Diabetes Mellitus Interagency Coordinating Committee (DMICC) Meeting
"Type 2 Diabetes in American Indians and Alaska Natives: Focus on Children"
NIH Campus, Building 45 (Natcher), Room E1/E2
45 Center Drive
Welcome/Introduction/The DMICC: An Overview and the Charge for Today--Type 2 Diabetes in American Indian and Alaska Native Children
Dr. Sanford Garfield, Senior Advisor, Biometrics and Behavioral Science, National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), welcomed all to the meeting and introduced Dr. Allen Spiegel, the newly appointed Director of NIDDK. Dr. Spiegel announced his role as chair of the DMICC, following the departure of Dr. Richard Eastman. The key to the DMICC, Dr. Spiegel explained, is coordination, which implies communication and partnership. The Committee is well positioned to respond to a recent congressional mandate to address the issue of minority health disparities, including a focus on diabetes in American Indian peoples. The goal of the current meeting is to concentrate on the disproportionate prevalence of this condition in American Indian and Native Alaskan children and young adults. The DMICC is positioned to play a role in helping to bring advances in diabetes research, many of which provide hope for improved diabetes outcomes, by furthering communication through established and developing partnerships with the Indian Health Service (IHS), Tribes, and Tribal leaders.
Mr. Alvin Windy Boy, Sr., of the Chippewa Cree Tribe, offered a Tribal blessing to guide the meeting participants and attendees in their presentations, discussions, and deliberations.
IHS: Role in Tribal Health and Diabetes
Dr. Kelly Acton, Director, IHS National Diabetes Program, opened her presentation by noting that the American Indian/Alaska Native population is diverse in many ways--in traditions, cultures, history, language, food, living environment, and governance, among many other facets. More than 550 Tribal groups are federally recognized, reside within 34 States, and speak more than 200 different languages. About one-half of the Native American/Alaska Native population live in urban areas; some one-third live in poverty, as compared with about 13 percent for the total U.S. population. As Dr. Acton pointed out, the Native American/Alaska Native population is a growing one, with a 1994 population of 2.2 million and a projected population of 4.3 million by 2050. With this diversity and anticipated growth, Dr. Acton commented, it is important to keep in mind that no one method or approach to health care will work for all.
The Public Health Service (PHS) has overseen Indian health care, first through the Bureau of Indian Affairs and more recently through the IHS, since 1955. The IHS is unique among government health care-related agencies in that its mission is to elevate, through direct service mechanisms, the health status of a specific population; unlike many other government programs, such as Medicare, the programs funded by IHS are not entitlements. Dr. Acton noted that, overall, PHS/IHS has a positive record in addressing, raising awareness about, and assisting in ameliorating many serious public health problems within the American Indian/Native Alaskan population. However, for diabetes and other health issues, the IHS is severely underfunded. The limited budget authority and changing role of the IHS, whose major health-related programs have undergone reductions with medical inflation and increased administrative costs, can now meet only 30 to 40 percent of the health care needs of the populations it serves. For example, the per capita health care resources available for American Indians and Alaska Natives through IHS is approximately $1,500/year versus approximately $3,000/year for Medicare recipients; the actual annual costs associated with treating diabetes average $5,000 to $9,000. Thus, IHS funding for individuals with diabetes falls very short of what is needed. Because many American Indians and Alaska Natives live in rural settings, they are isolated, which presents an additional barrier to receiving adequate and appropriate health care.
It has long been known that adults in the American Indian/Alaska Native population have high prevalence rates of diabetes. National data on American Indian/Alaska Native populations collected by the IHS between 1991 and 1997 from 151 IHS service units and analyzed by the Centers for Disease Control and Prevention (CDC) reveal an increase in the prevalence of diabetes in all of the age groups during the time period studied. The greatest increases were found in adolescents aged 15 to19 (up 32 percent), young adults aged 20 to 24 (up 36 percent), and in adults aged 25 to 34 (up 28 percent). The increase seen in young men was about twice that seen among young women. Dividing up the American Indian/Alaska Native data by region, it was apparent that the Alaskan region has the lowest prevalence of diabetes in children, adolescents, and young adults. All of the regions showed a steady increase in diabetes between 1991 and 1997.
Several steps and actions have been taken in the past two decades to remedy health care issues and problems facing American Indians and Alaska Natives. In 1979, Congress established the IHS National Diabetes Program (NDP) in response to research showing the very high prevalence of diabetes and related complications among Pima Indians. This program, which extends to the entire American Indian population, is based on standard clinical and public health models. One key component of the NDP is the Diabetes Care and Outcomes Audit, an ongoing audit that has been conducted annually since 1987. The audit now includes 87 different elements of standard of care, based on medical record reviews (e.g., foot exams, eye exams, blood pressure, glycemic control, kidney function, etc.). Outcomes measures are used as QA tools and as the means to identify gaps in care and outcomes and practices to improve care. Dr. Acton noted that lifestyle changes have a big impact on improving or at least maintaining the health of diabetics. At present, the very limited per capita funds available to American Indians and Alaska Natives with diabetes are insufficient to provide many of the fundamentals, including medications, to stem the effects and progression of the disease. The growing number of Indian youth with diabetes is another critical issue that must be addressed.
The NDP needs additional staff and resources to identify and study gaps and implement further changes to improve outcomes. It is looking to the NIH, CDC, and other entities to develop and strengthen partnerships to assist in this endeavor. The Tribes also are considering the 333 grant programs as an alternative resource to fund studies of diabetes in Indians. Another newer approach that the Tribal population has undertaken to have a more direct role in the health care of its peoples stems from the self-governance movement, which was instituted as a demonstration project in 1989. This movement has grown in the past decade, and now more than one-half of all Tribes have contracted to provide their own health care. As this movement has grown, however, the role of IHS has become less clear and less certain. Dr. Acton recognized the importance of the joint efforts of government agencies and Tribes and pointed to the Tribal Leaders Diabetes Committee as a good example of such partnerships.
The Tribal Leaders Diabetes Committee--Description and Responsibilities
Mr. Windy Boy, Sr., Co-Chair of the Tribal Leaders Diabetes Committee, echoed many of the points put forth by Dr. Acton about the importance of partnerships, such as the Tribal Leaders Diabetes Committee; adequate funding for medical care and research; self-governance and increased involvement of Tribal leadership at all levels of Tribal life; and understanding, retaining, and incorporating traditional ways, beliefs, and values into all aspects of health care. As the self-governance movement has grown, Tribal leaders are taking the initiative in determining the best path for their people, with a key message of "Go back" to traditions and to nature to keep mind, body, and spirit in balance. The messages of the Tribal leaders focus strongly on lifestyle, which is known to be critical to influencing the development and management of type 2 diabetes. Although lifestyle changes must be made by an individual, the family, health care providers, and community can serve as strong sources of support and information. As with other chronic diseases, most cases of type 2 diabetes have both environmental (e.g., lifestyle) and complex genetic components. Thus, simpler messages such as "eat less, exercise more," while helpful, will not be able to solve the entire problem.
To its credit, Mr. Windy Boy commented, NIH is moving forward in including as partners Tribal leaders and Tribal communities in discussions to direct research and improve health and medical care of native peoples; this is especially important in the area of diabetes, which has been devastating to Indians of all Tribes. It is important to keep in mind, however, the different primary missions of the various health-related government agencies (e.g., NIH, CDC, IHS, FDA, AHRQ) with respect to research; prevention, screening, and treatment; regulation and policy; public health; and educational and translation efforts.
Mr. Windy Boy outlined several steps taken by both the Federal government and Tribal governments in the past 25 years to address health care among Indian peoples. In the mid-1970s, President Nixon signed a law allowing Tribes to contract health care services with the IHS. In 1989, the self-governance demonstration project, which gave Tribes flexibility to redirect health care monies and services, was launched. This program has grown and now includes 253 contracts or compacts, each of which is specific to the contracting Tribe. In 1994, though a Planning Grant from IHS, the self-governance health care contract budget allowances grew from $3.2 to $8 million per year and expanded to include orthodontic care, pharmaceutical coverage, other health disciplines, and Tribal health wards. These changes overall have helped the diverse American Indian and Alaska Native populations to start to identify and fill health care needs specific to each Tribe.
Diabetes in Alaska Natives
In this presentation, Ms. H. Sally Smith, Chair, Bristol Bay Area Health Corporation; President, National Indian Health Board; and member, Tribal Leaders Diabetes Committee, summarized recent changes in Tribal roles and responsibilities for health care systems and delivery, her traditional upbringing in Alaska, and the dramatic changes in Alaska Natives' day-to-day lives that have occurred in the past few decades.
Ms. Smith noted that the National Indian Health Board (NIHB) serves 528 Tribal nations while addressing 12 health areas and upholding all Tribal government agreements. The initial Board was established in 1972 in an effort to improve Indian health care and medical services. In the 1980s, the IHS sought Tribal consultations to obtain feedback in continuing these efforts. In the 1990s, the government elevated the level of these consultations and began to support the movement toward self-governance. As Ms. Smith explained, Tribal sovereignty, through which Tribal nations seek to protect their interests and engage in treaty making, has long been part of American history. In the 1880s, the Federal government treated Indian Tribes as quasi-independent nations, whereas in the 1990s, the solid shift toward self-governance has allowed for clear recognition of the many Tribes as independent nations that maintain their own constitutionally developed political and legal rights. Contemporary Indian health problems, such as diabetes and kidney disease, which, in many Tribes, occur at rates that are three to five times higher than in the general U.S. population, are now being addressed at a variety of levels through different agencies (e.g., CDC, NIH, IHS) and private organizations (e.g., Juvenile Diabetes Foundation, American Diabetes Association [ADA]). However, the lack of sufficient funds remains in question, and, as Ms. Smith noted, the NIHB, among others, seeks a 300- to 500-percent increase in Federal health care funds for Indian programs.
Alaska is home to 171 remote Indian villages, each with an average of 100 to 400 residents. The location of most of these villages in isolated, rural areas presents unique health care challenges and barriers that make outreach and delivery of care and follow up to diabetic patients difficult. Added to these challenges is that, despite their isolation, the villages and their residents are not immune to "Western" influences--such as a high-fat, high-sugar, low-fiber diet; computer and video games; television; and increased to exclusive reliance on motorized vehicles--that can adversely affect health and reduce regular physical activity.
The adoption of "Western" lifestyle is in stark contrast with the traditional lifestyle of Alaska Natives just one or two generations ago, when farming and fishing; high levels of physical activity, such as kayaking, harvesting, and walking; and indigenous foods of the land and sea, including low-fat caribou and heart-healthy fishes, were integral to day-to-day life. Today, Ms. Smith noted, even the smallest towns have pizza parlors and take-out restaurants, and residents use airplanes, sport utility vehicles, and snowmobiles as the prime modes of transportation, which contribute to a sedentary lifestyle.
These lifestyle changes have had pronounced effects on the physical attributes and health of many Alaska Natives. Through a series of slides, Ms. Smith showed Natives of previous generations, who were slender, lean, fit, and strong, even among the elderly, in contrast with current generations of young and older alike, who tend to be heavier and less fit. She noted that the rate of diabetes among some Alaskan Tribes in the 12 regions of the State has increased by 200 percent over the 13-year period between 1985 and 1998; type 2 diabetes in preteen Native Alaskans is on the rise; and more diabetes cases are being reported in outpatient clinics. As a regular service of the Indian health care system, community health aides, including educators, nurses, and advocates, supplement doctors' care by meeting with diabetic patients 2 weeks before the doctors' visits to collect blood and urine, answer questions, and provide other support as needed. With resources stretched to the limit, the Alaska Native compact as well as the NIHB welcome thoughtful input, support, and resources, and encourage the continued growth of new and established partnerships.
In a brief break following the previous presentations, Ms. Smith noted that 1993 was a key time for health care for Alaska Natives. During this year, all Tribes in the State were brought together under the Alaska Tribal Health Compact, which oversees the entire Tribal health care system in Alaska. Through this Compact, each Tribe can opt in or out of the Statewide system, giving each Tribe flexibility and the opportunity to join in on local, State, and national partnerships and collaborations. Many of the changes made in health care in Alaska were initiated in light of the positives associated with the self-governance movement and following nationalization of the IHS budget, in which the Service's shares and funds were divided among all Tribes.
Currently, Dr. Yvette Roubideaux noted, approximately 47 percent of the IHS budget is under Tribal control. However, in recent years, the IHS has experienced major program reductions and absorptions and reductions in funds to support the remaining programs. The level of funding has become very critical, especially when these program and financial changes are considered in conjunction with medical inflation, increased health care administrative costs, and the growing importance of preventive care. As noted by previous speakers, annual per capita diabetes funds through IHS are approximately one-half of Medicare funds and only one-fifth of per capita funds available through the VA system. Thus, not only are funds insufficient for adequate diabetes-related clinical health care but also providers interested in conducting even the simplest of research studies must look elsewhere. Ms. Smith added that many Tribes already have maximized alternative financial resources, with the bulk of funds needed for staff time and patient treatment.
Dr. Spiegel acknowledged the importance and success of the shift in the role of IHS governance to self-governance and agreed that, given the factors cited, the IHS has had to severely ration health care services and is able to meet only 30 to 40 percent of the current health care needs of American Indians and Alaska Natives. An important next step is determining the effectiveness, including a cost-benefit analysis, of primary prevention, which likely will be key in childhood diabetes. Dr. Spiegel noted the recently appropriated diabetes seed money of $30 million for 5 years includes $2 million for prevention and $11 million for treatment. Some attendees suggested using some of these funds to identify an inexpensive, simple, and practical screening test that could replace the "gold standard," the oral glucose tolerance test. Others suggested using a portion of these funds to develop a plan to identify the messages, resources, and treatment and prevention strategies to implement.
The Tribal Role in Research: Impact on Diabetes
The Honorable Malcolm Bowekaty, Governor, Pueblo Zuni Nation, challenged the research community to rethink its strategy, infrastructure, and agenda for diabetes in general and Indian populations specifically. He noted the wealth of data already available from the many descriptive, epidemiologic, basic, and clinical research studies conducted over the past decades. These data should be sufficient to provide the fundamental ideas for a cure or, at the very least, the tools and information necessary to make significant progress to stem the epidemic of diabetes (and related conditions, such as kidney disease) among American Indians, Alaska Natives, other high-risk groups, and the population at large as well. These tools include best practices and standards for clinical care and home-based care; requiring higher standards for hospitals and service units; an increase in the number of available dialysis machines; and the training of caring, knowledgeable, and culturally sensitive professionals.
He emphasized the need for NIH, in conjunction with Indian communities and leaders, to develop a definitive diabetes research agenda with clear and defined goals. To achieve this, Tribes should be involved in all phases of the research engine, from planning and design to implementation of a study to translation of research results into practice; Tribal input should be required before approval of any projects that use Native peoples as participants. The government and Tribes must work together to foster a relationship based on deep trust and prosperity. The Zuni Tribe, a nation of approximately 9,200, have participated in numerous studies, Gov. Bowekaty commented, sometimes at a high cost to the participants or the community.
Gov. Bowekaty identified several strategies and issues to consider for future projects and endeavors. For example, funding should be increased for the recruitment and training of minority researchers and to support minority research centers. For sample size and data analysis and evaluations, researchers should strongly consider pooling data or establishing collective data centers to increase statistical power to obtain meaningful results. Educational efforts and materials should reflect competence, advocacy, and cultural understanding, while being scientifically accurate. Interagency coordination is key to ensuring success.
Gov. Bowekaty pointed to a set of critical and interconnected issues associated with treating and curing diabetes among Indians of all ages. Reaching youth should be a priority, with a primary focus on primary prevention and cure; ensuring a future of healthy adults benefits both individuals and the community in many ways. The focus for adults, who serve as role models, should be on quality of life, prevention, and standards of care. For the elderly diabetic population, areas of concern are maintaining quality of life, which, at this time, includes dialysis. The roles of different agencies, including the NIH, IHS, CDC, BIA, and Tribes, are varied. All agencies should be called on to provide funding and to seek the best approach within the agency infrastructure to reach a cure. Other primary roles include the conduct of basic and clinical research, establishing or enforcing standards of care, setting policy, and public health outreach and education.
The ultimate goal of diabetes research and care should focus on cure and treatment; tangible benefits can be achieved through revising standards of care that will improve individuals' quality of life as well as their medical condition per se. Gov. Bowekaty stated that Tribes will support the moving forward of research with merits for a cure and are highly motivated to participate in the review of proposed research projects.
Navajo Nation Special Diabetes Project (Focus on Navajo Children)
Ms. Marla Jasperse, Executive Director, Navajo Nation Division of Health, described this project, which uses a collaborative, holistic model to better understand the diabetic patient and includes a focus on Navajo children. The "total health concept" model that forms the basis of the Navajo Nation Special Diabetes Project incorporates family, community, and traditional approaches to treatment and education using the components of spirituality, knowledge, physical needs, emotion, and society. It recognizes the importance of ascertaining the existing habits of a Tribal community, how those habits are linked to each other, what functions they serve within the community, and what they mean.
This model provides for a better understanding of the diabetic patient; increases collaborations between health care providers, patients, the family, and the community; maximizes resources; and allows for an increased role for traditional treatment and education. Under the spiritual component, the model encourages the use of prayer and daily thanks for well being; incorporates traditional therapies such as herbs and ceremonies; and emphasizes traditional values, beliefs, spiritual teachings, and respect for self and others. The knowledge component focuses on incorporating traditional teachings and education, defining diabetes and related conditions in the Navajo language (e.g., "sugar disease"), and developing culturally appropriate educational materials. Physical needs include a variety of aspects of daily living, such as nutritious food, exercise, availability of running water and electricity, and other physical supports associated with a diabetes diagnosis. The emotional feature of the model addresses an individual's ability to accept or deny diagnosis, provides for support groups, and recognizes the importance of family. Ms. Jasperse noted that the societal component is often the most difficult to develop and implement because it moves into and seeks support through a variety of community venues, such as supermarkets and restaurants (e.g., to help disseminate nutrition and health information), Tribal leadership involvement (e.g., coordinating regular walks with the President of a Tribe, promoting an outreach and health message), border town support, schools (e.g., health promotion and disease prevention), and different types of support groups.
Ms. Jasperse noted that the model, which has many benefits to individuals and the Tribe at large, has been introduced to and has seen great success within schools and communities as a preventive and educational strategy.
The IHS Diabetes Program: Special Program for Indians and Epidemiology of Type 2 Diabetes in Indian Children
During this presentation, Dr. Acton focused on two key issues: the Balanced Budget Act (BBA) Grants Fund and the extent of the IHS's knowledge about type 2 diabetes mellitus in children. The BBA Grants Fund provides for a total of $33 million/year (including a $3-million/year Interior Department appropriation) over a 5-year period beginning in FY98. The legislative intent of this program was to establish a special diabetes program for Indians. The program established a work group, the Tribal Leaders Diabetes Committee, to advise the IHS and other organizations about diabetes-related issues. National efforts targeted toward American Indians before the BBA Grants Fund consisted of a network of 13 area diabetes consultants, 19 model diabetes programs, and 333 diabetes grant sites that have evolved and developed over 21 years.
The IHS recently surveyed grantees to evaluate its diabetes programs, with a focus on new components and results of these programs. In programs for the target age groups, the survey found that approximately 50 percent of the programs target young adults, 40 percent are geared toward adolescents, 30 percent focus on elementary school children, 20 percent are designed for Headstart or preschool children, 50 percent focus on family members with diabetes, and 40 percent target overweight youth. Additional programs focus on providing nutritional information to specific target groups; developing and implementing methods to increase physical activity using BBA Grants Fund monies; and tracking screening, referrals, and treatment modes for diabetes complications associated with the feet, eyes, dental/oral health, blood pressure, urine, and protein metabolism. The IHS survey identified several new or improved facets used to develop diabetes programs, including a diabetes team, diabetes registry, diabetes clinic, chart audits, and flow charts or flow sheets. Many IHS-supported diabetes programs also incorporate traditional approaches, such as story telling and talking circles, and 60 percent of the programs provide education, outreach, and training to health professionals. Survey respondents indicated that the two most significant barriers to implementing programs are lack of space and difficulties in hiring new staff.
Expanding on her earlier presentation, Dr. Acton summarized trends of IHS's ongoing Diabetes Care and Outcomes Audits, which have been conducted annually since 1987 and now include 87 different elements for which data are collected using manual medical record reviews (e.g., foot exams, eye exams, blood pressure, glycemic control, kidney function, and other measures). The audits use a systematic random sampling of records from various IHS and Tribal registries across the country; elements are tracked by age of patients and follow the population over time. One favorable outcome observed in all age groups was improvement in hemoglobin A1c (HgbA1c), which serves as a measure of glycemic control. Overall, however, the youngest persons had the worst HgbA1c levels. The audits also demonstrate that the prevalence of diabetes has increased across all age groups since they began, with the greatest increase in prevalence seen in youngest persons (ages 15 to 34) between 1991 and 1997. During this time, the prevalence of diabetes increased by 32 percent, 36 percent, and 28 percent among those 15 to 19 years old, 20 to 24 years old, and 25 to 34 years old, respectively. Among children under 15 years old, the prevalence of diabetes mellitus increased by 6 percent. As Dr. Acton noted, these data clearly demonstrate that diabetes is a growing problem among American Indians, particularly in younger persons.
National Indian Council on Aging: The Role of Elders
Mr. David Baldridge, Executive Director, National Indian Council on Aging, provided background and demographic information on Indian elders in this country. Currently there are approximately 236,000 Indian elders and 550 federally recognized Indian Tribes in the United States. Some 80 percent of the Indian elders live west of the Mississippi River, and 50 percent live in a rural setting. Ten percent of older Indians have no formal education, and 26 percent are high school graduates. Overall, Indian elders are more likely to live in poverty than older persons in other populations. The life expectancy for older American Indians also is less than that for other Americans; for example, Indians born in 1941 have a life expectancy of 51 years, compared with a life expectancy of 65 years for white Americans. This gap appears to be closing, however, for younger persons. Indians born in 1989 or 1994 have a life expectancy of 71 and 72 years, respectively, compared with a life expectancy of 75 years for whites born in either 1989 or 1994.
In continuing his presentation, Mr. Baldridge noted that most Indian Tribes place high value and importance on family and community life and recognize the integral role of elders in their communities. He explained that there are many different ways of "defining" or identifying elders within the Indian culture. Elders may be spiritual leaders of a Tribe, possessing characteristics such as connectedness and selflessness and following traditional ways. Elders also may be cultural guardians who are a living history for a Tribe and who protect values and carry knowledge and the history of their ancestors. Tribal elders serve as role models who teach by example, who often have overcome significant adversities, and who are self-reliant.
A holistic approach to medicine and health within Tribal life recognizes and incorporates the physical, mental, and spiritual aspects of an individual, family, and community; supports strong family involvement in home care; and stresses the importance of caregivers. The IHS supports 145 health service units and 40 clinics that serve 350 Tribes. Although there are 12 Indian nursing homes, more than 90 percent of long-term care for Indians is done by family members.
Data show that more than one in five Indian elders have type 2 diabetes and that in some communities, more than one-half of Indian elders have this disease. Thus, Mr. Baldridge commented, the prevalence of diabetes among older Indians has reached epidemic proportions. Efforts to increase awareness and educate the general Indian population and health professionals about this problem ideally should focus on developing simple, clear, and culturally appropriate messages; using known and trusted persons, such as family members and elder role models, to deliver messages and incorporate visual learning into outreach programs. The IHS's 5-year diabetes education initiative involves developing a comprehensive education program, training, pilot testing the program, evaluating the results of the pilot testing, and expanding the program to accommodate a larger audience.
To reverse the trend of increased prevalence of diabetes among Indian elders, and among Indians overall, programs need to engage a variety of partners, including insurance providers, researchers, Federal agencies, advocates, and families/communities. These partnerships can help create a holistic approach that incorporates families, in-home care, patient education, and benefits counseling.
Diabetes Research: The Pima Indians
Dr. Robert Nelson, Staff Clinician, NIDDK, described the history and findings of the longitudinal population study in the Pima Indians of the Gila River Indian Community in Arizona. He described past studies and some current research issues, including the extent of diabetes mellitus in children.
In the mid-1960's, at the start of the longitudinal study, Pima Indians lived in primitive conditions; many did not have access to running water. At that time, researchers found high levels of obesity and a high rate of diabetes mellitus in the population. Oral glucose tolerance testing (OGTT) revealed that the prevalence of diabetes among the Pima was related to age and sex, with the greatest proportion of affected persons (40 percent of men, 65 percent of women) over the age of 35 years. The overall prevalence of diabetes mellitus in the adult population (about 50 percent for those 35 to 64 years old) is higher than in other American Indian populations (e.g., 29 percent among adult Navajo), and the prevalence of type 2 diabetes is increasing even in the children. Increased exposure to diabetes in utero appears to be at least partly responsible for the rising prevalence in Pima children.
The longitudinal population study includes anthropometric measurements, a medical history, EKG, physical examination, and numerous lab tests (e.g., OGTT/glucose, lipids). Major accomplishments of the study include establishment of the criteria for diagnosing diabetes mellitus, identification of insulin resistance as specific to type 2 diabetes, and demonstration that infants who are breast fed are less likely to develop diabetes that those that are not breast fed.
This study demonstrated that development of diabetes is a two-step process. The first step is transition from normal to impaired glucose tolerance, for which insulin resistance is the main determinant. The second and later step is worsening from impaired glucose tolerance to diabetes, in which the pancreas becomes unable to keep up with the insulin demand. In addition, the study showed a significantly higher prevalence of type 2 diabetes in children of mothers with diabetes during pregnancy. The children not only developed diabetes more frequently but did so at an earlier age than those whose mothers were not diabetic during pregnancy. The study also found that exposure to maternal diabetes is on the rise.
Researchers found that the prevalence of end-stage renal disease in Pima Indians was 75 times that in U.S. whites, and the rate of kidney failure is rising. In addition, detailed studies of kidney function demonstrated high rates of glomerular filtration in those with diabetes. Intrauterine exposure to diabetes was associated with a twofold increase in the risk of kidney disease.
American Indian Community Intervention
Dr. Jeanette Carter, Associate Professor, University of New Mexico School of Medicine, was joined by two other researchers from the University of New Mexico (UNM), Ms. Marla Pardilla and Ms. Jackie Two Feathers, in discussing the Native American Diabetes Project, conducted by investigators at the UNM School of Medicine. The study, which included adult women in the State aged 18 to 88 years was initiated after the discovery that mortality rates among Indian and Hispanic women with diabetes increased markedly between 1958 and 1994, while rates for diabetic white women remained relatively stable.
In an effort to address and counter this trend, a comprehensive, multifaceted intervention program was developed. The initial phase of the project included holding community meetings, focus groups, and in-person interviews (to collect baseline information) and producing a draft curriculum; the proposed program components were reviewed by bilingual community members and pilot tested, which resulted in additional changes to the program. The key messages of the program and curriculum were "Get more exercise," "Eat less fat," "Eat less sugar," "Together we can," and "Stay on the path." The curriculum developed incorporated stories (e.g., "through the eyes of an eagle"), hands-on activities, local and community functions, role-playing, and prayers. The program was implemented using community members as "mentors" who taught the various elements of the curriculum at neutral sites. The study included three intervention arms: group participation, one-on-one intervention, and "usual care" (delayed intervention). Evaluation measures included reviewing COOP charts, tracking food intake and level of physical activity, monitoring HgbA1c levels, and following changes in exercise and diet and related factors (e.g., weight, height).
A total of 206 persons were interviewed at baseline, which was 1 year before the intervention phase began. Study participants were matched according to age, duration of diabetes, and other relevant factors. Retention to the study was high (89 percent following intervention), and 95 percent of participants reported high satisfaction with both the one-on-one and group interventions and expressed interested in having the program continue after the study ended. Weight and glycemic control improved among those in the focused intervention groups (one-on-one, group) but worsened or did not improve among those receiving usual care. An unexpected finding was that, among all participants, HgbA1c decreased steadily with age, from 10.1 percent among those 18 to 39 years old to 7.7 percent for those over 70 years old. BMI (body mass index) also dropped as age increased; thus, the youngest participants were the most obese and most out of control. Findings from the study have been disseminated to local communities and nationally through a grant from the Bristol Myers Squibb Foundation. The national ADA has incorporated the intervention program into their Awakening the Spirit program, an outreach to Native American communities. To date, 94 Tribal community teams have been trained with 60 percent implementing the program. Future research includes evaluation of facilitating factors and barriers to implementation.
NHLBI: Strong Heart Study
In her presentation, Dr. Barbara Howard, President, MedStar Research Institute, outlined key points of the Strong Heart Study (SHS), whose objectives are to measure rates of cardiovascular disease (CVD), measure levels of risk factors for CVD, evaluate the effect of diabetes on CVD, and follow up on and evaluate the determinants of CVD. Participants include approximately 4,500 persons from 13 communities in Arizona, North Dakota, Oklahoma, and South Dakota. Men and women 45 to 74 years old at the time of enrollment were eligible to participate. Communities are involved in all phases of the study: planning, recruitment, conduct of exams, and use of data. The participating communities receive several benefits from the study such as referrals for health care, feedback to individuals on results and educational materials, training, and updated progress and status reports.
Phase I of the study ran from 1988 through 1991 and included physical examinations and a Community Mortality Study based on information from death certificates. Phase II ran from 1991 through 1996 and included physical examinations and surveillance for CVD and risk factors for all Phase I participants using medical records reviews. Phase II also continued the Mortality Study. Phase III began in 1996 and is slated to run through 2000; it continued physical examinations and CVD surveillance on Phase I participants and initiated a Family Study, in which 30 families with at least 30 members over the age of 18 years are studied more extensively with respect to the other components of the larger investigation.
Participation rates overall have been good, with at least 90 percent of the initial enrollees who are still alive still active in the protocol. Surveillance results show that CVD and total mortality rates, CVD incidence, and prevalence of atherosclerotic plaques were higher among SHS participants than whites and blacks combined from comparable NIH-funded population studies. The study found that cholesterol levels among American Indians are lower than levels in whites and the general population, but data indicate that LDL cholesterol is one of the strongest predictors of CVD. For American Indians, as LDL levels increased, the increase in risk for CVD was higher than that for whites and the general population with the same LDL values. Rates for heart disease in Indians with diabetes were very high and the greatest risk for CVD was for diabetics with kidney disease. In addition, the study found that heart disease starts very early in life; because risk for CVD and diabetes appear to be closely related, it is important to consider both diseases in tandem for investigating, preventing, screening, and treating these conditions, even in children.
NIDDK: Type 2 Diabetes in Children Conference and Future Directions
Dr. Barbara Linder, Program Director, Clinical Endocrinology and Diabetes Complications Program, NIDDK, provided an overview of the July 1999 DMICC meeting, which focused on type 2 diabetes in children, with an emphasis on African American, Hispanic American, and American Indian youth. Results of descriptive epidemiology studies indicate that type 2 diabetes (T2D) in the pediatric population is increasing at alarming rates in the three groups of interest. In contrast, the prevalence of type 1 diabetes (insulin dependent diabetes mellitus) in children has remained relatively stable over time.
Several presentations at the July 1999 DMICC meeting focused on diabetes in North American Indian children. Dr. Kelly Moore, Acting Chief Medical Officer/Area Diabetes Consultant at the Billings Area IHS, described Canadian aboriginal data from Dr. Heather Dean's studies, in which the average age at diagnosis of type 2 diabetes was shown to be 10 to14 years, similar to other populations. These data also show that the BMI for diabetic males is nearly always above the 95 percentile and that type 2 diabetes tends to be more common in females in this population, whereas type 1 diabetes tends to occur equally in males and females. Another statistic indicated that 76 percent of Canadian aboriginal children with type 2 diabetes have mothers with diagnosed diabetes. Dr. Moore also compared the Canadian data on diabetes with data collected from the Pima Indians in Arizona. Most cases are first diagnosed in Pima children between 10 to 19 years of age, with the gender ratio for type 2 diabetes favoring females; recent data show relative increases in male incidence of type 2 diabetes, however. In addition, the Pima diabetes population shows a high percentage of exposure to diabetes in utero, which is proposed to be a major risk factor in this population for the development of type 2 diabetes.
In a discussion of fasting insulin levels, Dr. Moore presented data from the Canadian study showing that about 62 of 103 (60 percent) study participants have increased insulin levels. Hyperinsulinemia has been shown to be a good predictor for the development of type 2 diabetes in Pima children; the 10-year diabetes incidence rate is much higher in those children with elevated fasting insulin. Frequency distribution data of fasting insulin and fasting glucose levels show that Pima children have markedly higher levels than do white children, with a marked rightward shift of the distribution curves.
Dr. William Knowler, Chief, Diabetes and Arthritis Epidemiology Section, NIDDK, remarked during the July 1999 meeting that diabetes prevalence in Pima Indian adolescents, which is historically high, has dramatically increased between 1976 and 1996. The type 2 diabetes prevalence rate is now 8 to 10 times higher than rates in comparable reference white populations from Rochester, Minnesota. Risk factors for type 2 diabetes in the Pima population include family history of diabetes; if only one parent has diabetes, the risk for the child is greater if the mother, rather than the father, has diabetes. The strongest family risk factor, in fact, is in utero exposure to a diabetic mother, rather than simply inheritance of diabetes susceptibility genes. Dr. Knowler showed that much of the recent increase in type 2 diabetes prevalence is attributable to the increase in the proportion of Pima women who are diabetic while pregnant. Another risk factor for type 2 diabetes is birth weight. Either very low or very high birth weight markedly increases the risk for diabetes. An independent risk factor for type 2 diabetes is bottle feeding.
Also during the July 1999 meeting, Dr. Heather Dean, Professor of Pediatric Endocrinology and Metabolism at the University of Manitoba, discussed several regional studies on diabetes prevalence in aboriginal populations in Canada (also known as First Nation). The largest language grouping is the Algonquin, which is Cree-Ojibwa; they also have the highest rate of diabetes. Diabetes prevalence is lowest in the Haida community in the west and in the Inuit communities in the north. In contrast to the U.S. Native American community, 70 percent of the First Nation inhabitants live on reserves, not in urban areas. In Manitoba, there are 60,000 First Nation inhabitants, 70 percent of whom live in small isolated villages in the north. Prevalence data from the 1990s from three regional diabetes registries all show type 2 diabetes prevalence between 1.7 per 1000 and 2.5 per 1000. Among three youth populations screened in the mid-1990s, prevalence rates averaged around 16 per 1000, that is, about 10 times higher than the prevalence rates from the registry data.
Dr. Dean identified four research priorities for future investigations: (1) Development of standard diagnostic criteria; (2) use of standard age groups (e.g., 0-4, 5-9, 10-14, 15-19); (3) universal differentiation between type 1 and type 2 diabetes in registry databases; and (4) acceptance of standardized, uniform methods for large-scale, population-based screening. She stressed that in screening initiatives in large populations, the protocols may have to be more practical (e.g., capillary blood glucose vs. drawn blood, random blood glucose instead of fasting blood glucose).
Dr. Linder also cited clinical reports from Dr. Dan Hale, Associate Professor of Pediatrics at the University of Texas Health Science Center at San Antonio, Texas. Of 669 pediatric patients seen by Dr. Hale and another practitioner between 1990 and 1998, 512 (77 percent) had type 1 diabetes; 123 (18 percent) had type 2 diabetes; and 34 (5 percent) had other types, such as unclassified, atypical, and maturity-onset diabetes of youth. During this time, there was a steady rise in the number of Mexican American type 2 diabetes pediatric patients, from approximately 2 per year to up to 30 per year. A similar rise in type 2 incidence in the African American and, only most recently, in the white communities has occurred. For the past 3 years, about 40 percent of the new pediatric diabetes diagnoses have been type 2, a substantial increase. Dr. Hale's data also show that although 100 percent of diabetic Mexican American children aged 5 or under have type 1 diabetes, 74 percent of all new diagnoses among Mexican American children over 15 years old are for type 2 diabetes. A similar type 1/type 2 distribution is seen among African American children; a lesser trend is seen among whites.
Another small survey conducted by Dr. Hale was based on data obtained through screening of about 1,500 children at three public middle schools in San Antonio. Nearly 60 percent of children surveyed had a family history of diabetes; 40 percent of the boys and 27 percent of the girls had a BMI greater than the 95 percentile; 29 percent had fasting hyperinsulinemia; 19 percent had acanthosis nigricans; 7 percent had impaired fasting glucose; and 1 percent had undiagnosed diabetes (presumably type 2). These children also had an adverse risk profile for coronary artery disease. Approximately 50 percent had elevated total cholesterol; 29 percent had a family history of hyperlipidemia; 27 percent had elevated triglyceride levels; 11 percent had a family history of myocardial infarction under the age of 50 in a parent or grandparent; 8 percent had low HDL cholesterol; 7 percent had high LDL cholesterol; and 3 percent of the girls and 15 percent of the boys had diastolic blood pressures greater than the 95 percentile for their age.
Dr. Linder summarized findings of a study by Dr. Lawrence Dolan, of the Children's Hospital Medical Center of Cincinnati, which included data on 128 pediatric patients diagnosed with type 2 diabetes between 1992 and 1998; the study population is predominantly African American and female. As of December 1998, the overall prevalence of type 2 diabetes for the greater Cincinnati area was 0.14 per 1,000 (0.014 percent) for children up to 19 years old; the children with type 2 diabetes tend to be female, African American, and in older adolescence (aged 15 to19). The overall incidence rate of type 2 diabetes increased greatly during 1992 and 1994; since then, the incidence rate has been relatively stable. Overall, Dr. Dolan's data show the average age for children with type 2 diabetes is 15.1 years, which does not vary much by gender or race. The average BMI is 36.3 (again no real difference by gender or race). Acanthosis nigricans is present in 71 percent of the population (African Americans, 82 percent; whites, 54 percent).
Many of these children exhibit complications common to type 2 diabetes, including blood pressure above the 90 percentile (corrected for age and height) in a fair number of the 66 patients for whom data were available; a statistically significant relationship between systolic pressure and BMI was observed. Further, among 27 patients tested, 23 (85 percent) had at least one lipid abnormality (elevated LDL, triglycerides, or cholesterol; or low HDL): 14 among 17 of the African Americans (82 percent) and 9 among 10 (90 percent) of the non-Hispanic whites. Among the 11 children with type 2 diabetes whose albumin excretion rate was checked to screen for diabetic nephropathy, 3 (27 percent) had elevated excretion rates (greater than 20 g/min as measured by timed overnight urine collection), signaling possible incipient nephropathy. Ophthalmologic abnormalities, such as retinopathy, were not seen in this population.
Dr. Dolan reported during the July 1999 DMICC meeting that within the diabetes center at the Cincinnati Children's Hospital, there has been no change over time in the diagnostic criteria for type 2 diabetes, the ethnic pattern of referrals, or the referral patterns by the practicing physicians. However, Dr. Dolan asserted that the hospital's patient database is probably a significant underestimate of the overall type 2 pediatric diabetes disease process. Evidence for this statement included Dr. Dolan's review of the chief complaint of patients on hospitalization: only 59 percent had the classic symptoms of polyuria and polydipsia; 40 percent had nonclassic symptoms, and 13 percent presented only with a positive urinalysis for glucose, obtained during a routine physical examination.
Dr. Linder similarly highlighted results of studies conducted by Dr. Silva Arslanian, Professor of Pediatrics at Children's Hospital of Pittsburgh. In one series of experiments, a hyperglycemic clamp was used to compare the amount of insulin secreted over 120 minutes while blood glucose was clamped at a constant, hyperglycemic level of 225 mg/dL in a group of healthy African American and white adolescent volunteers. Data showed that for the same glucose level, African Americans on average secrete significantly more insulin than do whites. From these experiments, Dr. Arslanian derived an insulin sensitivity index for each of the volunteers; insulin sensitivity was approximately 35 to 40 percent lower in the African American adolescents than in their matched white peers.
Additional experiments using CAT scans revealed that insulin sensitivity (controlling for BMI) is less in girls than in boys and is inversely proportional both to BMI and to total percent body fat. Fasting insulin levels, a marker of insulin resistance, also as expected, increase with increasing BMI, even when measured in normal nondiabetic children. Further data showed that insulin sensitivity declines (and fasting insulin levels increase) with increasing percentages of either visceral or subcutaneous fat (as a proportion of total body fat); however, the impact of excessive visceral fat was more deleterious than the impact of subcutaneous fat. Dr. Arslanian's findings suggest that the onset of puberty is associated with insulin resistance and that gender differences in insulin sensitivity need further evaluation with careful attention to body composition differences. For young children (10 years) with a family history of diabetes, insulin resistance is lower still and is seen before the onset of puberty, with peak insulin resistance occurring at 13 to 14 years of age.
Dr. Linder emphasized the collective importance of these findings, which suggest the need for accurate population-based screening among children. The key research goals identified during the July 1999 DMICC meeting included the following:
Gather better population-based incidence and prevalence data in children and adolescents.
Define initial metabolic abnormalities in type 2 diabetes.
Improve our understanding of the basis for racial and ethnic disparities in diabetes.
Develop effective primary prevention and treatment regimens and strategies.
In brief, the increasing prevalence of type 2 diabetes and related complications among young persons from childhood through their 30s, combined with the duration of the disease, signal a significant public health issue for this country that must be addressed aggressively.
CDC: State Programs and Tribal Peoples with Diabetes
Dr. JoAnne Pegler, Liaison, National Diabetes Prevention Center, CDC, provided a brief overview of some of the CDC's activities that relate to diabetes in children and Tribal peoples. The CDC's primary role in health care is to take a lead in addressing public health issues. The Division of Diabetes Translation, for example, is responsible for translating diabetes research findings into practice and disseminating this information as extensively as possible. Part of the CDC's role in addressing public health issues also involves efforts to close gaps in health disparities. The CDC has a long-standing relationship with IHS and is a partner with IHS in providing health-related services, in the new Diabetes Prevention Centers (at the University of Mexico, one Tribal college, and other locations), and the U.S./Mexico Border Project. The agency also oversees diabetes programs in all 50 States. Dr. Pegler announced that the CDC, in conjunction with the NIH, expects to release an RFA focused on type 2 diabetes in children sometime in late summer or fall 2000. The CDC also is sponsoring a regional conference on type 2 diabetes in children in New Mexico from August 28 through 31.
NDEP: American Indian and Alaska Native Programs
As Dr. Yvette Roubideaux, Clinical Assistant Professor, College of Public Health, University of Arizona, explained, the National Diabetes Education Program (NDEP) is a joint program of the CDC and NIDDK/NIH that includes public and private sector partners. The initial NDEP was challenged with developing educational messages that would reach diverse cultures. In the face of that challenge, the Program established several special work groups, including the American Indian Work Group, to assist the larger NDEP in disseminating important research findings and developing culturally appropriate diabetes education messages and products. Other work groups focus on issues unique to African Americans, Hispanic Americans, and Asian Americans/Pacific Islanders.
The NDEP American Indian Campaign has developed special messages intended for American Indian and Alaska Native populations using a broad-based media campaign that includes television, radio, print materials, community partnerships, the Internet, and toll-free telephone access. Key messages include "Control your Diabetes. For Life" and "Control your Diabetes for Future Generations." The campaign materials have been distributed to all 333 Indian health grant programs, and the program has received awards for the TV spots.
Continuing challenges include the increasing burden of diabetes in Indian populations; increasing demands for educational materials; the increasing need to reach out to children, families, and communities; continuing development of creative, informative resources, products, and messages to disseminate; and identifying resources to evaluate campaign outcomes.
More immediate future activities of the NDEP American Indian Campaign are the continued dissemination of current materials and the development and expansion of a youth focus for children aged 12 to 18 years.
ADA/American Indian Program--Awakening the Spirit: Pathways to Diabetes Prevention and Control
Ms. Lorraine Valdez, Nursing Consultant, IHS National Diabetes Program, described the ADA's American Indian Program, "Awakening the Spirit--Pathways to Diabetes Prevention and Control." This program, developed by Native Americans in partnership with volunteer ADA Diabetes Educators and the ADA Native American Program Design Team, was established in 1997 and launched in 1999 with a Powwow attended by more than 200. The main messages of the program are "Strong in Body and Spirit" and hope that diabetes mellitus can be delayed or prevented. The program's primary goals and objectives include disseminating messages, providing interventions to ADA staff and Tribal communities, developing working relationships with ADA and others, and increasing awareness among Tribes of ADA as a resource and partner. Ms. Valdez noted that early stages of the program were described through a series of articles in the ADA magazine, Diabetes Forecast.
Future Directions: Type 2 Diabetes in American Indian and Alaska Native Children
Drs. Garfield and Spiegel thanked the presenters and attendees for their participation, time, and input. Dr. Spiegel then noted several upcoming NIH activities, including the July 18th meeting on the possibility of developing and implementing a National Kidney Disease Education Program (NKDEP) that would mirror the NDEP and similar programs; the upcoming release of several RFAs for research on type 2 diabetes; and NIH's development of a strategic plan to reduce health disparities, of which NIDDK's plan emphasizing diabetes and obesity is a significant component.
Mr. Buford Rolin offered concluding remarks on behalf of the Tribal Leadership Support Group. Recognizing the integral role of partnerships in improving health care, he thanked all who attended the meeting and expressed interest in continued efforts to work together to eliminate the devastating effects of diabetes.
Dr. Allen Spiegel adjourned the meeting at 4:20 p.m.