CORTEZ, Colo. ? A cancer diagnosis is not a death sentence.
That's the message Dr. Linda Burhansstipanov wants to get out to Native American populations across the country. The public health specialist is director of Native American Cancer Research (NACR) in Pine, Colo.
After the death of a loved one from kidney cancer, Dr. Burhansstipanov, a noted health care researcher and Western Cherokee Indian, began looking at issues surrounding cancer in Indian country. She found that the disease was the third leading cause of death for American Indians and Alaska Natives, and that they had the poorest survival rates from cancer for any racial and ethnic group. Additionally, they lacked adequate health care and facilities, especially in remote areas. No social networks were available to provide emotional support and information to patients and their families.
Dr. Burhansstipanov wanted to change that. She turned from her work in women's health, general health education and issues of violence to cancer research in underserved Native communities. She has become an advocate of early cancer detection and treatment for American Indians.
In 1999, she left her position as director of the Native American Cancer Research Program in Denver, and started NACR, a non-profit organization. Its goal is to reduce cancer rates and increase survival among Indians by prevention, risk reduction, early detection and treatment. It means to increase awareness that with early detection and treatment, it's possible to survive cancer and go on to live a full, productive life.
"It's so important for survivors to speak out," Dr. Burhansstipanov said. "Family members and the Native community need to see and hear their stories."
That was the impetus for NACR's First Annual Survivors and Thrivers Conference held in November. Cancer survivors from as far away as northern Alaska gathered at the Scottsdale Plaza Resort Hotel in Scottsdale, Ariz., to share their experiences of survival and attend cancer education workshops that addressed the myths and misconceptions surrounding the disease.
The single thread that runs through all NACR programs is education for Indian cancer patients and their loved ones, and in some cases, their medical provider teams.
Early on, Dr. Burhansstipanov found that materials addressing issues of cancer treatment, support networks and pain in a culturally sensitive manner were woefully lacking. NACR produces informational booklets, videos and other teaching materials for Native cancer patients and others who are affected by the disease.
Cultural issues have a profound affect on cancer incidence and survival in Native peoples, said Dr. Burhannstipanov. Many Natives seek traditional treatment from within their communities before seeing a medical doctor. Effective treatment of pain is often hindered because of patients' fear or misunderstandings about procedures and medication.
Language may present other problems. Many elderly Natives, especially those living in remote regions, speak little or no English. Some cultures won't even use the word "cancer" for fear it will bring the disease upon them or their loved ones.
Practical matters can also interfere with effective treatment. Access to telephones or transportation is an issue in remote Native communities. In Alaska, medical providers are scarce in small villages. The shortage of diagnostic equipment and treatment centers requires individuals with cancer to travel great distances for chemotherapy or radiation treatment.
NACR sponsors a wide variety of national and local programs that address these problems and focus on education in Native American communities.
Genetic Education for Native Americans (GENA) is a national program in association with the National Human Genome Research Institute of the National Institute of Health. The primary goal of this three-year study is to provide culturally competent education about genetic research and genetic testing to Indian college and university students. It also seeks to increase the number of Native people who have access to scientific mentoring experiences in genetic counseling, education, research and associated career opportunities. The project is designed to reach two groups: Native American college students who are interested in learning more about genetics and cultural issues related to Native cultures, and scientists who are interested in providing mentoring opportunities and experiences to Indian college and graduate students.
The Native Women's Wellness through Awareness (NAWWA) program is a service and research project in Denver, Colo., that works to increase the number of urban Indian women who participate in breast cancer screening.
"When we first looked at this, we thought that about 38 percent of Indian women were being re-screened for breast cancer," said Dr. Burhansstipanov. "The average in the U.S. for all races is about 50 percent, and for white women it's much higher. But we found that only about 16 percent of Indian women were actually getting re-screened within 18 months of their previous mammogram."
NAWWA specifically focuses on women who are ineligible for the state breast and cervical cancer screening programs.