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NIDDK Brings Diabetes Prevention to Tribal Communities

NIDDK is helping to bring diabetes prevention to American Indians, who are at highest risk for the most prevalent form of the disease. Among some tribes, 50 percent of the adult population suffers from type 2 diabetes and its complications.

It has taken years of research. Fighting these statistics has been a life-long commitment for NIDDK scientists like Dr. William Knowler, principal investigator of the Southwest Indian Center for Diabetes Prevention and chief of the diabetes and arthritis epidemiology section of NIDDK. His work with Pima volunteers from the Gila River Indian Community in Phoenix, along with scientist emeritus Dr. Peter Bennett and other NIDDK researchers, has reshaped the world's understanding of diabetes.

"It's hard to believe," Knowler says, "but 30 years ago, diabetes among American Indians was thought to be some benign condition. We now recognize that diabetes in virtually every ethnic group in the world puts individuals at high risk of diabetic vascular, eye, kidney and heart disease."

Alvin Windy Boy (l), chair of the tribal leaders diabetes committee, meets with NIDDK's Dr. William Knowler (c) and Dr. Kermit Smith of IHS.

Knowler's research with the Pimas, particularly the landmark multi-ethnic Diabetes Prevention Program (DPP), has shown that diet and exercise can prevent or delay the onset of type 2 diabetes. The study also found that the oral drug metformin (Glucophage) is effective in preventing diabetes, though to a lesser degree.

One early response to the good news was a landmark meeting in Denver of 1,000 American Indians and Alaskan Natives, the first ever held to focus on preventing diabetes in American Indian communities. Conferences of this kind are one way to get valuable medical information to health care providers, but Bill Knowler took no chances. He took these research findings directly to the communities, tribal leaders say, and that is what has earned him their respect and trust.

"What Bill did has never been done before," says Dr. Kermit Smith, former chief medical officer for the Indian Health Service (IHS). He is now special medical consultant to the IHS on his own Ft. Peck Assiniboine and Sioux reservation in Montana.

"Researchers are usually more concerned with publishing papers. He took it upon himself to work with all of the diabetes control officers, even individual providers. It is truly a partnership. He helped so many people, and that kind of word gets around really fast in Indian country," Smith added.

When word got around, the tribal leaders unanimously decided to surprise Knowler and two of his NIDDK colleagues, Drs. Larry Agodoa and Sandy Garfield, with an item highly sacred to Indian values. To recognize their contributions in bringing key diabetes issues to light and working with tribal leaders to build programs to prevent the disease that has run rampant among Native Americans, the leaders presented each man with a tribal blanket. They accepted on behalf of NIDDK.

"The blanket," says Alvin Windy Boy, Sr., chairman of the tribal leaders diabetes committee, "is the symbol of security, warmth and guidance in one's life, and it extends to these men's families as well." Windy Boy represents more than 550 American Indian and Alaskan Native tribes.

"Honoring people in our culture is very common, and blankets are the most sacred thing you can give," said Smith.

"It was quite unexpected," Knowler said. "I've had a lot of recognition from the scientific community, but this is special."

Agodoa, who is director of NIDDK's Office of Minority Health Research Coordination, says he was also taken aback when Windy Boy announced his name and Garfield's (Garfield is NIDDK program director of clinical trials in behavioral research). Researchers, after all, aren't usually recognized by grateful communities. Agodoa and Garfield were honored for their role in creating DETS, or Diabetes Education in Tribal Schools. Under the 5-year program, researchers from Tribal Colleges and Universities (TCUs) around the country were invited to apply for grants to develop diabetes-focused educational programs to be included in science curriculums in tribal elementary, middle and high schools.

NIDDK's Dr. Lawrence Agodoa (l) and Dr. Sanford Garfield drape themselves in tribal blankets, given in gratitude for work on diabetes prevention.

"I was more than touched and felt honored to be allowed to have the door to American Indian culture opened to me," says Garfield. Agodoa agrees. It was a tribal idea from the beginning — a program to educate Indian youth about diabetes prevention and to inspire them to health-related science vocations. Agodoa and Garfield solicited the idea, worked out the details with the tribal leaders, took it back to Washington, and then returned with funding from NIDDK, CDC and IHS. What they have achieved is "historic," said Dr. Kelly Acton, director of the IHS National Diabetes Program. "It's never happened before that the NIH, the IHS, the Centers for Disease Control and Prevention and tribal leaders have partnered in a way to get more Indian students into science education," she said.

"They did it the Indian way," says Smith. "They presented it over and over and over again to different groups of tribal leaders. They have earned the admiration and respect of all tribal people."

Participating in the grant process is the American Indian Higher Education Consortium, which oversees the tribal colleges. Grants were recently awarded to researchers at eight TCUs for programs to encourage young American Indians to enter biomedical professions and lead tribal communities to better health. "These kinds of programs for our youth are our only hope," says Smith. "Only they can turn it around for future generations."

The word seems to be getting through to those future generations. One group of high school students ran from the middle of Wyoming to Billings, Montana, to promote diabetes awareness. They have challenged other students to do likewise. Another group of students, from the Ft. Peck reservation, went on strike for a week against their high school cafeteria until the administration put out a salad bar and more healthy foods. These students have since advised the USDA on the matter of school lunches and are now speaking at Native American conferences.

"The attitude is totally changed," says Agodoa. "Originally, there was skepticism, but now we are accepted. And part of the appreciation is shown in the honor we've been paid."

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