Rebecca Cowens-Alvarado, MPH Director of Cancer Strategy, Principal Investigator

1. Circle of Life Initiative Rebecca Cowens-Alvarado, MPH Director of Cancer Strategy, Principal Investigator Octavia Vogel, MPH Program Coordinator

2. Objectives • Introduce the American Cancer Society • Introduce Circle of Life Initiative • Review impact of historical events on AIAN health care beliefs and access • Review background and need • Review Year 01 (2008-09) objectives and progress to date • Review potential objectives for Years 02-05 (2009-2013)

3. American Cancer Society Mission Every day, The American Cancer Society saves lives. Together, we are helping people: • Live Well: We educate an empower people to reduce their risk of cancer. • Get Well: We help patients and their loved ones make decisions and overcome obstacles in their personal fight • Find Cures: We invest in research that yields groundbreaking discoveries into cancer’s causes and cures • Fight Back: We help pass laws that fight cancer and keep families healthy

4. A Few Facts • Founded in 1913 as the American Society for the Control of Cancer (ASCC) • Reorganized in 1945 the American Cancer Society • Nationwide • Volunteer-driven

5. Circle of Life – An Ideal Fit • 2015 Nationwide Challenge Goals • 50% Reduction in Age-Adjusted Cancer Mortality Rates • 25% Reduction in Age-adjusted Cancer Incidence Rates • Measurable Improvement in Quality of Life ACS Leadership Roles • ACS Leadership Roles • Information • Research • Quality of Life • Prevention & Detection Business Support Disparities Advocacy Hope Lodge • Disparities Goals • Increase trust, credibility in target populations • Ensure effective practices through strategic guidance & resources • Strengthen capacity in diverse communities • Diversify volunteer, staff, leadership & donor base Circle Of Life

6. Circle of Life – ACS • Circle of Life Advisory Group • Native American Cancer Research • AI/AN Leadership Initiative on Cancer (Spirit of Eagles and Native Circle) • Indian Health Service National Level • State and Tribal Comprehensive Cancer Control Plans • Various Tribal Consortiums, such as: • Alaska Native Tribal Health Consortium • South Puget Intertribal Planning Agency • Northwest Tribal Cancer & Diabetes Project • Inter-Tribal Council of Michigan • Northeastern Inter-Tribal Council State / Division Level • Community Health Orgs. • Tribal Councils Community Presence

7. Division Configurations

8. Internal Collaborations at NHO* • Strategy Development • Comprehensive Cancer Control • Program Delivery & Evaluation • Hope Lodges • Content – Web-based, brochures, etc. • Books & Journals • National Cancer Information Center • Grants • Cancer Control Science • Epidemiology • Behavioral Research • Statistics & Evaluation Center

9. External Collaborations – Beyond NHO* *NHO – National Home Office

10. Circle of Life Goal The goal of Circle of Life is to decrease cancer mortality and improve the quality of life of AIAN populations.

11. Circle of Life Objectives Utilize existing and develop new resources to train AIAN community health workers and volunteers to educate community members on: • the importance of yearly mammography and other cancer screenings; • the link between maintaining a healthy diet and staying physically active to reduce the risk of cancer and other chronic diseases; • the Society’s Cancer Resource Network (CRN) which connects constituents to cancer prevention, detection, and quality of life information and resources.

12. Background and Need • There are more than 500 federally recognized American Indian/ Alaska Native (AIAN) tribes in the U.S. • These tribes speak more than 217 different languages, live on more than 300 reservations located in 33 states • AIAN populations live in all 50 states, thus making it difficult to provide acceptable and adequate health care services Source: Native American Cancer Research, 2008 (http://www.natamcancer.org)

13. Background and Need • Over the last 30 years, cancer has become the third leading cause of death among all AIAN’s • Among AIAN 45 years and older cancer is the second leading cause of death • Breast cancer is the first leading cause of death among Alaska Native women and the second leading cause of death among American Indian women Source: Native American Cancer Research, 2008 (http://www.natamcancer.org)

14. Cancer Data for AIANs Source: Native American Cancer Research, 2008 (http://www.natamcancer.org)

15. Cancer Incidence in AIAN Women 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, 1975-2004, Featuring Cancer in American Indians and Alaska Natives. Cancer [American Cancer Society]: 2007 [11-15-07]; Volume 110: No. 10. GRAPH MODIFIED BY Rick Clark, Native American Cancer Research Source: Native American Cancer Research, 2008 (http://www.natamcancer.org)

16. Cancer Incidence in AIAN Men 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, 1975-2004, Featuring Cancer in American Indians and Alaska Natives. Cancer [American Cancer Society]: 2007 [11-15-07]; Volume 110: No. 10. GRAPH MODIFIED BY Rick Clark, Native American Cancer Research Source: Native American Cancer Research, 2008 (http://www.natamcancer.org)

17. Cancer Mortality Rates in Men & Women Haverkamp D, Espey D, Paisano R, Cobb N., Cancer Mortality among AIAN: Regional Differences, 1999-2003, IHS, Rockville, MD 2008 Source: Native American Cancer Research, 2008 (http://www.natamcancer.org)

18. Culture-wide Multiple Traumas Post Traumatic Stress Disorders Boarding Schools Racism/Poverty Addiction Neglect/Abuse of Children “Inadequate Mirroring” Children never parented so never learned to parent Depression Coping: Unhealthy Behaviors Unresolved Grief Long histories of subjugation, historical trauma, unresolved grief and the challenges of changing cultures, poor economics, and lack of opportunities are negative and destructive Source: Native American Cancer Research, 2008 (http://www.natamcancer.org)

19. 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 Source: Native American Cancer Research, 2008 (http://www.natamcancer.org)

20. Cancer Disparities • The rate of cancer incidence among AIAN is about half that of whites, but the mortality rate for cancer is 70% of whites • AIAN have the lowest survival rate from all cancers combined compared to all other racial/ethnic groups Source: Native American Cancer Research, 2008 (http://www.natamcancer.org)

21. Barriers to Cancer Care • Cancer services not being delivered as a continuum of care • Lack of prevention, screening, follow-up, adequate training, timely initiation of treatment, end-of-life care • Cancer service providers allowing racism and other biases to affect their job performance • Community’s distrust of cancer prevention and early detection services when received from those not within their own community • Cultural, religious and traditional tribal beliefs that are not always compatible with evidence-based or best-available medical practices Source: Native American Cancer Research, 2008 (http://www.natamcancer.org)

22. Barriers to Cancer Care Cost • lack of or under-insured • lack of ability to take time off work Physical • geographic isolation • lack of transportation • inconvenient hours of clinical services • frailty or physical disability Source: Native American Cancer Research, 2008 (http://www.natamcancer.org)

23. Barriers to Cancer Care • Competing life demands • Lack of awareness or ability to derive benefit from available services (due to language differences, low literacy, or impairments). • The need for social support -- defined as emotional, informational, appraisal, and instrumental support • Lack of clear communication about differing understandings of health and disease between patient and provider Source: Native American Cancer Research, 2008 (http://www.natamcancer.org)

24. Barriers to Cancer Care • Fear • Lack of language, education and acculturation • Perceived racial, economic and gender bias • Lack of having a regular doctor • Lack of cultural competence on the part of healthcare providers Source: Native American Cancer Research, 2008 (http://www.natamcancer.org)

25. Administrative Barriers • Access to care, including screening services and referral to quality treatment • Funding for services • Staff Turnover and/or Lack of Qualified Native Staff to carry out grant(s) • Reservations not supporting enrolled tribal members who live in urban areas; and/or Tribal Jealousy Source: Native American Cancer Research, 2008 (http://www.natamcancer.org)

26. Administrative Barriers • Lack of support for treating state-recognized; non-US-federally recognized tribal members • Patients who are Canadian Aboriginals and need BCC programs • Long Travel Distances to cancer treatment • IHS interference with urban Indian clinics operations Source: Native American Cancer Research, 2008 (http://www.natamcancer.org)

27. Administrative Barriers • Leadership issues in Indian health programs including needing to prioritize tribal funds • Title V relevant to NBCCEP • Small numbers living in diverse regions • Providing services to AIAN homeless people or medically underserved Natives who have been treated poorly in the past and refuse to return to healthcare system • Dealing with Natives who refuse western medicine and solely rely on traditional Indian medicine (Indians who seek help from bogus self-proclaimed, Spiritual Healers). Source: Native American Cancer Research, 2008 (http://www.natamcancer.org)

28. 2009 2008 • Advisory Group members convene in Atlanta (January) to discuss program status and identify program areas to be updated and revised 2001 • ACS received CDC grant (September) to revise and expand program • Divisions engaged (October / November) to identify external and internal experts to serve on Circle of Life Advisory Group 2000 • Program field tested in five communities • Updated training and program materials focus on mammography screening • ACS re-branded the Circle of Life to meet new corporate branding guidelines • This “update” marked the decline in the use of the program due to lack of culturally appropriate materials 1991 • ACS reviews program • Program emphasis shifted toward mammography • Funding to support tribal Breast Cancer Screening Programs supports emphasis of mammography promotion and outreach • Circle of Life program launched in Oklahoma • Educational materials developed • Train the trainer focused on BSE Circle of Life History

29. Recent Circle of Life Research • In 2007, the University of Oklahoma Health Sciences Center findings: • The continued relevance of Circle of Life • A need to revise the materials • A need to target the specific cultural values of the AIAN population • The need to improve the health care system interface

30. Potential Opportunities • Recommend existing resources that are evaluated and effective • Identify gaps in resources and partner with AIAN communities to develop tools and materials to address the gaps • Provide support and training opportunities for AIAN community • Strengthen and expand nation wide and local collaborations to help sustain the Circle of Life initiative and meet the ongoing needs of AIAN communities Source: Native American Cancer Research, 2008 (http://www.natamcancer.org)

31. CDC Grant Objectives – Year 01 • Convene a multi-tribal AIAN Advisory Group with nationwide representation • Seek guidance from the Advisory group to identify priorities for the Circle of Life • Identify and include existing resources that have been evaluated and are effective • Identify gaps in resources and develop new or enhance existing resources to meet the needs • Conduct “Talking Circles” to test new or revised materials

32. CDC Grant Objectives – Year 01 • Pilot train-the-trainer materials with Oklahoma tribes • Partner with a college or university in Oklahoma to hire an AI intern • Work with an Advisory Group member to mentor the intern • Conduct partnership assessment (intern project) • Ensure that AIAN collaborations are integrated with Society’s overarching priorities (e.g., access to care, addressing disparities)

33. Year 01 Progress • Formed AIAN Advisory Group • Held initial face-to-face Advisory Group meeting – January 7-8, 2009 in Atlanta • Turtle Mountain Chippewa • Cherokee Nation of OK • Cherokee Tribe of Kentucky • Fond du Lac Reservation • Santee • Omaha • Navajo-Ute • Assiniboine (Fort Belknap Res) • Santa Clara Pueblo • Santee Sioux • Nisqually Tribe • Seneca Nation of Indians (Irving Res) • Yankton Sioux • Comanche Nation • Poarch Creek Indians • Chippewa • Tolowa • Hopi • Yupik Eskimo (Cook Inlet Region, Inc.) • Pascua Yaqui • Gabrielino • Tongva

34. Year 01 Next Steps • Follow-up with the Spirit of Eagles and Native American Cancer Research along with input from the advisory group members to identify existing resources • Work with the advisory group members to identify gaps in resources and establish priorities for Year 01 development and testing • Develop detailed action plan to achieve Year 01 objectives • Hold monthly conference calls • Plan next face-to-face meeting • Plan for “talking circles” and training pilot

35. Tribes and Reservations represented by Advisory Group • Turtle Mountain Chippewa • Cherokee Nation of OK • Cherokee Tribe of Kentucky • Fond du Lac Reservation • Santee • Omaha • Navajo-Ute • Assiniboine (Fort Belknap Res) • Santa Clara Pueblo • Santee Sioux • Nisqually Tribe • Seneca Nation of Indians (Irving Res) • Yankton Sioux • Comanche Nation • Poarch Creek Indians • Chippewa • Tolowa • Hopi • Yupik Eskimo (Cook Inlet Region, Inc.) • Pascua Yaqui • Gabrielino • Tongva

36. CDC Grant Objectives – Year 02 • Engage additional partners • Conduct additional pilots with AIAN tribes around the US • Alaska Native • Southwestern • Northwestern • Midwestern • Northeastern tribes • Revise materials and trainings as necessary • Monitor the implementation of the initiative in Oklahoma and begin process evaluation

37. CDC Grant Objectives – Years 03 - 05 • Deliver regional trainings in partnership with CCC, NBCCEDP, IHS, and other identified partners • Provide technical assistance to Divisions and tribes interested in initiating a Circle of Life program • Continue to monitor and evaluation implementation and dissemination process • Conduct outcomes evaluation • Ensure sustainability of program

38. Thank You!