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diabetes and the eastern band of cherokee

Diabetes and the Eastern Band of Cherokee

Anthony Fleg

Deanndria Seavers

Che Smith

Brad Wright

  • American Indians (AI) and Their Health
  • The Eastern Band of Cherokee and Their Health
  • AI Disparities: A Historical Perspective
  • Video
  • Diabetes Overview: National, State, Cherokee
  • Group Discussion Activity
  • Cultural Competency with American Indians
  • Small Group Activity
  • Current Diabetes Programs in Cherokee, N.C.
  • Q & A
american indians in the united states
American Indians in the United States
  • 2.5 - 4.1 million persons
  • 569 Federally recognized tribes + 300 State recognized tribes
  • 10% speak lndigenous language in the home
  • Major U.S. historical markers
    • 1492 – First encounters with Europeans
    • 1830 – Indian Removal Act
    • 1924 – Indian Citizenship Act
    • 1930s-1960s – Boarding schools
american indians in north carolina
American Indians in North Carolina
  • There are more American Indians in North Carolina (~ 100,000) than in any other state east of the Mississippi River
  • Nearly 60% of the AI population in NC belong to the Lumbee Tribe
  • There are 8 Tribes represented in NC
    • 7 are state recognized
    • 1 is federally recognized*
state vs federal recognition
State vs. Federal Recognition
  • Federally recognized tribes have access to the Indian Health Service (IHS) – blessing or curse?

 Traditionally, IHS was run 100% out of tribes’ control

 IHS spends about 50% of what it would take to offer what the average health plan offers

 Other major issue is that HIS spends 1% of its budget on urban AI, despite the reality that 2/3 of AI live off reservations

  • State tribes have no guaranteed access to health care services  AI in NC have similar access to care barriers as other poor, minority, and rural populations
  • What are other consequences (positive and negative) to being a state recognized tribe?
american indian health in nc
American Indian Health in NC
  • Lots of needs

- lack of tribal health system

- “invisibility” of AI population

- data gap

- few health interventions

- little political presence

- lack of culturally competent care

- problems of the rural poor

Lots of resources as well!

- tight-knit social/family networks

Lots of resources as well!

- tight-knit social/family networks

- respect for the “traditional way”

Lots of resources as well!

- tight-knit social/family networks

- respect for the “traditional way”

Ex: Tobacco and the AI Not on Tobacco program

 “For us, tobacco is sacred. In the older teachings of what it was all about, it was very important to see that it was sacred. A lot of us have forgotten the sacred purposes of tobacco, for various reasons.”

- Dennis Nicholas, Kanehsatake Elder, March 2002

Lots of resources as well!

- tight-knit social/family networks

- respect for the “traditional way”

Ex: Tobacco and the AI Not on Tobacco program

 “For us, tobacco is sacred. In the older teachings of what it was all about, it was very important to see that it was sacred. A lot of us have forgotten the sacred purposes of tobacco, for various reasons.”

- Dennis Nicholas, Kanehsatake Elder, March 2002

- strong, central role of faith/churches

Lots of resources as well!

- tight-knit social networks

- respect for the “traditional way”

Ex: Tobacco and the AI Not on Tobacco program

 “For us, tobacco is sacred. In the older teachings of what it was all about, it was very important to see that it was sacred. A lot of us have forgotten the sacred purposes of tobacco, for various reasons.”

- Dennis Nicholas, Kanehsatake Elder, March 2002

- strong, central role of faith/churches

  • A plug for community asset mapping – the resources are as important as the needs when designing programs/interventions
american indian health in the u s
American Indian Health in the U.S.

2002 CDC Mortality Data for the United States – Top 10 leading causes of death

U.S. population American Indian population

1. Heart disease 1. Heart disease

2. Cancer 2. Cancer

3. Stroke 3. Unintentional Injuries

4. COPD 4. Diabetes

5. Unintentional injuries 5. Stroke

6. Diabetes 6. Liver Disease

7. Influenza/pneumonia 7. COPD

8. Alzheimer’s 8. Suicide

9. Kidney disease 9. Influenza/pneumonia

10. Sepsis 10. Homicide

Of note: (1) Liver disease, suicide, homicide present only in AI list

(2) Diabetes and Unintentional injuries higher up in AI list

american indian health in the u s18
American Indian Health in the U.S.

Centers for Disease Control (CDC) office has identified a “disproportionately high prevalence”of health inequalities in 4 areas

  • Mental health
  • Substance abuse
  • Obesity
  • SIDS

american indian health in nc19
American Indian Health in NC
  • Limited data, non-existent tribe specific data
  • AI rates of chronic disease, infectious disease, and unintentional injuries are roughly twice as high as for other North Carolinians
american indian health in nc20
American Indian Health in NC
  • 2002-3 BRFSS data – touted as a “solution” to the data gap
  • On 17 of 20 age-adjusted health indicators, there was a “significant health disparity between AI and whites”

- Diabetes : 14% vs. 7%

- HTN: 40% vs. 27%

- Unable to see a doctor due to cost: 29% vs. 12%

- Disabled: 39% vs. 25%

  • Most of the differences persisted after controlling for sociodemographic factors
  • Prevalence rates similar for AI and African American population in NC
  • Methods: 16,203 respondents, 434 American Indians (2.7%)
framing the numbers
Framing the numbers…
  • One way to frame it (the biomedical “disparities” approach) – Why are AI experiencing health inequalites?
    • Intervention: Study AI, and then tailor a program to address AI risk factors
  • Another framework – What social and health inequities, shared by AA, AI and other underserved groups lead to similarly high rates of disease?

 Intervention: Study all affected groups, and address the larger structures of inequities shared by AA, AI, etc.

american indian health in nc22
American Indian Health in NC

Recommendations for improving AI health in NC*

  • Data, Information and Gaps
  • Sovereignty, Governance and Systems
  • Access to Prevention and Care Services

*2004-5 DHHS + NC Commission of Indian Affairs Joint Task Force on Indian Health

eastern band of cherokee
Eastern Band of Cherokee
  • Trace their people back 11,000+ years
  • Once controlled 140,000+ square miles (much of current-day 8 southern states)
  • Each village governed itself, and had a peace chief, a war chief, and a priest
  • Matriarchal system
  • Sequoyah – created an alphabet for Tsalagi (Cherokee language)
There are 7 Cherokee clans



-Wild Potato

-Long Hair




trail of tears
Trail of Tears
  • Cherokee had served as important allies for the U.S. against the French and British, but their land became increasingly desired (for plantations, possible gold)
  • In 1838, 17,000 Cherokee were forcibly marched westward by U.S. Army
  • On the 6 month journey to Oklahoma, 1 in 4 died
  • Those who hid from the Army, along with those who returned, became the Eastern Band of Cherokee
eastern band of cherokee today
Eastern Band of Cherokee Today
  • 13,000 live in/around Qualla boundary (56,000 acres) in Cherokee, NC
  • Thriving casino and tourism industry
  • Tribe has taken control of the IHS hospital  Cherokee Indian Hospital
cherokee health
Cherokee Health
  • Poverty rates are falling – 31% down to 22% since Casino opened
  • Obesity rates twice the state average, close to 50% (2003)*
  • 60% of 6-11 year old youth were overweight or obese (2003)*
  • Surprisingly, data is still hard to find!

* Source:

Understanding the persistence

of American Indian

Health Inequalities

historical influences on health and health care
Historical influences on Health and Health Care


  • Foreign diseases
  • Economic and social discrimination
  • ?

Health care

  • Mistrust of Providers
  • Mistrust of Health care institutions
  • ?
havasupai tribe vs arizona state university
Havasupai Tribe vs. Arizona State University
  • Professors worked with members of the tribe to design a project to study a pressing medical issue of the tribe -- diabetes -- in 1989.
  • The resulting "Diabetes Project" was supposed to offer three components: Diabetes education, collecting/testing blood samples from members to identify diabetics or people who are susceptible to the disease, and conducting genetic testing "to identify an association between certain gene variants and diabetes.“
  • In 2003, a tribal member approached ASU administrators and asked if the blood samples had been used for research other than that agreed to by the tribal members.

Source: Arizona Daily Sun

The independent investigation uncovered "... numerous unauthorized studies, experiments and projects by various universities and laboratories throughout the United States ..." that resulted in at least 23 scholarly papers, articles and dissertations that involved the Havasupai blood samples. Fifteen of those publications dealt with subjects that had nothing to do with diabetes -- like schizophrenia, inbreeding and theories about ancient human population migration to North America. -Arizona Daily Sun article
Editorial in Nature:

Leaders from both communities need to reach out to each other to bridge the gap between their cultures. The National Human Genome Research Institute is funding work to do precisely this. One group in a unique position to help are Native American scientists: they too can support dialogues to create a research environment to match the genetic opportunities of the times.


health inequities in the american indian population
Health Inequities in the American Indian Population
  • A 500 year history
  • First explained by providential explanations:
providential explanations
Providential explanations

“If God were not pleased with our inheriting these parts, why did he drive out the natives before us?”

-Winthrop (1634)

providential cont
Providential (cont.)
  • Foreign disease introduced (intentional and un-intentional)

“Where we were most welcome, where we baptized most people, there it was in fact where they died the most”

-Lalement (1640)

behavioral explanations
Behavioral explanations
  • Behavioral explanations for disease
  • Explaining smallpox, which reduced tribal nations by 50-95% (e.g. 5-50% were left), destructive Indian behaviors were blamed – indifference to cleanliness, reckless use of sweat baths and the “vicious and dissolute” life caused by alcohol
  • Disease became a tool of moral exhortation
behavioral cont
Behavioral (cont.)

According to missionaries, if vice brought disease to American Indians, then acceptance of Christian morality and lifestyles would bring them health

-Jones DS, AJPH 2006

In the 19th century, health theories moved to consider the effects of government policies
  • Reservation system enacted in 1830s-1870s…there was faith that civilization would eventually bring health to the American Indians
disparities in health and health resources persisted
Disparities in health and health resources persisted
  • In 1890, govt. was spending $1.25 per Indian (vs. $20-$40 per military personnel)
  • 1917 – as spending on AI health began to increase, this was the first year in 50 years where birth rate > death rate
  • 1925 – TB rates (per 100,000): U.S. (87), AI (603), Arizona AI (1510)
recent and current frameworks
Recent and current frameworks
  • Environmental factors
  • Genetic explanation of disease rates
  • SES as proxy for “social determinants” of health
  • Recognition that increased tribal control of health services is necessary
  • Race/discrimination rarely considered
diabetes basics
Diabetes Basics
  • Chronic disease that affects the body’s ability to properly produce or use insulin
  • Four major types of diabetes: type 1, type 2, gestational and prediabetes.
  • Type 2 diabetes (non-insulin dependent diabetes mellitus), is the adult-onset condition accounting for 90-95% of diagnosed cases
  • Risk factors: family history of diabetes, previous gestational diabetes, impaired glucose metabolism, physical inactivity and race/ethnicity
diabetes complications
Diabetes Complications
  • heart disease
  • stroke
  • kidney disease
  • nerve damage
  • eye problems
  • skin conditions
  • foot complications
  • depression
depression diabetes
Depression & Diabetes
  • Rates of depression are nearly twice as high among diabetics than non-diabetics
  • Depression reduces quality of life and is associated with increased morbidity, mortality, and health care costs
  • Not a statistically significant difference by race/ethnicity (p=0.08)
  • Source: Bell RA et al. Prevalence and correlates of depressive symptoms among rural older African Americans, Native Americans, and Whites with diabetes. Diabetes Care 28(4): 823-829
depression diabetes cont
Depression & Diabetes (cont.)
  • Definite physiological and behavioral links
    • Questions remain as to causal order
  • Hard to quantify the prevalence in AI compared to other populations
    • Dx by responses to a set of questions
    • Historical trauma and stress make differences in baseline likely
    • “Depression may be the norm” for AI, so it won’t show up as easily (underdiagnosed)
    • Cultural Biases – The classic AI is NOT stoic – This is the result of a coping mechanism for trauma
pre diabetes


  • The NIH, CDC and the American Diabetes Association show that about 40% of Americans between ages 40 and 74 have pre-diabetes
  • Type 2 can be prevented
  • Improving glycemic and blood pressure control have shown to be effective
  • Improved glycemic control can be achieved through regular physical activity
  • Pre-diabetes shown preventable through regular exercise and a proper diet
  • Link between obesity and the increased chance of developing diabetes
  • 2005 CDC estimates show between 25-29% of population obese
  • 2002 North Carolina Diabetes Summary showed that 21.8% of NC is obese
  • Obesity trend may increase rate of pre-diabetics/diabetics
national and state data
National and State Data

In US:

  • In 2005, the national prevalence of all types of diabetes was at 20.8 million Americans, or 7% of the population, with 6.2 million who have been undiagnosed

In NC:

  • In 2004, an estimated 584,000 people with diabetes.
  • Between 1995 and 2000, the prevalence of diabetes in adult population increased 42%
diabetes prevalence in ai
Diabetes Prevalence in AI
  • American Indians in North Carolina are three times more likely to die from diabetes than are whites in the state
  • Between 1990 and 1997 the prevalence of diagnosed diabetes among American Indians increased by roughly 30%
  • Diabetes rates in the Lumbee are more comparable to those among the general NC population perhaps because they do not live on a reservation but are more integrated in their local community (primarily Robeson County)
  • Source: Levin S et al. Geographic variation in cardiovascular disease risk factors among American Indians and comparisons with the corresponding state populations. Ethnicity & Health 7(1): 57-67
2002 2003 cdc data www cdc gov pcd issues 2006 jul 05 0221 htm
2002 & 2003 CDC



trends in diabetes
Trends in Diabetes??
  • “A good news, bad news situation”
  • Achieving targets, realizing better medical care
  • But longer lives spent with diabetes leads to multiple complications (morbidity)
  • Compounded by earlier age of diabetes onset (~ 30 years old)
  • This is more expensive for the system
program challenges
Program Challenges


  • cultural misunderstandings
  • poor dissemination of diabetes knowledge to patients
  • underutilization of current information technology
  • insufficient clinical care, financial restraints, and
  • no single best practice
decreasing barriers
Decreasing Barriers
  • Increase social support and self-efficacy for patient adherence
  • Increase patient education and include behavioral change education
  • Change diabetes research from ideal, clinical settings with those at highest risk, to more community-based research and interventions
ai beliefs about diabetes
AI Beliefs about Diabetes
  • Most of the population is well-educated and knows the cause(s) of diabetes, BUT
  • There is are feelings of fatalism:
    • “I am going to get diabetes because I am a Native American and Native Americans have such a high prevalence of diabetes.”
    • “…Because the disease is so rife, it has unfortunately created an almost fatalistic acceptance of diabetes as an inevitable fact of Cherokee life, and a widespread belief that the disease is not preventable.” -
cultural competency tribes
Cultural Competency & Tribes
  • It is important to keep in mind that each AI tribe has its own unique culture and heritage and its members consider themselves a distinct “Indian Nation”
  • Therefore, clinicians and others must respect these differences to provide culturally competent care
  • E.g., Tobacco is considered sacred by most if not all tribes....thus, smoking cessation interventions may pose a challenge
implementing cultural competency in interventions
Implementing Cultural Competency in Interventions
  • Clinicians caring for the AI population must be empathetic towards the long history of stress and trauma suffered by AI
  • Clinicians must realize that unlike the dominant western view of individualism, AI prioritize the family and the tribe
  • Interventions must be tailored accordingly
challenges for implementing cultural competency
Challenges for Implementing Cultural Competency
  • Two-Pronged Approach to Health Professions Training
    • Cultural Competency Curriculum
    • Increase AI enrollment (Offer experiential learning to peers during school & More likely to serve their own after graduation)
  • But Whose Lead To Follow?
    • These types of changes are made from the top down
    • Not a single American Indian on UNC’s health professions faculty
small group activity

Small Group Activity

“Thinking Outside the Box”

cherokee choices
Cherokee Choices
  • Cherokee Choices (Sept. 2001 – Aug. 2004 )
    • Primary and Secondary Diabetes Prevention
    • Education in Elementary Schools
    • Worksite Wellness
    • Faith-based Wellness
    • Native Lifestyle Balance
    • Social Marketing Campaign
    • Goals: 7% weight loss & 150 minutes of exercise
  • Funded by a Reach 2010 Grant
cherokee choices65
Cherokee Choices
  • Successes
    • Increased worksite knowledge about diabetes
    • Increased physical activity of students and staff
    • Changes in school lunch menus
    • Increased parental involvement in student activities
  • Evaluation
    • Last reviewed in January 2007
    • REACH Information Network evaluation tools
cherokee diabetes program
Cherokee Diabetes Program
  • State of the Art Program
    • Uses Evidenced-Based Medicine
    • Acupuncture
    • Massage
    • Yoga
    • Used to have traditional healer, but has not been replaced since last one left
  • Funded by IHS Grant
wound care program
Wound Care Program
  • To treat foot injuries prevalent in diabetics
  • Tribe-funded
  • All American Indians are eligible
special thanks to
Special Thanks To:
  • Ann Bullock, MD
    • Medical Director of Cherokee Health and Medical Division since January 2000
    • With HMD since 1990
  • Ronny Bell, PhD
    • Epidemiology professor at Wake Forest
    • Lumbee Indian
    • AI Task Force member
  • Mary Anne Farrell, MD, MPH
    • Clinical Director of Indian Health Service, Nashville Area
  • Susan Leadingfox
    • Deputy Health Officer for the Cherokee Tribe
For a subject worked and reworked so often in novels, motion pictures, and television, American Indians are…the least understood, and the most misunderstood Americans of us all

-John F. Kennedy (1963)