Inquiring Minds Want To Know Why American Indians/Alaska Natives (AI/ANs) Continue To Live With Cancer Disparities

Transcription

1 Inquiring Minds Want To Know Why American Indians/Alaska Natives (AI/ANs) Continue To Live With Cancer Disparities Note: Some slides will be skimmed during the presentation because Think Tank participants will have access to the slides (slides available on NACR s web page now under 9. survivorship : Linda Burhansstipanov, MSPH, DrPH (Cherokee Nation of Oklahoma) President Native American Cancer Initiatives, Incorporated (NACI) Founder, Native American Cancer Research Corporation (NACR) 3022 South Nova Road, Pine, CO

2 Summary/Take-home Messages 2

3 Summary in comparison with NHWs AI/ANs are poorer, younger, less educated AI/ANs have more risky behaviors / conditions (diabetes, obesity, smokers) Less likely to take part in cancer screening More likely to be diagnosed with late stage cancer (III and IV) than early (0, 1, 2) Burhansstipanov, Native American Cancer Research Corporation (NACR); ; 3

4 Summary in comparison with NHWs AI/AN s under-insured (i.e., IHS exemption; deductibles of $6,000) AI/AN unlikely to know HOW to use private health insurance Cultural NPNs can be solution to more than half of these issues Burhansstipanov, Native American Cancer Research Corporation (NACR); ; 4

5 Take-home Messages from AJPH 2014 AI/AN Cancer Data update The substantial progress in reducing cancer death rates experienced by Whites over the 2 decades was not shared by AIs; cancer mortality rates remained the same or more commonly were increased from previous data. For lung, CRC, and breast cancers, significant declines in death rates occurred in Whites, whereas the corresponding death rates for AIs remained unchanged or increased. Burhansstipanov, Native American Cancer Research Corporation (NACR) & Native 5

6 Take-home Messages from AJPH 2014 AI/AN Cancer Data update There are significant geographic regional differences for AI cancer incidence and mortality, whereas White rates remain fairly homogeneous nationwide. Thus, aggregated national AI data are misleading and inaccurate. There are substantial cancer disparities between AI and White populations living in the same regions (particularly for breast, cervix, colon and prostate cancers). Alaska Natives have excessive cancers for 8 of the 10 most common cancer sites. Burhansstipanov, Native American Cancer Research Corporation (NACR) & Native 6

7 Take-home Messages from AJPH 2014 AI/AN Cancer Data update In the 48 contiguous states AIs the Northern Plains have significantly elevated cancer incidence and/or mortality rates. In the Northern Plains, death rates for AI men were elevated compared with White men living in the same regions, for cancers of the lung, colon, rectum, prostate, and larynx. AI women in the Northern Plains also had significantly higher rates of lung, colorectal, and cervical cancers. Burhansstipanov, Native American Cancer Research Corporation (NACR) & Native 7

8 Take-home Messages from AJPH 2014 AI/AN Cancer Data update AIs are more likely to be diagnosed with cancer at a younger age and at more advanced stages in comparison to Whites who typically are diagnosed with early stage disease and are over the age of 60. NACES data documents almost ½ (48%) AIs diagnosed with cancer prior to age 50 i.e., cannot wait to begin cancer screening until 50 s Burhansstipanov, Native American Cancer Research Corporation (NACR) & Native 8

9 Inaccurate sources of AI/AN data American Cancer Society CDC (even though they partnered on the AJPH April 2014 data articles) Lance Armstrong Intercultural Cancer Council National Susan G. Komen for the Cure State data (except AZ and NM) NCI SEER data are constantly improving primarily due to Drs. Brenda Edwards, Judith Swan and Ken Chu; and Chuck Wiggins from NMTR Burhansstipanov, Native American Cancer Research Corporation (NACR) & Native 9

10 Brief Overview of Demographics and Risk Factors 10

11 Disparities / Inequities begin with daily living conditions AIAN US All Races Median Age Median Income household $35,062 $50,046 No Health insurance 29.2% 15.5% Living below Federal Poverty 28.4% 15.3% l_editions/cb11-ff22.html and and IHS.gov 2012 Burhansstipanov, Native American Cancer Research Corporation (NACR) & Native American Cancer Initiatives, Inc. (NACI); ; 11

12 Disparities / Inequities begin with daily living conditions High School Grad (or GED) AIAN US All Races 77% 86% Bachelor s degree+ 13% 28% Life expectancy (born in 2011) Own own home 72.6 yrs 77.8 yrs 54% 65% ff22.html and and IHS.gov 2012 Burhansstipanov, Native American Cancer Research Corporation (NACR) & Native American Cancer Initiatives, Inc. (NACI); ; 12

13 Daily behaviors that increase chronic disease risks In comparison to US All Races, AI/ANs more likely to: Be obese Use commercial tobacco Have diabetes Have high blood pressure Be physically inactive 13 Burhansstipanov, Native American Cancer Research Corporation (NACR) & Native 13

14 AI Cancer screening behaviors Significantly lower in comparison to overall US population 59% AIs cervical screening 45% breast screening 33% colorectal screening Leading to increased risk of late diagnosis and decreased survival from cancer Indian Health Service DHHS. (2012). Indian Health Service. IHS Fact Sheets. In: Burhansstipanov, Native American Cancer Research Corporation (NACR) & Native American Cancer Initiatives, Inc. (NACI); ; 14

15 Brief Overview of AI/AN Racial Misclassification

16 First documented misclassification of American Indians Thank you Chuck Wiggins, PhD, UNM SEER! Burhansstipanov, Native American Cancer Research Corporation (NACR) & Native 16

17 Most Common Reasons for Racial Misclassification 1. Use of Spanish surnames to determine race / ethnicity The Department of Finance Racial 2. Definition Subjective is based use of on personal Spanish observation surnames. by This the results data collector in statistically significant 3. under-counting AIAN not a response of AIANs. category in medical records (e.g., hospital, health clinic) 4. Tribe formerly unrecognized Burhansstipanov, Native American Cancer Research Corporation (NACR) & Native 17

18 Most Common Reasons for Racial Misclassification 5. Tribal enrollment blood % ordinances changing 6. Tribal enrollment ordinances re: Paternal or Maternal lineage Burhansstipanov, Native American Cancer Research Corporation (NACR) & Native 18

19 2010 IHS Expenditures Per Capita and Other Federal Health Care Expenditures Per Capita US Department of Health and Human Services, National Tribal Budget Formulation Burhansstipanov, Workgroup. Native American (2011). Cancer Research National Corporation tribal (NACR) budget & Native recommendation for the Indian American Health Cancer Service: Initiatives, Inc. Fiscal (NACI); year ; budget. Washington, DC: Author. 19

20 Brief overview of AI/AN regional cancer data AJPH online April 2014

21 NOTE: AK is as large as the 48 contiguous states States and CHSDA counties by IHS region CHSDA=Contract Health Services Delivery Areas Alaska Northern Plains Pacific Coast Hawaii South West Eastern State CHSDA county TX: The only good Indian Southern Plains is a dead Indian Espey et al, AJPH 2014; doi: /ajph

22 AI/AN and NHW death rates, all cancers combined, by region, males, Rate per 100,000 Region Thank you David: Espey et al, AJPH 2014; doi: /ajph

23 Rate per 100, Age-adjusted All Cancer Death Rates and JoinpointTrend Lines in CHSDA Counties, , Males AI/AN Rate AI/AN Trend NHW Rate NHW Trend Thank you David: Espey et al, AJPH 2014; doi: /ajph

24 AI/AN and NHW death rates, all cancers combined, by region, females, Rate per 100,000 Region Thank you David: Espey et al, AJPH 2014; doi: /ajph

25 Rate per 100, Age-adjusted All Cancer Death Rates and JoinpointTrend Lines in CHSDA Counties, , Females AI/AN Rate AI/AN Trend NHW Rate NHW Trend Thank you David: Espey et al, AJPH 2014; doi: /ajph

26 Mortality to Incidence Ratio (MIR) Indicator of survival that compares fatality between groups Calculated as the age-adjusted death rate divided by the age-adjusted incidence rate Thought to be more accurate than relative survival Easy to calculate from existing data (cancer registry and death certificate data) Not a widely used; few publications Thank you David: Espey et al, AJPH 2014; doi: /ajph

27 MIR for All Cancer Sites Combined by Region, for AI/AN compared with NHW, CHSDA counties, AI/AN NHW AI/AN: NHW RATIO Region MIR MIR Northern Plains * Alaska * Southern Plains * Southwest * Pacific Coast * East * Total * Thank you David: Espey et al, AJPH 2014; doi: /ajph

28 Mortality to Incidence Ratio (MIR) Potentially useful proxy for estimating cancer survival Consistently less favorable for AI/AN compared to NHW for nearly all cancers Disparities likely related to lower SES and lack of healthcare access AIANs consistently diagnosed at later stages particularly for screenable cancers Thank you David; Espey et al, AJPH 2014; doi: /ajph

29 Summary Overall cancer death rates increased significantly for AI/AN men and women from 1990 to 2009 Overall cancer death rates declined significantly for white men from 2002 to 2009 and white women from 2001 to 2009 Compared to whites, deaths for all cancers combined among AI/AN were significantly lower from 1990 to 1998 but significantly higher from 1999 to 2009 Thank you David: Espey et al, AJPH 2014; doi: /ajph

30 Native American Cancer Education for Survivors (NACES)

31 9.5 minute video summarizes July 2015 NACES findings Burhansstipanov, Native American Cancer Research Corporation (NACR) & Native 31

32 Key Collaborators Linda Burhansstipanov, MSPH, DrPH, Native American Cancer Research Corporation (NACR), Pine, CO Linda U. Krebs, PhD, RN, AOCN, FAAN, University of Colorado Anschutz Medical Campus, College of Nursing, Denver, CO Mark Dignan, PhD, University of Kentucky and Southeastern Program Evaluation, Lexington, KY Kate Jones, Southeastern Program Evaluation, Lexington, KY Judith Salmon Kaur, MD, Mayo Clinic s Native American Programs, Rochester, MN Burhansstipanov, Native American Cancer Research Corporation (NACR); ; 32

33 What is Native American Cancer Education for Survivors? Web-based, quality of life survivorship education Originally designed for breast cancer patients But has information relevant to patients who have other types of cancer Includes both genders FREE! Burhansstipanov, Native American Cancer Research Corporation (NACR); ; 33

34 Layout of the Quality of Life Tree Information Original 2003 Revised 2008 Follow-up added 2010 New items added items added 2013 (NIH Promis items) 175 items total Burhansstipanov, Native American Cancer Research Corporation (NACR); ; 34

35 NACES highlights ~800 daily visitors to website Approximately 1,200 completed surveys (909 from survivors) Majority from Northern and Southern Plains and Southwestern US ~50% High School or less education ~ 2/3 over 50 years old ~ 50% diagnosed prior to age 50 > 50% are full blood quantum Burhansstipanov, Native American Cancer Research Corporation (NACR); ; 35

36 NACES Demographics 79.9% (n=723) Female 41.2% (n=367) are 65 and older now (not at the time of dx) 37.2% (n=336) live in a city, town or village (33.1% (n=299) on Reservation) 36.8% (n=256) have difficulty getting into treatment 2/3 of the 909 are 5 or more years since diagnosis Burhansstipanov, Native American Cancer Research Corporation (NACR); ; 36

37 Almost none have access to culturally appropriate local cancer support NACR s 2008 Survivorship Conference, Denver, CO Annie Krause Williams (Yupik) dx Breast 1992 Burhansstipanov, Native American Cancer Research Corporation (NACR) & Native 37

38 1/3 have diabetes as well as cancer diagnoses It is so difficult to deal with the diabetes and the cancer pain. My blood sugar goes real high and then low when I have my chemo or pain medications LB thinks there are contraindications between chemo drugs (e.g., Adriamycin) and insulin (e.g., Metformin / Glucophag) [anecdotal data only] Burhansstipanov, Native American Cancer Research Corporation (NACR) & Native 38

39 Transportation 48.7% (n=349) travel more than 100 miles ONE WAY to access cancer care 47.4% (n=334) travel more than 2 hours one way Dilly traveled 4 hours one-way So I went through my treatment alone, and that was the hardest thing to do It would be very good if they have somebody there with them to help talk to the doctors especially. Burhansstipanov, Native American Cancer Research Corporation (NACR) & Native Dilly Adsuna [Alaska Native] Dx 2003 Breast 39

40 Only 12% of the 909 NACES AI/AN survivors were able to access cancer treatment through Indian Health Service I ve always had private insurance, because I don t trust some of the stuff that comes from IHS, and I didn t want to fall into contract care. Female breast survivors average 6 month delay from time of biopsy to initiation of cancer care; males = 9 mos. Burhansstipanov, Native American Cancer Research Corporation (NACR) & Native Doug Six Killers St. Clair [Cherokee / Shoshone] Dx 1990 Lymphoma 40

41 Decision Makers I m a little bit more traditional than a lot of other people, and I don t make the decisions that impact my life. I always look to the oldest female that s there, and the doctors were getting very, very frustrated with me, because I d always look to my mother, and they would tell my mother to leave the room. So we had a little pow wow with the doctors, and I told the doctors that they needed to talk to my mother, and then my mother would talk to me and then she would tell me and she would advise me. So we were able to educate the doctors a little bit to be a little bit more culturally appropriate. Doug Six Killers St. Clair [Cherokee / Shoshone] Dx 1990 Lymphoma Burhansstipanov, Native American Cancer Research Corporation (NACR) & Native 41

42 None had survivorship care plans and almost none had ever heard the phrase Need to Understand Cancer Before We Can Understand Treatments She told her husband about her cancer (as she understood it) but the husband didn t quite understand what cancer was all about. (translated by Mary P. Lovato, Santo Domingo Pueblo) Dominga Rosetta [Santo Domingo Pueblo] Dx 1991 Breast Burhansstipanov, Native American Cancer Research Corporation (NACR) & Native 42

43 Lack of Access to Quality Care At that time I thought I had excellent care, the best I could possibly get. When I look back in another time frame of how things happen and my family physician for example, I had complete faith in him, but two years ago I had to quit him. It turned out that he wasn't the best that I thought. There were little things that fell through the cracks. Rosanne Wyman [Mohawk] Dx 1987 Cervix Burhansstipanov, Native American Cancer Research Corporation (NACR) & Native 43

44 Well-Educated AIANs May Not Have Insurance I don't have money to pay the co-pay for my insurance CeCe is a lawyer CeCe Whitewolf [Confederated Tribes of Umatilla] Dx 1998 Breast Burhansstipanov, Native American Cancer Research Corporation (NACR) & Native 44

45 Long Delays to Access Care I saw him and he told me he wouldn t be available to do the needle biopsy until 4 weeks... I waited for 6 weeks. It was a very stressful 6 weeks. So the day of my surgery as I arrived they told me didn t anyone tell you, the surgery was cancelled. I broke down and cried because no one could tell me what was going on. I didn t ask and that was my problem. I want to tell women to ask. If they tell you to wait, go to another doctor. Arlene Wahwasuck [Prairie Band Potawatomi] Dx 2002 Breast Burhansstipanov, Native American Cancer Research Corporation (NACR) & Native 45

46 Less than 5% AIAN Patients Recall Ever Hearing the Phrase, Clinical Trial Providers need to DISCUSS clinical trials with patients Cannot assume that we will not be compliant We do need the hospital to pay for medications and transportation for us to participate Need variations in some protocols Maxine Brings Him Back Janis [Oglala Lakota] Dx 1978 Cervix Dx 2002 Breast Burhansstipanov, Native American Cancer Research Corporation (NACR) & Native 46

47 What do AIs say they want?

48 NACI AI Needs Assessments in CO, FL & GA AI stories Culturally specific and easy-to-understand cancer information Native Patient Navigators Access to culturally competent healthcare providers Access to screening (specifically to FL and GA State recognized tribes struggle to get on NBCCEDP programs; no access to CRC or prostate screenings) Burhansstipanov, Native American Cancer Research Corporation (NACR) & Native 48

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53 NACR produces 44 Fact Sheets or Gap Analysis Summaries Burhansstipanov, Native American Cancer Research Corporation (NACR) & Native 53

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57 Thank you for inviting me to share information about AI/ANs with you 57