diabetes care in american indians in north carolina

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Page 1: Diabetes Care in American Indians in North Carolina
Page 2: Diabetes Care in American Indians in North Carolina

Diabetes and the Eastern Band of Cherokee

Anthony FlegDeanndria Seavers

Che SmithBrad Wright

Page 3: Diabetes Care in American Indians in North Carolina

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

Page 4: Diabetes Care in American Indians in North Carolina

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

Page 5: Diabetes Care in American Indians in North Carolina
Page 7: Diabetes Care in 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*

Page 8: Diabetes Care in American Indians in North Carolina

North Carolina’s Tribes

Page 9: Diabetes Care in American Indians in North Carolina

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?

Page 10: Diabetes Care in American Indians in North Carolina

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

Page 11: Diabetes Care in American Indians in North Carolina

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

Page 12: Diabetes Care in American Indians in North Carolina

• Lots of resources as well!

- tight-knit social/family networks

- respect for the “traditional way”

Page 13: Diabetes Care in American Indians in North Carolina

• 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

Page 14: Diabetes Care in American Indians in North Carolina
Page 15: Diabetes Care in American Indians in North Carolina

• 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

Page 16: Diabetes Care in American Indians in North Carolina

• 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

Page 17: Diabetes Care in American Indians in North Carolina

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 disease2. Cancer 2. Cancer3. Stroke 3. Unintentional Injuries4. COPD 4. Diabetes5. Unintentional injuries 5. Stroke6. Diabetes 6. Liver Disease7. Influenza/pneumonia 7. COPD8. Alzheimer’s 8. Suicide 9. Kidney disease 9. Influenza/pneumonia10. 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

Page 18: Diabetes Care in American Indians in North Carolina

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• SIDShttp://www.cdc.gov/omh/Populations/AIAN/AIAN.htm.

Page 19: Diabetes Care in American Indians in North Carolina

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

Page 20: Diabetes Care in American Indians in North Carolina

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%)

Page 21: Diabetes Care in American Indians in North Carolina

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.

Page 22: Diabetes Care in American Indians in North Carolina

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

Page 23: Diabetes Care in American Indians in North Carolina

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)

Page 24: Diabetes Care in American Indians in North Carolina
Page 25: Diabetes Care in American Indians in North Carolina

• There are 7 Cherokee clans

-Wolf-Deer-Wild Potato

-Long Hair -Blue

-Bird-Paint

Page 26: Diabetes Care in American Indians in North Carolina

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

Page 27: Diabetes Care in American Indians in North Carolina

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

Page 28: Diabetes Care in American Indians in North Carolina

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/pdf/05_0221.pdf

Page 29: Diabetes Care in American Indians in North Carolina

Understanding the persistence

of American Indian

Health Inequalities

Page 30: Diabetes Care in American Indians in North Carolina

Historical influences on Health and Health Care

Health• Foreign diseases• Economic and social discrimination• ?

Health care• Mistrust of Providers• Mistrust of Health care institutions• ?

Page 31: Diabetes Care in American Indians in North Carolina

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

Page 32: Diabetes Care in American Indians in North Carolina

• 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

Page 33: Diabetes Care in American Indians in North Carolina

• 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/v430/n6999/full/430489a.html

Page 34: Diabetes Care in American Indians in North Carolina

Health Inequities in the American Indian Population

• A 500 year history

• First explained by providential explanations:

Page 35: Diabetes Care in American Indians in North Carolina

Providential explanations

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

-Winthrop (1634)

Page 36: Diabetes Care in American Indians in North Carolina

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)

Page 37: Diabetes Care in American Indians in North Carolina

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

Page 38: Diabetes Care in American Indians in North Carolina

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

Page 39: Diabetes Care in American Indians in North Carolina

• 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

Page 40: Diabetes Care in American Indians in North Carolina

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)

Page 41: Diabetes Care in American Indians in North Carolina

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

Page 42: Diabetes Care in American Indians in North Carolina

Another perspective: historical trauma as a health risk

Featuring Ann Bullock, MD

Page 43: Diabetes Care in American Indians in North Carolina

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

Page 44: Diabetes Care in American Indians in North Carolina

Diabetes Complications

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

Page 45: Diabetes Care in American Indians in North Carolina

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)

21

14.613.6

% D

iab

etic

NativeAmerican

AfricanAmerican

White

•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

Page 46: Diabetes Care in American Indians in North Carolina

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

Page 47: Diabetes Care in American Indians in North Carolina

Pre-diabetesPre-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

Page 48: Diabetes Care in American Indians in North Carolina

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

Page 49: Diabetes Care in American Indians in North Carolina

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

Page 50: Diabetes Care in American Indians in North Carolina

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%

Page 51: Diabetes Care in American Indians in North Carolina

US Prevalence of Diabetes

Page 52: Diabetes Care in American Indians in North Carolina

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

Page 53: Diabetes Care in American Indians in North Carolina

2002 & 2003 CDC Datawww.cdc.gov/pcd/issues/2006/jul/05_0221.htm

Obesity

Diabetes

US NC EBCI

30% 23.5% men

23.6% women

45.7% men 47.9% women

US NC EBCI

5.4% men

4.7% women

6.4% men

7.9% women

26.9% men

21% women

Page 54: Diabetes Care in American Indians in North Carolina

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

Page 55: Diabetes Care in American Indians in North Carolina
Page 56: Diabetes Care in American Indians in North Carolina

Group Discussion

Page 57: Diabetes Care in American Indians in North Carolina

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

Page 58: Diabetes Care in American Indians in North Carolina

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

Page 59: Diabetes Care in American Indians in North Carolina

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.” -

Page 60: Diabetes Care in American Indians in North Carolina

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

Page 61: Diabetes Care in American Indians in North Carolina

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

Page 62: Diabetes Care in American Indians in North Carolina

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

Page 63: Diabetes Care in American Indians in North Carolina

Small Group Activity

“Thinking Outside the Box”

Page 64: Diabetes Care in American Indians in North Carolina

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

Page 65: Diabetes Care in American Indians in North Carolina

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

Page 66: Diabetes Care in American Indians in North Carolina

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

Page 67: Diabetes Care in American Indians in North Carolina

Wound Care Program

• To treat foot injuries prevalent in diabetics

• Tribe-funded

• All American Indians are eligible

Page 68: Diabetes Care in American Indians in North Carolina

Questions?

Page 69: Diabetes Care in American Indians in North Carolina

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

Page 70: Diabetes Care in American Indians in North Carolina

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)