Tucson, Arizona
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by Jim Bradley
Most rural American Indian communities are far removed from the world of high-tech, cutting-edge medicine and glittering new urban research hospitals, but some observers are beginning to think that the reservations might hold the key to turning back the tide of a newly-emergent threat to the health of minority young people everywhere.
That consensus emerged last year when more than 100 prominent diabetes researchers, physicians, nurses, and other health care professionals from the U.S., Canada, and Japan convened in Tucson to pool their resources in the battle against type 2 diabetes in minority youth, the subject of a conference hosted by the Native American Research & Training Center.
Topics of discussion during the two-day event included recent research on the incidence and prevalence of type 2 diabetes in minority children and adolescents, high risk factors that are contributing to the rapid increase in the number of youth being diagnosed with the disease, the specific diagnostic characteristics of the condition, and a review of some promising prevention programs.
Also known as NIDDM (non-insulin-dependent diabetes mellitus, adult onset), type 2 diabetes differs considerably from the more familiar type 1 diabetes (insulin-dependent, juvenile onset). While children with type 1 diabetes require insulin for survival, those with type 2 may or may not require it, depending upon how well their diabetes is controlled. The possibility that the condition can be managed with diet and exercise underscores the importance of prompt diagnosis and early intervention.
Type 2 diabetes is already epidemic in many American Indian tribes and has been increasing among Hispanic and African-American adults in the United States. More ominously, the condition, usually associated with persons in their 40's and older, is now being diagnosed in minority children as young as six years of age, with potentially devastating consequences for their quality of life as young adults. If the disease is not controlled, many will suffer from one or more of the secondary complications of diabetes - blindness, amputation, renal failure, hypertension, and heart disease - by the time they reach their 20's.
Moreover, some observers believe that the problem may be worsened by the fact that some mainstream health care providers who are unaware that this "adult" form of diabetes is now affecting minority children in increasing numbers might be uncertain how to diagnose or treat these younger patients.
"There's certainly a tendency for many people to think, 'Well, if it's not type 1 diabetes, if it's not insulin dependent diabetes, this is not a serious disease,'" Dr. William Knowler told conference participants. "I’d like to emphasize that it is a serious disease. It's more serious for these people because they’ve developed it younger, and if they live long enough, they re going to have a very long duration of diabetes and be even more prone to the complications."
Knowler, Chief of Diabetes and Arthritis Epidemiology at the National Institute of Health's Phoenix office, has worked with the Pima Indians of the Gila River Indian Community for over 21 years in studies of the development of diabetes and its complications. "Diabetes which occurs in young people and adolescents is real diabetes," he warned. "It should not be ignored."
Raising public awareness of type 2 diabetes was one of the primary objectives of the Tucson conference, and by the close of the first day's presentations, even the most determined skeptic had to acknowledge that the disease does indeed pose a growing threat to minority youth. One after another, internationally recognized experts in diabetes treatment and research recounted studies of such widely-dispersed groups as Canadian Indian youth from Manitoba and Ontario, Native American kids from Arizona, Hispanic youth from Texas, African-American youngsters from the Northeastern and Southern U.S., and schoolchildren from Japan, all linked together by their shared susceptibility to type 2 diabetes.
Everywhere researchers looked, the disease was on the rise; catchphrases such as "the new smallpox" and an epidemic in the making echoed throughout the conference hall.
"Young people didn’t have diabetes 40 years ago. We re studying something that's undergoing change right before our eyes," observed Dr. David Johnson, Chief of Endocrinology at the University of Arizona Department of Medicine.
Part of the reason that type 2 diabetes suddenly appears to be increasing at such an alarming rate among minority youth is that although reports of its spread have been trickling in for the past several years, the mainstream medical community has been slow to recognize and react to the problem. One veteran researcher, Dr. Kenneth Lee Jones, Director of the Diabetes and Endocrinology Programs at the Children's Hospital of San Diego, recalled feeling like "an isolated prophet screaming in the wilderness" when he initially tried to convince pediatricians that what they were seeing in some of their young diabetic patients was type 2 diabetes, not type 1.
In Canada, Dr. Heather Dean, Head of Pediatric Endocrinology at the University of Manitoba and the author of several articles on type 2 diabetes in indigenous American youth, encountered a similar reaction when she attempted to highlight the problem in professional journals. "The reviewers were very skeptical," recalled Dean, who also serves as Medical Director for the Manitoba Diabetes Resource for Children and Adolescents. "They didn't believe that type 2 diabetes would occur in aboriginal children."
Still, the reports kept coming in, and some researchers began comparing the incidence of type 2 diabetes in the general population to its prevalence in various minority communities. In one such study cited by Dr. Dean, the occurrence rate of the disease in the overall population of Manitoba youth averaged 53 cases per 100,000 inhabitants. In contrast, the Indian community of St. Therese Point manifested an "exorbitantly high" type 2 prevalence rate of 765 young people per 100,000, nearly 14 times higher than the occurrence rate in the province's general population.
Similar studies of other far-flung minority communities mirrored the results from Manitoba. In Arizona, for example, an "exceptionally high" type 2 diabetes prevalence rate of 740 per 100,000 was detected in one Southwestern tribe. "This is worrisome for the future," Dr. Dean concluded. "There is no question that type 2 diabetes in children and adolescents is becoming a significant health problem."
Other reports demonstrated just how fast the problem has been growing. Dr. Arlan Rosenbloom, Distinguished Service Professor of Pediatrics at the University of Florida College of Medicine, cited a study that tracked type 2 diabetes incidence rates among 1,027 pediatric patients in Cincinnati over a 12-year period. For the first ten years, from 1982 to 1992, type 2 patients comprised only two percent of all newly-identified diabetes patients under the age of 19. During the last two years of the study, however, the total number of NIDDM patients had grown to 16 percent of all new cases, an increase which Rosenbloom termed "remarkable."
Sixty-nine percent of the patients in the Cincinnati study were African-American. As nearly identical results continued to pour in from Indian reservations, urban barrios, and ghettos across the continent, researchers began to connect the dots.
"We’d been a little suspicious that there might be some similarities between the patients we were seeing and what was going on in the African-American community, explained Dr. Dorothy Gohdes, former Director of the U.S. Indian Health Service Diabetes Program. "We also had a suspicion that whatever you find in the Indian community, you can find in the Latino community, provided that you know what you re looking for."
More than one speaker raised the possibility that children from different minority groups might be suffering from different forms of type 2 diabetes, but others disagreed. Among the dissenters was David Pettitt, M.D., Assistant Chief of the NIDDK's Diabetes and Arthritis Epidemiology Section, who has spent the last 18 years studying the epidemiology of diabetes in Native American children.
"The question is, is it typical type 2 diabetes or is it something else?" Pettitt asked rhetorically. "I am going to argue that, at least in this population, what we are seeing is very typical non-insulin dependent diabetes, exactly the same thing that we are seeing in adults, but occurring at younger ages."
Pettitt, who also served four years as a pediatrician in the Indian Health Service, linked the explosion of type 2 diabetes to an epidemic of diabetic pregnancies in young minority women. In some American Indian communities, for example, the proportion of young people diagnosed with diabetes by the time they reach the prime child-bearing age of 20 has steadily climbed over the past few years from about four percent to around 28-30 percent.
"When we have a mother with diabetes during the pregnancy, her infant is very likely to have already developed diabetes by the time she (the infant) reaches childbearing age and thereby perpetuates the vicious cycle," he explained.
Pettitt pointed to bottle feeding as a principal culprit in the problem of infant over-nutrition. Although some researchers have attributed the relationship between bottle feeding and higher rates of diabetes to immunologic factors, at least in the case of type 1 (IDDM or insulin-dependent) diabetes, Pettitt maintained that bottle-induced overnutrition is a causal factor in type 2 diabetes. In support of that view, he cited a study from Johns Hopkins University which showed that bottle-fed American children are over-fed by as much as 250 percent.
Pettitt hastened to add, however, that the scenario does offer "...some good possibilities for intervention very early in life." In particular, he urged health care providers to focus their prenatal care efforts on trying to produce children of normal birth weight, chiefly by controlling the mother's nutrition and glucose. Even if a mother already has diabetes before she becomes pregnant, controlling her condition will still help because the child will receive less over-nutrition during the pregnancy.
Another form of intervention is prevention, viewed by many as the most pressing need of all. With an eye toward this concern, conference participants took a look at a few of the innovative ways in which some American Indian communities are already moving ahead to halt the advance of type 2 diabetes in their young people. A review of existing prevention programs in two Southwestern tribes provided participants with a graphic illustration of some of the unique obstacles and challenges they can expect to face, along with some potential solutions and rewards.
In Arizona, the cornerstone of Gila River Indian Community's Asugha1 diabetes prevention program is early screening to identify children with impaired glucose tolerance (IGT). Once the kids with IGT have been identified, they re provided with a thorough diabetes education curriculum that includes classroom instruction, nutrition counseling and group exercise sessions.
It didn’t take long for program workers to run head-first into some of the complex socio-cultural issues and attitudes that typically frustrate efforts to combat the problem.
"Diabetes is not thought of as a preventable disease," explained Valerie Cook, Ph.D., who has administered Gila River's prevention program since 1988. "That's one of the things that we really want to change, so that people will no longer be without hope."
Prevention staffers also found that environmental factors in the surrounding community play a role. Poor water quality leads to high soft drink consumption, a problem shared by many other minority areas across the U.S. The school menu is still too high in fats and sweets, and urban encroachment is bringing fast-food outlets close to the reservation, the last thing youngsters with diabetes need. Then there are the everyday hardships of life on the reservation.
For young people, all these stressful phenomena lumped
together can constitute a pretty formidable backdrop, against which the vague future
threat of diabetes can sometimes pale in comparison, especially when the at-risk,
pre-diabetic children don’t even feel sick or suffer from any symptoms.
"With all the problems of adolescence and its identity crisis, all we're doing is adding another stressor to their lives," Cook pointed out. "Yet we ask these kids to make lifestyle changes, and it's a very difficult thing." It also further complicates the trickiest and most difficult challenge of all, she added: Teaching children the skills of self-management and personal responsibility.
In addition to the Asugha program, Gila River also operates the Quest diabetes prevention program for kindergarten and elementary children. The Quest regimen combines twice-weekly classroom instruction periods with a one-mile daily walk accompanied by a teacher. School meals are also modified to meet specific nutritional goals and reimbursement requirements, and individual family consultations are provided as needed.
In order to avoid overwhelming the youngsters, the Quest instructional curriculum is broken down into 12 basic, easy-to-grasp concepts, with material presented in an interactive 'show-and-tell' fashion. The instructional component also includes support and reinforcement for teachers.
The long-term results of Gila River's prevention efforts are still being analyzed, but the program does appear to be achieving success in one very important area: Teaching children that diabetes is not inevitable. It is a preventable disease.
When Dr. Nicolette Tuefel arrived in Zuni, New Mexico to set up a youth diabetes prevention program, she encountered some of the same problems seen at Gila River. Diabetes instruction for young people and faculty was limited, and most high school students had already completed their one credit of physical education by the time they finished their freshman year.
In the school, food service personnel felt constricted by the limited range of low-fat, high-fiber options offered by commodity foods and vendors. Water quality was also poor, contributing to high soft drink consumption. Some students averaged more than four sodas a day at school, and prevention staff decided that reducing soft drink consumption should be a top priority.
"This wasn’t something that was served to them. This was something they were choosing, so we felt that it was someplace we could intervene," explained Dr. Teufel, an assistant professor in the Arizona Prevention Center at the University of Arizona College of Medicine.
Prevention staffers began modestly enough by merely adding diet sodas to the selection available on the school's vending machines. During the second year of the program, the entire soft drink selection was changed to sugar-free drinks, and coolers with bottled water were also installed at various locations in the school. By the third year, soft drink consumption had declined noticeably.
The menu and food supply offered additional opportunities for intervention. For starters, a teen task force was charged with recommending alternative snacks, which were then made available in the school. Some of the task force's snack recommendations, such as dill pickles and lemons, remain perennial best-sellers to this day.
Prevention staff also provided food service personnel with low-fat recipes and easy-to-use suggestions for improving the quality of commodity foods, such as rinsing off the fats and syrups. Lastly, they called around the state and identified vendors willing to bring hard-to-obtain fresh fruit and vegetables out to Zuni.
Throughout the entire project, Teufel added, the cooperation between her staff and the food service personnel mirrored the larger, overall cooperation between the prevention staff and the school administration and tribal authorities. It was this partnership that ultimately made possible what many view as the centerpiece of the youth diabetes prevention effort in Zuni: The Teen Wellness Center.
Exercise was already well-accepted in the community as as a component of treatment for diabetes, thanks to the Zuni Wellness Center, an established and highly-regarded fitness facility utilized by the adult population. The prevention staff found, however, that young people were unlikely to make use of the adult facility due to such intangibles as different standards regarding noise and tastes in music.
Using the adult facility as a model, the Zuni Teen Wellness Center was established at the high school. In addition to a diabetes education resource center and the usual array of exercise equipment, the Teen Wellness Center also boasts several other attractions calculated to draw in kids who wouldn’t ordinarily consider coming to a gym.
"We didn’t want this to appear as sort of a 'jock' room," Teufel explained. "The students who are on teams and are regularly physically active were not our greatest concern."
Some of the added attractions, or "bait" as one student described them, include video machines, fooseball and pool tables, and vending machines stocked with diet drinks. The kids are also allowed to listen to their own kind of music, although songs with offensive lyrics cannot be played. Prevention staff periodically flip a breaker switch to turn off the equipment and encourage students to work out for a few minutes.
Perhaps the most novel feature of the facility is a climbing wall where students learn climbing and rapelling. Climbing not only provides a good workout and encourages cross-training for added strength, but also circumvents the phenomenon wherein the kids "track" themselves, having decided in advance that they re not good athletes. With climbing, everyone starts out the same. No one has any more experience than anyone else, and some of the youth who are initially less athletically inclined end up becoming accomplished climbers.
Furthermore, climbing and rapelling also promote social interaction as the kids coach and encourage each other. Some students end up climbing three or four times a day because they enjoy the interaction so much. Put simply, it's fun.
"I think that this really needs to be stressed," Teufel noted. "Nobody drops out of an intervention program because they re having too much fun."
After three years, the Zuni prevention program's strategy of "continuous intervention" has begun to pay off. Insulin levels have dropped measurably, and both sitting heart rates and heart recovery rates, as measured by a step test, have shown improvement as well. Pulse rates also appear to be moving in the right direction. Although the changes have not been as dramatic as some might have hoped, they have been measurable, and more importantly, the unfavorable long-term trends may have been slowed down or turned around, Teufel noted.
"We know that the life style changes that have contributed to this diabetes epidemic were not made overnight, and they are not going to be reversed in a few years," she pointed out. "And yet we have been able to have some kind of impact, and we re seeing some measurable differences."
In summarizing the conference, Dr. Dorothy Gohdes of the IHS noted that the wide range of markers and other criteria discussed in Tucson could be "massaged into a system" for diagnostic and research purposes. Among the suggested criteria were age, ethnic background, obesity, hyperinsulemia, acanthosis nigricans (a skin lesion), and a family history of diabetes, including maternal diabetes during pregnancy.
Perhaps the definitive statement to come out of the conference, however, was made earlier in the proceedings by Dr. Allan Drash, Professor of Pediatrics and Epidemiology at the University of Pittsburgh Graduate School of Public Health. Drash, a former Editor-in-Chief of Diabetes Care magazine and one of the earliest researchers to notice the increase in what he termed atypical diabetes in African-American youth, voiced a sentiment with which no observer could disagree:
"Regardless of what the condition is ultimately called," he reminded participants, "childhood diabetes, with an incidence rate of 15 new cases per 100,000 children each year, is one of the most common, serious, ongoing diseases of childhood, and clearly deserves our attention."
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1 Asugha-Piman for 'sugar.'
Funding for "NIDDM in Minority Children" was provided by the National Institute of Diabetes, Digestive & Kidney Disease (NIDDK), a division of the U.S. Office of Minority Health. A Proceedings for the conference was published in the February 1998 issue of Clinical Pediatrics, 37(2) 63-152. For additional information, please contact the NARTC at (520) 621-5075.
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