[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
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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
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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
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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
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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
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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]