MASHANTUCKET, Conn. - With more than $400,000 in grants, three Connecticut tribes have launched intertwining projects to improve cancer education, resources and prevention among New England's American Indians.
The Mashantucket Pequot, Eastern Pequot and Schaghticoke tribes have received a grant for almost $100,000 from the Lance Armstrong Foundation for a two-year project called ''Families Together: The Connecticut Native American Cancer Survivorship Project,'' and $322,000 from the National Cancer Institute and Cancer Information Service for a two-year project called ''Is CIS Reaching Connecticut Native Americans? Understanding Cancer Information Seeking Patterns.''
''Right now, our goal is to have all the tribes in southern New England work together; but our long-term goal is to expand up through all of northern New England, and our plan is to service all of the federally recognized tribes, as well as state-recognized tribes and individuals,'' said Mark Samos, Cancer Project director and special assistant to Mashantucket Tribal Council Secretary Charlene Jones.
The projects could not happen at a more crucial time. The IHS and National Cancer Institute studies show that cancer is the second leading cause of death among American Indians (heart disease is the first), and Natives have the poorest cancer survival rate of any racial or ethnic group in the United States.
Lung cancer is the most prevalent cause of cancer mortality in eight of the nine IHS areas, and cigarette-smoking rates are higher among all American Indians - 40.5 percent of men and 40.9 percent of women - than in other populations.
The Northeast Tribal Cancer Advisory Board, with representatives from the three tribes, has been established to oversee the overall vision of the project. The group's mission is to establish the infrastructure for developing cancer education and outreach programs among Northeastern tribal nations; develop a partnership plan between the tribes, researchers, health educators and state cancer control plans; and develop a Northeast Comprehensive Cancer Control Plan for Natives.
The project began with a $2,500 planning grant from the Mayo Clinic's Spirit of Eagles program, which is funded by the NCI and aims to develop capacity within tribes to contract cancer research and develop American Indian physicians and oncologists.
The planning project took place early last year with meetings between representatives from research and health education teams and the tribes. The group explored cancer health, education, resources and needs, and outlined specific strengths and weaknesses in cancer care in the state.
That work led to the two grants and the projects currently under way.
The Connecticut Native American Cancer Survivorship Project aims to improve cancer education and create a culturally sensitive cancer education and prevention program led by American Indians. Four cancer survivors will be trained as facilitators for ''talking circle'' education programs throughout the state.
''We'll be creating educational support groups for survivors led by Native American survivors and this will be for Native American survivors and their families - we define survivors not only as the person with cancer, but all the family members and caregivers around that survivor,'' Samos said.
A unique aspect of the project will be the creation and exhibition of an archive of stories of Native cancer survivors at the Pequot Museum and Research Center.
''We found out that most people really want their stories to be told and they want them to be told by themselves. To have their stories told in what has become a major museum is really powerful. People are lining up to do that,'' Samos said.
The CIS grant will study cancer learning patterns among the state's American Indians and help the service adapt materials for Native people. A secondary goal is to study health care providers' perceptions of the CIS and identify strategies for improving and increasing their use of the system.
CIS is a National Cancer Institute program that provides the latest and most accurate cancer information to patients, their families, the public and health professionals through a network of regional offices, toll-free help centers and a Web site at http://cis.nci.nih.gov.
''This project is really looking at how do Native Americans here seek and find cancer information and health care information. What's the most efficient way to get that information to them? In New England, CIS is based out of Yale University. Do they know about CIS and use it? Are health care professionals referring people to it?'' Samos asked.
He noted that one of the goals is to raise awareness that Native cancer cases are often under-reported.
''It would be helpful if health care providers could ask people in a respectful way if they are Native Americans. That way you could start looking at traditionality. What we're trying to do is create culturally sensitive education and prevention services for Native Americans that really look at and honor their culture and what's important to them. That's not universal, of course, that's by tribe; but really, [we 're trying] to include that and not have everyone treated the same.
''We think everyone should have access to and receive very high quality care, but there may be other care that's very important that may include traditional ceremonies and other practices, including Native American spiritual healers,'' Samos said.
Focus groups are just getting under way. American Indian cancer patients, survivors and their families who would like to get involved can contact Samos at email@example.com or (860) 396-2120.