Native American Women

When you see a new trail, or follow a footprint you do not know, follow it to the point of knowing.

— Grandmother of Charles Eastman, Santee Sioux

The term “Native American” or “American Indian” encompasses many tribes of native peoples. In North Carolina alone, there are thirteen recognized tribes and organizations, including the Coharie, Eastern Band of Cherokees, Haliwa-Saponi, Lumbee, Meherrin Indian, Occaneechi Band of Saponi Nation, Sappony and Waccamaw Siouan. There are approximately 99,551 Native Americans in North Carolina, about one percent of the population (2000 U.S. Census). This number is probably underestimated. North Carolina is one of six states (excluding Alaska) with the highest populations of Native Americans.

Unfortunately, data on cancer in Native Americans is limited because not all Native American communities are part of cancer registries, and Native Americans are not always identified as such on health forms. Also, Native Americans have a low participation rate in any type of cancer clinical trials or research.

What is the risk of breast cancer for Native American women?
Cancer among Native Americans is becoming a growing concern. Within the last few generations, cancer has become the leading cause of death for Alaska Native women and is the second leading cause of death among American Indian women.

The good news is that Native American women have among the lowest incidence rates of breast cancer of the major ethnic groups. However, their survival rates from breast cancer are among the lowest of all ethnic groups. For all cancers, Native American women are much less likely to survive than white women.

What special challenges do Native American women face?
A lack of access to health care often causes breast cancer detection to come late for Native American women, leading to their relatively poor survival rate. Native Americans are second only to Hispanics in lacking health insurance, and have shortages of healthcare professionals in many communities. Also, Native Americans are among the poorest ethnic groups in the United States.

The Indian Health Service (IHS) was established to provide federally-funded health care for Native Americans. However, access to health care is determined by place of residence and degree of Indian blood or tribal enrollment. Native Americans are not recognized, served or counted as Native Americans by the federal government unless they fall within certain definitions. In North Carolina, only one tribe, the Eastern Band of Cherokee, is eligible for federal Indian Health Services.

Sometimes, Native American women do not have medical care close by. Even when Native American women qualify for federal Indian health care, mammography is relatively new to most IHS health programs. Some IHS facilities do not have mammography equipment, so women have to be referred elsewhere, and follow-up may be nonexistent. Native American women who desire a mammogram often go without for these and other reasons.
Many Native Americans do not have a primary healthcare provider they see for preventive health services or medical care.

Culturally, a variety of beliefs exists on how Native Americans might perceive the issue of cancer in their lives. Healthcare providers working with a Native American woman with cancer and her family members may be unaware of cultural differences in communication styles and ways of discussing disease.

For example, some people in the Native American communities feel that ill health is part of the normal aging process. American Indians may be less likely than others to seek out care for problems that can be treated.

What Can Native American Women Do?

• You may choose to have traditional beliefs and practices as part of your total care. If you are practicing traditional medicine in conjunction with your doctor’s care, let your doctor know so that your medical care can be coordinated. Some traditional Native American therapies may have effects on some breast cancer medications and treatments.
• If you are age 40 or above, get regular mammograms and breast exams (talk to your healthcare provider about how often). Spread the word to women you know to do the same.
• If you have been diagnosed with breast cancer, think about seeking treatment from one of the three Comprehensive Cancer Centers in North Carolina or from another large cancer center. See our listing of North Carolina Hospitals and Cancer Centers).
• If you need help paying for mammograms or treatment, see Financial and Other Assistance on page 127. Check your eligibility for IHS services. If you do not qualify for or are not near an IHS facility, check your local health department or community health clinic for low-cost mammography and breast exams.
• Be an advocate for your health care. If you have been diagnosed with breast cancer, become informed about your diagnosis, treatment, and long-term follow-up care. Participate in making decisions about your care. Use this Resource Directory to help you learn more about your options and to find additional resources for more information.
• Communicate as much and as openly as possible with your health care providers. If you are not comfortable talking openly with a provider, look for another provider whom you can trust.
• Think about joining a Native American breast cancer advocacy organization (See Resources).

RESOURCES

Organizations

Center for American Indian Research and Education
510.843.8661
Publishes the American Indian Women’s Breast
Cancer Resource Directory. Geared for Californians, but helpful for women in other states.

Intercultural Cancer Council
713.798.4617
http://iccnetwork.org
Supports research to eliminate the unequal burden of cancer among racial and ethnic minorities and medically underserved populations in the United States. Offers fact sheets about Native Americans and cancer.

Native American Cancer Research (NACR)
303.838.9359 or 800.537.8295 (Survivors’ Network)
http://natamcancer.org
NACR is a community based, Native American, non-profit resource that has educational materials about breast cancer, breast health and clinical trials in Native Americans, including videos of Native American breast cancer survivors tallking about diagnosis, treatment and recovery. Hosts the Native American Cancer Survivors Network at http://natamcancer.org/community.html.

Native C.I.R.C.L.E.: The American Indian/Alaska Native Cancer Information Resource Center and Learning Exchange
877.372.1617
www.mayo.edu/nativecircle
A resource center providing cancer-related materials to healthcare professionals and the public. Has free brochures on cancer and breast cancer for Native Americans.

Office of Minority Health Resource Center
800.444.6472
www.omhrc.gov
Call the toll-free number to order the free “Breast Cancer Resource Guide for Minority Women.” Also available online at www.omhrc.gov/omhrc/publications/bcrg2005.pdf.

Books and More

The Acorn Gathering: Writers Uniting Against Cancer, by Jan and Shawna Chandler, Huda Orfali, Duane Simolke, Timothy Morris Taylor and Bill Wetzel (2002). Native Americans, Hispanics, African Americans, and gays write essays of the fight against cancer, prejudice and hate.

“Stories of My Sisters: Interviews with Alaska Native Breast Cancer Survivors” (1996). This free video features interviews with a number of Alaska Native breast cancer survivors, discussing diagnosis, screening, support and survivorship. Contact Native C.I.R.C.L.E., 877.372.1617 or www.mayo.edu/nativecircle.

Through the Looking Glass: Breast Cancer Stories Told by Northern Native Women, by Lorelei Anne Lambert Colomeda (1996). A book about breast cancer and the health of Native Americans. Describes the complexity of health, environment, spirituality and survival of Native American women.

Web Sites

Clinical Trials Education for Native Americans
www.clinicaltrialseducation.org/natcurriculum.htm
Site has online lessons about clinical trials for Native Americans.

Medline Plus: Native American Health
www.nlm.nih.gov/medlineplus/nativeamericanhealth.html
Covers news, nutrition, screening, research, organizations, statistics and other issues specific to Native Americans.

Native American Healing,
from the American Cancer Society
www.cancer.org
From home page, enter “Native American Healing” in the Search box at upper right and click, “Go.” This complementary/alternative therapy page describes Native American healing and how it can benefit as complementary therapy for cancer.

North Carolina American Indian Breast Health Survey
emr.unc.edu/native.html
This project of the Carolina Mammography Registry aims to get an understanding of breast health in North Carolina’s American Indian women. If you are 40 years of age or older, see the website to complete the survey.

North Carolina Commission of Indian Affairs
www.doa.state.nc.us/doa/cia/indian.htm
Has links to information and resources for Native Americans in North Carolina. Lists the thirteen recognized tribes and organizations in North Carolina.

Triangle Native American Society
www.tnasweb.org
Includes links to Native American organizations and resources across North Carolina.