Challenges for American Indians and Alaska Natives Attaining Health Equality

Transcription

1 Challenges for American Indians and Alaska Natives Attaining Health Equality Linda Burhansstipanov, DrPH (Cherokee Nation of Oklahoma) Native American Cancer Research 3022 South Nova Road Pine, CO ; ; fax: Native American Cancer Research ; 1 Introduction What is an Indian and how do we differ from other medically under-served communities? American Indian = AI Alaska Native = AN 1

2 Uniqueness of AIAN History All or almost all cultures throughout history experience some form of: Violence Domination Slavery Annihilation These cultures all have something unique about their experiences and survival Today s session is to explain what some of those unique events are within the Natives story 3 What are the differences in the American Indians history? Since the formation of the union, the U.S. has recognized Tribal governments as sovereign nations The federal government has enacted numerous statutes and regulations that establish and define Who is an Indian Their relationship to the federal government

3 Indians are not just... a minority... a special interest group... a political party Thank you, Lauren Tancona, CDC for the use of the slide 5 Tribal Sovereignty Tribes are governments that have authority with regard to their members Tribes existed prior to the U.S. Tribal Nations made treaties with colonial powers, states, and the U.S. Nations within a nation Their powers do not super cede US Government, but they can have powers that are NOT under the control of US Govt

4 Government-to-Government Relationship Tribes are treated as governments by the federal government. Approval Protocols unique to each tribal Nation 7 Government-to-Government Relationship and Tribal Consultation Tribal consultation = means federal agency must meet with all 564+ federally recognized tribal Nations Cannot meet with selected Nations or groups and meet the legal definition of consultation

5 How does the Federal Government Identify AIANs? Tribes establish criteria for membership ¼ tribal blood is the Bureau of Indian Affairs (BIA) Standard A descendant of a tribal member Or a person recognized by the tribal members as a member. Alaska Native: The term collectively refers to Eskimos, Aleuts, and American Indians who are indigenous to Alaska. 9 Brief overview of AIAN Historical Events as Basis of Distrust of Government and its Programs 5

6 Indian Lands within the U.S.: 1492 to? 11 Indian Lands within the U.S.: 1492 to?

7 Indian Lands within the U.S.: 1492 to? 13 Indian Lands: 1492 to Present

8 First They Took Our Land Then They Took Our Children Tom Torlino (Navajo) as he appeared upon arrival to the Carlisle Indian School, October 21, Three years later 15 Characteristics of the Boarding School Experience (cont.) Extreme diet changes. Children who didn t go home, took on the characteristics of their caretakers

9 Many Contemporary (since 1960s) Events 1968 American Indian Movement and Alcatraz Island reclaiming deserted federal lands as per federal law 1970 s sterilization of American Indian women without informed consent Many other events (NY / Canada Mohawk siege; Rosebud; Wounded Knee (recent event, not the original event) 17 Culture-wide Multiple Traumas Racism/Poverty Addiction Depression Post Traumatic Stress Disorders Neglect/Abuse of Children Inadequate Mirroring Unresolved Grief Boarding Schools Children never parented so never learned to parent Coping: Unhealthy Behaviors Long histories of subjugation, historical trauma, unresolved grief and the challenges of changing cultures, poor economics, and lack of opportunities are negative and destructive 9

10 How May Historical Trauma Affect AIANs Use Of The Healthcare System? Example: distrust = avoid Western medicine What are specific examples related to cancer? Cancer clinical trials (especially treatment trials) Cancer genetic studies 19 AI/AN Public Health: Challenges Few AI/AN public health professionals Limited familiarity with AI/AN policies Complexities /logistics over 500 tribes Modified slide with permission from Dean Seneca, MPH, CDC

11 AI/AN Public Health: Challenges Public health legislation /legal foundations Lack of public health infrastructure Funding issues Thank you, Dean Seneca, MPH, ATSDR, CDC, for sharing the slide 21 Examples Public Health Funding Issues Lack of AI/AN-specific funds Data errors under-count AIAN health problems Limitations/problems of categorical funds Funds received by CDC/ATSDR often designated for state health departments Thank you, Dean Seneca, MPH, CDC, for sharing the slide

12 Examples Public Health Funding Issues Tribal ineligibility for certain funds Current funding policies/procedures often put states and tribes in competition for same funds Funding agencies do not understand historical context of phrasing AIAN organizations include within grant applications Modified from slide provided by Dean Seneca, MPH, CDC 23 What Does Cancer Health Disparity Mean? Gender Differences in the Age incidence, prevalence, Ethnicity mortality and burden Education of cancer and related Income adverse health conditions that exist Social class among specific Disability population groups in Geographic location the U.S.* Sexual orientation *Cancer Health Disparities Progress Review Group, Making Cancer Health Disparities History: Report of the Trans-HHS Cancer Health Disparities Progress Review Group. US DHHS. March p. vi

13 First documented misclassification of American Indians Thank you Chuck Wiggins, PhD, UNM SEER! American Indian Alaska Native Cancer Data Misclassification and Regional Differences in Incidence and Mortality 25 IHS Health Risk Factor Data (BRFSS, ) Current Smoker US 22.8% NHW 31% AIAN Southern Plains Region 33.2% Northern Plains Region 40.1% Steele CB, Cardinez CJ, Richardson LC, Tom-Orme L, Shaw K. Surveillance for Health Behaviors of American Indians and Alaska Natives Findings from the Behavioral Risk Factor Surveillance System, , CANCER 2008, in press American Indian Alaska Native Cancer Data Misclassification and Regional Differences in Incidence and Mortality

14 IHS Health Risk Factor Data (BRFSS, ) Ever told have diabetes US 6.0% NHW 12.4% AIAN Southern Plains 12.6% No. Plains 13.0 % Steele CB, Cardinez CJ, Richardson LC, Tom-Orme L, Shaw K. Surveillance for Health Behaviors of American Indians and Alaska Natives Findings from the Behavioral Risk Factor Surveillance System, , CANCER 2008, in press American Indian Alaska Native Cancer Data Misclassification and Regional Differences in Incidence and Mortality 27 IHS Health Risk Factor Data (BRFSS, ) Obese (CDC defn. BMI => 30.0 kg/m2) US 20.8% NHW 29.0% AIAN Southern Plains 30.9% Northern Plains 31.0% Steele CB, Cardinez CJ, Richardson LC, Tom-Orme L, Shaw K. Surveillance for Health Behaviors of American Indians and Alaska Natives Findings from the Behavioral Risk Factor Surveillance System, , CANCER 2008, in press American Indian Alaska Native Cancer Data Misclassification and Regional Differences in Incidence and Mortality

15 IHS Health Risk Factor Data (BRFSS, ) Health care coverage US 88.3% NHW 75.6% AIAN Southern Plains 71.8% Northern Plains 77.2% Steele CB, Cardinez CJ, Richardson LC, Tom-Orme L, Shaw K. Surveillance for Health Behaviors of American Indians and Alaska Natives Findings from the Behavioral Risk Factor Surveillance System, , CANCER American Indian Alaska Native Cancer 2008, Data Misclassification in press and Regional Differences in Incidence and Mortality 29 Every time an elder dies... a library burns Patricia Cochran, MS, Inupiaq, Executive Director Alaska Native Science Commission 15

16 AIAN Cancer Incidence Data (finally) THANK YOU! CHSDA Counties = IHS Contract Health Service Deliver Areas NHW = Non- Hispanic White American Indian Alaska Native Cancer Data Misclassification and Regional Differences in Incidence and Mortality

17 All Breast Cervix Colon Kidney Lung Prostate Incidence Rates ( )* AIAN US NHW So. Plains AIAN NHW No Plains AIAN NHW Source: Cancer registries in Centers for Disease Control and Prevention's (CDC) National Program of Cancer Registries (NPCR) and National Cancer Institute's (NCI) Surveillance, Epidemiology, and End Results Program (SEER) D. Espey, Monograph Group. American Indian Alaska Native Cancer Data Misclassification and Regional Differences in Incidence and Mortality Annual Report to the Nation Cancer incidence among AI/AN s, though generally lower than for the Non-Hispanic White (NHW) population, is rising rapidly In 3 of the twelve regions of the Indian Health Service, cancer incidence rates are equal to that of the dominant white population Alaska Northern Plains (IL, IN, IA, MI, MN, MT, NE, ND, SD, WI, WY) Southern Plains (OK, TX, KS) American Indian Alaska Native Cancer Data Misclassification and Regional Differences in Incidence and Mortality

18 Espey, David K; Wo, Xiao-Chen; Swan Judith; Wiggins, Charles; Jim, Melissa A.; Ward, Elizabeth; Howe, Holly L.; Ries, Lynn A.G.; Miler, Barry A.; Jemal, Ahmedin; Ahmed, Faruque; Cobb, Nathaniel; Kaur, Judith S.; and Edwards, Brenda K. Annual 35Report to the Nation on the Status of Cancer, , Featuring Cancer in American Indians and Alaska Natives. Cancer [American Cancer Society]: 2007 [ ]; Volume 110: No. 10. GRAPH MODIFIED BY Rick Clark, Native American Cancer Research Espey, David K; Wo, Xiao-Chen; Swan Judith; Wiggins, Charles; Jim, Melissa A.; Ward, Elizabeth; Howe, Holly L.; Ries, Lynn A.G.; Miler, Barry A.; Jemal, Ahmedin; Ahmed, Faruque; Cobb, Nathaniel; Kaur, Judith S.; and Edwards, Brenda K. Annual Report to the Nation on the Status of Cancer, , Featuring Cancer in American Indians and Alaska Natives. Cancer [American 36 Cancer Society]: 2007 [ ]; Volume 110: No. 10. GRAPH MODIFIED BY Rick Clark, Native American Cancer Research 18

19 Espey, David K; Wo, Xiao-Chen; Swan Judith; Wiggins, Charles; Jim, Melissa A.; Ward, Elizabeth; Howe, Holly L.; Ries, Lynn A.G.; Miler, Barry A.; Jemal, Ahmedin; Ahmed, Faruque; Cobb, Nathaniel; Kaur, Judith S.; and Edwards, Brenda K. Annual Report to the Nation on the Status of Cancer, , Featuring Cancer in American Indians and Alaska Natives. Cancer [American 37 Cancer Society]: 2007 [ ]; Volume 110: No. 10. GRAPH MODIFIED BY Rick Clark, Native American Cancer Research Espey, David K; Wo, Xiao-Chen; Swan Judith; Wiggins, Charles; Jim, Melissa A.; Ward, Elizabeth; Howe, Holly L.; Ries, Lynn A.G.; Miler, Barry A.; Jemal, Ahmedin; Ahmed, Faruque; Cobb, Nathaniel; Kaur, Judith S.; and Edwards, Brenda K. Annual Report to the Nation on the Status of Cancer, , Featuring Cancer in American Indians and Alaska Natives. Cancer [American 38 Cancer Society]: 2007 [ ]; Volume 110: No. 10. GRAPH MODIFIED BY Rick Clark, Native American Cancer Research 19

20 Espey, David K; Wo, Xiao-Chen; Swan Judith; Wiggins, Charles; Jim, Melissa A.; Ward, Elizabeth; Howe, Holly L.; Ries, Lynn A.G.; Miler, Barry A.; Jemal, Ahmedin; Ahmed, Faruque; Cobb, Nathaniel; Kaur, Judith S.; and Edwards, Brenda K. Annual Report to the Nation on the Status of Cancer, , Featuring Cancer in American Indians and Alaska Natives. Cancer [American 39 Cancer Society]: 2007 [ ]; Volume 110: No. 10. GRAPH MODIFIED BY Rick Clark, Native American Cancer Research Espey, David K; Wo, Xiao-Chen; Swan Judith; Wiggins, Charles; Jim, Melissa A.; Ward, Elizabeth; Howe, Holly L.; Ries, Lynn A.G.; Miler, Barry A.; Jemal, Ahmedin; Ahmed, Faruque; Cobb, Nathaniel; Kaur, Judith S.; and Edwards, Brenda K. Annual Report to the Nation on the Status of Cancer, , Featuring Cancer in American Indians and Alaska Natives. Cancer [American 40 Cancer Society]: 2007 [ ]; Volume 110: No. 10. GRAPH MODIFIED BY Rick Clark, Native American Cancer Research 20

21 Espey, David K; Wo, Xiao-Chen; Swan Judith; Wiggins, Charles; Jim, Melissa A.; Ward, Elizabeth; Howe, Holly L.; Ries, Lynn A.G.; Miler, Barry A.; Jemal, Ahmedin; Ahmed, Faruque; Cobb, Nathaniel; Kaur, Judith S.; and Edwards, Brenda K. Annual Report to the Nation on the Status of Cancer, , Featuring Cancer in American Indians and Alaska Natives. Cancer [American 41 Cancer Society]: 2007 [ ]; Volume 110: No. 10. GRAPH MODIFIED BY Rick Clark, Native American Cancer Research Espey, David K; Wo, Xiao-Chen; Swan Judith; Wiggins, Charles; Jim, Melissa A.; Ward, Elizabeth; Howe, Holly L.; Ries, Lynn A.G.; Miler, Barry A.; Jemal, Ahmedin; Ahmed, Faruque; Cobb, Nathaniel; Kaur, Judith S.; and Edwards, Brenda K. Annual Report to the Nation on the Status of Cancer, , Featuring Cancer in American Indians and Alaska Natives. Cancer [American 42 Cancer Society]: 2007 [ ]; Volume 110: No. 10. GRAPH MODIFIED BY Rick Clark, Native American Cancer Research 21

22 Espey, David K; Wo, Xiao-Chen; Swan Judith; Wiggins, Charles; Jim, Melissa A.; Ward, Elizabeth; Howe, Holly L.; Ries, Lynn A.G.; Miler, Barry A.; Jemal, Ahmedin; Ahmed, Faruque; Cobb, Nathaniel; Kaur, Judith S.; and Edwards, Brenda K. Annual Report to the Nation on the Status of Cancer, , Featuring Cancer in American Indians and Alaska Natives. Cancer [American 43 Cancer Society]: 2007 [ ]; Volume 110: No. 10. GRAPH MODIFIED BY Rick Clark, Native American Cancer Research IHS Cancer Mortality Note cancers other than breast, cervix, colon, lung and prostate This is why AIAN comprehensive cancer plans cannot be limited to only those sites! American Indian Alaska Native Cancer Data Misclassification and Regional Differences in Incidence and Mortality

23 Haverkamp D, Espey D, Paisano R, Cobb N., Cancer Mortality among AIAN: Regional Differences, , IHS, Rockville, MD Haverkamp D, Espey D, Paisano R, Cobb N. Cancer Mortality Among American Indians and Alaska Natives: Regional Differences, Indian Health Service, Rockville, MD, February GRAPHS MODIFIED BY: Rick Clark, Native American Cancer Research (note horizontal grid) 23

24 Haverkamp D, Espey D, Paisano R, Cobb N. Cancer Mortality Among American Indians and Alaska Natives: Regional Differences, Indian Health Service, Rockville, MD, February GRAPHS MODIFIED BY: Rick Clark, Native American Cancer Research (note horizontal grid) 48 Haverkamp D, Espey D, Paisano R, Cobb N. Cancer Mortality Among American Indians and Alaska Natives: Regional Differences, Indian Health Service, Rockville, MD, February GRAPHS MODIFIED BY: Rick Clark, Native American Cancer Research (note horizontal grid) 24

25 Haverkamp D, Espey D, Paisano R, Cobb N. Cancer Mortality Among American Indians and Alaska Natives: Regional Differences, Indian Health Service, Rockville, MD, February GRAPHS MODIFIED BY: Rick Clark, Native American Cancer Research (note horizontal grid) 50 Haverkamp D, Espey D, Paisano R, Cobb N. Cancer Mortality Among American Indians and Alaska Natives: Regional Differences, Indian Health Service, Rockville, MD, February GRAPHS MODIFIED BY: Rick Clark, Native American Cancer Research (note horizontal grid) 25

26 What is Native American Cancer Education for Survivors? Web-based FREE!! Quality of life survivorship education Designed for breast cancer patients quality of life how well you are able to do everything you want to do: physically, mentally, emotionally, and spiritually But has information relevant to patients who have other types of cancer Includes both genders Tailored to the individual 51 What is Native American Cancer Education for Survivors? Resource for those needing information Research study Culturally specific Inter-tribal Uses the Medicine Wheel and Circle of Life

27 Layout of the Quality of Life Tree Information

28 Native Patient Advocates Available by toll free phone ( ) to help patients obtain the information on the web site (e.g., uncomfortable or don t know how to use the web, prefer to talk with live person) 55 NACES Data 318 surveys (taken offline June 2 nd for updates/refinements until July 1 st ) Most implemented with a Native Advocate Question: How much of an impact does the Native Advocate have on data collection? Most of the surveys are from OK and AZ = two dynamic Advocates

29 Overall, do you feel you are able to do everything you want to do on a daily basis? I am never able to do everything I want to do I'm not able to do most things I want to do I am able to do most things I want to do I am able to do everything I want to do Phys 7.7% 27.5% 41.8% 23.1% Spirit 4.1% 8.2% 38.4% 49.3% Soc 4.3% 21.5% 34.4% 39.8% Ment Ext poor 2.2% Poor 7.5% Okay 43% Good 36.6% Excellent 10.8% 57 Characteristics Diagnosed with breast cancer 34% - not diagnosed (family members) 6.4% - diagnosed with last year 14.9% - diagnosed between 1-4 years ago 44.7% diagnosed more than 5 years ago

30 Challenges for AIAN Attaining Health Equality Characteristics Age = 2.2% = 1.1% = 9.8% = 32.6% = 41.3% = 8.7% = 1.1% = 3.3% 59 Characteristics Blood Quantum Full blood = 44.4% 75-99% = 12.2% 50-75% = 17.8% 25-49% = 11.1% Less than 25%=14.4%

31 Challenges for AIAN Attaining Health Equality Characteristics Education No education / schooling = 9.7% Grade school / elementary = 7.5% Middle / Junior high = 9.7% High School / GED = 24.7% Technical / Apprentice = 7.5% Some college = 24.7% College AA degree = 2.2% College BA, BS degree = 10.8% Masters, Doctorate or more= 3.2% 61 Characteristics Told by Health Provider You have Problem: High blood pressure = 45.6% Diabetes =45.6% Arthritis / Rheumatism = 30% Obesity = 33.3% Thyroid = 21.1% Habitual Tobacco Use = 26.2% (not to be confused with ceremonial use)

32 Challenges for AIAN Attaining Health Equality Characteristics Close blood relative (parent, sibling, children) diagnosed with cancer = 81.6% How many close blood relative(s) have / had cancer: 1 relative =32.1% 2 relatives = 21.4% 3 relatives = 16.7% 4 relatives= 7.1% 5 or more relatives = 9.5% Of these blood relatives with cancer 42.4% of the relatives had BREAST cancer 70% diagnosed younger than age Characteristics How far from your home (one way) did you travel for cancer treatment 0-25 miles = 16.7% miles = 11.7% miles = 8.3% miles =16.7% miles = 20% miles = 15% miles = 11.7%

33 Characteristics Where do you live? On the reservation = 38.9% In a rural setting, but not on reservation = 18.9% In a city, town, village = 26.3% I move back & forth among city, rez, rural = 15.8% 65 New Symptoms since Diagnosis Symptoms Fatigue Pain Memory Problems Insomnia Yes No Body aches = 35.9% Changes in concentration = 6.6% (4.4& of overall total unable to concentrate at all) Feeling Moody = 22.8% Feeling depressed = 21.7%

34 Symptoms Today Symptoms Fatigue Pain Concentration Neuropathy Not a problem Few days a month Once a week /4 Few days a week Every day To what degree do you feel non-native providers control your cancer? Level of Control Overall % Not at all 18.2 Little 8 Fair 18.2 Good 35.2 Completely

35 How useful do you feel? Overall% Not at all 14.3 A little useful 19.8 Useful 24.2 Very useful 24.2 Extremely useful Positive Changes from Having Cancer Overall% Not at all 2.3 A few good changes 6.8 Good changes 21.6 A lot of good changes 33.0 A great deal of positive changes

36 Feeling Isolated Since Diagnosis Overall% Very isolated/alone 7.8 Occasionally isolated/alone 18.9 Rarely isolated/alone 15.6 Feel okay (not isolated/alone) 35.6 Feel well supported and not isolated /alone To review the Pages, go to and click on tree Code Name Survey Tree Limb = survivor information on leaves Side bar: Video-vignettes Story Tellers Visitors Questions 36