[Senate Hearing 111-732]
[From the U.S. Government Publishing Office]


                                                        S. Hrg. 111-732
 
     A WAY OUT OF THE DIABETES CRISIS IN INDIAN COUNTRY AND BEYOND 

=======================================================================

                                HEARING

                               before the

                      COMMITTEE ON INDIAN AFFAIRS
                          UNITED STATES SENATE

                     ONE HUNDRED ELEVENTH CONGRESS

                             SECOND SESSION

                               __________

                             JUNE 30, 2010

                               __________

         Printed for the use of the Committee on Indian Affairs

                               ----------
                         U.S. GOVERNMENT PRINTING OFFICE 

62-518 PDF                       WASHINGTON : 2010 

For sale by the Superintendent of Documents, U.S. Government Printing 
Office Internet: bookstore.gpo.gov Phone: toll free (866) 512-1800; 
DC area (202) 512-1800 Fax: (202) 512-2104 Mail: Stop IDCC, 
Washington, DC 20402-0001 

















                      COMMITTEE ON INDIAN AFFAIRS

                BYRON L. DORGAN, North Dakota, Chairman
                 JOHN BARRASSO, Wyoming, Vice Chairman
DANIEL K. INOUYE, Hawaii             JOHN McCAIN, Arizona
KENT CONRAD, North Dakota            LISA MURKOWSKI, Alaska
DANIEL K. AKAKA, Hawaii              TOM COBURN, M.D., Oklahoma
TIM JOHNSON, South Dakota            MIKE CRAPO, Idaho
MARIA CANTWELL, Washington           MIKE JOHANNS, Nebraska
JON TESTER, Montana
TOM UDALL, New Mexico
AL FRANKEN, Minnesota
      Allison C. Binney, Majority Staff Director and Chief Counsel
     David A. Mullon Jr., Minority Staff Director and Chief Counsel

















                            C O N T E N T S

                              ----------                              
                                                                   Page
Hearing held on June 30, 2010....................................     1
Statement of Senator Dorgan......................................     1
Statement of Senator Johnson.....................................     5
Statement of Senator Tester......................................     5

                               Witnesses

Baker, Caitlin, Member, Muscogee Creek Nation....................    36
    Prepared statement with attachments..........................    38
Fradkin, Judith E., M.D., Director, Division of Diabetes, 
  Endocrinology and Metabolic Diseases, National Institute of 
  Diabetes and Digestive and Kidney Diseases, National Institutes 
  of Health, U.S. Department of Health and Human Services........     7
    Prepared statement...........................................    10
Hall, Jr., Gary, Three-time Olympian Swimmer, Ten-time Olympic 
  Medalist.......................................................    28
    Prepared statement...........................................    30
McCabe, Melvina, M.D., President, Association of American Indian 
  Physicians.....................................................    31
    Prepared statement...........................................    34
Studi, Wes, Professional Actor; Member, Cherokee Nation..........    24
    Prepared statement...........................................    26

                          Additional Testimony

Burger, Isabel ``Izzy'', Member, Little River Band of Ottawa 
  Indians........................................................    57

                                Appendix

National Indian Health Board, prepared statement.................    63
The Special Diabetes Programs--Stories of Hope and Progress......    67


     A WAY OUT OF THE DIABETES CRISIS IN INDIAN COUNTRY AND BEYOND

                              ----------                              


                        WEDNESDAY, JUNE 30, 2010


                                       U.S. Senate,
                               Committee on Indian Affairs,
                                                    Washington, DC.
    The Committee met, pursuant to notice, at 9:40 a.m. in room 
628, Dirksen Senate Office Building, Hon. Byron L. Dorgan, 
Chairman of the Committee, presiding.

          OPENING STATEMENT OF HON. BYRON L. DORGAN, 
                 U.S. SENATOR FROM NORTH DAKOTA

    The Chairman. We are going to now turn to the Oversight 
Hearing on the issue of diabetes, which is a crisis in Indian 
Country.
    I am going to ask the witnesses for the hearing to please 
take their position at the table.
    I am going to ask, if I might, the permission of Dr. Judith 
Fradkin, M.D., the Director, Division of Diabetes, 
Endocrinology and Metabolic Diseases at the National Institutes 
of Diabetes and Digestive and Kidney Diseases, NIH, if you will 
take your seat at the table.
    I would like to ask your permission if I might bring the 
other four witnesses to the table at the same time and we will 
hear from Dr. Fradkin first. Let me ask Mr. Wes Studi to come 
to the table, Mr. Gary Hall, Dr. Melvina McCabe and Ms. Caitlin 
Baker.
    Let me thank all of you for taking the time to travel here 
and to come to a hearing on what I think is a very important 
subject. This is not the first time that we have had hearings 
on the subject of diabetes, particularly as it affects American 
Indians.
    The high prevalence of diabetes among Native Americans and 
across the United States is not something we can ignore. But, 
if you take a look at the prevalence of diabetes on Indian 
reservations, it is extraordinary.
    I recall, over two decades ago, flying one morning into the 
Three Affiliated Tribes, the Fort Berthold Indian Reservation, 
to hold a hearing with then Congressman Penny of Minnesota and 
the late Congressman from Texas Mickey Leland, and we held a 
hearing on the Indian Reservation at Fort Berthold on the 
subject of diabetes.
    We had many people attend the hearing, who had lost arms 
and legs, who were on dialysis, who had chronic health 
problems, and they described a rate of diabetes that was ten 
times the national average. Not double, triple, quadruple, five 
times, but ten times the national average. They said that adult 
Indians on that reservation over the age of 40, 50 percent of 
them had diabetes.
    Ultimately, I was able to help create and get funding for a 
diabetes treatment center and now they have a dialysis unit 
there. But it was the first time that I had had my eyes opened 
about this unbelievable scourge called diabetes, particularly 
as it affects American Indians.
    Diabetes is a disease that is on the rise all across our 
Country and it is a very serious issue. But a lot of people do 
not understand that it is a much more chronically prevalent 
issue on Indian reservations.
    I want to have a chart put up that shows that over 24 
million people in this Country now have diabetes, 6 million 
undiagnosed and close to 50 million who are borderline 
diabetic.
    The Chairman. As you can see on this chart, the prevalence 
of diabetes in this Country has increased more than fourfold 
over 30 years. The burden of this disease is even much more 
substantial, if we can show the second chart, on Indian 
reservations, among Native Americans.
    [The information referred to follows:]
    
    [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]
    
    The Chairman. Native Americans suffer the highest 
prevalence for diabetes of any population in our Country. As 
the second chart shows, more than 16 percent of American 
Indians suffer from diabetes. That is an average of all Native 
Americans. In fact, in some tribal communities, such as one in 
Arizona, more than 70 percent of the population has been 
diagnosed with diabetes.
    The outdated and the under-funded healthcare system on 
Indian lands also, I think, hinders the ability of Native 
Americans with diabetes from getting the kind of necessary 
treatment that is required. For the most part, this can be a 
treatable disease. But the lack of adequate treatment can lead 
to kidney failure, blindness, heart failure, stroke, amputation 
and more.
    A prime example is kidney failure. Native Americans are 
more than three times as likely as the general population to 
suffer from kidney failure as a result of diabetes. Kidney 
failure almost always requires dialysis. But until the passage 
of the Indian Healthcare Improvement Act just several months 
ago, a piece of legislation that we wrote in this Committee, 
the Indian Health Service did not have the authority to provide 
dialysis services to Native Americans suffering kidney failure. 
We need to improve diabetes treatment in a very substantial 
way.
    The Special Diabetes Program, first authorized in 1997, is 
a proven effort in combating diseases and diabetes. This 
program has led to clinical advancements in delaying the onset 
of diabetes and reducing the risk of serious complications, 
providing key programs to Native Americans.
    The Special Diabetes Program funding is going to expire in 
2011. I have introduced legislation to reauthorize the program 
and I am proud to say that that bill now has 60 U.S. Senators 
as co-sponsors. I am working hard for the passage of this bill 
so that program can continue. It is very important.
    As I close, I want to share a story with you that I think 
highlights how important it is that we work for a cure for 
diabetes. I have a photograph here that I show you with the 
permission of the relatives. This is Isabel ``Izzy'' Burger. 
She is 11 years old and a member of the Little River Band of 
Ottawa Indians. Diagnosed with diabetes in 2007. She is a 
normal kid that likes to fish, hike, spend time with friends, 
but diabetes is always on her mind, always on her mind day and 
night.
    Her parents are fortunate to have private insurance, but 
they still face thousands and thousands of dollars in medical 
bills each year so that she can get the care she needs. And 
perhaps even harder she, like other diabetics, has to monitor 
her blood sugar levels and stick herself multiple times a day 
for testing. And in order for her to play at a friend's house, 
to run outside, or even eat lunch at school, she has to prick 
her finger and check her blood sugar.
    She once wrote a letter to the President of the United 
States to talk about the issues that impact the lives of 
diabetic kids every single day. I believe that Izzy is with us 
here today. Izzy are you here? Can you stand up?
    We thank you very much for being with us today. We thank 
you for witnessing the kind of circumstances and the kind of 
treatment that is needed for diabetics of all ages, but 
especially diabetics who are young people who live on Indian 
reservations. Izzy, thank you for being with us. That is a 
pretty good picture of you, by the way.
    [Laughter.]

    [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]
    
    The Chairman. Let me, before I call on the witnesses, call 
on my colleagues for any comments. Again, as I said, we have 
held a number of hearings on diabetes because, if you go onto a 
reservation, you are not there very long without understanding 
that diabetes is a very special scourge to Native Americans. 
And it is something that we just have to continue to try to put 
all the spotlights together to find ways to address this.
    The Chairman. Senator Johnson?

                STATEMENT OF HON. TIM JOHNSON, 
                 U.S. SENATOR FROM SOUTH DAKOTA

    Senator Johnson. Thank you, Mr. Chairman, for holding this 
critical, important hearing. Too many of our Native people are 
affected by or susceptible to this devastating disease. The 
rates throughout Indian Country only continue to grow. I am 
looking forward to this testimony this morning as we seek 
solutions to reverse this trend.
    Thank you.
    The Chairman. Senator Tester?

                 STATEMENT OF HON. JON TESTER, 
                   U.S. SENATOR FROM MONTANA

    Senator Tester. Yes, thank you, Mr. Chairman. And, as 
always, I appreciate you bringing forth an issue that is 
critically important to Indian Country, critically important to 
the Country as a whole. As I go around the State of Montana and 
visit with my friends in Indian Country, almost without 
exception healthcare is the number one issue and diabetes is 
the number one issue when we talk about healthcare in Indian 
Country.
    And we have got to have healthy adults to have good 
parents. And we have got to have healthy kids to be good 
students. And we need healthy elders for good roll models.
    The statistics are plain, they are clear. We have got an 
incredible problem that we need to do our level best to 
address, 2.6 times more likely to be diagnosed with diabetes if 
you are Native American. The death rate is 3 times higher from 
diabetes than the rest of society.
    There are opportunities out there. Education, of course, is 
one of the keys. Education on the traditional skills, fitness 
and recreation, foods and recipes, expertise consulting service 
and provisions of instructional material, all those things are 
critically important to utilize through travel colleges and 
high schools and elementary schools as we go forth.
    There is one other thing that I think we should be doing. 
We should really be focusing on technology and stem cell 
research and those kinds of things to really get to the root of 
it with Indian Country a part of those research projects.
    It is, we have had, or I have been a part of at least, 
several hearings on diabetes, both in this Committee and other 
Committees. It is, from my perspective, and I am not a 
diabetic, but I have got a close, close personal friend who is, 
it is a terrible disease to have to live with because, as 
Senator Dorgan pointed out as the picture of Izzy was up on the 
board, it is something that I think diabetics think about every 
day when they wake up and every night when they go to bed and 
the time that is in between. It has incredible challenges 
associated with it.
    So, hopefully this hearing will step us on a path to really 
come forth with some solutions and ideas to address this 
problem in Indian Country and, quite honestly, throughout the 
Country. I think it behooves us all to address it here because 
it is such an epidemic, but also throughout the whole Country. 
So, hopefully in Indian Country we can lead the way on this.
    Thank you, Mr. Chairman. I appreciate the opportunity.
    The Chairman. Senator Tester, thank you very much. Senator 
Tester and I held a hearing on the Crow Nation Indian 
Reservation in Montana a while ago, and the discussion included 
the issue of diabetes. This is true of almost any hearing on 
any reservation.
    I want to introduce all of the witnesses and then I will 
call on Dr. Judith Fradkin first.
    Dr. Fradkin is a medical doctor with the National 
Institutes of Health conducting research on diabetes and she is 
going to tell us about diabetes and the progress made in that 
field in recent years. Dr. Fradkin, thank you very much for 
being with us.
    Mr. Wes Studi is an actor and a Native American health 
advocate in Santa Fe, New Mexico. I know Mr. Studi, not 
personally, but I know him from the Last of the Mohicans and 
from Dances with Wolves, two movies that I enjoyed very much 
and enjoyed especially your performance, Mr. Studi.
    He is an actor and Native American health advocate living 
in Santa Fe, New Mexico and he will highlight the prevalence of 
diabetes in the United States, including in tribal communities, 
and talk about what is being done to address the rate of 
diabetes and what more can and must be done to combat the 
disease.
    Mr. Gary Hall is an Olympian swimmer and, like most 
swimmers, is a tall guy. I met him this morning. I had not met 
Mr. Hall before, but all very fast swimmers seem to me to be 
fairly tall. He is a three-time Olympian and a ten-time Olympic 
medalist in swimming. He will talk about his own experience 
living as a competitive athlete with Type I Diabetes.
    He will also testify about recent advances in diabetes 
management and progress and trying to find a cure. He has his 
own foundation dedicated to raising awareness and funding 
diabetes research.
    Dr. Melvina McCabe is a physician, the President of the 
Association of American Indian Physicians in Albuquerque, New 
Mexico. She will describe recent research conducted on the 
prevalence of diabetes among Native Americans including 
prevention, education and treatment. Also, her experience, she 
will discuss, as a physician working with tribal communities in 
trying to prevent treating diabetes.
    And finally, Caitlin Baker is a 16-year-old Muscogee Creek 
Indian from Oklahoma, a Native American youth and competitive 
swimmer. She works with Native youth, educating them on the 
importance of a healthy lifestyle including the importance of 
diabetes prevention. She will discuss these efforts and her 
organization. Her organization is CAITLINB, which stands for 
Competitive American Indians Turning Lifestyles Into New 
Beginnings, a clever use of your name, I might say.
    [Laughter.]
    The Chairman. Let us begin with Dr. Fradkin. Thank you very 
much for being with us, and thanks for your work at the 
National Institutes of Health. You may proceed.
    And I would say to all of the witnesses that your entire 
statement will be made a part of the permanent record of this 
Committee, so you are free to summarize.

        STATEMENT OF JUDITH E. FRADKIN, M.D., DIRECTOR, 
            DIVISION OF DIABETES, ENDOCRINOLOGY AND 
    METABOLIC DISEASES, NATIONAL INSTITUTE OF DIABETES AND 
            DIGESTIVE AND KIDNEY DISEASES, NATIONAL 
   INSTITUTES OF HEALTH, U.S. DEPARTMENT OF HEALTH AND HUMAN 
                            SERVICES

    Dr. Fradkin. Mr. Chairman and Members of the Committee, as 
Director of the Division of Diabetes, Endocrinology and 
Metabolic Diseases at the National Institute of Diabetes and 
Digestive and Kidney Diseases, thank you for the invitation to 
participate and testify at this hearing on diabetes.
    On behalf of the NIDDK and the National Institutes of 
Health, I am pleased to report that we are vigorously pursing 
research on diabetes and its complications. A high priority of 
NIH-supported research is to understand and to eliminate the 
disproportionate burden that diabetes places on minority groups 
including American Indians, the population, as you just noted, 
that has the highest rate of diabetes in the United States.
    Today I would like to tell you about NIH-supported diabetes 
research, including research supported by the Special Statutory 
Funding Program for Type I Diabetes Research, which the NIDDK 
administers.
    This program was established by Congress for research on 
the prevention and cure of Type I Diabetes and has resulted in 
many scientific advances that are improving the health and 
quality of life of people with diabetes.
    A parallel funding stream, the Special Diabetes Program for 
Indians, is administered by the Indian Health Service and has 
led to substantial improvements in diabetes care in the 
American Indian population.
    Mr. Chairman, the need to pursue research on the 
prevention, treatment and cure of diabetes is greater than ever 
because the rates of several types of diabetes are rising. The 
good news is that we have made tremendous progress in recent 
years which has led to improvements in survival and quality of 
life for people with diabetes.
    Now, thanks to continuous glucose monitoring technology, 
some parents of young children with Type I Diabetes can sleep 
through the night without having to arise repeatedly to check 
the child's blood glucose levels. This device measures blood 
glucose levels every few minutes and sounds an alarm if levels 
are above or below target, a technological peace of mind 
allowing parents to sleep more soundly. The development of this 
technology was supported, in part, by the NIH's Special 
Diabetes Program.
    Because genetic and antibody tests can now predict with 
great accuracy which children will develop Type I Diabetes, we 
can now test prevention strategies. To find new approaches to 
prevention, we launched the TEDDY study, which is supported by 
the Special Diabetes Program.
    TEDDY researchers have screened over 400,000 newborns to 
determine if they have genes that put them at increased risk 
for Type I Diabetes. Over 8,000 of these newborns are enrolled 
in the study and are being followed until age 15, with a goal 
of identifying environmental triggers of Type I Diabetes.
    To date, the number of children who have developed 
autoimmunity and Type I Diabetes is exactly as predicted, 
showcasing the tremendous power of these predictive tests.
    The Special Diabetes Program's SEARCH for Diabetes in Youth 
study is, for the first time, telling us how many children in 
the U.S. have diabetes, and we will be able to see how these 
rates change over time.
    We can prevent or delay the development of Type II Diabetes 
in people at high risk for this disease as demonstrated by the 
NIDDK-led Diabetes Prevention Program clinical trial. A modest 
amount of weight loss through diet changes and moderate 
exercise substantially reduced the occurrence of Type II 
Diabetes at 3, and now at 10 years, after enrollment in the 
trial.
    This intervention worked in all ethnic and racial groups 
studied, including American Indian populations. The IHS has 
utilized funding from the Special Diabetes Program for Indians 
to launch prevention efforts based on these findings.
    For people who already have diabetes, IHS efforts supported 
by the Special Diabetes Program for Indians have improved blood 
glucose control among American Indian populations as measured 
by the A1c test. This is important because NIH-sponsored trials 
found that good A1c control reduced rates of diabetes 
complications.
    The Type I Diabetes Special Program has supported 
successful efforts to standardize A1c measurements in clinical 
laboratories across the Country so physicians can reliably 
monitor glucose control. This standardization has made possible 
improvements in A1c levels nationwide, including in vulnerable 
populations such as American Indians and Alaskan Natives.
    Diabetes during pregnancy brings risk to mother and child. 
Because of the NIH-supported Hyperglycemia and Adverse 
Pregnancy Outcome Study, we now have precise information on 
what blood glucose levels should be during pregnancy to avoid 
complications near birth.
    These are just a few examples of how far we have come in 
recent years through vigorous support of research toward 
increasing knowledge of diabetes and improving the health of 
people with the disease. However, much work needs to be done to 
curb the diabetes epidemic.
    For example, it is critical to move beyond continuous 
glucose monitoring technology and link glucose monitoring to 
insulin delivery to create a so-called artificial pancreas. 
This technology could help patients achieve good blood glucose 
control that has been shown to reduce complications and 
alleviate the burden of self-care that you just spoke about so 
eloquently.
    Now that we have thousands of samples collected through the 
TEDDY Study, it is vital to use new and emerging technologies 
to analyze those samples and identify environmental triggers of 
Type I Diabetes.
    Building on the success of many new available medicines for 
Type II Diabetes, comparative effectiveness research can help 
inform doctors' decisions about what medications to prescribe 
for their patients and when.
    Perhaps most important to combating the diabetes epidemic 
is reversing the trend of both Type I and Type II Diabetes 
occurring at younger ages because earlier onset of disease 
means earlier development of complications and premature 
mortality.
    For women, earlier development of diabetes also endangers 
her offspring. The inter intrauterine environment plays an 
important role, not only in problems at the time of birth, but 
also in the future development of diabetes and obesity, a 
finding observed among the Pima Indians in Arizona. Thus, it is 
critical to pursue research to break the vicious cycle of ever-
growing rates of diabetes by preventing or mitigating the 
effects of diabetes and obesity during childbearing years and 
pregnancy.
    By building on recent advances in diabetes research, we are 
poised to realize even greater improvements in the health and 
quality of life of people with diabetes. We have come far, but 
we must come further.
    Thank you, Mr. Chairman, for your leadership in calling 
this hearing to continue focusing attention on the importance 
of diabetes research and for your continued support of NIH 
research.
    [The prepared statement of Dr. Fradkin follows:]

 Prepared Statement of Judith E. Fradkin, M.D., Director, Division of 
 Diabetes, Endocrinology and Metabolic Diseases, National Institute of 
  Diabetes and Digestive and Kidney Diseases, National Institutes of 
          Health, U.S. Department of Health and Human Services

[GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]

    The Chairman. Dr. Fradkin, thank you very much for your 
testimony. There is some hopeful testimony in that statement. I 
appreciate that a lot.
    Mr. Studi, I did not mention, I see from the biography that 
you also were involved in the film Avatar but, since I am one 
of the few Americans, based on gross receipts from the box 
office, that did not see Avatar, I forgot to mention----
    Mr. Studi. That is three people that I know now.
    [Laughter.]
    The Chairman. Yes, well, Senator Tester and I are two of 
the three.
    [Laughter.]
    Mr. Studi. You were supposed to keep that to yourself.
    [Laughter.]
    Mr. Studi. There is a rumor it may be re-released, this 
summer.
    [Laughter.]
    The Chairman. Thank you for being here, and why don't you 
proceed.

 STATEMENT OF WES STUDI, PROFESSIONAL ACTOR; MEMBER, CHEROKEE 
                             NATION

    Mr. Studi. Chairman Dorgan and other members of the 
Committee, I am honored to be here this morning. And thank you 
for the opportunity to participate in today's Oversight Hearing 
entitled A Way Out of the Diabetes Crisis in Indian Country.
    My name is Wes Studi and I am a member of the Cherokee 
Nation of Oklahoma. And while I currently reside in Santa Fe, 
New Mexico, I was born in a place in called Nofire Hollow 
between Tahlequah and Stillwell in Northeastern Oklahoma.
    Now, as a son of a ranch worker, I attended a number of 
elementary schools throughout Northeastern Oklahoma and finally 
wound up at a Chilocco Indian agricultural school in Northern 
Oklahoma as a high schooler.
    My first language is Cherokee and I strongly believe in the 
importance of handing down our language, customs and rich 
traditions from one generation to the next. I have written two 
children's books in Cherokee and English both for the Cherokee 
Bilingual Education Cross Cultural Center in Tahlequah, 
Oklahoma and I am proud also to have served our nation in 
combat during the Vietnam War.
    And I am very fortunate to have a very, well, I say very, 
successful film career. I played roles in several, or many 
motion pictures actually, including Dances with Wolves, the 
Last of the Mohicans, Geronimo and, yes, as you mentioned, the 
recent Avatar.
    Now, in my film career, I have often portrayed fearless 
leaders who have battled and fought against formidable 
challenges. I am also very proud to be here today to honor, 
actually more proud to be here to honor the leaders in American 
Indian and Alaska Native communities who have committed 
themselves to the fight against diabetes.
    Now, I am not a scientist or a doctor. I am simply a tribal 
member who fully understands the toll diabetes has taken, and 
it reaches far beyond the tribal communities. And clearly, the 
United States has a diabetes epidemic on its hands.
    While we are now beginning to see the costly and damaging 
effects of this disease in the rest of the nation, it is a 
problem that is all too familiar for those of us in the Indian 
Country. For years, Type II Diabetes has ravaged tribal 
communities and has had a devastating physical, emotional and 
spiritual impact on our people.
    I have family members and friends living with diabetes and 
I know people in our community who have endured amputations and 
other devastating complications of diabetes as a result of not 
having access to quality diabetes care.
    Our American Indian and Alaska Native communities have the 
highest rate of diabetes, as you mentioned, more than double 
the prevalence of the general population. In some of our 
communities, more than half of all adults have been diagnosed 
with diabetes and diabetes in our youth is on the rise.
    We suffer the highest rates of complications and mortality 
from diabetes, more than three times the national average. We 
are getting diabetes at earlier ages and are dying in greater 
numbers from the disease when compared with the rest of the 
Nation.
    However, our story is not just one of suffering, misery and 
despair. It is also a story of great perseverance, 
determination and hope for the future. Tribal communities have 
come together to fight back against diabetes and the 
destruction it has wrought. Across Indian Country, there are 
inspiring stories of elders, community leaders, women, men and 
children who have been empowered with the knowledge, and tools, 
to effectively combat this disease.
    This great work and progress is not accomplished by tribal 
communities alone. It takes a partnership with and resources 
from the Federal Government to support the continued research, 
education, outreach and range of services that have gone into 
this momentous effort. The success of the Special Diabetes 
Program, SDP, in particular demonstrates what can be 
accomplished when we work together.
    Established more than a decade ago, the Special Diabetes 
Program, made up of the Special Diabetes Program for Indians 
and the Special Diabetes Program for Type I Diabetes, has made 
significant strides against this disease and has dramatically 
improved the lives of those with, and risk for, diabetes.
    The SDPI now has a presence in 35 States and supports over 
450 Indian Health Service tribal and urban Indian health 
programs. It has allowed tribal communities to implement a wide 
range of strategies to address the burden of diabetes in a 
manner that is most effective and culturally appropriate for 
our diverse and unique communities.
    These efforts have shown great success in managing the 
disease by delaying or eliminating the development of 
complications and, in some people, preventing the onset of 
diabetes altogether.
    The American Diabetes Association, the National Indian 
Health Board and the Juvenile Diabetes Research Foundation 
recently joined together to collect stories from many people 
whose lives have benefitted from the Special Diabetes Program. 
The strength, courage and resolve of these citizens rival any 
of the characters I have ever played on the big screen. I would 
like to highlight the story of one woman from North Carolina 
who has taken control of her diabetes and her life.
    Ulela Harris of the Eastern Band of Cherokee Indians was 
diagnosed with diabetes in 1993. Now, although she had eight 
brothers and sisters with diabetes and lost both her father and 
sister to complications from the disease, she still did not 
understand what diabetes was and lacked the knowledge to manage 
it effectively. At the time of her diagnosis, there was limited 
clinical support for diabetes management and she was seen by a 
nutritionist and sent home with medications.
    After many years of insulin injections and oral 
medications, her blood sugar levels were still dangerously high 
and, in 2007, Ulela joined the Cherokee Diabetes Prevention 
Program, which provided her access to the critical case 
management and diabetes education she needed to manage her 
diabetes.
    One year later, she was able to bring her diabetes under 
control and no longer required insulin or oral diabetes 
medication. Through this program, she also lost 35 pounds and 
has been motivated to take on new challenges such as the First 
Annual Cherokee Ironman-Ironwoman Triathlon.
    It is through the power of story that our American Indian 
and Alaska Native culture and traditions are passed on from one 
generation to the next. And Ulela's story is one of the many 
being told throughout our communities that are gradually 
replacing stories of the fear and pain of diabetes with new 
stories of inspiration and hope for our future generations.
    Native people have made significant contributions to the 
current understanding of effective diabetes treatment and 
prevention. The research conducted among the Pima Indians in 
the early 1960s alerted this nation to the epidemic of diabetes 
today.
    Today, we are proving that given the appropriate resources 
and tools to address diabetes, we can make great progress in 
conquering the challenges of diabetes and saving lives.
    While we have hope for the future, the journey is far from 
over. To continue on this path of hope and progress, we need 
more resources to conduct research, provide assistance, and 
purchase the medications necessary, the medications necessary 
to sustain and expand our SDPI diabetes treatment and 
prevention programs.
    I would like to personally thank you, Chairman Dorgan, for 
your commitment to the health and well-being of Native people, 
especially for your leadership to reauthorize the Special 
Diabetes Program. With ongoing support from members of this 
Committee, the Congress, tribal communities and the Indian 
Health System, we can continue to work in partnership to change 
the landscape of diabetes and transform the overall health and 
wellness of American Indian and Alaska Native people.
    Together, we can continue to fight diabetes, for our 
ancestors, our tribal communities and our future generations.
    Thank you so much for the opportunity to be here today. 
Thank you so much.
    [The prepared statement of Mr. Studi follows:]

 Prepared Statement of Wes Studi, Professional Actor; Member, Cherokee 
                                 Nation
    Chairman Dorgan, Vice Chairman Barrasso, other members of the 
Committee, I am honored to be here this morning. Thank you for the 
opportunity to participate in today's oversight hearing entitled ``A 
Way Out of the Diabetes Crisis in Indian Country and Beyond.''
    My name is Wes Studi and I am an enrolled member of the Cherokee 
Nation. While I currently reside in New Mexico, I was born in Nofire 
Hollow, Oklahoma (between Stillwell and Tahlequah). As the son of a 
ranch worker, I attended a number of elementary schools growing up but 
settled on the Chilocco Indian Boarding School in Northern Oklahoma as 
a teenager. My first language is Cherokee and I strongly believe in the 
importance of handing down our language, customs, and rich traditions 
from one generation to the next. I have written two children's books in 
Cherokee for the Cherokee Bilingual/Cross Cultural Education Center.
    I am proud to have served our nation in combat during the Vietnam 
War, and I am very fortunate to have a successful film career. I have 
played roles in several major motion pictures including, ``Dances with 
Wolves,'' ``Last of the Mohicans,'' ``Geronimo: An American Legend,'' 
and most recently ``Avatar.'' In my film career I have often portrayed 
fearless leaders who have battled and fought against formidable 
challenges.
    I am also very proud to be here today to honor the leaders in 
American Indian and Alaska Native communities who have committed 
themselves to the fight against diabetes.
The Burden of Diabetes in American Indian/Alaska Native Populations
    I'm not a scientist or a doctor; I am a tribal community member, 
who fully understands the toll diabetes has taken, reaching far beyond 
our tribal communities. Clearly, the United States has a diabetes 
epidemic on its hands. While we are now beginning to see the costly and 
damaging effects of this disease in rest of the nation, it is a problem 
that is all too familiar for those of us in Indian Country. For years, 
type 2 diabetes has ravaged tribal communities and has had a 
devastating physical, emotional, and spiritual impact on our people. I 
have family and friends living with diabetes and I know people in our 
community who have endured amputations and other devastating 
complications of diabetes as a result of not having access to quality 
diabetes care.
    Our American Indian and Alaska Native communities have the highest 
rates of diabetes--more than double the prevalence of the general 
population. In some of our communities, more than half of all adults 
have been diagnosed with diabetes and diabetes in our youth is on the 
rise. We suffer the highest rates of complications and mortality from 
diabetes, more than three times the national average. We are getting 
diabetes are earlier ages and are dying in greater numbers from the 
disease when compared with the rest of the nation.
The Battle Against Diabetes
    However, our story is not just one of suffering, misery and 
despair--it is also a story of great perseverance, determination and 
hope for the future. Tribal communities have come together to fight 
back against diabetes and the destruction it has wrought. Across Indian 
Country, there are inspiring stories of elders, community leaders, 
women, men, and even children, who have been empowered with the 
knowledge and tools to effectively combat this disease.
    This great work and progress is not accomplished by tribal 
communities alone. It takes a partnership with, and resources from, the 
federal government to support the continued research, education, 
outreach, and range of services that have gone into this momentous 
effort. The successes of the Special Diabetes Program (SDP) in 
particular demonstrate what can be accomplished when we work together.
    Established more than a decade ago, the Special Diabetes Program, 
made up of the Special Diabetes Program for Indians (SDPI) and the 
Special Diabetes Program for Type 1 Diabetes, has made significant 
strides against this disease and have dramatically improved the lives 
of those with, and at risk for, diabetes. The SDPI now has a presence 
in 35 states and supports over 450 Indian Health Service, Tribal and 
Urban Indian health programs. It has allowed tribal communities to 
implement a wide range of strategies to address the burden of diabetes 
in a manner that is most effective and culturally appropriate for our 
diverse and unique communities. These efforts have shown great success 
in managing the disease by delaying or eliminating the development of 
complications, and in some people, preventing the onset of diabetes all 
together.
Taking Control
    The American Diabetes Association, the National Indian Health 
Board, and the Juvenile Diabetes Research Foundation recently joined 
together to collect stories from the many people whose lives have 
benefitted from the Special Diabetes Program. The strength, courage and 
resolve of these citizens rival any of the characters I have portrayed 
on the big screen. I would like to highlight the story of one woman 
from North Carolina who has taken control of her diabetes and her life. 
Ulela Harris of the Eastern Band of Cherokee Indians was diagnosed with 
diabetes in 1993. Although she had eight brothers and sisters with 
diabetes and lost both her father and sister to complications from the 
disease, she still didn't understand what diabetes was and lacked the 
knowledge to manage it effectively. At the time of her diagnosis, there 
was limited clinical support for diabetes management and she was seen 
by a nutritionist and sent home with medications. After many years of 
insulin injections and oral medications, her blood sugar levels were 
still dangerously high. In 2007, Ulela joined the Cherokee Diabetes 
Prevention Program, which provided her access to the critical case 
management and diabetes education she needed to self manage her 
diabetes. One year later, she was able to bring her diabetes under 
control and no longer required insulin or oral diabetes medications. 
Through this program, she lost 35 pounds and has been motivated to take 
on new challenges, such as the first annual Cherokee Ironman-Ironwoman 
Triathlon.
    It is through the power of story that our American Indian and 
Alaska Native culture and traditions are passed on from one generation 
to the next. Ulela's story is one of the many being told throughout our 
communities that are gradually replacing stories of the fear and pain 
of diabetes with new stories of inspiration and hope for our future 
generations.
Hope for the Future
    Native people have made significant contributions to the current 
understanding of effective diabetes treatment and prevention. The 
research conducted among the Pima Indians in the early 1960's alerted 
this nation to the epidemic of diabetes. Today, we are proving that, 
given the appropriate resources and tools to address diabetes, we can 
make great progress in conquering the challenges of diabetes and saving 
lives.
    While we have hope for the future, the journey is far from over. To 
continue on this path of hope and progress, we need more resources to 
conduct research, provide assistance, and purchase the medications 
necessary to sustain and expand our SDPI diabetes treatment and 
prevention programs.
    I would like to personally thank you Chairman Dorgan for your 
commitment to the health and well being of our Native people, 
especially for your leadership to reauthorize the Special Diabetes 
Program. With ongoing support from members of this committee, the 
Congress, tribal communities, and the Indian health system, we can 
continue to work in partnership to change the landscape of diabetes and 
transform the overall health and wellness of American Indian and Alaska 
Native people. Together, we can continue to fight diabetes, for our 
ancestors, our tribal communities and our future generations.
    Thank you for the opportunity to be here before you today. I would 
be happy to answer any questions you may have for me.

    The Chairman. Mr. Studi, thank you very much for your 
passion and your willingness to come to Washington, D.C. and 
provide that testimony.
    And Mr. Gary Hall. Mr. Hall, thank you for traveling here 
as well. I believe you told me you are from Seattle, so that is 
some long distance. We appreciate your work and your 
willingness to testify. You may proceed.

 STATEMENT OF GARY HALL, JR., THREE-TIME OLYMPIAN SWIMMER, TEN-
                     TIME OLYMPIC MEDALIST

    Mr. Hall. Good morning. Thank you, Chairman Dorgan. And 
members of the Committee, thank you.
    My name is Gary Hall, Jr. It is my honor to appear before 
you today to speak about the influence of Type I Diabetes on my 
life and the impact of research in managing and preventing and 
curing diabetes.
    My family's ties to swimming run deep and I have been drawn 
to the water my entire life. I won my first national title when 
I was 18, and continued my success at the University of Texas, 
after which I won two gold and two silver medals at the 1996 
Olympics. Things were going according to plan and I felt really 
good about my path in life.
    In 1999, my world changed. Having no previous exposure to 
diabetes, I was caught off guard when I started experiencing 
symptoms of the disease. I was extremely tired, constantly 
dehydrated, and had blurred vision. Finally, I collapsed.
    I was diagnosed with Type I Diabetes. My immune system was 
attacking the insulin-producing cells in my pancreas, and I 
would need to inject or pump insulin into my body several times 
a day, every day, for the rest of my life. My entire life had 
changed forever.
    My previous focus on training shifted to learning of 
insulin shots, glucose tests and carbohydrate ratios. I took 
time off from swimming and, with the help of the Juvenile 
Diabetes Research Foundation, devoted myself to researching 
this disease.
    It shocked me to learn about the complications associated 
with both Type I and Type II Diabetes. Blindness, amputations, 
kidney failure and stroke were now closer to becoming a reality 
for me than I ever thought.
    Diabetes is a terrifying disease. But I resolved not to let 
it stop me or the pursuit of my dreams. I soon returned to 
swimming determined not only to win at the sport, but also to 
show the world I could do it with diabetes. And as I sit before 
you today, I am proud to say I accomplished just that. Since 
being diagnosed with Type I Diabetes, I won six medals at the 
2000 and 2004 Olympic Games for the United States.
    All of my accomplishments cannot change the severity of 
this disease and the heavy toll it is taking on my body. While 
I hope that my story is an inspiration for those living with 
diabetes, I must say that all of the children, adults and 
families impacted by this disease are truly the greatest 
inspiration to me. Knowing the reality of life with diabetes, I 
am constantly amazed at the stories of families and individuals 
who give back while persevering through this disease.
    Take Anela from Hawaii, who was diagnosed with Type I 
Diabetes when she was 9 years old. She is so determined to be 
part of the cure that she enrolled in a research trial studying 
the environmental factors that may contribute to diabetes. 
Anela is actively helping researchers determine the cause of 
diabetes so they can find a cure for it.
    Another example is Scott from Nevada, whose son was 
diagnosed with Type I Diabetes when he was 8 years old. With no 
family history of diabetes, Scott enrolled in a clinical 
research study that showed he was at high risk for developing 
diabetes.
    Five years later, when he was eventually diagnosed, he 
immediately enrolled in another study to test a drug designed 
to halt the autoimmune attack involved in Type I Diabetes. 
Years later, Scott still produces some of his own insulin, and 
the drug appears to be slowing the progression of the disease 
and the development of complications.
    By participating in research, Anela and Scott have 
contributed to the tremendous advancement in diabetes 
treatments and technologies that are improving the lives of 
people living with diabetes.
    These advancements would not be possible without the 
Special Diabetes Program, which funds 35 percent of all 
diabetes research at the National Institutes of Health. This 
program supports the large-scale, multi-center research trials 
like the ones Anela and Scott participated in, and also funds 
critical diabetes education, treatment and prevention programs 
for Native Americans.
    Thanks to the Special Diabetes Program, research has moved 
from the lab to human clinical trials that are identifying 
those at high risk for Type I Diabetes and testing therapies to 
prevent the onset of the disease and slow its progression. This 
program is funding groundbreaking research to help advance an 
artificial pancreas that would help patients achieve better 
glucose control, reducing the risk of diabetes complications.
    And on the complications front, a clinical trial funded by 
the Special Diabetes Program recently confirmed the ability to 
halt, and even reverse, diabetic eye disease, or retinopathy, 
which is the leading cause of adult onset blindness.
    I would like to offer a special thanks to Chairman Dorgan 
for sponsoring legislation, along with Senator Susan Collins, 
to renew the Special Diabetes Program this year. Mr. Chairman, 
your extraordinary leadership and commitment to renew this 
program is deeply appreciated by me and all people living with 
diabetes.
    I would also like to thank Vice Chairman Barrasso and the 
members of this Committee, a majority of which are co-sponsors 
of Senator Dorgan's legislation, S. 3058. This program is 
drastically changing, if not saving, the lives of countless 
Americans living with diabetes. Its renewal will bring us one 
step further along on our path to a cure for this devastating 
disease, and provides hope.
    Thank you again for having me here today and for your 
commitment to diabetes research and the individuals across this 
Country living with diabetes.
    Thank you.
    [The prepared statement of Mr. Hall follows:]

  Prepared Statement of Gary Hall, Jr., Three-time Olympian Swimmer, 
                       Ten-time Olympic Medalist
    Good morning. Thank you Chairman Dorgan, Vice Chairman Barrasso, 
and members of the Committee. My name is Gary Hall, Jr., and it is my 
honor to appear before you today to speak about the influence of type 1 
diabetes on my life and the impact of research in managing, preventing 
and curing diabetes.
    My family's ties to swimming run deep, and I've been drawn to the 
water my entire life. I won my first national title when I was 18 and 
continued my success at the University of Texas, after which I won 2 
gold and 2 silver medals in the 1996 Olympics. Things were going 
according to plan, and I was feeling really good about my path in life.
    In 1999, my world changed. Having no previous exposure to diabetes, 
I was caught off guard when I started experiencing symptoms of the 
disease. I was extremely tired, constantly dehydrated, and had blurred 
vision. Finally, I collapsed.
    Later in the hospital, I was diagnosed with type 1 diabetes. My 
immune system was attacking the insulin-producing cells in my pancreas, 
and I would need to inject or pump insulin into my body several times a 
day, every day, for the rest of my life. Within hours, my entire life 
had changed forever. My previous focus on training shifted to learning 
of insulin shots, glucose tests and carbohydrate ratios.
    I took time off from swimming and, with the help of the Juvenile 
Diabetes Research Foundation, devoted myself to researching this 
disease. It shocked me to learn about the complications associated with 
both type 1 and type 2 diabetes. Blindness, amputations, kidney failure 
and stroke were now closer to becoming a reality for me than I had ever 
imagined. Diabetes is a terrifying disease, but at that moment, I 
resolved not to let it stop me or the pursuit of my dreams.
    I soon returned to swimming, determined not only to win at the 
sport, but also to show the world I could do it with diabetes. And as I 
sit before you today, I am proud to say I accomplished just that. Since 
being diagnosed with type 1 diabetes, I have won 6 medals in the 2000 
and 2004 Olympic games.
    All of my accomplishments can't change the severity of this disease 
and the heavy toll it is taking on my body. While I hope that my story 
is an inspiration for those living with diabetes, I must say that all 
of the children, adults, and families impacted by this disease are 
truly the greatest inspiration to me. Knowing the reality of life with 
diabetes, I am continually amazed at the stories of families and 
individuals who give back while persevering through this disease.
    Take Anela from Hawaii, who was diagnosed with type 1 when she 9 
years old. She is so determined to be a part of the cure that she 
enrolled in a research trial studying the environmental factors that 
may contribute to diabetes. Anela is actively helping researchers 
determine the cause of diabetes so they can find a cure for it.
    Another example is Scott from Nevada, whose son was diagnosed with 
type 1 diabetes when he was eight years old. With no family history of 
diabetes, Scott enrolled in a clinical research study that showed he 
was at high risk of developing diabetes. Five years later, when he was 
eventually diagnosed, he immediately enrolled in another study to test 
a drug designed to halt the autoimmune attack involved in type 1 
diabetes. Years later, Scott still produces some of his own insulin, 
and the drug appears to be slowing the progression of the disease and 
the development of complications.
    By participating in research, Anela and Scott have contributed to 
the tremendous advancements in diabetes treatments and technologies 
that are improving the lives of people living with diabetes. These 
advancements would not be possible without the Special Diabetes 
Program, which funds 35% of all diabetes research at the National 
Institutes of Health. This program supports the large scale, multi-
center research trials like the ones Anela and Scott participated in 
and also funds critical diabetes education, treatment and prevention 
programs for Native Americans.
    Thanks to the Special Diabetes Program, research has moved from the 
lab to human clinical trials that are identifying those at high risk 
for type 1 diabetes and testing therapies to prevent the onset of the 
disease and slow its progression. This program is funding 
groundbreaking research to help advance an artificial pancreas that 
would help patients achieve better glucose control, reducing the risk 
of diabetes complications. And on the complications front, a clinical 
trial funded by the Special Diabetes Program recently confirmed the 
ability to halt and reverse diabetic eye disease, which is the leading 
cause of adult onset blindness.
    I would like to offer a special thanks to Chairman Dorgan for 
sponsoring legislation along with Sen. Susan Collins to renew the 
Special Diabetes Program this year. Mr. Chairman, your extraordinary 
leadership and commitment to renew this program this year is deeply 
appreciated. I would also like to thank Vice Chairman Barrasso and the 
members of this committee, a majority of which are co-sponsors of Sen. 
Dorgan's legislation, S. 3058. This program is drastically changing--if 
not saving--the lives of countless people with diabetes. Its renewal 
will bring us one step farther along on our path to a cure for this 
devastating disease.
    Thank you again for having me here today and for your commitment to 
diabetes research and individuals across this country living with 
diabetes.
    Thank you again for having me here today.

    The Chairman. Mr. Hall, thank you very much. Your story is 
a very inspiring one to all of us, and we appreciate you being 
here.
    Dr. Melvina McCabe, thank you for being here. President of 
the Association of American Indian Physicians in Albuquerque. 
You may proceed.

 STATEMENT OF MELVINA McCabe, M.D., PRESIDENT, ASSOCIATION OF 
                   AMERICAN INDIAN PHYSICIANS

    Dr. McCabe. Chairman Dorgan, thank you very much. Other 
Committee members, I thank you very much for inviting me to 
testify. And it is an honor for me to testify on behalf of my 
people.
    Diabetes is truly a crisis in Indian Country. The crisis is 
all-encompassing, affecting not only the physical health of our 
Indian Nations, but also affecting the mind and the spirit. As 
one of our own stated, when the spirit is in pain, what does it 
matter if you take your medication or take a walk?
    I will present the data, some of the data, in Indian 
Country and some of the findings to date on activities that 
have been implemented in Indian Country.
    Senator Dorgan, you presented many of the statistics 
already. The one thing I would like to add is that the Indian 
Health Service data on American Indians and Alaska Native 
children and young people, between 1990 and 2009, reveals a 161 
percent increase in Type II Diabetes in those aged less than 15 
years. Diabetes and the co-existing morbidities continue to 
plague our Native peoples and, in particular, diabetes is now 
affecting those very dear to us, our children and our young 
people.
    The lifestyle interventions of weight loss and exercise 
remain the mainstay in diabetes prevention and cardiovascular 
risk reduction. For every kilogram of weight loss, there is a 
16 percent decrease in diabetes risk. The development of new 
diabetes medications is not to be minimized, but lifestyle 
interventions are key.
    Other panel members have referenced the Diabetes Prevention 
Program. Some of the statistics that came out of that program 
are a 58 percent reduction in diabetes incidents with the 
intensive lifestyle intervention group, and a 31 percent 
reduction in the Metformin compared to placebo.
    A promising trend in diabetes outcomes is noted with the 
implementation of the Indian Health Services Special Diabetes 
Programs for Indians. After 1998, community walking and running 
programs increased from 20 to 92 percent. Community exercise 
programs increased from 16 to 69 percent. School age physical 
activity programs increased from 9 to 69 percent. Tribally-
defined interventions in reduction in TV watching increased 
from 25 to 35 percent. And weight management programs for 
children increased from 8 to 72 percent.
    The improvement in clinical interventions was a reduction 
of the A1c from 11 to 7.9 percent, a reduction in the 
cholesterol levels by 20 percent, and a reduction in 
proteinuria by 32 percent.
    The Journey to Native Youth Health Project is a 
collaborative, community-based participatory approach 
partnership between the Montana Rocky Boy and Crow Indian 
reservations and the University of Montana for preventing risk 
factors associated with diabetes in Native youth aged 10 to 14. 
The early findings from this study strongly suggests this 
intervention favorably impacts diabetes risk factors in Native 
youth by increasing moderate to vigorous activity and 
increasing caloric output.
    They have submitted a full-scale trial for funding. They 
have not heard back yet. Senator Tester, this would be exciting 
news for your State if this grant was funded.
    The Navajo Nation has adapted the Diabetes Prevention 
Program materials for youth and Navajo people in their efforts 
to reduce diabetes. In addition, they have chosen to share with 
anyone their materials and have conducted training around the 
U.S. to implement this effective intervention. Senator McCain, 
your State needs to be congratulated for producing leaders in 
diabetes reduction efforts and who are willing to share their 
experience.
    The Pima Indians, since 1990, have experienced a decline, 
albeit small, in the overall incidence of end-stage renal 
disease. The authors of the study suggest that while it is not 
completely clear as to the reasons for this, it does appear 
that greater access to diabetes medications may have impacted 
this change.
    The Cheyenne River Sioux used the Medicine Wheel nutrition 
intervention to demonstrate a positive trend in weight loss 
compared to the control group.
    Diabetes is not a solo actor. In order for us to truly 
define effective interventions, we must address all other 
variables that affect the rates of diabetes in our communities.
    Access is a big issue. Access issues in relation to 
diabetes include, but are not limited to, distances traveled to 
healthcare facilities, availability of medications, health 
literacy, storage of medications, cultural literacy of the 
healthcare providers, and language barriers.
    My sister-in-law travels 1 hour and 15 minutes one-way, 5 
days a week, for dialysis. My brother, who is a private 
contractor, takes her to her dialysis treatments. This impacts 
his ability to work and to provide for his family. One can 
understand the far reaching consequences that lack of access 
creates.
    Socio-economic. We cannot forget the variables of poverty, 
Western educational level, and occupation that contribute to 
the high rates of diabetes or any chronic disease. I have to 
tell the story of a patient of mine with diabetes, and this is 
not an uncommon scenario. His A1c level was 13, his blood 
pressure was 150/90, he weighed 300 pounds and he had a family 
to support.
    After several attempts at controlling his diabetes with our 
armamentarium, I asked him what was going on in his life. He 
stated, I have a family to feed. I fill my prescriptions, but 
instead of taking my medications as directed, I take them twice 
a week so that they will last longer. I cannot afford the 
healthy foods because they are more expensive. He recently 
suffered a stroke and is now in a nursing facility.
    Culture. Understanding the cultural perspective of diabetes 
is critical for successful interventions in reducing diabetes 
risk. Some studies suggest that Indian people may have a 
fatalistic view of diabetes, young American Indians and Alaska 
Native diabetics may have a different body image than the white 
population. We must understand those cultural variables.
    Public Health. The role of public health is critical and 
includes the development of tribal, state, national 
partnerships, partnered program planning, data collection and 
evaluation. All governmental agencies must include American 
Indian/Alaska Native data sets on diabetes.
    And if we think a little bit outside of the box, 
identifying measures that would reduce the risk of diabetes 
other than the pre-diabetes state is very important in 
addressing reduction of risk. The metabolic syndrome which 
assesses cardiovascular risk might actually be a better measure 
of diabetes risk than the fasting blood sugar.
    Overall planning for major changes in our society that 
impact physical activity is important. Examples that have 
impacted the physical activity, particularly in our youth, are 
the introduction of the television set. We did not plan for 
what outcome was going to be on that. We did not increase our 
physical activity recommendations. Taking physical activity out 
of our school curriculum, improved technology that results in a 
reduction in physical activity.
    And finally, nutrition. Policy makers must be aware that 
while the majority of society may have access to electricity 
and running water, American Indians and Alaska Natives do not 
necessarily enjoy these privileges. Without electricity, how do 
we store our insulin appropriately, how do we store healthy 
foods such as fresh vegetables, fruits, milk? In Indian 
Country, canned foods can be a staple because of the lack of 
electricity.
    In closing, the approach to diabetes risk reduction is 
multi-factorial, but the key components still appear to be 
weight loss and exercise. This is the first time that our 
communities have success stories in making effective lifestyle 
changes by implementing interventions that have been developed 
by and for the communities. And that is key, that these 
interventions are developed by and for the communities.
    This is a new generation of health role models for our 
Indian children. Know that we can make the changes necessary in 
the battle against diabetes. In order for us to maintain and 
sustain this momentum that we are now seeing in our communities 
to address diabetes, we are confident that Congress will 
continue to support this effort.
    Thank you very much.
    [The prepared statement of Dr. McCabe follows:]

 Prepared Statement of Melvina McCabe, M.D., President, Association of 
                       American Indian Physicians
Introduction
    Chairman Dorgan, my name is Melvina McCabe, I am a Navajo physician 
working as an academician at the University of New Mexico School of 
Medicine Department of Family Medicine in Albuquerque, NM. I am also 
the current President of the Association of American Indian Physicians 
whose offices are based in Oklahoma City, Oklahoma. I am honored to 
testify today and grateful that you have invited me and grateful to the 
committee as a whole for considering the testimony.
    Diabetes is truly a crisis in Indian Country. The crisis is all-
encompassing, affecting not only the physical health of our Indian 
Nations, but also impacting the mind and the spirit. As one of our own 
stated: ``when the spirit is in pain, what does it matter if you take 
your medication or take a walk? ''(1). I will present the statistical 
data and research findings and community intervention activities on 
diabetes in Indian country.
Statistical Data
    According to CDC data, in 2005, the age-adjusted prevalence rate of 
diabetes in American Indians/Alaska Natives (AI/AN)was 16.5 percent 
compared to the non-Hispanic white rate of 6.6 percent and was highest 
for all underrepresented populations. Of note is the considerable 
geographic variation: Alaska Native adults with a rate of 6 percent and 
southern Arizona adults with a rate of 29.3 percent. AI/AN's have the 
highest prevalence rate of diabetes in all age and gender categories 
compared to the white and other underrepresented populations. The IHS 
data on AI/AN children and young people, between 1990-2009, reveals a 
161 percent increase in Type 2 DM in those age <15. A significant risk 
factor for diabetes is obesity. AI/AN youth, in particular, were more 
obese when compared to the U.S. general population (2). AI/AN with 
diabetes had higher rates of HTN, renal failure, lower-extremity 
amputations, and cardiovascular disease than the general U.S. 
population with diabetes (3). Diabetes and the coexisting morbidities 
continue to plague our AI/AN people and, in particular, diabetes is now 
affecting those very dear to us, our children and young people.
What Works
    The lifestyle interventions of weight loss and exercise remain the 
mainstay in diabetes prevention and cardiovascular risk reduction. For 
every kg of weight lost, there is a 16 percent decrease in diabetes 
risk. The development of new diabetes medications is not to be 
minimized, but lifestyle interventions are key.

   The Diabetes Prevention Program bore out these key 
        interventions (4). The study revealed a 58 percent reduction in 
        diabetes incidence with the intensive lifestyle intervention 
        group, a 31 percent reduction in the Metformin group compared 
        to placebo. The interventions were exercise, weight loss, 
        availability of a coach, and behavior modification.

   A promising trend in diabetes outcomes is noted with the 
        implementation of the Indian Health Service Special Diabetes 
        Program for Indians. After 1998, community walking and running 
        programs increased from 20 percent to 92 percent; community 
        exercise programs increased from 16 percent to 69 percent; 
        school age physical activity programs increased from 9 percent 
        to 69 percent; tribally defined interventions in reduction in 
        TV watching increased from 25 to 35 percent, and weight 
        management programs for children increased from 8 percent to 72 
        percent (5). The improvement in clinical interventions were a 
        reduction of the A1C from 11 percent to 7.9 percent between 
        1996-2009, reduction in mean LDL cholesterol by 20 percent, and 
        reduction in proteinuria by 32 percent.

   The Journey to Native Youth Health project is a 
        collaborative, community-based participatory approach 
        partnership between the Montana Rocky Boy and Crow Indian 
        reservations and the University of Montana for preventing risk 
        factors associated with diabetes in Native youth, age 10-14 
        years old. The early findings from this study strongly suggests 
        this intervention favorably impacts diabetes risk factors in 
        Native youth by increasing moderate to vigorous activity and 
        increasing caloric output compared to the control group 
        (conversation with Blakely, PI; June 28, 2010)). Based on these 
        findings, a full-scale trial has been submitted for funding and 
        will be the first trial utilizing the DPP intervention 
        specifically for Native Youth. Senator Tester, this would be 
        exciting news for your state.

   The Navajo Nation has adapted the DPP materials for use for 
        Navajo people in their efforts to reduce diabetes. In addition, 
        they have chosen to share with anyone their materials and have 
        conducted training around the U.S. to implement this effective 
        intervention. Senator McCain, your state needs to be 
        congratulated for producing leaders in diabetes reduction 
        efforts and who are willing to share their experience.

   A relatively new medication is the incretin mimetics. 
        Incretins have been shown to increase insulin secretion, but 
        also increase satiety and weight loss. Another addition to our 
        effective medication armamentarium.

   The Pima Indians, since 1990, have experienced a decline in 
        the overall incidence of end-stage renal disease. The authors 
        of this study suggest that while it is not completely clear as 
        to the reason(s) for this, it appears that greater access to 
        diabetes medications may have impacted this change (6).

   The Cheyenne River Sioux used the Medicine Wheel nutrition 
        intervention to demonstrate a positive trend in weight loss and 
        BMI compared to the control group (7).

Other Considerations
    Diabetes is not a solo actor. In order for us to truly define 
effective interventions, we must address all other variables that 
affect the rates of diabetes in our communities.

   Access: Decreased healthcare access has been identified as a 
        factor contributing to the health disparities in our nation. 
        Access issues in relation to diabetes include but are not 
        limited to distance traveled to health care facilities, 
        availability of medications, health literacy, storage of 
        medications, cultural literacy of the healthcare providers, and 
        language barriers. My sister-in-law travels one hour and 15 
        minutes, one-way, 5 days a week for dialysis; my brother, who 
        is a private contractor, takes her to her dialysis treatments. 
        This impacts his ability to work and to provide for his family. 
        One can understand the far reaching consequences that lack of 
        access creates.

   Socio-economic: We cannot forget the variables of poverty, 
        Western educational level, and occupation that contribute to 
        the high rates of diabetes or any chronic disease. I have to 
        tell the story of a patient of mine with diabetes and this is 
        not an uncommon scenario. His A1C level was 13, his B/P was 
        150/90, he weighed 300 lbs, and he had a family to support. 
        After several attempts at controlling his diabetes with our 
        armamentarium, I asked him what was going on in his life. He 
        stated ``I have a family to feed''. ``I fill my prescriptions 
        but instead of taking my medications as directed, I take them 
        twice a week so that they will last longer''. ``I cannot afford 
        the healthy foods because they are more expensive''. He 
        recently suffered a stroke and is now in a nursing facility.

   Culture: Understanding the cultural perspective of diabetes 
        is critical for successful interventions in reducing diabetes 
        risk. Some studies suggest that Indian people may have a 
        fatalistic view of diabetes, young AI/AN diabetics may have a 
        different body image view than the white population.

   Public Health: The role of public health is critical and 
        includes the development of tribal/state/national partnerships, 
        partnered program planning, data collection, and evaluation. 
        All governmental agencies must include American Indian/Alaska 
        Native data sets on diabetes.

   Outside the Box: Identifying measures that would reduce risk 
        of diabetes other than the pre-diabetes state is very important 
        in addressing reduction of risk. The metabolic syndrome which 
        assesses cardiovascular risk might actually be a better measure 
        of diabetes risk than the FBS. The measures are HDL, 
        triglycerides, blood pressure, FBS, and waist circumference.

        Overall planning for major changes in our society that impact 
        physical activity is important. Examples are: the introduction 
        of the television set, taking physical activity out of school 
        curricula, improved technology that results in a reduction in 
        physical activity.

   Nutrition: Policy makers must be aware that while the 
        majority society may have access to electricity and running 
        water, American Indians and Alaska Natives do not necessarily 
        enjoy these privileges. Without electricity, how do we store 
        our insulin appropriately, how do we store healthy foods such 
        as fresh vegetables, fruits, eggs, milk. In Indian country, 
        canned goods can be a staple because of the lack of 
        electricity.

    In closing, the approach to diabetes risk reduction is 
multifactorial, but the key components still appear to be weight loss 
and exercise. This is the first time that our communities have success 
stories in making effective life-style changes by implementing 
interventions that have been developed by and for the communities. This 
is a new generation of health role models for our Indian children. Know 
that we can make the changes necessary in the battle against diabetes. 
In order for us to maintain and sustain this momentum that we are 
seeing now in our communities to address diabetes, we are confident 
that the Congress will continue to support this effort.
    References:

        1. Arpan J. Health for Native Life. (2002)
        2. http://www.ihs.gov/MedicalPrograms/MCH/M/bfdiabetes.cfm
        3. O'Connell J, etal. Diabetes Care. (2010)
        4. DPP
        5. Acton KJ. Am J Prev Med. (2009)
        6. Nelson RG. Diabetes Res Clin Pract. (2008)
        7. Kattelmann KK. J Am Diet Assoc. (2009)

    The Chairman. Dr. McCabe, thank you very much.
    And finally we will hear from Caitlin Baker, a 16-year-old 
Muscogee Creek Indian from Oklahoma. My understanding, Caitlin, 
is that your mother, Edith Baker, has accompanied you and is 
sitting behind you today. Is that correct?
    Ms. Baker. Yes.
    The Chairman. Welcome to you.
    Ms. Baker. Thank you.
    The Chairman. Caitlin, you may proceed.

   STATEMENT OF CAITLIN BAKER, MEMBER, MUSCOGEE CREEK NATION

    Ms. Baker. I am Caitlin Baker. I am from Norman, Oklahoma. 
I am 16 years old and I am a member of the Muscogee Creek 
Nation. I have run my own outreach program for the last four 
years that works with Native American communities spreading the 
message that Type II Diabetes can be prevented through physical 
activity and healthy lifestyle choices, of course.
    I have traveled to communities across the Nation and my 
message is prevention. I feel that my generation has been 
raised with the continual message that diabetes is rampant in 
Native communities. My peers many times feel that Type II 
diabetes is inevitable. They tell me that they know they will 
get it eventually because their parents, grandparents and other 
family members may have diabetes already.
    This feeling of inevitably can cause them to not take 
prevention seriously. This, in turn, affects the success of 
programs put in place to prevent diabetes. I feel that one 
major change that needs to be taken is the shift from 
inevitably to preventability. Stress to youth that diabetes is 
preventable. Inform them how to avoid diabetes. And then follow 
through by giving them the tools needed, like access to 
physical activity and healthier food options.
    I also stress to youth how important it is to use your 
voice and speak to leaders of your community. This does not 
include just health professionals, but also tribal leaders. 
Youth should go to their tribal leaders with what they feel 
that they need to make the healthy choices in their lives. 
Their voice is a powerful weapon. And I also ask their leaders 
to listen. Youth want to be heard and respected.
    I have been in communities where youth have asked for 
simple things like a say in their lunch menu, a soccer field, a 
pool, to have drinking and smoking banned in their public 
parks. This is what youth want. And involve your kids, and let 
them have ownership of the healthy changes being made in their 
communities.
    I once visited a jogging trail in Davenport, Oklahoma, 
which was the vision of local school kids in Davenport. The 
students decided they wanted one, so they raised the money and 
got the grants and they built it. When I saw it a year later, 
there was no trash and no graffiti. The local kids were proud 
of it and respected it.
    So, no offense to grownups, but I feel that if they had 
taken it over, they may still be figuring out how to build it 
and what to name it.
    [Laughter.]
    Ms. Baker. So, I am not saying that grownups are not needed 
and they cannot get things done, but just that involving your 
youth is a positive thing. If you involve your youth, it makes 
them feel proud. Encourage them to be involved in planning and 
carrying out those plans. This will give them pride in 
themselves and in their communities.
    I also stress partnerships. I would not be able to do the 
work that I do without my partners. I hope that more 
organizations, both tribal and non-tribal, will work together. 
Diabetes prevention goes hand-in-hand with heart disease and 
tobacco control. The organizations working in these areas 
should be open to working together.
    Breathing problems and heart disease cause poor 
circulation, which in turn causes complications in diabetes 
patients. It seems that all of these areas should be working 
together to get the message across of prevention. And be aware 
of the work each other are doing. That way, nobody is 
duplicating the same programs so they share funding.
    Also, know your community. I have spoken with kids in New 
York, South Dakota, Oklahoma, Nebraska, New Mexico and Arizona, 
to name a few. Everywhere I go there is a different issue with 
their youth. The diabetes programs that I work with ask me to 
address prevention and physical activity, but also to tailor my 
message to what their community is struggling with. Each 
community is different. Take time to ask and figure out what 
these issues are. Do not approach this with a one answer for 
everyone attitude.
    I do not mean, through my testimony, to give the impression 
that programs are not working. I can only speak about programs 
that I have been a part of and all of them have been positive 
experiences. My thoughts and ideas come from seeing the way 
that these programs work.
    So, in closing, many times people compliment me on the work 
that I do. I always appreciate words of encouragement, but I 
tell them that there are kids like me in every community. So, 
you should seek out those kids and encourage them.
    The topic today is the way out of the diabetes crisis in 
Indian Country. So, in my opinion, it is to involve every 
person in your community. Involve your youth and listen to 
them. We are living the crisis of diabetes and we do not want 
to live with diabetes forever. Let us work with you and find a 
way out of the crisis.
    Thank you, Chairman Dorgan, for letting me a part of your 
discussion and all of the Senate members who were not here.
    [The prepared statement of Ms. Baker follows:]

   Prepared Statement of Caitlin Baker, Member, Muscogee Creek Nation
    Senate members my name is Caitlin Baker, I am 16 years old and live 
in Norman Oklahoma. I am a member of the Muscogee Creek nation. For the 
last 4 years I have run an outreach program that works with Native 
American communities spreading the message that diabetes can be 
prevented through physical activity and healthy lifestyle choices. I 
have traveled to communities across the nation. My message is 
prevention. I feel that my generation has been raised with the 
continual message that diabetes is rampant in Native communities. My 
peers many times feel that diabetes is inevitable. They tell me that 
they know they will get it eventually because their parents, 
grandparents and other family members have diabetes. This feeling of 
inevitability can cause them to not take prevention seriously. This in 
turn affects the success of programs put in place to prevent diabetes. 
I feel that one major change that needs to be made in the programs is a 
shift from inevitability to PREVENTABILITY. Stress to youth that 
diabetes is preventable. Inform them how to avoid diabetes and then 
follow through by giving them the tools needed like access to physical 
activity and healthier food options. Tell youth and communities what 
needs to be done to prevent diabetes and then work with them to provide 
what is needed.
    I stress to youth how important it is to use their voice and speak 
to the leaders of their communities. Not just health professionals who 
are working in diabetes prevention but also tribal leaders. Go to them 
with what they feel they need to make good lifestyle choices. Their 
voice is a powerful weapon. I also ask their leaders to listen. Youth 
want to be heard and respected. I have been in communities where youth 
have asked for simple things like a say in their lunch menus, a soccer 
field, a pool, to have drinking and smoking banned in their public 
parks. These are what youth want. Involve your kids; let them have 
ownership of healthy changes being made in their community. I once 
visited a jogging trail that was the vision of the local school kids in 
the small town of Davenport, Oklahoma. The students decided they wanted 
one so they raised money, got grants and built it. When I visited it a 
year later there was no trash, no graffiti. The local kids were proud 
of it and respected it. No offense to any grownups but I felt like if 
the adults had been handling it, they might still be discussing how to 
get it built and arguing what to name it. My point is not that adults 
aren't needed or can't get things done; just that including the youth 
is a positive thing. Encourage them to be involved in planning and 
carrying out those plans. This will give them pride in themselves and 
their communities.
    I also stress partnerships. I would not be able to do the work I do 
without my partners. I hope that more organizations, both tribal and 
non-tribal will work together. Diabetes prevention goes hand in hand 
with heart disease and tobacco control. The organizations working in 
these areas should be open to working together. Breathing problems and 
heart disease cause poor circulation, which in turn causes 
complications in diabetes patients. It seems that all these areas 
should be working together to get the message across of prevention and 
be aware of the work each other are doing. Share ideas and funding so 
that no one is duplicating programs.
    Also, know your community. I have spoken with kids in New York, 
South Dakota, Oklahoma, Nebraska, New Mexico, and Arizona. Everywhere I 
go there is a different issue with their youth. The diabetes programs I 
work with ask me to address prevention and physical activity but also 
to tailor my message to what their community is struggling with. Each 
community is different, take time to ask and learn what issues there 
are. Don't approach this with a one answer for everyone attitude.
    I don't mean through my testimony to give the impression that 
programs aren't working. I can only speak about programs I have been 
involved in and all have been positive experiences. My thoughts and 
ideas come from seeing the way those programs are working.
    In closing, many times people compliment me on the work I do. I 
always appreciate words of encouragement, but I also tell them that 
every community has kids like me. Find and encourage them. The topic 
today is ``the way out of the diabetes crisis in Indian country.'' In 
my opinion the best way out is to include all members of our 
communities. Ask and listen to your youth. We are living the crisis of 
diabetes. We don't want to live with diabetes. Let us work with you to 
find a way out of the crisis.
    Thank you for inviting me today to join in your discussion.
    Attachments

    [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]
    
    The Chairman. Ms. Baker, thank you very much.
    Let me mention the reason for me being the only Senator 
because I think it is important. And by the way, let me also 
point out, you said that you were not suggesting grownups were 
not necessary. Without grownups, there would be no children.
    [Laughter.]
    The Chairman. But having said that, let me explain to you 
that this week is a rather unusual week in that our beloved 
colleague, Senator Byrd, passed away. His body will lie in 
state tomorrow in the Senate Chamber and there will be a 
funeral on Friday in West Virginia that most of us will attend.
    Because tomorrow Senator Byrd's body will lie in state in 
the Senate Chamber, there will be no Senate business. And so 
much of what was going to be done this week became truncated 
into today, Wednesday, virtually all of my colleagues are 
either chairing or participating in markups or hearings of 
Environment and Public Works and Energy and Judiciary and the 
Kagan hearings and so on. So, it created a difficult 
circumstance today. But your testimony is heard by all of the 
staff of the Committee Members who have participated today.
    So, I thank you very much for coming. I wanted to explain 
to you the special circumstances today.
    Let me ask some questions. Dr. Fradkin, what is the most 
positive thing you can tell me about work, at the NIH, in 
trying to cure diabetes? Because I hear, from time to time, or 
I see news reports that, this is the one disease that may be 
cured. We are so close here and there.
    Give me the strongest nugget that you can of what research, 
and what makes you believe that finally, perhaps, at long last 
we might be able to cure this disease. Or, does such 
information exist?
    Dr. Fradkin. I was at the American Diabetes Association 
scientific sessions in Orlando and, just yesterday, the results 
of a very exciting trial were presented. This was a trial of 
sensor-augmented pump therapy for Type I Diabetes.
    What they showed was when people wore the continuous 
glucose monitors and had some communication but the data from 
that monitor was not being used to control the rate of delivery 
of the pump--it was not yet automated, the patient still had to 
make the changes--they got dramatic improvements in their 
hemoglobin A1c. That is the test that measures how good your 
control of diabetes is and which is associated with fewer 
complications. The patients had markedly fewer episodes of low 
blood sugar than we saw in the previous Diabetes Control and 
Complications Trial that proved that good control reduced 
complications.
    So, we are making huge progress toward this artificial 
pancreas that is one of the major goals of our special program 
funding. We still need to move further to actually link the two 
devices. When I told you that parents could sleep through the 
night, what I meant is that they do not have to set their 
alarms to wake up to test their children. But that does not 
mean they are still sleeping through the night because the 
sensors are going off and sounding alarms when the sugar is not 
normal.
    What we want is for the sensor to be able to directly 
control the delivery of insulin, to take the burden off of 
these finger pricks that kids are doing every hour. We want 
kids to be able to forget for awhile that they have Type I 
Diabetes and live a normal, carefree childhood.
    And I think if we can make progress in what we call closing 
that loop, that is tremendously encouraging. And I can give you 
some similar examples with regard to Type II Diabetes.
    The Chairman. But you are talking about, particularly, 
advances in monitoring. Which is so very important, no question 
about that, because that deals with the health and mortality of 
the patient.
    I am asking about things that you see that suggest, because 
of changes in research and capability. The first owner's manual 
for the human body exists now with the genome projects and so 
on. Is there a body of research out there that gives you hope 
that perhaps 10 years from now you might testify somewhere and 
say well, in this area, we were able to actually cure or 
reverse? Tell me your assessment of that, as opposed to just 
monitoring.
    Dr. Fradkin. I told you about this TEDDY trial where we 
have just finished the recruitment. We have found 8,000 
children who are at very high genetic risk for Type I Diabetes. 
We are monitoring them, looking at their diet, looking at blood 
samples which are going to be looked at with incredible new 
technologies that have come out of the genome project, and, for 
example, if we could find an infectious trigger through these 
samples, we are going to analyze the kids who are at high 
genetic risk who did and did not get Type I Diabetes.
    If we could find an infectious trigger or some aspect of 
the diet, we know something is happening in the environment 
that is causing Type I Diabetes because rates are going up by 
several percent per year. If we could find an infectious cause 
and have a vaccine that could prevent Type I Diabetes, that is 
what we are aiming for.
    So, at every step along the disease, we are trying to make 
improvements in the care for people who have diabetes, and we 
are trying to prevent diabetes.
    The Chairman. Thank you.
    Dr. McCabe, some in the audience may not know from the 
reference of a physician the difference between Type I and Type 
II Diabetes. Would you describe that?
    Dr. McCabe. Yes. Type I Diabetes is a state where there is 
a lack of insulin production. Type II Diabetes, there are a 
couple of things that are going on. One is, most likely, 
insulin resistance, and a decrease in the secretion in insulin 
production.
    The Chairman. I am going to ask some additional questions 
with your practice.
    Mr. Hall, when you were diagnosed with Type I Diabetes, you 
talked about being devastated, did not know what this means, 
and so on, and then decided to proceed, nonetheless, to resume 
swimming, continue training, and won. I think you said, six 
additional medals, after that diagnoses.
    What impact did Type I Diabetes and the treatment and the 
lifestyle changes you had to make have on your ability to 
maintain that level as a world class swimmer?
    Mr. Hall. Diabetes management is an additional step that 
none of the competitors that I raced against had to contend 
with. It is through that shared experience with the rest of the 
diabetes community that I am able to express my empathy with 
those that are diagnosed and living with this disease. It is 
sincere and appreciated.
    The challenges of managing diabetes are extreme. When 
diabetes nurse educators are talking to a newly-diagnosed 
patient, they will show them a picture of me with a gold medal 
and say this is possible. But the picture that they do not 
share with those patients is me helpless with a hypoglycemic 
reaction calling out for help and some orange juice. And that 
happens a lot more frequently than winning a gold medal.
    The challenges are real. In Imperial China, death by a 
thousand cuts was a form of torture and death. I sometimes feel 
that diabetes is death by thousands and thousands of injections 
and finger pricks. And I think that sums up some of the 
feelings that are shared by a lot of people that are required 
to live with this every day without any break from diabetes.
    The Chairman. In some ways, the dilemma here is that you 
look like the picture of health, and yet, you have a very 
serious illness. And I have seen the other picture. I have gone 
to Indian reservations and I have seen people sitting in 
dialysis units. I have seen people walk on crutches because 
they had a leg amputated. And I understand almost instantly, 
even if I do not talk to the person, what the circumstances are 
of that amputation. The background is diabetes.
    And so, you look like the picture of health, and yet you 
have Type I Diabetes. I suspect that the two physicians here 
kind of confront those realities in the practice. They can see 
an Olympic swimmer winning medals with Type I Diabetes and so 
it is not so bad, it is manageable. And yet you described that 
even now your management of your disease is a 24 hour a day 
management. Is that correct?
    Mr. Hall. That is correct. That is correct. And I am 
example that diabetes is an epidemic, that diabetes knows no 
boundaries of race or border.
    The Chairman. Dr. McCabe, tell me about your practice. What 
percent of your patients have diabetes?
    Dr. McCabe. By describing my practice, you will get an idea 
of what percent have diabetes. I was trained in family 
medicine. I did a two-year fellowship in geriatrics. So, my 
practice, mainly, is geriatrics. So, a high percentage of my 
patients have diabetes.
    The Chairman. And what percentage of your patients have had 
access to adequate screenings so that they could detect this 
diabetes as early as is possible and begin to manage it?
    Dr. McCabe. I would like to say 100 percent, but I know 
that is not the case. I know that is not the case. In this 
Country, we do not do as well in screening as we really need 
to.
    The Chairman. Especially on the Indian reservations, it 
seems to me.
    Dr. McCabe. Exactly.
    The Chairman. One of the keys, as I have seen it is, in 
addition to treatment, on Indian reservations, front end 
screening to try to identify those that have this disease, and 
then move them into treatment. But the lack of screening, and 
the lack of understanding that if someone is not feeling well 
and they have certain symptoms and so on, they never get the 
diagnosis, look, here is the problem and here is the way to 
manage it. I think screening is critically important.
    Dr. McCabe. And I think the Indian Health Service is making 
great efforts and improving the quality of healthcare on the 
diabetes front and that includes identifying diabetes early. I 
alluded in my statement earlier that the fasting blood sugar 
may not be the only way now to really identify someone who is 
at high risk. I talk about the metabolic syndrome and if we can 
use some of those criteria, we may be able also to identify a 
little bit earlier.
    The Chairman. Mr. Studi, my understanding is that you, 
earlier this year, were involved in efforts to encourage Native 
Americans to get the flu vaccine, encouraging those infected 
with the flu to take prescribed medicine and so on. Have you 
been involved in that kind of activity?
    Mr. Studi. Yes. Earlier this year, we made some PSAs for 
encouraging Native Americans to get their shots for what was 
called the Swine Flu and I think they were, to some extent, 
effective.
    The Chairman. In many ways, that approach, in your case 
dealing with the flu and the encouragement to get the vaccine, 
it relates to the question of, how difficult is it to get 
Native Americans to be able to, number one, acquire the 
medicine necessary to manage a disease like diabetes, and then 
to make sure they take that medicine.
    I think it was Dr. McCabe who described someone who said 
well, I buy the medicine but I take it only twice a week in 
order to afford it. And, of course, that has a very serious 
health consequence.
    So, when I saw that you had done some PSAs on, get our 
vaccine, get vaccinated, take the medicine, that is also a part 
and I would guess that both doctors believe, that is a part of 
what we have to do with respect to treatment of this disease 
called diabetes.
    Mr. Studi. Oh, absolutely. Prevention is the whole thing 
that we going after. And I did it somewhat reluctantly because 
the vaccine was not being made as available as it possibly 
could be at that time. And so, while I was working with some 
people who were very enthusiastic about doing this, I was 
somewhat reluctant, and I had also heard that it was difficult 
to find the amount and the type of shots that were supposed to 
be made available. But, fortunately, I was wrong as time went 
on and this was, the shots were made available as time went on.
    But you do have to take into consideration that areas are 
not, areas where you can get your shots and that kind of thing 
are not as easily accessible for all people. And I am talking 
about large reservations where people have to travel long 
distances to clinics and that kind of thing.
    In the long run, yes. These things are definitely tied 
around prevention, and prevention has to do with lifestyle, and 
that is what I attempt to advocate.
    The Chairman. Yes, I think it is the case on a broader 
point that those who were here first, the First Americans, 
really, are getting second class healthcare in this Country, in 
terms of what was promised to them. The delivery, by treaties 
that were signed saying we will provide you healthcare, that 
trust responsibility in which the Government promised, the 
Government simply has not met those obligations. This is why we 
have worked very hard to pass the Indian Health Care 
Improvement Act. I am proud to say that is now law of just a 
couple of months.
    Caitlin Baker, you talk about outreach and the organization 
that you have created to do outreach with young people. I am 
assuming that you probably, talk about lifestyle and those 
things. I hope you are talking about teen suicide, broken 
families, and drug use, all of the things that confront young 
people.
    I have gone to reservations and sat, just myself as the 
only adult with a roundtable of kids, just to talk to them 
about their lives. And they face plenty of challenges, as you 
know.
    But this issue of diabetes I assume is on the minds of 
every young Native American because they see their aunt, their 
uncle, their mom, their dad, grandpa, grandma fighting this 
disease, perhaps going to the dialysis center, going through 
treatment.
    Give me your assessment. What are young people thinking 
about with respect to diabetes and are they pretty acutely 
aware of the potential of diabetes in their lives?
    Ms. Baker. Well, most people my age are, and a lot of my 
peers that I work with, they all know diabetes because, you 
know, grandma has it, auntie has it, somebody in their family 
will have it. My grandmother has diabetes and she is 90. She is 
really old. But there are a lot of people who are much younger 
who have diabetes as well.
    A good of friend of mine, he would pour tons of sugar in 
his tea, and I would look at him and be like, what are you 
doing? I mean, he is Native as well. So, you know, try to 
encourage good lifestyle. But, you know, he is talking about, 
you know, I feel like I am going to get it anyway because my 
mother has it. Both of his parents have it.
    So, I feel like sometimes doctors, not all doctors, but 
sometimes they will tell him, you know, you are more likely to 
get it because your parents have it or your grandparents have 
it. So, I feel that a lot of people my age, especially Native 
youth, feel that they may get it.
    Younger kids, though, I think they are more educated in 
diabetes starting now. The CDC comes out with the Eagle books 
which are a series of children's books for second grade and 
below that introduce diabetes at a very young age at a level 
that they can understand it. And talking about healthy living. 
So, in that way, it is a good education to have for these kids.
    The Chairman. You do not have diabetes as I understand it.
    Ms. Baker. No.
    The Chairman. What made you decide to form the organization 
that you formed and to do the kind of outreach with young 
people about these issues?
    Ms. Baker. Well, when I was 12, I went to the North 
American Indigenous Games for swimming. I was the only swimmer 
from Oklahoma. And part of being on a swim team, you might 
know, is having members, a relay, you know, a support system 
there for you. And so, this whole program started with me 
recruiting more swimmers that were Native to go on the next 
games with me, which we ended up not going because, well, I do 
not know why.
    So, that is kind of where this all started. The more I got 
involved with it, the more people that I met, I started seeing 
more issues, suicide, teen pregnancy was a big issue that I 
worked with, let's see, diabetes, of course, and of course, 
having access to pools.
    I worked a lot with having pools accessible because I 
worked with the Olympic Committee and Native Americans are the 
second highest drowning rates in the nation. So, I worked a lot 
with getting pools built, starting clinics, doing some clinics. 
I did some clinics with Josh Davis and Mark Spitz before, and 
they are two great swimmers that I got to work with.
    But, you know, just programs like that kind of implicating 
healthy lifestyles which swimming, I feel, is a very family-
oriented sport.
    The Chairman. Are you a competitive swimmer now?
    Ms. Baker. Yes, I am.
    The Chairman. Do you consider Gary Hall an old man?
    [Laughter.]
    The Chairman. The reason I ask the question, without trying 
to make fun here, is you described your grandma as real old at 
90.
    Ms. Baker. She is 90.
    [Laughter.]
    Ms. Baker. I do not think there is anybody who is 90 in 
here.
    [Laughter.]
    The Chairman. Let me also, I kind of grinned when you 
referred, obliquely, to the fact that I was the only Senator 
here. All of the adults recognized that but decided not to say 
anything about it.
    [Laughter.]
    The Chairman. But, at age 16, you have the license to do 
that.
    [Laugher.]
    The Chairman. I would warn you not to go over to the Floor 
of the Senate today because, if you get to the gallery and look 
down onto the Floor of the Senate, you will see a Senator 
perhaps speaking with great passion and no one else in the 
room. And you, probably will, want to observe that when you get 
back home as well.
    [Laughter.]
    The Chairman. Your work inspires me and I think you will 
make a difference in people's lives and I appreciate what you 
do.
    Let me ask, if I might, Izzy, would you be willing, if we 
brought a chair next to Mr. Hall, to come forward just for a 
moment? Would you do that? We will just pull up a chair next to 
Mr. Hall there. And I want to ask Mr. Hall another question as 
well at some point.
    Izzy, you are 16 years old, 16. Is that right?
    Ms. Burger. No.
    The Chairman. Oh, that is Caitlin. You are how old?
    Ms. Burger. I am 11.
    The Chairman. Eleven. I should have known that. You 
probably think Caitlin is real old.
    [Laughter.]
    Ms. Burger. Not really. I have some sisters older than her.
    The Chairman. You heard the testimony from Gary Hall, a 
remarkable athlete and swimmer and Olympic champion. You are a 
young woman, a young girl who has been diagnosed with diabetes. 
Tell me about what you do to manage this disease. How does the 
disease affect your life?

STATEMENT OF ISABEL ``IZZY'' BURGER, MEMBER, LITTLE RIVER BAND 
                       OF OTTAWA INDIANS

    Ms. Burger. Well, I like to play a lot of sports like 
basketball and softball. And I like to go fishing. And 
sometimes if my blood sugar is too high, I am forced to do 
those things, which I am fine with. But if it is too low, I 
cannot do those things, like maybe at a time when I want to do 
those things with friends.
    So, I have to kind of manage it well because, if I do not, 
sometimes I kind of do not have privileges of something that 
normal kids would be able to do whenever they want.
    The Chairman. Do you have to be attentive every day, all 
day, to this disease?
    Ms. Burger. Pretty much, because if I start to feel not 
normal, like if I start to feel really thirsty or really tired, 
then I have to realize that and check my blood sugar and fix it 
if there is a problem.
    The Chairman. How many children are in your class at 
school? The reason I am going to ask the question is, are there 
others who have diabetes? Do you have friends who have diabetes 
that have to manage their disease and so you talk together 
about it?
    Ms. Burger. Not really. I am the only one.
    The Chairman. So, where did you get the information with 
which to manage your disease?
    Ms. Burger. When I was first diagnosed, my doctor was 
really good with it. I went to DeVos Children's Hospital in 
Grand Rapids. And she was very good at describing the disease 
at a level that I could understand.
    The Chairman. Do you have relatives that have diabetes?
    Ms. Burger. Yes. My grandmother has Type II Diabetes and 
she kind of helped me with it, like described how to bring it 
down if it was too high and things like that.
    The Chairman. Well, you are a very poised young woman. Do 
you want to introduce your mom?
    Ms. Burger. Yes, my mom is right there.
    [Laugher.]
    Ms. Burger. Her name is Jessica Burger and she is really 
good with it. She helps me a lot.
    The Chairman. We appreciate your being here and thanks for 
letting me ask you to come up and say a word. I appreciate 
that.
    Ms. Burger. Thank you for having me.
    The Chairman. Gary, I am going to ask a couple of other 
questions of the witnesses.
    As you know, we are trying to get the legislation on the 
Special Diabetes Program. We are also trying to pump more money 
into the National Institutes of Health. At one point we wanted 
a program to double the NIH funding, which we did. There were 
about 6 or 7 of us in the Senate particularly that took it 
under our wing and decided that we really ought to put a lot 
more money into research because it pays very big dividends.
    Now we are trying to keep up with the rate of inflation 
because we have less money and we have fiscal policy problems.
    But I remain convinced that the search needs to be number 
one, to better monitor, and that relates to some technology 
with monitoring devices and so on, but especially, most 
especially, to keep pursuing very aggressively to find a cure.
    Dr. Fradkin, when we provide money to the NIH, to virtually 
any institute, that money goes out all across the Country in 
trials and various approaches. Tell me, what is happening to 
the money for diabetes at the NIH? Just give me a description, 
generally speaking, where does all that go, how is it invested, 
and for what purpose?
    Dr. Fradkin. One program that you might be very interested 
in because of your interest in a cure is our Beta Cell Biology 
Consortium. That is a group of scientists around the Country, 
and even internationally, that are trying to find ways to re-
grow the beta cells, the insulin-producing beta cells, in 
people who have Type I Diabetes, either to convert other cells 
in the body to insulin-producing beta cells or to find a stem 
cell within the body that could be stimulated to grow into a 
beta cell, or to take stem cells from outside the body, convert 
them into beta cells, and then administer them.
    That is an approach to the cure that is going on across the 
Country and even internationally with the support of the Type I 
money.
    The Chairman. So, most of that is in the stem cell research 
area?
    Dr. Fradkin. It is stem cells, both taking stem cells that 
are being studied in the test tube to try to create beta cells, 
but also trying to figure out ways to find the stem cells 
within a person's own body that might be stimulated to re-grow 
in somebody who has lost their beta cells.
    The Chairman. And is there any evidence, or any early 
evidence, whether embryonic stem cell research or some other 
research, is better suited to finding a cure?
    Dr. Fradkin. Sir, we have made tremendous progress in this 
area. We now are able to take embryonic stem cells and we have 
identified the various genes that need to be turned on to move 
one of those cells toward an insulin-producing cell and we can 
get all the way toward making one of those cells make insulin.
    The next stage though, there are a couple of different 
problems that we need to overcome to make this a cure. One is 
to modulate the immune system so that even if we create a new 
beta cell and either give it to people or they grow their own 
beta cells, that it will not be destroyed by the immune system. 
And the other thing is that even though we have gotten to the 
point where those cells can make insulin, we need to get them 
to make insulin in the exquisitely-regulated way in which tiny 
changes in glucose modulate the production of insulin.
    So, we have a number of next steps to take. But I think 
that is an example of the kind of consortia that we create.
    Most of the funding, about two-thirds of the funding, is 
spent directly by NIDDK, which manages the funding, and most of 
that is going to large, multi-site consortia that involve sites 
across the Country. So, for example, our clinical trials 
network includes a whole network of hundreds of sites to enroll 
people all over the Country in efforts to prevent or to treat 
newly-diagnosed Type I Diabetes.
    We also use the funds through other components of NIH. For 
example, the trial that showed these very promising effects on 
eye disease was conducted by the National Eye Institute. We 
provide money to the Centers for Disease Control to monitor the 
epidemic and to develop standardization of the A1c that I 
mentioned. So, the funds are very, very broadly distributed.
    The Chairman. All right.
    Mr. Studi, the issue of traditional culture and practice on 
Indian reservations. Have you observed how that might or might 
not play a role in both detection and treatment of diabetes?
    Mr. Studi. Well, as a matter of fact, I think the real 
disaster of the whole thing is that it is so accepted as a part 
of life. Diabetes is like, as the young lady mentioned, it is 
like everybody has it, somebody has it here or there, relatives 
and friends. It is practically accepted to the point of, well, 
there is really nothing we can do about it, you know? It is 
just a fact of life. It is something that we have to live with.
    Well, I think that part of SDP's goal is in educating the 
public to the point, or the Indian public, to where I speak, 
you know, that there is cause to be glad that there is somebody 
working towards a cure for this, as well as the development of 
more treatments and research that is going on.
    The educational arm of the whole thing is that we need to 
get the idea out that no, it is not an acceptable thing. It is 
just another epidemic that has scourged Indian Country since 
the beginning of our cultures coming together.
    The Chairman. Mr. Hall, how old are you?
    Mr. Hall. I am 35.
    The Chairman. So, your Olympic competitive swimming career 
is likely over.
    Mr. Hall. That is true.
    [Laughter.]
    The Chairman. Maybe I should not have declared that, I 
should have let you answer that.
    [Laughter.]
    The Chairman. But you will remain, I assume, someone who is 
fit and athletic and you will exercise so you will always 
probably have to manage this disease in the context of training 
and exercise. Tell me just a bit about the organization that 
you created. As I understand it, you created an organization 
with respect to outreach and information with respect to 
diabetes. Is that correct?
    Mr. Hall. Well, I am involved with several nationwide 
programs, one through the United States Olympic Committee that 
is encouraging schools to measure the distance and encourage 
walking among students, where it is a measured every six weeks 
program, World Fit is the name of that program.
    And also just in trying to create general diabetes 
awareness. I have been involved with makeover programs. Yes, 
happiness is not possible without health.
    The Chairman. Have you had a chance to, an opportunity, to 
go to some Indian reservations to talk about diabetes?
    Mr. Hall. I spent many years in Arizona and was familiar, 
early on, with the problems, even prior to my diagnosis with 
diabetes, with the Pima Indian population and their struggles 
with diabetes.
    The Chairman. Well, thanks for your work. Some people would 
just get a bad diagnosis and do everything they could to 
address it themselves, overcome it themselves and that is it. 
But you have done much, much more than that and I appreciate 
very much your willingness.
    Mr. Hall. Thank you for saying that. The inspiration that I 
have been honored to offer to people with diabetes is so small 
compared to the hope that the Special Diabetes Program research 
offers to the diabetes population. The research is promising 
and any lapse in funding would disrupt that important research 
that provides hope to all of us.
    The Chairman. Thank you very much.
    Dr. McCabe, one of the things that has come up in a couple 
of pieces of testimony today is that television is a pretty 
awful competitor for exercise. And, you know the desire to get 
young people, particularly young people, off of the chair from 
watching television and out into the yard exercising is a 
critical part. Particularly for those who have the disease 
diabetes, it is a critical part in managing it. Is that 
correct?
    Dr. McCabe. Absolutely.
    The Chairman. So, are you going to take care of the 
television problem?
    Dr. McCabe. Absolutely.
    [Laughter.]
    Dr. McCabe. No, it truly is. And again, as I alluded to, I 
think when we have introductions of new technology that are 
introduced into this Country, concomitant with that we have to 
see what the impact is going to be. And for television itself, 
it has been on increased rates of, I think, diabetes, because 
there is decreased physical activity associated with that.
    So, that is the future planning. That is the long-range 
planning that we must begin. And it is not only for American 
Indians and Alaska Natives. It is for the whole Country. Our 
rates of diabetes for this whole Country are high.
    The Chairman. It is important to say again. We are holding 
this hearing in the Indian Affairs Committee, but this is a 
national epidemic. There is no question about that. And it is 
growing very rapidly and has to be addressed.
    But, the epidemic is especially acute, much more so than 
the national statistics, on Indian reservations many of which 
are in remote areas, many, many, many miles from other 
healthcare facilities. And that makes it very difficult because 
we have had to try to see if we could put dialysis units and 
detection and treatment centers in very rural areas.
    I cannot tell you the number of people I have talked to who 
had to go 80 miles one-way for a dialysis treatment on a remote 
Indian reservation, to be put on a bus and taken some place. 
And those are the lucky ones that get taken there. Others that 
do not get diagnosis quickly enough and lose limbs and lose 
their sight. It is such an awful disease. It ravages the body 
throughout the life of the patient.
    Caitlin, let me again say that I think it is really 
inspiring and special in my life when I meet somebody who is 
really young, and by that I mean a teenager or less even, 
somebody who is really young who is doing interesting things in 
working outside of themselves and wanting to become a part of 
something bigger than themselves.
    Ms. Baker. Thank you.
    The Chairman. You will make a difference and you will, I 
think, save lives and help other Indian children. So, I 
appreciate the work you do.
    Ms. Baker. Thank you.
    The Chairman. Let me thank all of you. This Committee, as I 
indicated, we were able to get the Indian Healthcare 
Improvement Act passed after, I believe it was 18 years since 
when it was last addressed. We able to get that signed into law 
by the President this year.
    We just in recent days, last week in fact, Thursday night, 
were able to get passed the Tribal Law and Order Act, which is 
unbelievably unimportant. We have rates of violent crimes on 
some Indian reservations that are 5 and 10 and 12 times the 
national average. It is very hard to live with any sort of 
confidence or hope for the future if you do not feel safe.
    And so, we are going to get the Indian Health Care 
Improvement Act implemented. We are going to get the Tribal Law 
and Order Act done in this Congress. And we are going to push 
very hard to get the Special Diabetes Program reauthorized. 
That is a priority for this Committee.
    And the willingness of the five of you to travel some 
distance to come and testify today is very much appreciated. We 
thank you very much.
    This hearing is adjourned.
    [Whereupon, at 11:12 a.m., the Committee was adjourned.]















                            A P P E N D I X

         Prepared Statement of the National Indian Health Board

[GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]
                                 
                                  
