Diabetes Care in American Indians in North Carolina

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Diabetes and the Eastern Band of Cherokee

• Anthony Fleg
• Deanndria Seavers
• Che Smith
• Brad Wright

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Outline

• 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

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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

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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

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North Carolinas Tribes
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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?

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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

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• Lots of resources as well!
• - tight-knit social/family networks

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• Lots of resources as well!
• - tight-knit social/family networks
• - respect for the traditional way

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• 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

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• 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

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• 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

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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. Alzheimers 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

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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
• http//www.cdc.gov/omh/Populations/AIAN/AIAN.htm.

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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

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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)

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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.

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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

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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)

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• There are 7 Cherokee clans
• -Wolf
• -Deer
• -Wild Potato
• -Long Hair
• -Blue
• -Bird
• -Paint

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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

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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

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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 http//www.cdc.gov/pcd/issues/2006/jul/p
  df/05_0221.pdf

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• Understanding the persistence
• of American Indian
• Health Inequalities

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Historical influences on Health and Health Care

• Health
• Foreign diseases
• Economic and social discrimination
• ?
• Health care
• Mistrust of Providers
• Mistrust of Health care institutions
• ?

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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

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• 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

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• 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.
• Source http//www.nature.com/nature/journal/v4
  30/n6999/full/430489a.html

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Health Inequities in the American Indian
Population

• A 500 year history
• First explained by providential explanations

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Providential explanations

• If God were not pleased with our inheriting
  these parts, why did he drive out the natives
  before us?
• -Winthrop (1634)

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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)

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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

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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

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• In the 19th century, health theories moved to
  consider the effects of government policies
• Reservation system enacted in 1830s-1870sthere
  was faith that civilization would eventually
  bring health to the American Indians

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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)

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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

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Another perspective historical trauma as a
health risk

• Featuring Ann Bullock, MD

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Diabetes Basics

• Chronic disease that affects the bodys 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

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Diabetes Complications

• heart disease
• stroke
• kidney disease
• nerve damage
• eye problems
• skin conditions
• foot complications
• depression

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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 (p0.08)

• 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

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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 wont
  show up as easily (underdiagnosed)
• Cultural Biases The classic AI is NOT stoic
  This is the result of a coping mechanism for
  trauma

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Pre-diabetes
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

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Treatment

• 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

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Obesity

• 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

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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

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US Prevalence of Diabetes
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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

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2002 2003 CDC Datawww.cdc.gov/pcd/issues/2006/j
ul/05_0221.htm

• Obesity
• Diabetes

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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

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Group Discussion
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Program Challenges

• Barriers
• cultural misunderstandings
• poor dissemination of diabetes knowledge to
  patients
• underutilization of current information
  technology
• insufficient clinical care, financial restraints,
  and
• no single best practice

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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

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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. -

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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

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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

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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 UNCs health
  professions faculty

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Small Group Activity

• Thinking Outside the Box

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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

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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

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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

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Wound Care Program

• To treat foot injuries prevalent in diabetics
• Tribe-funded
• All American Indians are eligible

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Questions?
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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

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• For a subject worked and reworked so often in
  novels, motion pictures, and television, American
  Indians arethe least understood, and the most
  misunderstood Americans of us all
• -John F. Kennedy (1963)