Keywords: Diabetes health statistics adult onset diabetes juvenile diabetes and American Indians ethnic groups and diabetes Mashantucket Foxwoods Resort Casino DIABETES education Alaska natives and diabetes Pima Indians and diabetes Mashantucket Pequots Mohegans Mohegan Sun
Although his mother and aunts developed the disease, Kenneth M. Reels, chairman of the Mashantucket Tribal Council, never knew what diabetes was until he was diagnosed with it four years ago.
Reels has since become well educated on the topic, hosting five annual conferences on diabetes at tribe-owned Foxwoods Resort Casino, the world's largest gambling enterprise.
But local and state health experts say ignorance and denial remain a problem among hundreds of local American Indians who suffer from the disease, but don't seek care until they face a serious, sometimes life-threatening complication.
"In general, they don't seek out help and that's been a frustration for me," said Elaine Sullivan, a national certified diabetes educator at the Joslin Diabetes Center, an affiliate of Lawrence & Memorial Hospital in New London.
"I think they are ignoring it until they have a heart attack, stroke, kidney problem or blindness. A lot of people tend to be like that."
Diabetes more prevalent in American Indians and Alaska natives
About 16 million Americans have diabetes and about a third don't know they have the disease. But American Indians, on average, are more likely to contract diabetes than any other ethnic group in the United States.
A 1998 Centers for Disease Control report on the prevalence of diabetes in people age 20 and older, showed 9 percent of American Indians and Alaska natives have diabetes, a rate that is nearly three times higher than non-Hispanic whites. Half the Pima Indians in Arizona have diabetes, for example.
Citing statistics from Indian Health Services, Dr. Christopher Sorli, medical director of the Diabetes Management Center at The William W. Backus Hospital in Norwich, said 30 to 40 percent of the Mashantucket Pequots' 650 members have diabetes, and about 10 percent of the Mohegans' 1,450 members have the disease. The Mohegans operate Mohegan Sun.
The problem may be even more widespread.
"Most physicians would tell you there is underreporting by American Indians with diabetes," said Sara Trachten, executive director of the New Haven chapter of the Juvenile Diabetes Research Foundation, a fund-raising organization that covers southern Connecticut.
The issue of diabetic care for American Indians has become more relevant as more move into the region.
The 2000 census showed the number of Connecticut residents claiming Indian ancestry increased 50 percent since 1990. About 6,700 people claimed they were solely Indian in 1990, compared to 9,600 in 2000. Another 14,000 claimed mixed Indian blood.
Despite this influx, a disparity remains between the growing Indian population and how many actually join local diabetes management programs.
Backus reports just 10 Mashantucket patients and 20 Mohegan patients; L&M reports one-half percent of its 2,800 registered patients, or 140 people, are American Indians; Mashantucket Pequot Tribal Health Services sees 10 diabetic patients a month and meets with about 15 people in a monthly diabetes support group.
All state and federally recognized American Indians residing in southeastern Connecticut are eligible to receive services at the Mashantucket health center.
Sorli said because Backus' and L&M's diabetes programs both are relatively new, American Indians may be receiving care in other parts of the state, Rhode Island or Massachusetts. But he remains concerned about the dismally low number of American Indians in local diabetes programs.
"We aren't seeing as many people as I expected we would be," said Sorli, who has lectured about diabetes at Foxwoods. "My experience is there is a fair amount of apathy."
"I have no trouble reaching employees, but Native Americans tend not to come to these things. If (diabetes) is a cultural community thing, they need to do more things to become proactive."
Wendy Kane, a dietician and diabetes care coordinator for the Mashantuckets, said the tribe does not have a formal diabetes program. "We don't have the numbers to justify it," she said.
In a Connecticut Department of Public Health report on diabetes from 1993-97, the hospitalizations of American Indians were not calculated because not enough were recorded.
That may be because many American Indian patients don't register as American Indians. At Backus Hospital, for example, American Indians were not listed as an ethnic group on medical forms until after the Mashantuckets lodged a complaint last year, spokesman Cedric Woods said.
Diabetes prevention possible
The lack of American Indian involvement in diabetes programs is even more disconcerting considering doctors have become better able to prevent it.
Diabetes is an incurable, chronic disease in which the body does not produce or properly use insulin, a hormone needed to convert sugar, starches and other food into energy needed for daily life. It is the leading cause of blindness, kidney disease and non-traumatic lower limb amputations.
Health care and other costs directly related to diabetes treatment, as well as the costs of lost productivity, totaled $98 billion in 1997, according to the American Diabetes Association.
The old strategy of diabetes care was to wait until the disease manifested itself in an individual before prescribing pills and insulin to control the blood sugar. But now the approach is proactive.
"Individuals with this predisposition can (be identified) years before they have high blood pressure, diabetes, cholesterol abnormalities," Sorli said.
"All of this contributes to risk of heart disease and stroke. But well-done studies show that we can pick this up before it starts and we can prevent them from ever having diabetes."
In 2001, the Diabetes Prevention Program, a major national clinical trial, showed that exercise -- just 30 minutes of walking five days a week -- and diet significantly reduce the chances of an individual with impaired glucose tolerance, a condition that often precedes diabetes, of ever developing the disease.
Participants reduced their risk of getting type 2 diabetes -- at least 10 million Americans are vulnerable to this disease -- by 58 percent.
The same study, which featured mostly American Indian participants, found that treatment with the oral diabetes drug metformin reduced the risk of getting type 2 diabetes by 31 percent.
Diabetes Outreach unsuccessful
Armed with this information, local health officials are anxious to reach the local American Indian population. But they say their efforts have been mostly futile.
Sullivan of the Joslin Diabetes Center said she attempted to find American Indians for her peer-matching program in which individuals who successfully manage their diabetes are linked with individuals who have just been diagnosed with the disease.
She wanted to pair individuals of the same ethnicity, but only one American Indian joined the program.
Sullivan said she canceled her monthly outreach programs at the Mohegan Health Center because attendance had dwindled from six to zero after just three visits.
She also set up an information booth at a Mashantucket Health Fair but after 12 hours, just 25 people stopped by, and few of them were tribal members. She won't attend the fair next year.
Indian Health Services, a federal health program, recently held a patient education diabetic conference in Rhode Island for the association's eastern region. Just 40 people attended. Organizers do not plan to host another one.
"I don't know whether it's a fatalistic approach to the disease," Sullivan said. "I think there is a distrust of non-Indian services ... for good reason, based on our history. They're afraid we'll discount traditional medicine. But I will work with them and include herbal medicines."
Reasons for diabetes prevalence in American Indians and Alaska Natives
Sara Trachten, executive director of the New Haven chapter of Juvenile Diabetes Research Foundation, said there are several theories why American Indians have a high rate of diabetes.
Some researchers say their immune systems were damaged when exposed to diseases from the early American settlers. Others argue that when they were forced to relocate to Indian reservations, their lifestyles changed drastically: from active, mostly vegetarian people, to restricted, more sedentary people.
Meanwhile, Kane, the Mashantucket's diabetes care coordinator, said she would continue to promote prevention programs for local American Indians.
"Pequots, before the casino, were really poor, really disadvantaged citizens in Connecticut, with very poor health care coverage and undiagnosed and untreated diabetes," Trachten said. "It really takes its toll on the body. It affects all the major organs."
Kane is aware of this.
"We're trying to educate and provide standards of care, or things that need to be done on a regular basis -- blood pressure, weight and blood sugars," she said. "Diabetes is always on our minds."
Who is at risk?
Studies show diabetes can be prevented. But people who are unaware of the risk factors often don't realize they have the illness until after they have suffered a major complication, such as kidney disease. You should be tested regularly for diabetes if you:
- Have a close relative with diabetes.
- Are older than age 45.
- Are overweight.
- Do not exercise regularly.
- Are American Indian, black, Hispanic or Asian.
- Have low HDL cholesterol or high triglycerides.
- Are a woman who had gestational diabetes during pregnancy.
- Are a woman who had a baby weighing 9 pounds or more at birth.
Source: American Diabetes Association.
Adam Bowles, Norwich Bulletin