Native American Cancer Research Corporation (501(c)(3) and
Native American Cancer Initiatives, Inc.

Native American Cancer Research was incorporated as a Native-owned and operative non-profit Corporation, i.e., 501(c)(3), November 1999. The goal of the NACR is to reduce Native American cancer incidence and mortality, and to increase survival from cancer among Native Americans. To accomplish this goal, NACR implements cancer primary prevention, secondary prevention, risk reduction, screening (early detection), education, training, research, diagnoses, control, treatment, support, quality of life, and / or studies of cancer among Native Americans. NACR projects and studies are primarily supported by federal agencies (e.g., the National Institutes of Health) and national organizations (e.g., the National Susan G. Komen Breast Cancer Foundation). Examples of Current Grants follow:

"National Native American Breast Cancer Survivors' Network" is supported by the National Susan G. Komen Breast Cancer Foundation [99-3091], the Department of Defense [DoD 98-225], and the California Community Foundation. The purposes of the Network are (1) to improve survival from breast cancer and the quality of life after diagnosis for Native American/First Nations breast cancer patients and their loved ones and (2) to develop a national database comprising accurate information from at least 500 Native American breast cancer survivors to enable analysis of both the patterns of disease (e.g., age at diagnosis) and patterns of care (e.g., ability to access state-of-the-art care).

"Genetic Education for Native Americans" (GENA) [NHGRI R25 HG01866] is supported by the Ethical, Legal, and Social Implications (ELSI) of the National Human Genome Research Institute (NHGRI) of the National Institutes of Health (NIH). The primary goal of this three-year study is to provide culturally competent education about genetic research and genetic testing to Native American college and university students. The secondary goal is to increase the number of mentoring opportunities available to Native American students in genetic counseling, education, research and other science opportunities or careers.

"Increasing Mammography for Urban American Indian Women" [NCI R25 CA77665] is supported by the National Cancer Institute (NCI) of the National Institutes of Health (NIH). The primary goal of this four-year grant is to determine whether a culturally-relevant intervention will increase adherence (i.e., annual re- screening) to mammography screening guidelines among a population of urban American Indian women. This project is implemented in the greater Denver metropolitan area.

"Native American Cancer Survivor Support Circles" is supported by the California Community Foundation. The purpose of this project is to give direct support to Native American cancer patients by providing assistance accessing quality care, providing a telephone support program, and providing culturally relevant survivor resources. The network also provides informational, emotional, and spiritual support for the loved ones of cancer patients. The support circles comprise 12 sessions which typically meet once each week. Three 12-week sessions are held each year. Each session of the Circle includes spiritual openings and closing, art and craft work, cancer-specific topic, patient sharing, personal spiritual / emotional healing contracts, and of course, healthy foods. Cancer-related topics, include, but are not limited to: (A) Overview of Cancer among Native Americans and Personal Reactions to Diagnosis / Treatment; (B) Foods and Dietary Concerns while Undergoing Cancer Treatment; (C) Chemotherapy; (D) During Care (e.g., Managing Home and Family, Daily Care); (E) Economic Issues (e.g., Legal, money, insurance, employment); (F) Follow-up Care for long-lasting side effects from treatment; (G) Traditional Indian Medicine, Spirituality and Healing; (H) Hormonal Therapy; (I) Sexuality and Intimacy; (O) Outlook on Life; (P) Emotional Purging; (R) Radiation; (S) Surgery.

"Native Women's Wellness through Awareness" is supported by the A.V. Hunter Trust Fund and provides culturally competent recruitment and follow-up of American Indian women for breast and cervical cancer screening, diagnostic, and follow-up care. NAWWA specifically focuses on women who are ineligible for the State breast and cervical cancer screening program (i.e., women who fall through the cracks).

"Colorado Cancer Women Initiative" is supported by the Colorado State Department of Health and is the State CDC-supported program for breast and cervical cancer screening. NACR collaborates with Denver Health Authority and Westwood Clinic for this project.

The Native American Cancer Initiatives (NACI) was incorporated May 1, 1998. The NACI Mission is to implement culturally competent Native American education, service and research initiatives which are designed to reduce cancer incidence and mortality, and improve quality and quantity of life after being diagnosed with cancer. To accomplish this mission, the goal is to provide support to Native organizations to implement cancer primary prevention, secondary prevention, risk reduction, screening (early detection), education, training, research, diagnoses, control, treatment, or study of cancer and cancer care among Native Americans.

NACI Projects include, but are not limited to:

NACI is a Project Team member of the "Strategies for Breast and Cervical Cancer Screening Among American Indian and Alaska Native Women". This project is designed to identify and describe successful strategies tribes and tribal organizations use to deliver breast and cervical cancer screening, referral, and follow-up services to American Indian and Alaska Native women. These services are delivered through the American Indian/Alaska Native Initiative of the Centers for Disease Control and Prevention's (CDC) National Breast and Cervical Cancer Early Detection Program (NBCCEDP). The main question that this project proposes to answer is: "What are successful strategies for delivering comprehensive breast and cervical cancer early detection services to American Indian and Alaska Native women?"

NACI is subcontracted to the National Training Center (R.O.W. Sciences) to provide technical assistance and training to the Tribal Programs funded through the CDC NBCCEDP. The purpose of these projects is to improve the cultural relevance and competence of outreach and quality care training workshops for American Indian and Alaska Native Communities.

NACI is a partner on "The Native CIRCLE" (P.I. Judith Kaur, MD), Mayo Clinic, Rochester, MN. The Native CIRCLE is funded by the National Cancer Institute. The purpose of this program is to collect, review and disseminate culturally relevant Native American cancer resources to be established in a national central distribution setting at Mayo Clinic, Rochester, MN. The CIRCLE functions as a National Clearinghouse for culturally relevant information and resources for communities and professionals developing, implementing and evaluating cancer prevention, control and care programs with Native communities.

NACI is a partner on "Clinical Trials Education for Colorado Providers" (P.I. Linda U. Krebs, PhD), also funded by the National Cancer Institute. The overall goals of this project are: (1) to increase provider referrals of women and minorities into cancer care trials; (2) to provide educational materials that promote cultural competence to assist health care providers in these referrals. The primary purpose of this project is to educate providers in the greater Colorado in order to meet these goals. This project is based on the National Cancer Institute's (NCI) Cancer Control Training Education Program (CCTEP) designed to educate providers and consumers about cancer care trials. "Cancer Care Trials" (CCT) includes screening, prevention, treatment, and supportive care cancer trials.

NACI is a subcontract on "The American Indian Alaska Native Cancer Initiative" (P.I. Judith Kaur, MD), Mayo Clinic, Rochester, MN. This project addresses comprehensive tribal cancer control through partnerships with the Network for Cancer Control Research among American Indian and Alaska Native Populations, tribes, multiple cancer centers, Cancer Information Services (CIS) and the American Cancer Society (ACS). This will assist tribes to (1) increase community awareness and understanding about cancer; (2) provide training in cancer control research for AI/AN researchers, and (3) improve Native community channels to NCI so that research can be specifically focused on issues that affect Native people.

NACI is a subcontract on the American Cancer Society's "Circle of Life" Revisions. This project includes a review of literature and tribally-based focus groups on the cultural aspects of cancer recruitment and continued participation in breast health. Publications, print and refined Native-specific video will be among the deliverable. The video will highlight self-breast examination, clinical breast examination, mammography, stereotactic mammography, MRI, and ultrasound techniques.

NACI is a subcontract to the University of Colorado Native Elder Health Center (P.I. is Spero Manson, Ph.D., on the development of a video featuring Drs. Walt Hollow, Judith Kaur, Nat Cobb and Linda B on "Cancer among Elder Native Americans." The intended audience for the video is health care providers working within Indian Country.

NACI also continues to develop Native American Cancer Survivor Support Resources (e.g., Native-specific print and video). This has been supported by the Avon Breast Health Leadership Award, The Breast Cancer Fund, the Graham Foundation, The Kettering Foundation, Paul's Big Screen T.V.'s, and the National Susan G. Komen Breast Cancer Foundation.

These resources are provided to Native cancer patients and their loved ones free of charge (join the "service users" within the Survivor's Network). Sorry, but we are insufficiently funded to provide copies to other organizations. The Native CIRCLE does however, provide some sample copies of our materials to other programs free-of-charge (1-877-372-1617) ------------------------------------------------------------------------------------------------------------------------------- Examples NACR Research Caveats:

1. The community must directly benefit from participating in community-based research ("benefit" includes some type of service or education intervention ... it goes beyond taking part in a survey")
2. Indigenous Research needs to address the community's health priorities in a culturally respectful manner, while at the same time address health research priorities of the funding agency.
3. Applied research in the community must be culturally respectful and invariably will include modifications that differ from academic theory.
4. Every project will have challenges, some anticipated and some totally unexpected.
5. Members of the community-based "team" need to be included in leadership roles in every step of the research project, including the planning phase through dissemination (e.g., publications).