rebecca cowens-alvarado, mph director of cancer strategy, principal investigator

Rebecca Cowens-Alvarado, MPH

Director of Cancer Strategy, Principal Investigator

Octavia Vogel, MPHProgram Coordinator

Circle of Life Initiative

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)

American Cancer Society Mission

• 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

Every day, The American Cancer Society saves lives. Together, we are helping people:

A Few FactsFounded in 1913 as the American Society for the Control of Cancer (ASCC)

Reorganized in 1945 the American Cancer Society

Nationwide

Volunteer-driven

Hope Lodge

Business Support

ACS Leadership Roles

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

• Information• Research

• Quality of Life• Prevention & Detection

AdvocacyAdvocacy DisparitiesDisparities

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

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

Circle Of

Life

Circle of Life – ACS

National Level

• Circle of Life Advisory Group

• Native American Cancer Research

• AI/AN Leadership Initiative on Cancer (Spirit of Eagles and Native Circle)

• Indian Health Service

State / Division 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

•Community Health Orgs.

•Tribal Councils Community Presence

Division Configurations

Diversity

Marketing

Advocacy(ACS Cancer

ActionNetwork)

VoluntarismCorporate

Communications

Disparities

Research

Income Development

Health Promotions

CIRCLE OF LIFE

Circle Of

Life

Circle Of

Life

*NHO – National Home Office

Internal Collaborations at NHO*

• Grants• Cancer Control

Science• Epidemiology• Behavioral Research• Statistics &

Evaluation Center

• Strategy Development

• Comprehensive Cancer Control

• Program Delivery & Evaluation

• Hope Lodges• Content – Web-

based, brochures, etc.

• Books & Journals• National Cancer

Information Center

Indian Health

Services

AmericanCancerSociety

Divisions

AmericanCancerSocietyLocal

Offices

TribalConsortiums

TribesRepresented

ByAdvisory

Group

InterculturalCancerCouncil

Tribal CCCPrograms

CentersFor Disease

Control &Prevention

AI/ANLeadershipInitiative on

Cancer

NativeAmerican

CancerResearch

AmericanCancerSocietyNHO*

CIRCLE OF LIFE

Circle Of

Life

Circle Of

Life

External Collaborations – Beyond NHO*

*NHO – National Home Office

Circle of Life Goal

The goal of Circle of Life is to decrease cancer mortality and

improve the quality of life of AIAN populations.

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.

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)

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

Background and Need


Cancer Data for AIANs


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

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

Cancer Incidence in AIAN Men


Haverkamp D, Espey D, Paisano R, Cobb N., Cancer Mortality among AIAN: RegionalDifferences, 1999-2003, IHS, Rockville, MD 2008

Cancer Mortality Rates in Men & Women


Racism/PovertyPost Traumatic

Stress DisordersBoarding Schools

Addiction

Depression

Children never parented so never learned to parent

Neglect/Abuse of Children

“Inadequate Mirroring”

Unresolved GriefCoping:

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

Culture-wide Multiple Traumas


Example: distrust = avoid Western medicine

What are specific examples related to cancer?

Cancer clinical trials (especially treatment trials)

Cancer genetic studies

How May Historical Trauma Affect AIANs Use of the Healthcare System?


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

Cancer Disparities


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

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





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



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

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



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



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).

1991

2000

2001

Circle of Life program launched in Oklahoma

Educational materials developed

Train the trainer focused on BSE

ACS reviews program

Program emphasis shifted toward mammography

Funding to support tribal Breast Cancer Screening Programs supports emphasis of mammography promotion and outreach

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

2008

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

2009

Advisory Group members convene in Atlanta (January) to discuss program status and identify program areas to be updated and revised

Circle of Life History

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

Recent Circle of Life Research

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

Potential Opportunities


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

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)


Formed AIAN Advisory Group

Held initial face-to-face Advisory Group meeting – January 7-8, 2009 in Atlanta

Year 01 Progress

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

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

Year 01 Next Steps

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

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


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

CDC Grant Objectives – Years 03 - 05

Thank You!

rebecca cowens-alvarado, mph director of cancer strategy, principal investigator

Documents

cancer prevention

risk of cancer

cancer screenings

cancer spirit of eagles

mphdirector of cancer

quality of life information

american society

aian community health