive terms. The United Nations has a clear definition of indigenous peoples, grounded in shared culture, shared societal structure, and a relationship based on shared geography. However, the inclusivity of these terms can sometimes be a drawback, since technically you're referring to a global population spanning hundreds of different cultural systems, societal structures, and language systems.

Native American / American Indian, Alaska Native:

More specific to the United States. You'll see "American Indian, Alaska Native" frequently in US policies. Some individual native people may have preferences about these terms; one common criticism is that they highlight the US government over the people being described. The separation between "American Indian" and "Alaska Native" reflects distinct policy histories and different governmental relationships.

Tribal identification:

The most precise term, and often the most favored. For Dr. Bell and myself, that means citizens of the Lumbee Tribe. The appropriateness of using a specific tribal name varies by context. For this webinar, we'll mostly use "American Indian/Alaska Native" or just "American Indian," as we want this knowledge to be applicable broadly to the indigenous people of the United States.

The key takeaway is that these terms are not interchangeable in all contexts, they do potentially mean different things, and they can refer to different people. There are no right or wrong answers, just more or less appropriate uses.

We do have time for questions at the end. Dr. Bell and I would be happy to address any questions in our last 10 to 15 minutes.

Key Policy Milestones in American Indian Health

I want to touch briefly on some of the policies in the United States that have governed and directed American Indian health outcomes, and the way the United States interacts with tribal communities when it comes to healthcare. This is not an extensive list, but it highlights key policy milestones and legislation that have steered a lot of the health outcomes we're going to discuss.

One important foundation: American Indians and Alaska Natives, by virtue of treaty rights, the US Constitution, and their relationship to the federal and state government, actually have a legal right to healthcare. That is very unique in the United States, where time and again legislation has shown that healthcare is not an inherent right for US citizens generally. Based on language in original treaties between the United States and tribes, the United States has a responsibility to provide adequate care to American Indians.

Key milestones include:

Cherokee Nation v. Georgia (1823):

This Supreme Court case set the groundwork for how the US government interacts with tribal nations. The key outcome was the language of tribes as "domestic dependent nations," establishing that tribes are sovereign governments with the right to elect their own leaders and make their own decisions, while still existing within the framework of US law. This is a foundational case studied in federal Indian policy and federal Indian law.

The Snyder Act of 1921:

The first piece of legislation that authorized Congress to appropriate money for, quote, "the relief of distress and the conservation of health of American Indians." This set the precedent for the federal government to set aside resources for American Indian health, rooted in the trust responsibility outlined in many original treaties.

The Indian Self-Determination and Education Assistance Act of 1975 (Public Law 93-638):

By this point the Indian Health Service (IHS) was already established, but this act fundamentally changed the relationship between IHS, the federal government, and tribes. Before this law, many IHS facilities were run directly by the federal government. This act created what are known as "638 contracts," allowing tribes to take compacts and contracts with the federal government and gain more ownership over IHS facilities. In many tribal communities today, you'll hear "638" used as a verb; a clinic that was originally run by IHS might have been "638'd," meaning the tribe took over its operation while still receiving federal funding.

There are whole courses on American Indian federal health policy, so boiling all of this down was a challenge. If you have further questions, please don't hesitate to ask.

Indigenous Populations: A Geographic Overview

This map, drawn from the most recent census data, outlines indigenous populations across the United States, including Alaska and Hawaii. A few important notes:

• It shows percent indigenous population relative to each area's total population, mostly at the county level, not absolute counts.
• This map is a direct result of US policies like relocation and allotment. A map from a few hundred years ago would have looked very different, particularly west of the Mississippi.
• In North Carolina, you can see two hotspots: the Eastern Band of Cherokee Indians in the west, and Robeson County, the bright red county, where the Lumbee Tribe is located. We have the highest percentage of American Indians on the East Coast.
• Blank areas on the map do not mean there are no indigenous people or tribal nations there. Tribal populations range enormously, from the Navajo Nation with over 400,000 citizens to many nations with fewer than 500.
• This map is based on census respondents who identified as American Indian or Alaska Native only, and does not include biracial or multiracial individuals who may still be enrolled citizens of a tribal nation. That means this map likely underestimates actual indigenous populations.

Dr. Bell, is there anything else you'd like to add about the map or the policies?

"No, that was very comprehensive. Thank you."

Indigenous Frameworks Around Health

One thing I always address in my work is that indigenous and Western medicine models are not mutually exclusive and do not exist on a binary. I commonly see, in both native and non-native communities, an incorrect dichotomy where people treat these frameworks as if one is right and the other is wrong. In my personal and professional view, that's not accurate. While they have different values and different models for understanding health and wellbeing, they exist on a spectrum where practitioners can engage with any of these frameworks as appropriate.

I was trained as a medical laboratory scientist, with a bachelor's and master's in medical lab science, specializing in clinical chemistry. I am very much trained in what would be considered a Western medical model: biochemistry, hematology, microbiology, and so on. But that does not mean I choose that over the frameworks my own people use to describe what it means to be healthy and well. Dr. Bell is similarly trained in epidemiology and research methodology. We both draw on multiple frameworks, and I think that makes us better practitioners.

The Medicine Wheel

The medicine wheel is an iconic framework used across many tribal communities to describe health holistically. It appears across tribes in North America, though its interpretation varies. The colors and meanings assigned to each quadrant are not always consistent, but the purpose is: it is a framework for describing complex questions about how we as Native people exist in the world and how we define health and wellness.

In our communities in North Carolina, the medicine wheel represents four interconnected aspects of health:

• Mental
• Emotional
• Physical
• Spiritual

The key point of the medicine wheel is that these four dimensions do not exist without each other. Even when we study physical health outcomes like cancer prevalence, we understand there are emotional, mental, and spiritual dimensions as well. Our programs try to address all of those aspects.

Many Native communities also acknowledge multiple medicinal herbs and sacred plants as "medicines" in a multidimensional sense, not just substances that affect the physical body, but things that affect mental, emotional, and spiritual wellbeing. When Native communities say something is "bad medicine" or "good medicine," that's what they mean: anything that has an impact across these dimensions of health.

Health Disparities: A National Overview

Dr. Bell:

Thank you, Ryan. That was a really great framework for this discussion. For many of you, this may be new information, so I want to be mindful of that as we transition from how Native people conceptualize health to what the data actually shows us.

Keep in mind the challenges inherent in this data. There are 575 federally recognized tribes, plus 200-plus tribes that are not federally recognized but may be recognized by their state. Native people have vast differences in cultural history and geography. In health services research, we tend to break data down by race and identify disparities by comparison to another population, which is an imperfect framework.

Some of the greatest health disparities for American Indians include:

Diabetes

• American Indians have the highest rates of type 2 diabetes of any major racial and ethnic group in the United States, with about 15% of adults affected.
• The Gila River Pima population in southern Arizona has the highest prevalence of diabetes of any population group in the world, driven in large part by disruptions to traditional food systems and the influx of high-fat, high-sodium commodity foods.
• Some of the earliest documented cases of adolescent-onset type 2 diabetes, in the late 1970s and early 1980s, occurred in Hopi, Pima, and Navajo communities. These communities were the "canary in the coal mine."
• The federal Special Diabetes Program for Indians has been in existence for over 30 years and provides resources to tribes for both diabetes care and prevention. It is one of the most successful public health programs in this country, with documented reductions in end-stage renal disease, diabetes-related deaths, hemoglobin A1C, and blood pressure.

Cardiovascular Disease and Stroke

• Distinct disparities exist. The Strong Heart Study, ongoing for nearly 40 years, is a landmark study of cardiovascular disease in American Indians across tribes in the Dakotas, Oklahoma, and Arizona.

Cancer

• Disparities are not uniform across cancer types. We generally do not see a disparity in breast cancer incidence or mortality for Native women.
• We do see disparities in prostate cancer, lung cancer, gastric cancer, and liver cancer.

Sexually Transmitted Diseases

• High rates of HIV, gonorrhea, and chlamydia, with significant disparities compared to other populations.

Access to Care

• Disparities persist even with the Indian Health Service. A recent study found that the IHS has the lowest per capita allocation of healthcare dollars among federal programs, including Medicare, the VA, and even the federal prison system.

Medical Mistrust

• Decades of manipulation in both medical care and research have contributed to deep mistrust. One prominent example is the Havasupai Tribe in northern Arizona, whose blood samples were used for research purposes without their consent. This exploitation leads to mistrust, which leads to inadequate care, which contributes to these negative health outcomes.

Social Determinants of Health

• Many of these disparities are rooted in adverse social determinants of health. The IHS developed a framework specifically for Native populations to address this.

COVID-19 and Life Expectancy

• Nationally, life expectancy declined by about 2.6 years between 2019 and 2021 due to the COVID pandemic. For American Indians, that reduction was 6.6 years. This is a population that already had the lowest life expectancy of any major racial and ethnic group, and it sustained the largest reduction.
• Elevated COVID cases, hospitalizations, and deaths in this population were driven by both adverse social determinants of health and underlying conditions like diabetes, hypertension, and cardiovascular disease.

Compilation of Health Indicators

• A Kaiser Family Foundation study comparing health outcomes across five major racial and ethnic populations found that American Indians and Alaska Natives had worse outcomes on 17 of 27 health indicators compared to non-Hispanic White populations.

Health Disparities in North Carolina

Ryan:

Spoiler alert: you see many of the same disparities and outcomes in our tribal populations here in North Carolina.

First, a note on terminology. This map shows tribal territories, which is different from reservations. A reservation is a specific US policy term describing land held in trust by the federal government. Many tribes, particularly those in North Carolina, define their territory by county. This has significant implications for governance, council elections, and district representation.

North Carolina has eight federally and state-recognized tribes, two of which are federally recognized: the Eastern Band of Cherokee Indians and the Lumbee Tribe, which received federal recognition as recently as December of last year. That means things are changing rapidly in our communities, particularly around health and healthcare.

Recognition refers to the government-to-government relationship, not a tribe's inherent sovereignty or right to govern. Some tribes are federally recognized but not state-recognized; others have both.

From the 2024 North Carolina Department of Health and Human Services Health Disparities Report, here are key indicators compared to non-Hispanic White populations:

Infant and Early Life Outcomes

• Native infants are twice as likely to die in the first year of life
• Two to three times more likely not to be breastfed
• Three times more likely to be born to a teen mother
• Twice as likely to die before adulthood

Chronic Disease

• Twice as likely to be diagnosed with diabetes and almost twice as likely to die from it
• 1.6 times more likely to die from heart disease, stomach cancer, or kidney disease
• 1.5 times more likely to die from Alzheimer's disease

Communicable Diseases

• High disparities in HIV, syphilis, gonorrhea, and hepatitis B and C

Substance Use and Violent Death

• Among our highest priorities in North Carolina are disparities in substance use and violent death
• American Indians in the state are nearly six times more likely to be the victim of a violent death from homicide compared to non-Hispanic White populations

Considerations in American Indian Health Data

There are important limitations to keep in mind when working with American Indian and Alaska Native health data. The question is not whether the data is useful, but whether it is appropriate and whether it answers the questions we have. Often, it does not.

• Many national datasets exclude state-recognized tribes. Because the Lumbee Tribe was only recently federally recognized, much of the existing data does not include our people.
• There is a significant lack of data infrastructure and capacity, particularly in North Carolina, for collecting data that is useful not just to public health practitioners but to tribal community members themselves.
• Racial misclassification is a persistent and serious problem. In death certificate data and in inpatient and outpatient medical records, it is not uncommon for Native people to be recorded as a different race. This undermines confidence in the data and complicates public health decision-making.

Current Initiatives at UNC

Southeastern American Indian Cancer Health Equity Partnership

A collaboration between North Carolina's three NCI-designated Comprehensive Cancer Centers: Atrium Health Wake Forest Baptist, Duke Cancer Institute, and UNC Lineberger Comprehensive Cancer Center, where Dr. Bell and I work. Dr. Bell serves on our leadership council; I serve as project manager. We have multiple ongoing projects to understand and address the cancer health burden in American Indian communities in North Carolina.

Healthy Native North Carolinians Program

Managed through the American Indian Center at UNC, this program is funded through Blue Cross Blue Shield and their tribal liaison team. We disseminate those funds to tribal communities through community grant awards, typically awarding eight to ten communities with grants of eight to ten thousand dollars each year to support tribal health initiatives in both tribal and urban Indian communities in North Carolina.

Q&A

Question from Emma: "Thank you both for this excellent presentation. I am primarily interested in First Nations healthcare, but my most recent work has been on diabetes generally. I want to bring companies like Abbott on board and ask them to partner with us and IHS to provide newer technology. They donated 20,000 devices to a nonprofit in India two years ago. What is the most important thing for me to communicate to them? Given your expertise, how should we engage industry so that they can be more respectful and more engaged?"

Ryan: That's a great question, and it connects to my background in medical laboratory science. The most important thing is building a bidirectional relationship with tribal communities and tribal nations. Engaging with Native people is different from engaging with other communities because there is an additional layer: you are not just engaging with individuals, you are engaging with nations that govern those people, nations that community members have empowered through their votes. The first step is to build genuine relationships with tribal nations, attend events that are open to the public, and show, not just tell, that your organization is committed to a sustainable relationship with the tribal community. Many tribes also have their own Department of Health and Human Services, so finding out what the public health and healthcare infrastructure looks like for that specific tribe will be very important.

Question from Andrea: "As someone who works for a state government entity that American Indians have every reason to distrust, what is the culturally appropriate way to reach out to tribal communities to open lines of communication for public health information and resources?"

Ryan: The answer is similar: build relationships, and understand that it takes time. A few perspectives from the tribal community side:

• Tribal communities are tight-knit, and institutional history is long. Even if you are personally new, you carry the history of your organization. Acknowledge that.
• Ask how your work benefits the community, not just your organization. Researchers and public health practitioners sometimes go into tribal communities with good intentions but derive more benefit from the work than the communities do. Be intentional about making sure your work comes back to the tribe.
• Show up. Attend powwows and public events. Introduce yourself. Understand the network. Find out who the right contacts are instead of calling the main office and getting transferred indefinitely.
• Sustainability matters. Tribal governments go through elections, leadership changes, and shifting priorities, just like any government. Relationships that last are built on consistent presence and personal connection, not one-time engagements.

Dr. Bell: At the state level, you can also work to develop a formal tribal consultation policy through the Department of Health and Human Services or the Department of Administration. That kind of policy can set out explicitly what the state government-to-tribe relationship looks like, and provides a framework for ongoing engagement.

Closing

Thank you so much to everyone for joining today, and thank you to our speakers for this excellent presentation. If this is your first time hearing about Patagonia Health, we are an EHR, practice management, and billing solution specifically for public health, behavioral health, and tribal health. Our speakers' contact information was shared in their slides, so please feel free to reach out to them directly. If you have questions about Patagonia Health, visit our website. Have a great day, everyone.

Thank you. Thanks, Ryan. Thanks, Dr. Bell.