[Senate Hearing 106-370]
[From the U.S. Government Publishing Office]
S. Hrg. 106-370
JUVENILE DIABETES
=======================================================================
HEARING
before a
SUBCOMMITTEE OF THE
COMMITTEE ON APPROPRIATIONS UNITED STATES SENATE
ONE HUNDRED SIXTH CONGRESS
FIRST SESSION
__________
SPECIAL HEARING
__________
Printed for the use of the Committee on Appropriations
Available via the World Wide Web: http://www.access.gpo.gov/congress/
senate
______
U.S. GOVERNMENT PRINTING OFFICE
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COMMITTEE ON APPROPRIATIONS
TED STEVENS, Alaska, Chairman
THAD COCHRAN, Mississippi ROBERT C. BYRD, West Virginia
ARLEN SPECTER, Pennsylvania DANIEL K. INOUYE, Hawaii
PETE V. DOMENICI, New Mexico ERNEST F. HOLLINGS, South Carolina
CHRISTOPHER S. BOND, Missouri PATRICK J. LEAHY, Vermont
SLADE GORTON, Washington FRANK R. LAUTENBERG, New Jersey
MITCH McCONNELL, Kentucky TOM HARKIN, Iowa
CONRAD BURNS, Montana BARBARA A. MIKULSKI, Maryland
RICHARD C. SHELBY, Alabama HARRY REID, Nevada
JUDD GREGG, New Hampshire HERB KOHL, Wisconsin
ROBERT F. BENNETT, Utah PATTY MURRAY, Washington
BEN NIGHTHORSE CAMPBELL, Colorado BYRON L. DORGAN, North Dakota
LARRY CRAIG, Idaho DIANNE FEINSTEIN, California
KAY BAILEY HUTCHISON, Texas RICHARD J. DURBIN, Illinois
JON KYL, Arizona
Steven J. Cortese, Staff Director
Lisa Sutherland, Deputy Staff Director
James H. English, Minority Staff Director
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Subcommittee on Labor, Health and Human Services, and Education, and
Related Agencies
ARLEN SPECTER, Pennsylvania, Chairman
THAD COCHRAN, Mississippi TOM HARKIN, Iowa
SLADE GORTON, Washington ERNEST F. HOLLINGS, South Carolina
JUDD GREGG, New Hampshire DANIEL K. INOUYE, Hawaii
LARRY CRAIG, Idaho HARRY REID, Nevada
KAY BAILEY HUTCHISON, Texas HERB KOHL, Wisconsin
TED STEVENS, Alaska PATTY MURRAY, Washington
JON KYL, Arizona DIANNE FEINSTEIN, California
ROBERT C. BYRD, West Virginia
(Ex officio)
Professional Staff
Bettilou Taylor
Mary Dietrich
Jim Sourwine
Aura Dunn
Ellen Murray (Minority)
Administrative Support
Kevin Johnson
Carole Geagley (Minority)
C O N T E N T S
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DEPARTMENT OF HEALTH AND HUMAN SERVICES
National Institutes of Health
Page
Harold Varmus, M.D., Director.................................... 1
Phillip Gorden, M.D., Director, National Institute of Diabetes
and Digestive and Kidney Disease............................... 1
Opening statement of Senator Arlen Specter....................... 1
Opening statement of Senator Larry Craig......................... 3
Opening statement of Senator Patty Murray........................ 3
Opening statement of Senator Ernest F. Hollings.................. 4
Summary statement of Dr. Harold Varmus........................... 4
Summary statement of Dr. Phillip Gorden.......................... 5
Pace of research advances.................................... 5
New research initiatives..................................... 6
Prepared statement........................................... 7
Highlights of NIH-wide research efforts and strategies... 7
Special initiative on type 1 diabetes.................... 8
Initiative on cell-based therapies for type 1 diabetes... 8
Initiative to enhance modalities of treatment............ 9
Initiative on prevention and treatment of complications.. 9
Initiative for diabetes clinical trial network........... 9
Research partnerships.................................... 9
Stem Cells....................................................... 10
Opening statement of Senator Strom Thurmond...................... 11
Prepared statement........................................... 12
Opening statement of Senator Tom Harkin.......................... 13
Opening statement of Senator Harry Reid.......................... 15
Past and future progress in Diabetes......................... 15
Opening statement of Senator Connie Mack......................... 17
NONDEPARTMENTAL WITNESSES
Statement of Mary Tyler Moore, International Chairman, Juvenile
Diabetes Foundation............................................ 19
Prepared statement........................................... 20
Statement of Tony Bennett, entertainer........................... 21
Prepared statement........................................... 22
Statement of Alan Silvestri, composer............................ 22
Prepared statement........................................... 24
Statement of Jim Straus.......................................... 26
Prepared statement........................................... 27
Statement of Stockton Morris..................................... 28
Prepared statement........................................... 28
Statement of La Nisha Patterson.................................. 29
Prepared statement........................................... 29
Statement of Mollie Singer....................................... 30
Prepared statement........................................... 31
Statement of Will Smith.......................................... 31
Prepared statement........................................... 32
JUVENILE DIABETES
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TUESDAY, JUNE 22, 1999
U.S. Senate,
Subcommittee on Labor, Health and Human
Services, and Education, and Related Agencies,
Committee on Appropriations,
Washington, DC.
The subcommittee met at 9:20 a.m., in room SH-216, Hart
Senate Office Building, Hon. Arlen Specter (chairman)
presiding.
Present: Senators Specter, Harkin, Craig, Hollings, Reid,
Kohl, and Murray.
Also present: Senators Connie Mack and Strom Thurmond.
DEPARTMENT OF HEALTH AND HUMAN SERVICES
National Institutes of Health
STATEMENTS OF:
HAROLD VARMUS, M.D., DIRECTOR
PHILLIP GORDEN, M.D., DIRECTOR, NATIONAL INSTITUTE OF DIABETES
AND DIGESTIVE AND KIDNEY DISEASE
opening statement of senator arlen specter
Senator Specter. The hearing of the appropriation's
Subcommittee on Labor, Health, Human Services and Education
will proceed.
This morning's hearing is a very unusual one as you have
already noted from the presence of so many beautiful young
Americans at our hearing which concerns diabetes in significant
measure. Juvenile diabetes is a terrible malady which hits
Americans of all ages but especially our younger people.
Today's hearing is designed to focus on what has been done
on medical research and what should be done and what will be
done in the future.
We have an outstanding panel of witnesses today--
celebrities Mary Tyler Moore and Tony Bennett and Alan
Silvestri are present along with Dr. Harold Varmus and Dr.
Phillip Gorden from the National Institutes of Health. And our
lead witness will be Senator Strom Thurmond who is opening the
Senate at 9:30 in his capacity as President Pro Tempore but he
will be joining us soon.
I want to express my regrets at some of the schedule shifts
and a little delay here. But today is a very unusual day here
for the Senate because at the same time this hearing will
proceed, we're having four committees take up the issue of
espionage in China and I'm on one of those committees.
We're having the appropriations committee of the Y2K
problem. A little later the Sports Antitrust bill which is my
bill will have a hearing down the hall and all of that is
played against the panorama of the steel worker quota culture
vote. And I've just come from a large rally of steel workers
adjacent which shows you some of the panorama of problems which
confront the Senate on any day.
I want to thank especially Priscilla Mack and Rosanne
Dimenicia Hamburger for their help in putting this hearing
together and, of course, my colleague Senator Betty Lee Taylor
who is the stalwart here.
Just a word or two about the scope of the hearing before
yielding to my colleagues for their opening statements.
Diabetes is a chronic disease which significantly impairs
the body. Two major types--1, juvenile diabetes starting in
childhood or adolescence and, type 2, an adult onset typically
affects adults over 40.
Some 16 million Americans suffer from diabetes, 800,000 new
cases a year, the 6th leading cause of death, the leading cause
of adult onset blindness and a major contributor to kidney
disease, heart disease, stroke, nerve disease, and amputations.
On the issue of funding for research, in fiscal year 1999
we had a $449 million appropriation which was a $62 million
increase. Some 16 of the National Institutes of Health, where
there are 22 institutes, 16 are involved in one way or another
with diabetes.
The core problem which we're facing right now is how much
money we're going to put up for medical research. The Senate of
the United States voted 99 to nothing to double NIH funding
over 5 years.
That was the sense of the Senate resolution. But when the
time came to put up the hard cash, it wasn't there. Two years
ago we had a negative vote of 63 to 37 against a significant
addition. Last year it was 57 to 42 against a big addition and
this year the vote was 52 to 48 against a big addition.
But the members of this subcommittee took the lead. Senator
Harkin, a very strong fighter--he'll be here I think shortly,
my ranking member. We took the lead with a very sharp pencil
and found $2 billion to increase NIH funding last year and that
means a lot for diabetes and juvenile diabetes.
And we're working now to see if we can't find the money
again. It is difficult because of a budget agreement where we
have caps and it is difficult because the health issue, the
health research competes with education, workers safety and
many other very, very important programs. But the kind of a
turn out we have here today is a very strong signal to the
Senate of the United States and the Congress of the United
States that more has to be done.
My own view is that every single research grant application
which is meritorious ought to be funded by the Federal
Government, every single one.
We have a national budget of $1.7 trillion. And if we set
our priorities right, there's no reason why the $15.6 billion
cannot be increased this year by $2 billion and increased in
the future.
Some say we can't afford it and I say we cannot afford it.
But that's where the issue lies. And your support and your
presence here today will make the difference.
We're going to proceed in our early bird rule in order of
arrival. So I'll turn now to our distinguished Senator from
Idaho, Senator Larry Craig, for an opening statement.
opening statement of senator larry craig
Senator Craig. Mr. Chairman, thank you very much. You've
recognized so many of the celebrities who have lent their name
and their energy to this important cause.
But to all of you young people here today, let me visit
with you for a few moments. You've been sitting here for quite
a time and I hope that you understand why you're here.
It is extremely valuable for us who work in government on
your behalf to put a face to what we do, to really understand
why we do certain things. We have an important job but that job
is to allocate America's resources for important reasons. And,
as the chairman just said, there are a good many choices and
there are a lot of very necessary causes.
But when all of you come and you are here and you visit
with us or your Senators, you put a face to the need. That
helps us a great deal.
In my State of Idaho a beautiful young lady I met this
morning, Emily--hi, Emily. She has just put a face to the need
in Idaho. And there are thousands of Emilies across the country
and there are hundreds in Idaho who need our help because we
can offer the resources in a way that no other entity in our
country can and to the areas where the research can really mean
something to make you all healthy or more importantly to allow
you to live normal lives and that's why this hearing is here
today and why we're here.
I'm pleased to be one of those Senators who is allowed to
participate along with all of you in the first Juvenile
Diabetes Foundation International Children's Congress. Because
you're the first, that means that next year and the next year
others like you will come and you need to continue to come to
visit with your members of Congress to tell them how important
those appropriations are to do the research, to do the funding,
to allow you to live normal and healthy lives.
So thank you very much for being with us this morning and
we thank all of you, the celebrities and the celebrities for
lending your names and your energy to this important cause.
Thank you, Mr. Chairman.
Senator Specter. Thank you very much, Senator Craig.
Senator Murray.
opening statement of senator patty murray
Senator Murray. Thank you very much, Mr. Chairman, for
having this hearing today. Welcome to all of you. It is great
to have you with us this morning.
I want to thank the chairman for having this extremely
important hearing about juvenile diabetes and its affect and
join Senator Craig in saying having all of you here this
morning and putting a face to this issue really does make a
difference. I want to thank Nancy Stockton--Nancy, raise your
hand--who is here with me from Washington State.
Nancy was diagnosed when she was 2 and she is now, I
believe, 13 and has come all the way across the country from
Washington State to Washington, D.C., and we're delighted to
have you here. Thank you for the work you're doing.
So many families are touched by juvenile diabetes. I knew
the word but I didn't know the meaning until my own niece was
diagnosed several years ago as a young teenager. She has
struggled throughout to gain control of her disease and I am so
proud of the fact that Morgan Johns graduated from high school
just a week ago after going through an awful lot in her life
and helping me to understand what the diagnosis of diabetes
means to hundreds and hundreds of young people like her.
So I am committed to this cause and I agree with the
chairman that research is absolutely necessary. We need to find
out all we can to control this disease but we also have to make
sure that access is there. If we find a cure and people are
denied access because their insurance won't pay for it, all the
research in the world won't make a difference.
So I hope, Mr. Chairman, that we can deal with the patient
bill of rights as well so that we can find a cure and make sure
that all young kids have access to the care that they need.
Senator Specter. Thank you, Senator Murray. Senator
Hollings.
opening statement of senator ernest f. hollings
Senator Hollings. Thank you, Mr. Chairman.
Back in 1954 Bobby Kennedy, Ham Richardson and myself were
3 of the 10 men of the year. Ham Richardson was the tennis
star, captain of the Davis Cup team. He suffered from juvenile
diabetes. I became interested with my friendship with him and
under the leadership of Mary Tyler Moore we launched the
Institute of Diabetes at the National Institutes of Health and
it has done a magnificent job and we've got to keep it going.
We're talking here, as the chairman has noted, not merely
of just saving lives but saving money. We find from studies
every dollar we invest in women, infants and children's feeding
we save $3. Head start, $4.5. For Title I for the disadvantaged
in education, $6.25. And for every dollar we invest in the
National Institutes of Health we save $13.50.
So let's get about saving some money here this morning.
Thank you, Mr. Chairman.
Senator Specter. Thank you very much, Senator Hollings.
summary statement of dr. harold varmus
We're going to proceed now with our second panel, Dr.
Harold Varmus and Dr. Phillip Gorden. Senator Thurmond will be
joining us in a few minutes. If we may, we'll interrupt the
testimony to hear from Senator Thurmond at that time.
Our lead witness, Dr. Harold Varmus, has been the director
of the National Institutes of Health since November 1993. At
the University of California at San Francisco he earned the
Nobel Prize for his work on the causative link between genes
and cancer. He is a graduate of Amherst College, Harvard
University and the Columbia Medical School.
Dr. Varmus, we thank you for your outstanding work and we
welcome you here today and the floor is yours.
Dr. Varmus. Thank you, Senator Specter.
Mr. Chairman, I appreciate your holding this hearing and
your unstinting leadership to increase the budget for medical
research in this country to benefit not only these delightful
children who are sitting in front of us but children and adults
with many other disorders as well.
As you have pointed out, the NIH through 16 of our
institutes and centers supports research on diabetes mellitus
and in a moment I will turn the microphone over to Dr. Phil
Gorden, the director of the National Institutes of Diabetes and
Digestive and Kidney Diseases, who will present the majority of
the testimony.
As you know, research is proceeding at a great pace on many
fronts and much of that is due to the very generous increases
we've received from your committee last year in particular and
previous years in addition. We are grateful to you for your
support. That's the way in which our work can be most rapidly
advanced toward our efforts to understand and to control and to
ultimately eradicate this and many other disorders.
I also want to express my appreciation to the Juvenile
Diabetes Foundation for helping to organize this hearing and
for working with the NIH in such a collaborative and collegial
fashion to assist our efforts to make progress against diabetes
mellitus. Thank you.
Senator Specter. Thank you very much, Dr. Varmus.
summary statement of dr. phillip gorden
We turn now to Dr. Phillip Gorden who became director of
the National Institute of Diabetes and Digestive and Kidney
Disease at the National Institutes of Health in 1986, and had a
very distinguished career there. He began in 1966 after earning
his BA and MD at Vanderbilt University.
Thank you for joining us, Dr. Gorden, and we look forward
to your testimony.
Dr. Gorden. Thank you very much, Mr. Chairman. I appreciate
very much the opportunity.
Mr. Chairman and members of the committee, consistent with
the focus of today's hearing and the very special audience
here, I will address my testimony towards diabetes in children,
who in many ways suffer most from the disease.
Children with type one diabetes must have daily insulin
injections to survive. They and their families must monitor
blood glucose levels and adjust their diet and activities
throughout the day. Although the value of blood glucose control
is clear, this therapy is extremely difficult and must be made
better and easier for everyone.
pace of research advances
I'd like to emphasize several points that are central to
present and future efforts to prevent and treat diabetes. We're
witnessing rapid advances in genetics that underlie our effort
to find the cause of many diseases, including diabetes. New
discoveries of ways to manipulate the immune system have
important implications for diabetes prevention and treatment.
Key clinical advances have shown how control of blood pressure
and serum lipids and cholesterol is important for the
comprehensive care of diabetic patients. The Diabetes Control
and Complication Trial demonstrated that complications of
diabetes affecting the eye, kidney and nerves can be
ameliorated or prevented by careful blood glucose control.
These results have been extended and added to by recent
studies using laser photocoagulation to treat diabetic eye
disease and ACE inhibitors to treat diabetic kidney disease.
Together, these advances represent major steps towards our
continued quest for a cure. However, they further emphasize the
urgent and compelling need to develop better technologies to
both manage blood glucose levels and to treat complications.
We have the tools to identify individuals at high risk for
type 1 diabetes and have demonstrated that diabetes can
actually be prevented in animal models. These strategies are
now being applied in a major, multi-center clinical trial
designed to delay the onset of type 1 diabetes.
new research initiatives
We have sought the best advice possible from the scientific
and voluntary diabetes community. We've accelerated and
enhanced our efforts based on recommendations from the special
trans-NIH workshop, which has been complemented by the recently
completed Strategic Plan of the Diabetes Research Working
Group. We have already initiated many recommendations and will
continue to build upon them in the future.
We're exploiting the fruits of biotechnology with attention
especially given to treatment and prevention. Initiatives have
been launched to develop therapies to achieve normal glucose
levels and to understand the mechanisms by which high glucose
levels result in the late complications of diabetes.
We are embarking on a new and exciting initiative to
restore insulin--producing capacity through islet cell
transplantation. This research is being propelled by a
remarkable series of advances.
Recent studies in primates have shown that both insulin-
producing islet cells and kidneys can be transplanted using a
highly selective method to control for immune rejection of the
transplant.
Paralleling this initiative is a major new collaborative
effort on immune tolerance within our intramural program. This
effort is complemented by efforts across NIH from NIDDK and
NIAID, along with the JDF, to broaden this effort into a
network of major collaborative institutions around the country.
In closing, I would like to mention the productive research
collaboration between the NIH and voluntary health
organizations such as the Juvenile Diabetes Foundation. These
partnerships span the gamut of basic research and clinical
application across many institutes and centers.
Mr. Chairman, I've tried to emphasize that we at the NIH
truly understand the heavy burden that diabetes places on
families. At the same time, I want to share my feeling of great
encouragement and hope because of the pace at which diabetes
research is moving.
I believe our strong national research programs hold the
key to curing this disease for all children and their families.
prepared statement
Mr. Chairman, the bottom line of my statement is that our
work has made the health of the children in this room better.
Our goal in the future is to continue that healthy direction
and also to make their lives easier. I will be happy to answer
any questions you may have.
Senator Specter. Thank you very much, Dr. Gorden.
[The statement follows:]
Prepared Statement of Dr. Phillip Gorden
Mr. Chairman, I am Phillip Gorden, the Director of the National
Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), which
has lead responsibility for diabetes research at the National
Institutes of Health (NIH), within the Department of Health and Human
Services. I appreciate the opportunity to testify before this
subcommittee about NIH research to understand, treat, prevent, and
ultimately cure diabetes.
In both human and economic terms, diabetes is an extremely costly
disease. It affects an estimated 16 million Americans, including both
genders, the young and the old, all races and ethnic groups, the rich
and the poor. Consistent with the focus of today's hearing, I will
address my testimony toward diabetes in children, who, in many ways,
suffer most from the disease. They have the disease from an early age
and must endure lifelong treatment. They must carefully adjust what
they eat and everything they do--from schoolwork to sports--in order to
manage their disease. Even with a continuous struggle to follow such
rigorous regimens, they may still develop serious, long-term
complications of diabetes.
Children with type 1 diabetes must have daily insulin injections to
survive. They and their families must monitor their blood glucose
levels throughout the day. While the value of maintaining blood glucose
control is clear, this therapy is extremely difficult, and must be made
better and easier for everyone.
Based on case reports and clinic-based studies, new information is
emerging about children with type 2 diabetes. It appears that these
children are not dependent upon insulin injections; however, their
cells and tissues are resistant to insulin. Some may require insulin to
maintain control of their blood glucose. The number of children with
type 2 diabetes is increasing in our population and the age of onset is
now occurring earlier. This is a special problem in racial and ethnic
minority populations, who suffer disproportionately from diabetes, as
well as from obesity--a major risk factor for type 2 diabetes. In most
cases, type 2 diabetes in children appears as a complex, polygenic
disease similar to that seen in adults. The NIDDK will be bringing
together pediatric endocrinologists from across the United States to
share information on the emerging problem of type 2 diabetes in
children.
highlights of nih-wide research efforts and strategies
I would like to emphasize several points that are central to
present and future efforts to treat diabetes effectively and ultimately
cure it. The many institutes and centers of the NIH have a broad and
multifaceted research agenda to treat, prevent and cure diabetes. The
trans-NIH diabetes effort has led to major clinical advances in
diabetes, and clues in the search for a real cure. We are witnessing
rapid advances in genetics and genomics that underlie our goal to find
and eliminate the cause of many diseases, including diabetes.
Discoveries of mechanisms to manipulate the immune system have
significant implications for diabetes prevention and treatment. Major
new understandings of cell communication are critical to diabetes. Key
advances in clinical research are showing how the control of blood
pressure and serum cholesterol, as well as other lipids, is important
in the comprehensive care of patients with diabetes.
The Diabetes Control and Complications Trial (DCCT) demonstrated
that the complications of diabetes affecting the eye, kidney and nerves
can be ameliorated or prevented. These results have been extended by
the clinical progress achieved in treating diabetic eye disease with
photocoagulation, and the use of drugs--such as ACE inhibitors--for the
kidney disease of diabetes. Together, these advances represent major
steps forward in our continued quest for a cure. However, they also
further emphasize the compelling need to develop better technologies
both to manage blood glucose levels and to treat complications more
effectively and directly.
In the past decade, investigators supported by the NIDDK, the
National Institute of Child Health and Human Development (NICHD), and
the National Institute of Allergy and Infectious Diseases (NIAID) have
been able to establish immune, metabolic, and genetic screening tests
to identify individuals at high risk for developing type 1 diabetes. In
animal models and in preliminary human trials, researchers have also
shown that low-dose insulin therapy may prevent or delay the onset of
the clinical manifestation of type 1 diabetes. Thus, scientists can
identify individuals at high risk for type 1 diabetes and intervene
with a safe and possibly effective therapy. These tools are now being
applied in a major multi-center clinical trial cosponsored by the
NIDDK, NIAID, NICHD, the Juvenile Diabetes Foundation International
(JDF) and the American Diabetes Association to prevent or delay the
onset of type 1 diabetes. This trial is called the Diabetes Prevention
Trial-1, or DPT-1. Another clinical trial, ``Prevention of
Cardiovascular Disease in Diabetes,'' will generate knowledge that will
be important for preventing heart and vascular disease in early onset
type 1, as well as type 2 patients. The National Heart, Lung, and Blood
Institute (NHLBI) is sponsoring this trial, in conjunction with the
NIDDK. We at the NIH join the children and families touched by diabetes
in a shared effort to support vigorous, promising research aimed at the
prevention, treatment and cure of this disease and have been pleased to
collaborate with voluntary organizations, such as the JDF, in fruitful
research partnerships.
To guide our diabetes research programs, we have sought the best
advice possible from the scientific and voluntary diabetes community.
For example, we have accelerated and enhanced our efforts based on a
special trans-NIH workshop, entitled ``Diabetes Mellitus: Challenges
and Opportunities''--complemented by the Strategic Plan of the Diabetes
Research Working Group. We have already initiated many recommendations
from these processes and will continue to build upon them in the
future. I am pleased to share with you today some of our most recent
efforts, which relate to diabetes in children. A number of these have
been undertaken in partnership with other NIH Institutes, other
agencies, and voluntary organizations.
special initiative on type 1 diabetes
I am pleased to report progress on a special, NIH-wide initiative
for innovative, clinically relevant and multidisciplinary research
aimed at the treatment and cure of type 1 diabetes. This initiative is
relevant to all of the scientific opportunities in type 1 diabetes
research today, but especially to the development of more effective
therapies, which can be easily administered and followed. Through this
initiative, we are seeking the best research talent from diverse
fields, the most promising research ideas, and the most technologically
advanced research tools for combating type 1 diabetes. We are
exploiting the fruits of the biotechnology revolution, with special
attention to clinical issues.
Initiatives have been launched to develop therapies to achieve
normal glucose levels in people with type 1 diabetes and to develop
improved glucose sensors for regulating blood glucose. They also
include expanded programs to understand the mechanisms by which high
glucose levels result in the late complications of diabetes; to apply
this information to the development of ways to prevent, limit or
reverse complications associated with diabetes; and to understand the
role of factors important in disease development.
This year special funds for type 1 diabetes research appropriated
in the Balanced Budget Act of 1997 are being used to focus on the
mechanisms by which the disease results in painful and disabling
neuropathies and other neurological complications; identification of
stem cells and factors that regulate development and differentiation of
pancreatic beta cells through the establishment of a functional
genomics resource in diabetes; and pilot studies for new therapies for
type 1 diabetes and its complications.
initiative on cell-based therapies for type 1 diabetes
We are embarking on a new and exciting initiative to restore
insulin-producing capacity through transplantation of the whole
pancreas, or of islets from the pancreas. This research is being
propelled by an impressive series of advances. Recent studies in
primates have shown that both insulin-producing islet cells and kidneys
can be transplanted using a highly selective method to control for
immune rejection of the transplant. This new technology involves what
is referred to as ``blockade of the co-stimulatory pathway.'' It allows
for a selective form of immune tolerance and does not require
suppression of the overall immune system, as is required by
conventional therapy for organ transplantation.
Paralleling this initiative is a major, new, collaborative effort
on immune tolerance within the intramural program of NIH. The research
partnership involves the NIDDK, the Warren Grant Magnuson Clinical
Center, the Department of Defense, and the Diabetes Research Institute
of the University of Miami. The strategy under study is relevant to
both the treatment of type 1 diabetes and kidney transplantation.
Furthermore, there is a major, additional joint effort involving NIDDK,
NIAID and the JDF to broaden this program into a network of
collaborating institutions.
initiative to enhance modalities of treatment
We are working diligently to develop a wide range of new and more
effective therapies for avoiding the consequences of low blood glucose
levels and for improving the treatment of diabetes. For example, the
NICHD is supporting two comprehensive studies in adolescents on how low
blood glucose levels affect learning skills and how the undesirable
effects of multiple daily insulin injections affect compliance. We are
also pioneering the development of glucose sensors and mechanical
systems to facilitate insulin administration and thus ease the burden
of this therapy for children and adults who are insulin-dependent.
One exciting recent advance may well have important therapeutic
implications with respect to the immune system's attack on its own
insulin-producing cells in type 1 diabetes. Researchers have shown that
a protein called GAD, which is expressed by beta cells, controls the
development of diabetes in an animal model of human type 1 diabetes.
The demonstration that this protein initiates autoimmune diabetes
builds on an earlier NIH-supported advance, which showed that cells
specifically reactive against GAD directly produced beta cell injury in
a mouse model. This avenue of research could have important
consequences for the development of new therapies to prevent type 1
diabetes, provided these findings can be extended to human disease.
We also hope that new clinical advances will emerge from other NIH-
supported investigations of pancreas and islet transplantation in
animals. This work includes studies on ways to regenerate the pancreas;
to develop methods to enable the protection and survival of implanted
insulin-producing cells; and to discover innovative approaches to
prevent graft rejection by induction of immune tolerance.
initiative on prevention and treatment of complications
Multiple NIH institutes are participating in a major initiative to
combat the eye, nerve, kidney and vascular system complications of
diabetes. These efforts include the search for genes that make
individuals with diabetes particularly susceptible to developing one or
more of these complications. Also featured is a new emphasis on
understanding and treating diabetic nerve disease, and the inauguration
of a major clinical trial aimed at reducing the cardiovascular
complications of diabetes. These research areas have been identified as
having high priority by the Diabetes Research Working Group.
initiative for diabetes clinical trial network
One of the recommendations of the Diabetes Research Working Group
is to establish a Diabetes TrialNet to foster clinical studies. In
response, the NIDDK recently provided administrative extensions to the
centers involved in the ongoing DPT-1, while a task force considers
approaches for establishing such a network for future studies of
prevention and treatment of type 1 diabetes. A component of this
initiative will probably include support for the infrastructure for
clinical researchers and nurses to conduct research; a central data
coordinating center; central laboratories, mechanisms to review and
prioritize research projects; and, databases of research volunteers,
investigators and projects. Such a diabetes clinical research network
would provide the necessary infrastructure for the efficient, rapid
evaluation of promising new therapeutic approaches.
research partnerships
In closing, I would like to mention just two examples of the many
beneficial research collaborations between the NIH and voluntary health
organizations, such as the JDF. The NIDDK-JDF centers of excellence
program represents a productive research partnership and a model that
has been adapted by several other NIH institutes. Also, the JDF and the
NICHD are now co-funding a study of 12,000 infants who are at various
levels of genetic risk for type 1 diabetes in order to detect the
earliest evidence of immune attack on the insulin producing cells of
the pancreas. These examples reflect the strong relationships the NIH
and voluntary health organizations have formed to accelerate research
progress.
Mr. Chairman, I am grateful for the opportunity to share with you
recent and exciting NIH efforts focusing on diabetes in children. I
have tried to emphasize today that we at the NIH truly understand the
great burden diabetes places on families. At the same time, I want to
share my feelings of great encouragement and hope because of the pace
at which diabetes research is moving. I believe that our strong
national research programs hold the essential key to curing this
disease for the benefit of all children and their families. I am
pleased to answer any questions you may have.
Stem Cells
Senator Specter. I begin with a question which is very
sensitive but very important and that is the issue of stem
cells as they may apply to a cure of juvenile diabetes.
At a previous hearing by this subcommittee, Dr. Douglas
Melton, chairman of the Department of Molecular and Cellular
Biology at Harvard University and a father of a 7-year-old
diabetic son testified that: ``the work with mouse stem cells
is so encouraging that one is within a few years of being able
to direct those cells to become pancreatic cells. He reiterated
the importance of stem cell research in finding a cure for
diabetes.''
I bring this subject up because there is currently a
prohibition for NIH funding on embryos. There has been a
procedure adopted where private funds are used to extract stem
cells from embryos and then NIH through the Council of Health
and Human Services has said that it is appropriate under
existing law to use Federal funding on the stem cells which
have been extracted.
Now this is very similar to a problem which we had with
fetal tissue where there was a concern that fetal tissue might
cause abortions as opposed to the practice of using fetal
tissue after the abortion had been completed so that the use of
fetal tissue was not the cause of an abortion. Similarly these
embryos are discarded. They are not to be used for in vitro
fertilization or to create life.
Now the medical question that I have for you is a two-part
question. How important are stem cells in the research to find
a cure for diabetes, juvenile diabetes and how close are we
with adequate funding? This is a question which we always get
when we want to add $2 billion. What's the result?
I know scientifically it is hard to quantify. But we had
testimony at an earlier hearing on Parkinson that we were
within 5 years, 10 years at the outside of curing Parkinson.
Now to what extent can you experts shed light on the question
as to how close we are to curing diabetes, juvenile diabetes
and to what extent is this stem cell research integral to that
result?
Dr. Varmus. Let me comment briefly, Mr. Chairman. I agree
with Professor Melton's opinion. Dr. Melton is in the audience
today and is a distinguished authority in this field and I
would agree with his opinion that stem cell research is one of
the most important leads we have to approaching a cure for
juvenile diabetes.
As you heard on previous occasions, there is some
difference of opinion about how long it would take to get to
any end point, like, the cure of a certain disease.
I think it's fair to say that we should expect, if
investigators are allowed to use Federal funds for the pursuit
of stem cell research, that within the next 5 or 10 years we
would at least learn how to differentiate those cells to make
insulin producing cells. How easy it will be then to use those
cells in transplantation experiments to effect the amelioration
of the cure of the disease that we all seek is, I think,
difficult to estimate.
Senator Specter. While my yellow light is still on, are the
stem cells very important to finding a cure for diabetes,
juvenile diabetes?
Dr. Varmus. Yes, they are very important. They are one of
the several important leads including the efforts to control
immune rejection that Dr. Gorden mentioned and a number of
other possibilities that we haven't discussed here today. But I
would say stem cells are among the three or four most promising
leads we have toward finding an ultimate solution to juvenile
diabetes.
opening statement of senator strom thurmond
Senator Specter. We've been joined by our distinguished
President Pro Tempore Senator Strom Thurmond. Senator Thurmond,
if you would come forward to the witness table, we will swear
you in and hear your testimony.
Dr. Varmus. Should we retreat, Senator, or should we just
stay where we are?
Senator Specter. You may stay there.
Senator Thurmond. Thank you very much.
Senator Specter. For those of you who don't know, Senator
Thurmond is the longest serving U.S. Senator. He opened up the
Senate this morning as is the job of the President Pro Tempore
in the absence of the Vice President who presides over the
Senate constitutionally.
Senator Thurmond has had an extraordinary career as a
candidate for President and Governor of South Carolina, a U.S.
Senator for 45 years, chairman of the Judiciary Committee and
chairman of the Armed Services Committee, was a leader in our
battle to turn the tide on the use of fetal tissue for medical
research.
Senator Thurmond, we welcome you here especially and look
forward to your testimony.
Senator Thurmond. Thank you very much. I want to
congratulate you for your fine work in the Senate.
Senator Specter. Thank you very much.
Senator Thurmond. Mr. Chairman, I am pleased to testify
today in support of funding increases in the fight against
diabetes. Diabetes is a chronic and often fatal disease
affecting more than 16 million Americans. Billions of dollars
is spent annually to care for those afflicted with this
disease.
It is the sixth leading cause of death in the United States
and a major cause of kidney disease, heart disease, amputation
and adult blindness. Scientists tell us that medical research
hold a cure for diabetes yet the problem persists.
Recent evidence indicates that we are on the verge of
uncovering new prevention, screening and treatment procedures
that will dramatically improve diabetes therapy and lead to a
cure in the very near future.
I believe that at this critical juncture in the fight to
end diabetes, it is imperative that we provide additional
funding to our scientists who are on the verge of finding a
cure. Every year over $100 billion is spent caring for the 16
million citizens suffering from the complications of this
devastating disease.
A report released in February by the congressionally-
mandated diabetes research working group has called upon the
National Institutes of Health to substantially expand their
support for diabetes research and has identified specific
research recommendations as part of a new national plan to find
a cure.
The report calls for a $827 billion investment for diabetes
research in the National Institutes of Health in the fiscal
year 2000. In light of the emotional and financial burden that
diabetes brings to our country, I believe that this funding
increase represents a prudent, invaluable investment in our
nation's future.
prepared statement
I urge this committee to support this appropriation request
so that we can end diabetes and end the pain that this disease
brings to its sufferers and loved ones.
I wish to thank you, Mr. Chairman, and the members of the
committee for your consideration.
[The statement follows:]
Prepared Statement of Senator Strom Thurmond
Mr. Chairman, I am pleased to testify today in support of funding
increases in the fight against Diabetes. Diabetes is a chronic, and
often fatal, disease affecting more than 16 million Americans. Billions
of dollars are spent annually to care for those afflicted by this
disease. It is the sixth leading cause of death in the United States
and a major cause of kidney disease, heart disease, amputation, and
adult blindness. Scientists tell us that medical research holds a cure
for diabetes, yet the problem persists.
Recent evidence indicates that we are on the verge of uncovering
new prevention, screening and treatment procedures that will
dramatically improve diabetes therapy and lead to a cure in the very
near future. I believe that at this critical juncture in the fight to
end diabetes, it is imperative that we provide additional funding to
our scientists who are on the verge of finding a cure. Every year, over
$100 billion is spent caring for the 16 million citizens suffering with
the complications of this devastating disease.
A report released in February by the Congressionally-mandated
Diabetes Research Working Group has called upon the National Institutes
of Health to substantially expand its support for diabetes research and
has identified specific research recommendations as part of a new
national plan to find a cure. The report calls for an $827 million
investment for diabetes research at the National Institutes of Health
in fiscal year 2000. In light of the emotional and financial burden
that diabetes brings to our Country, I believe that this funding
increase represents a prudent, invaluable investment in our Nation's
future. I urge this committee to support this appropriations request so
that we can end diabetes, and end the pain that this disease brings to
its sufferers and their loved-ones.
Senator Specter. Senator Thurmond, I think it might be of
some interest to everyone and not intrusive to bring up the
subject that you've had the problem with juvenile diabetes in
your own family. So you've had personal experience with the
terrible problem that is created here.
Senator Thurmond. I have a daughter.
Senator Specter. I might say for the record that when the
issue came up about the use of fetal tissue that Senator
Thurmond was a very strong advocate and really turned the tide
on a favorable vote in the U.S. Senate and we thank you for
your great contributions to America, Senator Thurmond.
Senator Thurmond. Thank you for your kind words.
Senator Specter. I know you have other duties. So we'll
proceed now with the round of questioning for the doctors.
Senator Thurmond. Thank you very much.
Senator Specter. Thank you, Senator Thurmond.
Opening statement of Senator Tom Harkin
I turn now to our distinguished ranking member, Senator
Harkin.
Senator Harkin. Thank you very much, Mr. Chairman. I
apologize to you and to all who are here for being a bit late
this morning. I just want to congratulate you, Mr. Chairman, on
having this hearing and bringing us all together on this very
important issue.
We're joined by a lot of distinguished guests. Perhaps the
most distinguished of whom is Ms. Tyler Joe Carston who is here
from Blairstown, Iowa. She is 11\1/2\ years old and has
struggled with this juvenile diabetes since she's been 4 years
old.
She wrote me a letter recently describing what it's been
like for her living with diabetes. She said in her letter and I
quote:
``People with diabetes never get a day off from it, even
holidays. Diabetes is every single second of every single
minute of every single hour of every single day of every year
of your life.''
But I want all of you to know that we are working hard. We
are trying to find the resources necessary to fund the
necessary research. I can assure you that Dr. Varmus and Dr.
Gorden and their colleagues at the National Institutes of
Health are doing all that they can to hasten the day when we
have an intervention and a cure for juvenile diabetes.
I want to welcome also Mary Tyler Moore. Our visit was cut
short a couple of weeks ago because of another meeting that we
had because we were trying to get more allocations for our
subcommittee to get the money to fight juvenile diabetes and a
host of other illnesses that plague us. But we still have those
battles yet to fight.
I have another quote here from the letter from Tyler
Carston. She said, and I quote, ``when we all die, we won't
need money. So why can't we find a way to use it now and give
people a chance to live.''
I'll tell you, that's a lot of wisdom for an 11\1/2\-year-
old. I tell you we can use that around here.
Last, on this issue of stem cell research. I recommend to
all the report issued by the bioethics committee headed by Dr.
Harold Shapiro of Princeton University and encourage all to
read that portion in which they clearly outline an ethical way
of approaching stem cell research. I believe we are doing it
now. And I think to cut this short would be to doom, I think, a
lot of people who suffer from diabetes and to put off that day
when we can find an intervention and a cure.
I just believe that with the confluence--I've said this
many times--of gene therapy and stem cell therapy if we can
really put the money into this research, then Dr. Varmus'
predictions that within the next decade of having some major
breakthroughs, is more than a possibility. I think it's a hard
reality.
This is not the time to back off or to back down or to
short change the research we need in this country. We are on
the verge of making great breakthroughs and I believe that stem
cell therapy really holds one of the keys to it.
Again, I'm hopeful, Mr. Chairman, that we can find the
money in our appropriations process or our allocation. I know
you're working hard on that and your staff is working hard. Now
is the time to make that final big effort to double NIH funding
and to get the necessary money that we need to progress in stem
cell and gene therapy research.
To all of you young people who are here, I really do
believe that 10 years from now we're going to have a good
intervention for this juvenile diabetes.
Thank you very much, Mr. Chairman.
Senator Specter. Thank you. We've been joined by Senator
Reid and Senator Mack and we will be hearing from them as the
round of questions proceed. We'll go in accordance with our
early bird to Senator Craig.
Senator Craig. Mr. Chairman, for the sake of time and the
anxiousness of young people, Doctors, I thank you for your
testimony and your work. And I'll submit questions for the
record.
Senator Specter. Thank you very much, Senator Craig.
Senator Hollings.
Senator Hollings. Dr. Varmus, the private effort of stem
cell application to diabetes, can you describe that for the
committee and its progress, its result, its promise?
Dr. Varmus. Senator, as you know, the research that has
been done on so-called pluripotent stem cells derived from
embryos has been carried out with money from the private sector
largely in academic labs with money from the private sector.
Because the money comes from the private sector, we
actually don't know a great deal about what is specifically
being done with cells but those cells using private resources.
No doubt there are biotech companies that are pursuing some of
the leads we've described here.
But it's my conviction and the conviction of many of my
colleagues that this work is best conducted in the open with
public money by investigators who are traditionally supported
by the NIH. In conjunction with the ruling that Senator Specter
mentioned we intend to begin funding that research as soon as
we have our guidelines fully in place and they have been
subjected to public debate.
Senator Hollings. It's legal for this approach of stem
cells. It's just a lack of money. Is that your situation?
Dr. Varmus. The situation, Senator, is the following. There
is an amendment in our appropriation bill that forbids the use
of Federal funds from this committee for the funding of
research that, with the embryo itself, that would lead to the
derivative of the cells. Our council at HHS has ruled that it's
legal for us to use those funds to support research with the
cells themselves once they've been derived.
We intend to initiate such funding but we are in the
process of setting our guidelines in place. They've been put in
the Federal Register for public comment. We believe it's also
very important because of the sensitivity of this issue to have
the full public debate and allow everyone who has views on the
matter of Federal funding for this research to have their views
expressed.
I think we also have to hear very loud and clear from
people such as those sitting in front of us who have very much
to gain from this research. There are two sides to this issue
and there are ethical concerns that have to be weighed in a
very judicial manner.
Senator Hollings. Thank you, Mr. Chairman.
Opening statement of Senator Harry Reid
Senator Specter. Thank you very much, Senator Hollings.
We've been joined by Senator Reid of Nevada. Senator Reid.
Senator Reid. Mr Chairman, thank you very much. I ask
unanimous consent that a statement that I have prepared be made
part of the record.
Senator Specter. Without objection, it will be included in
the record.
Senator Reid. Mr. Chairman, I'm very happy today to be here
because I have three special Nevedans, 10-year-old Mollie
Singer who we're going to hear from later today and her twin
sister Jackie who accompanied her here. Also, from Reno,
Nevada, in the northern part of the state we have Anna Zucker
and her family. They traveled all the way here from Reno.
Doctors Gorden and Varmus, I have the same question I want
to ask both of you and if you'd both respond, I would
appreciate it.
Past and future progress in Diabetes
First of all, what progress has been made in the last
decade with juvenile diabetes and if you lop over into diabetes
generally that would be acceptable? Also, what research is now
in progress that is worth talking about to us and what do you
expect in the next decade regarding the battle against juvenile
diabetes and diabetes generally?
Dr. Gorden. I think that a very brief summary would say
that we understand one of the primary pathologic features, that
is, the elevation of the blood sugar.
Senator Reid. But tell us what's happened in the last 10
years. Will you do that?
Dr. Gorden. We understand that careful clinical studies
that control blood glucose levels have demonstrated marked
benefits.
Senator Reid. What is the marked benefits?
Dr. Gorden. Marked benefits are a reduction in the
complications of the disease, which have to do with the
vascular system, the eyes, the kidneys and the nerves. We've
seen that happen. We know it can happen.
We've had two major clinical trials in both type 1 and type
2 diabetes that prove that unequivocally. Now, the goal is to
do two things: To prevent that blood sugar rise, which is part
of the pathology in terms of causing the complications, and to
find easier ways to ameliorate that rise if it occurs.
We are actually making considerable progress. Today I want
to emphasize one of the newest areas of research. That is the
area of immune tolerance, which gives us both the opportunity
for prevention but, perhaps more directly now, the opportunity
for new forms of treatment.
So, I think that--as we balance this off against the
progress of biologic science in general and how we're doing
clinically--we're taking advantage of all the new technologies
that are available for us.
I think children with diabetes are truly healthier, but we
must make life easier for them in the future to maintain that
good health. I think we're on the verge of that progress and we
really have the machinery to achieve it.
Senator Reid. Ten years from now, where do you think we'll
be?
Dr. Gorden. I think that 10 years from now we will clearly
have a means to both prevent and treat hyperglycemia. I hope
that we will understand a variety of causes by that time. We
have reason to believe that there may be a multiplicity of
causes for diabetes.
I hope and I believe that we will begin to make an
important inroad into understanding those causes. Once we do
that, we can apply specific therapies for each different form
of this disease, whether there be one or a hundred.
The biotechnology revolution, bio-pharmacology,
pharmacogenetics--all of these fields--are aiming directly at
capitalizing on this tremendous science and increasing the
specificity by which we can prevent and treat diseases like
diabetes. I don't think any disease has more promise for both
treatment and prevention than diabetes as we see it today.
Senator Reid. Dr. Varmus.
Dr. Varmus. I agree with my colleague about the various
clinical advances that he's described. Let me just say one word
about what I see as the vista in diabetes research. This vista
is largely created by the investment that's been made very
broadly across many fields of medical research and biology.
First, through the work on the human genome are coming to
grips with the actual genetic determinants of diabetes that
afflict all the children in this room and virtually everyone
with diabetes. Within the next 5 years or so, we're going to
know which genes contribute to the development of both type 1
and type 2 diabetes.
Second, efforts to understand the immune system have
changed our perception of the bodily ingredients that both
cause type 1 diabetes and allow us to treat it with transplants
and fetal cell or embryonic cell therapy.
Third, approaches to our understanding of the biology of
the cell--largely through studies of cancer--have given us a
very clear picture of how insulin transmits its message to a
cell. This knowledge has generated a number of important
targets for developing new drugs for the treatment of both type
1 and type 2 diabetes. I believe these targets will result in a
broadened set of drugs for the treatment of both types diabetes
over the next 10 years.
Senator Reid. Finally, Mr. Chairman, in all these hearings
where we're dealing with a specific disease, as we are here,
the side effects in a positive vein are numerous, are they not?
You indicated that studying cancer cells, you've learned a lot
about diabetes. Studying diabetes, you're going to learn a lot
about other disease, is that not true?
Dr. Varmus. Yes. We believe that, in general, when we talk
about disease-specific research, that's important. But we know
that pursuing promising research leads has benefits that extend
broadly in both directions.
Senator Specter. Thank you, Senator Reid.
Opening statement of Senator Connie Mack
Senator Specter. We're joined by Senator Mack. He used to
be a member of the committee, a leader in research generally
and cancer research, author of the Senate resolution to double
NIH funding over 5 years.
Senator Mack, we would be pleased to accord you a round of
questioning or comments.
Senator Mack. Thank you, Mr. Chairman, for the opportunity
and I will be brief. And I just want to express my appreciation
to you and to Senator Harkin and the committee for holding this
hearing and say to the families, to moms and dads and the
youngsters, thank you for being here.
I will say to you that we promise to remember you.
To Mary Tyler Moore, thank you for being the voice that has
spoken to our hearts and hopefully it will open our wallets as
well.
We have begun the effort to double the investment at NIH
and I just want to say to both Senator Specter and to Senator
Harkin that all of us appreciate the effort that you've been
making even before the concept or the idea of doubling the
investment. The two of you have worked together regardless of
who has been chairman and who has been the ranking member. The
two of you have worked together to try to see that the
resources that are necessary are put into the fight against
disease.
My wife Priscilla and I have been engaged in the fight
against cancer. But I think what each of us experiences,
regardless of what the disease is, is the impact on our loved
ones. And I think that all of us, again regardless of what the
disease is, recognize that we have come into a new age, if you
will, an age of knowledge, knowledge about the specifics that
affect the individual diseases.
Most of us believe that by putting more money into the
effort, what we're doing is shortening the time when we will
eventually find either a cure or some way to modify the effect
of the disease on those that we love so dearly.
Again, Mr. Chairman, thank you for holding this hearing. I
wish I could stay. I've got a markup in a finance committee
that I'll be going to shortly. But, again, thank you for doing
this. Dr. Varmus, thank you for your leadership at NIH.
Senator Specter. Thank you very much, Senator Mack. There's
a great deal more we could explore, Dr. Varmus and Dr. Gorden.
But we have quite a number of other witnesses.
We've had an extraordinary group of witnesses on the scene
here. This is where the photographers usually congregate. And
they've been extraordinarily patient and good. So we're going
to try to move the proceeding along.
Thank you, Dr. Varmus. Thank you, Dr. Gorden.
We now turn to our panel with Ms. Mary Tyler Moore, Mr.
Tony Bennett and then Mr. Alan Silvestri.
While our witnesses are coming forward, I might just
comment about two matters that I heard of last week. My former
executive director in Philadelphia reported to me--told me that
his 13-year-old daughter had leukemia. My chief of staff here
in Washington told me about a nephew who had a tumor on his
shoulder blade of cancer which would have to be excised. We
have letters in these big mailbags written to Members of
Congress from people who have been suffering from diabetes,
juvenile diabetes.
When we see the specific children, the specific people who
have been victims of these dreaded diseases, it just really
emphasizes the necessity to leave no stone unturned and no
dollar unspent where it can be directed helpfully to the cause
of medical research and beyond.
NONDEPARTMENTAL WITNESSES
STATEMENT OF MARY TYLER MOORE, INTERNATIONAL CHAIRMAN,
JUVENILE DIABETES FOUNDATION
Senator Specter. We now turn to one of America's leading
advocates on the subject if not America's leading advocate. Ms.
Mary Tyler Moore is probably best known for her television
roles in the Dick Van Dyke Show and the Mary Tyler Moore Show.
She received an Emmy in 1992 for her role in ``Stolen Babies''
and was nominated for an Oscar in ``Ordinary People.'' Broadway
honored Ms. Moore with a special Tony for ``Whose Life Is It
Anyway.''
Ms. Moore has lived with diabetes for over 30 years and has
worked to raise public and congressional awareness of this
malady. She serves as the international chairman of the
Juvenile Diabetes Foundation.
Welcome, Mary Tyler Moore, and we look forward to your
testimony.
Ms. Moore. Thank you very much, Mr. Chairman.
As the international chairman of the Juvenile Diabetes
Foundation and on behalf of the hundreds of thousands of
children with diabetes and their families who cherish them and
guard their futures, I thank you for giving me and this first
JDF Children's Congress the chance to appear before you today.
Diabetes is one of the most common chronic diseases of
childhood. And, as all of the children and families here today
know first-hand, it changes everything about a child's and a
family's every day life.
To add to the day in and day out hassles of living with
diabetes, the balancing of diet and exercise and insulin, the
shots, the terrible episodes of low sugar, the debilitating
feelings of high sugars is the knowledge that even if you do
all you can to be normal, you're not. You're different and you
face the uncertainty of an adulthood visited upon by early
blindness, kidney failure, amputation, heart attack or stroke.
You know insulin is not a cure as will the 30,000 children
who will be diagnosed this year with diabetes. What gives us
all hope at JDF is the promise of research and the commitment
of this committee and you, Mr. Chairman and Senator Harkin, to
make doubling the NIH budget over the next 5 years a top
priority.
Further, we appreciate last year's 15 percent down payment
on that doubling and have confidence that you are up to the
challenge of taking the next step, another $2 billion increase
for NIH this year.
Of course, within that overall increase at NIH, we urge you
to once again identify diabetes research as an area of great
opportunity and need and a top priority at every NIH institute.
Mr. Chairman, the justification for increases in diabetes
research has been provided by the recently released report of
the Congressionally Mandated Diabetes Research Working Group.
The DRWG Diabetes Research Panel has put forward an accelerated
and expanded diabetes research program at NIH. The panel
recommends a fiscal year 2000 appropriation of $827 million for
diabetes research.
The DRWG report identifies numerous major opportunities not
being pursued because of lack of funds and focus. They include
potential high impact initiatives in the genetics of diabetes,
the biology of the beta cell, the treatment of diabetes-related
eye disease, kidney disease, nerve disease, heart disease and
the development of a vaccine for prevention of type one
diabetes.
All of these initiatives were identified as high priorities
by DRWG and are of particular importance to children with type
one diabetes.
I want you to know that you are not the only one we are
challenging to double research budgets. We've challenged
ourselves at JDF. In 1998 we gave about $30 million to
research; in 1999, $55 million. And in 2000 we will give more
than $75 million and by 2002 we project giving more than $120
million to research. Now that's a doubling of every 3 years.
Mr. Chairman, you and the committee can take credit through
your past commitments to NIH for having helped bring us to the
threshold of this cure. And we at JDF have been proud to be
your partners in this absolutely crucial endeavor.
We know that this is a particularly difficult year for
appropriations but we cannot lose momentum, not now that we are
so close.
So I ask you, Mr. Chairman, members of the committee, look
around this room--look around once more. Listen to the voices
of the children who will tell you their stories today. And when
you retire to your deliberations, promise to remember them, to
remember that more than 16 million people who like me have
diabetes and promise to work with NIH to ensure that funding is
provided so that all identified research opportunities in the
DRWG report are explored.
prepared statement
At a minimum we need to be able to tell the children and
their loved ones that we are investing the dollars necessary to
find the cure. Thank you.
Senator Specter. Thank you very much, Ms. Moore.
[The statement follows:]
Prepared Statement of Mary Tyler Moore
As International Chairman of the Juvenile Diabetes Foundation and
on behalf of the hundreds of thousands of children with diabetes and
the families that cherish them and guard their futures, I thank you for
giving me and this first JDF Children's Congress the chance to appear
before you today.
Diabetes is one of the most common chronic diseases of childhood,
and as all of the children and families here today know, first hand, it
changes everything about a child's and a family's everyday life. And to
add to the day-in, day-out hassles of living with diabetes--the
balancing of diet, exercise, and insulin, the shots, the terrible
episodes of low sugar, the weird feelings of high'sugars--is the
knowledge that even if you do all you can to be as normal as possible,
you're not, you're different, and you face the uncertainty of an
adulthood visited upon by early blindness, kidney failure, amputation,
heart attack or stroke. You know insulin is not a cure, as will the
30,000 children who will be diagnosed this year with diabetes.
What gives us all hope, at JDF, is the promise of research, and the
commitment of this Committee, and you, Mr. Chairman and Senator Harkin,
to make doubling the NIH budget over the next five years a top national
priority. Further, we appreciate last year's 15 percent ``down-
payment'' on that doubling and have confidence you are up to the
challenge to take the next step--another $2 billion increase for NIH
this year. Of course within that overall increase at NIH we urge you
to, once again, identify diabetes research as an area of great
opportunity and need, and of top priority at every NIH institute.
Mr. Chairman, the justification for increases in diabetes research
has been provided by the recently released report of the
congressionally mandated Diabetes Research Working Group. The DRWG
report, drafted by a national panel of diabetes research experts, puts
forward an accelerated and expanded diabetes research program at NIH.
The panel recommends an fiscal year 2000 appropriation of $827 million
for diabetes research.
The DRWG report identifies numerous major opportunities not being
pursued because of lack of funds and focus. They include potential high
impact initiatives in: the genetics of diabetes; the biology of the
beta cell; the treatment of diabetes related eye-disease, kidney
disease, nerve disease, and heart disease; and the development of a
vaccine for prevention of Type 1 diabetes. All of these initiatives
were identified as high priorities, by DRWG and are of particular
importance to children with Type 1 diabetes.
I want you to know that you are not the only one we are challenging
to double research budgets, or focus expenditures on better responding
to public needs. We have also challenged ourselves. At JDF, in 1998, we
gave about $30 million to research; in 1999, $55 million; in 2000, we
will give more than $75 million; and by 2002 we project giving more
than $120 million to research--that is a doubling every three years.
Mr. Chairman, you and this committee can take credit, through your
past commitments to NIH, to having helped bring us to the threshold of
a cure. And we at JDF have been proud to be your partners in this
absolutely crucial endeavor. We know that this is a particularly
difficult year for appropriations. But we cannot lose momentum. Not now
that we are so close. So I ask you, Mr. Chairman, members of the
committee, look around this room once more, listen to the voices of the
children who will tell you their stories today, and when you retire to
your deliberations, promise to remember them, promise to remember the
more than 16 million people, who like me, have diabetes, and promise to
work with NIH to ensure that funding is provided so that all identified
research opportunities in the DRWG report are explored. At a minimum,
we need to be able to tell the children and their loved ones that we
are investing the dollars necessary to find a cure. Thank you.
STATEMENT OF TONY BENNETT, ENTERTAINER
Senator Specter. We turn now to Mr. Tony Bennett, a World
War II veteran who fought in the Battle of the Bulge, and a
singer with more than 24 top 40 hits including ``Because of
You'' and ``I Left My Heart in San Francisco.'' His music has
brought smiles to my generation, and the fact that he also
sings for the MTV generation just proves that his talent is
timeless.
His concern for this disease has resulted in the
establishment of the JDF Tony Bennett Diabetes Research Fund in
honor of his grandson who has diabetes.
Mr. Bennett, we appreciate your being here and look forward
to your testimony.
Mr. Bennett. Thank you. Good morning, Mr. Chairman and
distinguished members. I don't consider myself an expert on
diabetes but I had enough first-hand experience with those who
have suffered its consequences to know what havoc it can wreak
on the human body.
In the course of my career I was fortunate to be very close
friends with two wonderful performers, Ella Fitzgerald,
America's first lady of song, and a cornet player and also Glen
Miller's first guitar player, Bobby Hackett who played such
beautiful music with Jackie Gleason, and sold millions of
records of mood music for Jackie Gleason. I witnessed how this
terrible disease took a toll on them and how they suffered from
the complications caused by diabetes.
Millions of Americans, almost 16 million to be exact, are
living with diabetes and their future is uncertain. Although
insulin is a treatment, it is not a cure and it doesn't prevent
the onset of complications from the disease. It can be just as
debilitating as the disease itself.
I could read this and we've all been doing this this
morning. I must say I've come to Washington for the last 50
years as a performer and I've always loved it here. It's such a
thrill to be in Washington, D.C., and it's such an up beat.
There are so many wonderful things to see here.
But of all the times I've ever been here, Mary, to see
these children, you know, it's just not enough of an accident,
I think, as an American citizen that we stress the fact that
every move we make is an investment for the future of our
children so that we save our great country.
Prepared statement
I think that we should today not let down these children
that were nice enough to come here and show them that they did
something right. And so that when they grow up they can be
proud of their country they live in. Thank you very much.
Senator Specter. Thank you, Mr. Bennett, for your statement
and I think your emotion carries more than words.
[The statement follows:]
Prepared Statement of Tony Bennett
Good morning, Mr. Chairman and distinguished members: I don't
consider myself an expert on diabetes, but I have had enough first-hand
experience with those who have suffered its consequences to know what
havoc it can wreak on the human body. In the course of my career, I was
fortunate to be close friends with two wonderful performers--Ella
Fitzgerald and the coronet player Bobby Hackett. Through the years that
I knew them, I would witness how this terrible disease took their toll
on them, as they suffered from the complications caused by diabetes.
Millions of Americans--almost 16 million to be exact--are living
with diabetes. Their future is uncertain and although insulin is a
treatment it is not a cure and it does not prevent the onset of
complications from the disease that can be just as debilitating as the
disease itself.
It has been a very positive experience, through my involvement with
the Juvenile Diabetes Foundation, to see how much can be accomplished
when support is made available for research. In know that the future of
all these children here today and across our country can be much more
promising if we can increase our efforts to find a cure. I offer my
personal appreciation to the members of this Subcommittee who have made
funding for medical research a top priority. None of us must forget
that we do not have a cure yet--and we owe it to our children to ensure
that every possible scientific opportunity in diabetes research is
funded so that there will be no delay in bringing home the cure.
STATEMENT OF ALAN SILVESTRI, COMPOSER
Senator Specter. When you see these children with diabetes,
juvenile diabetes, when you hear the stories one by one of
people suffering from cancer or Alzheimer or Parkinson or heart
ailments and to know that this rich powerful country can
prevent it is something that we just have to do.
This subcommittee has very sharp pencils out to see if we
can find the $2 billion this year. And it's a battle because
other worthwhile projects will have to receive the eraser end
of the sharp pencil. But when it comes to medical research and
maladies which can be prevented, there is just no excuse for a
wealthy country like America not doing it and we intend to do
it.
We turn now to our third panelist. Mr. Alan Silvestri
composed scores for movies like ``Back to the Future,'' ``The
Body Guard'' and ``Forest Gump.'' He's worked to raise
awareness and concern for diabetes since 1992 when his son
Joseph was diagnosed with juvenile diabetes. Let us express our
regrets, Mr. Silvestri, that we didn't get a hold of you for
the photo op earlier but we'll have another chance. The floor
is yours.
Mr. Silvestri. Thank you, Mr. Chairman.
As the chair dad of the 1999 Children's Congress, I would
like to begin by thanking all the ladies and gentlemen of the
committee for allowing us to have the opportunity to come and
tell our story to the American people.
Before I begin, I would like to direct your attention to
these gray mailbags you see here. These contain thousands of
letters that have come from the communities, families and
friends of the children. They are all appeals to the Members of
Congress to increase funding for the NIH to help us find a
cure.
As you may recall, in the end of ``Miracle on 34th Street''
in the trial of Santa Clause, the judge finally ruled that
because the U.S. Postal Service believed that these letters
belonged to Santa Clause, well, then he must, in fact, really
be Santa Clause.
We would like to think here today that if we can convince
the Members of Congress that this cure is possible, then, in
fact, it will be a reality and it will be possible. And we look
at this as our miracle on Capitol Hill.
Like most parents, I want to do what's best for my kids so
they can live, thrive and look forward to the realization of
their most precious dreams and their most precious futures.
Not too long ago after writing the score for ``Forest
Gump,'' my wife and I found ourselves going to lots of places
and meeting lots of people we had never met before.
Once while the introductions were going around the room,
the small talk turned to that famous ice breaker question what
do you do for a living. And I said I was a film composer.
Someone said they were a teacher. One said I'm a homemaker. And
when it became my wife's turn, she said I am a pancreas.
As the parent of an infant with diabetes, one must
literally take over the tasks of one of the body's most
complicated and at the same time most miraculous organs. Sandra
was very clear about the job description which I will briefly
relate.
6:30 a.m. time for Joe's blood test.
7 o'clock Joe's shot.
7:30 breakfast carefully weighed to balance his insulin.
10 o'clock another blood test.
10:30 a snack.
12 o'clock blood test.
12:30 lunch adjusted for blood sugar and insulin.
3 o'clock blood test.
3:15 a snack once again adjusted for blood glucose levels.
5 o'clock blood test.
5:30 dinner and insulin shot.
8 o'clock blood test. 8:30 snack.
9 o'clock story time.
10:30 blood test and evening shot usually while the child
is asleep.
2 a.m. a blood test.
6 a.m. the alarm rings and one gets to begin all over
again.
As one of our young delegates said, never a day off. In
Sandra's case her first day on this job happened when she
happened to be seven months pregnant with our third child. So
this addresses the living and thriving part of parenting but
what about that third part, the part that concerns their
future.
As parents who look down the road for our children trying
to safely guide them as they walk into their future, the
scientific community and those who have lived with diabetes
have reported back to us from down that road and they tell of a
future no parent wants for his child.
We know that the cure we are finally so close to is the
only thing that will give these children here today and those
children all across the country the future that every child
deserves. We know that we desperately need your help to
accomplish this.
Prepared statement
One of the great cinematic moments was that moment when
Ebenezer Scrooge awakened from a nightmare and he realized that
it was not too late to change the future for one child. Today
we are asking the American people to awaken to these bright
beautiful faces before us here filled with hope and see that
for my son Joe and for all of these kids the moment to change
their future is now. I thank you.
Senator Specter. Thank you, Mr. Silvestri, for that very
touching message from the heart for your son and we have the
message and we will deliver it.
Mr. Silvestri. Thank you, sir.
[The statement follows:]
Prepared Statement of Alan Silvestri
As the Chair ``Dad'' of the 1999 Children's Congress, I would like
to begin by thanking the ladies and gentlemen before me for the
opportunity to bring our story to the people of our country. Like most
parents, I want to do what's best for my kids so they can live, thrive,
and look forward to the realization of their most precious dreams in
their most precious futures.
Not too long ago, after writing the score for Forrest Gump, my wife
and I found ourselves being invited to lots of places with lots of
people we didn't know. Once, while introductions were going around, the
small talk turned to that great icebreaker question . . . ``What do you
do for a living?'' ``I'm a film composer.'' ``I'm a teacher.'' ``I'm a
homemaker.''. . . and so it went. When it was my wife's turn she calmly
replied.. ``I'm a pancreas.''
As the parent of an infant with diabetes, one must literally take
over the tasks of one of the body's most complicated and miraculous
organs.
Sandra was very clear about the job description.
6:30 am Joe's blood test
7:00 am Joe's shot
7:30 am breakfast, carefully weighed to balance his insulin
10:00 am blood test
10:30 am snack--adjusted for blood sugar and insulin
Noon blood test--if his blood sugar is high then an insulin shot
12:30 pm lunch, adjusted for blood sugar and insulin
3:00 pm blood test
3:15 pm snack, adjusted for blood sugar and insulin
5:00 pm blood test
5:30 pm dinner and insulin shot
8:00 pm blood test
8:30 pm snack
9:00 pm Bed time
10:30 pm Blood test and evening shot
2:00 am Blood test
6:00 am Wake up and start all over again.
In Sandra's case, her first day on the job happened to be when she
was 7 months pregnant with our third child.
This addresses the living and thriving part of parenting but what
about the third part, the part that concerns the future.
As parents, we look down the road for our children, trying to
safely guide them as they walk into their future. The scientific
community and those who have lived with diabetes have reported back to
us from down that road and they tell of a future no parent wants for
his child.
We know that the cure we are finally so close to is the only thing
that will give our children the future every child deserves.
We know that we desperately need your help to achieve this.
One of the great cinematic moments was that moment when Ebenezer
Scrooge awakened from a nightmare and realized that it was not too late
to change the future for a small child. Today we are asking the
American people to awaken to these bright, beautiful faces, filled with
hope, and see that, for my son Joe and all these kids, the moment to
change their future is now.
Senator Specter. Our children have been extraordinarily
patient. We have another round of children. Does somebody have
some questions they want to ask of this panel?
Senator Reid. I just briefly have a statement I want to
make.
Senator Specter. Senator Reid.
Senator Reid. I don't want to be ahead of anyone else.
Senator Specter. Go ahead. I think you're the last voice
here on this panel.
Senator Reid. I, like everyone else, appreciate very much
each of you testifying and I say lending your support is
extremely important.
I say to Tony Bennett in 1973 when I was lieutenant
governor of the State of Nevada, I came to one of your
performances. I think it was the Riveria Hotel. We had a
symphony orchestra backing you up and gave you an award from
the State of Nevada of how much you had done. That was almost
25 years ago and you're still doing things and I appreciate
very much your being here.
But I do want to say this while you very prominent people
are at the podium here. There is a lot of talk around
Washington. The No. 1 item some people are talking about are
tax cuts. But I have to say is I don't know how in the world we
can even consider tax cuts and not give proper funding for
medical research especially for these beautiful children down
front here.
I would hope that when we keep this shrill voice going
about tax cuts and how important it is, I hope it doesn't drown
out the voices of these beautiful children here about how
important medical research is. I would hope that you would join
in that debate which will take place here in Washington in the
next few months.
Senator Specter. Senator Hollings.
Senator Hollings. Twenty-five years ago I flew in--45 years
ago--in 1954 to Las Vegas in the Flamingo and I hadn't seen you
in 45 years personally. But, Tony Bennett, I've been your
admirer ever since.
Mr. Bennett. Thank you very much, sir.
Senator Hollings. I appreciate your dedication over these
many, many years not just the entertainment but, like you and
Mary Tyler Moore, your endurance. Now really the notice to come
up here--and everybody agree because everybody has agreed. What
we disagree about are the priorities. And having been up here a
few years, the question is which should take priority? I know I
can find $2 billion in the intelligence budget.
Senator Specter. We accept.
Senator Hollings. We didn't even know the Russians were
coming down the road. I know I can find $2 billion in the
defense budget because each of the services one another play in
and everything else like that--in fact, we added on already $6
billion.
I happen to be on the authorization for space and that's a
very, very dynamic program and development. But as between the
opportunity in space and the opportunity in health care, Mr.
Chairman, we ought to get this front and center. Thank you very
much, Mr. Chairman.
Senator Specter. We've been joined by our distinguished
colleague Senator Kohl from Wisconsin. Senator Kohl--no
statement? Fine.
Well, we thank you very much, Ms. Moore, Mr. Bennett and
Mr. Silvestri. We hear you loudly and clearly. Thank you.
We now turn to our very distinguished panel of children--
Zephyr Straus, Stockton Morris, LaNisha Patterson, Mollie
Breana, and Will Smith. If you, ladies and gentlemen, would
take the seats, please.
In an extraordinary hearing with celebrated celebrities and
celebrated doctors and a celebrated senator, Senator Thurmond,
we now come to the real stars of the show.
STATEMENT OF JIM STRAUS
We start first with Zephyr Straus, 2 years old, diagnosed
with diabetes in August of 1988 when she was 15 months. In
January of this year she became the youngest child in the
United States to use an insulin pump, accompanied by her father
Jim who was diagnosed with type one diabetes in 1971. The
Strauses are from Emerald Hills, California.
Mr. Straus, thank you for joining us and we welcome a
statement on behalf of Zephyr.
Mr. Straus. Thank you. She is waking up here. She didn't
find the testimony quite as fascinating as I did.
Again, my name is Jim Straus. This is our 2-year-old
daughter Zephyr. I've had to live with diabetes since I was
ten. It is difficult but nothing compared with living with the
knowledge that I've passed diabetes on to my daughter.
As you stated, she was 15 months old when I realized that
she was demanding more and more fluids and saturating more
diapers and becoming increasingly listless. Finally, her
symptoms hammered through my denial and I squeezed some urine
out of her diaper onto a test strip.
I was in shock as I watched the strip turn brown indicating
a very high level of sugar and ketones in her urine. I grabbed
my own blood glucose test kit, pricked her heel and waited for
the longest 30 seconds in my life. And I was just devastated
when I watched how high--the meter couldn't read how high her
blood sugar was.
That first blood test took as much courage as I could have
and now we test her eight to ten times a day. And, as you
mentioned, she is one of the youngest people in the United
States to be using an insulin pump. When we ask her for a test
and ask her which finger and she'll hold out which finger she
wants to be tested with.
This may seem like a blessing but part of me wants her to
keep fighting because passive acceptance of diabetes and
insulin therapy will not lead to a cure.
Mostly I don't ever want Zephyr to have to set her alarm
and get up every couple of hours during the night and check her
child's blood sugar. I don't want her to have to lie awake at
night wondering if her child is having a low blood sugar
reaction because she gave her too much insulin or not enough
food and not have to wake up in the middle of the night and
feed her child food because she was right and have something go
wrong there. Too much insulin or low blood sugar can lead to a
coma or death for the child there.
prepared statement
With your support, hopefully we can increase the funding
for the NIH and help develop a cure for both myself and for our
daughter here and for all the other 16 million Americans with
diabetes.
Senator Specter. Thank you very much, Mr. Straus. You have
a beautiful daughter there and we will do our best to help her
have a healthy life.
Mr. Straus. Thank you.
[The statement follows:]
Prepared Statement of Jim Straus
My name is Jim Straus and this is my 2-year-old daughter, Zephyr. I
have had to live with diabetes since I was 10 years old. It is
difficult, but it is nothing compared to living with the knowledge that
I have passed diabetes on to my daughter.
Zephyr was 15 months old when I realized that she was demanding
more and more fluids, saturating diapers and becoming increasingly
listless. Finally her symptoms hammered through my denial and I
squeezed some urine out of her diaper onto a test strip. I was in a
state of shock as I watched the strip turn brown, indicating a very
high level of sugar and ketones in her urine. I grabbed my own blood
glucose test kit, pricked Zephyr's heel and waited for the longest 30
seconds of my life. Can you imagine how I felt when I realized her
blood sugar was too high for my meter to read? That first blood test
took so much courage.
Now we poke her 8 to 10 times per day and she is one of the
youngest people in the world to use an insulin pump. She actually
chooses which finger we are going to use. Maybe this seems like a
blessing, but part of me wants her to keep fighting it. Passive
acceptance of diabetes and insulin therapy will not lead to a cure.
I don't ever want Zephyr to have to set her alarm and get up every
2 hours to check her child's blood sugar. I don't want her to lie awake
all night between the alarms fearing that she's given her child too
much insulin, too little food or too much exercise during the previous
day, which could lead to a coma or even death. I don't want Zephyr to
have to wake her sleeping child in the early hours of the morning and
force her child to eat because her fears were correct.
With your support and an increased focus on curing diabetes at the
National Institutes of Health, we can cure diabetes for me and Zephyr
and 16 million other Americans.
STATEMENT OF STOCKTON MORRIS
Senator Specter. Now we have 9-year-old Stockton Morris,
Bryn Mawr, Pennsylvania, goes to the third grade at Coopertown
School, diagnosed with type one diabetes when he was 20 months
old.
Stockton, the microphone is yours.
Mr. Morris. OK. I'm Stockton Morris from Haverford, PA. At
20 months old I was diagnosed with diabetes. What a shock to my
parents, even though my mom is a nurse. I am 9 years old and in
the third grade at Coppertown School in Bryn Mawr, PA. I have
had this dumb disease for 8 years. I can never remember not
having diabetes.
I stick myself 8 to 10 times a day. My last stick of the
day is at 1 a.m., I am asleep and dad does it. I do the others
myself. My fingers get so sore that I put medicine on them
before I go to bed. Even though I check my blood sugars a lot,
I've had seizures. We really need a cure. I don't want to ever
have seizures again.
Everyone thinks my insulin pump is a beeper. It comes in
real handy when my blood sugars are high. I don't need three to
five shots a day because I have the insulin pump.
Sometimes I'll miss school due to high blood sugars. 200 to
500. I just hurt or feel too tired. My vision gets blurry. I
can't concentrate and my school work does not get done.
On school trips when a lot of them just jump on the bus, I
have to take my machine, strips and food. Besides that, I also
have celiac disease where I can't eat wheat. Sometimes I feel
like there's nothing to eat. When I play tennis, sometimes I go
very low because of the running around I do.
I get dizzy, go limp and can't get up. They tell me this
will have a bad effect on my body down the road. Low blood
sugars is not good for my brain. It will be awesome for a cure.
I'd love not having to do blood sugar tests.
prepared statement
Any money that could be given for research will make the
cure come soon. I don't want to have complications with my
eyes, heart or kidneys. When a cure comes up, I want to thank
JDF researchers and scientists, a big thank you, for your
promise to remember me and all children with diabetes.
Thank you for allowing me to speak today.
Senator Specter. Thank you, Stockton. You handled those
speaking cards like a professional.
[The statement follows:]
Prepared Statement of Stockton Morris
My name is Stockton Morris from Haverford, Pennsylvania. At 20
months I was diagnosed with Diabetes. What a shock to my parents, even
though my mom is a nurse. I am 9 years old and in the 3rd grade at
Coopertown School in Bryn Mawr, PA. I have had this dumb disease for 8
years now. I can never remember not having diabetes.
I stick myself 8 to 10 times a day. My last stick of the day is at
1:00 am. I am asleep and Dad does it, the others I do myself. My
fingers get so sore that I put medicine on them before I go to bed.
Even though I check my blood sugars a lot, I have had seizures. We
really need a cure! I don't want to ever have seizures again!
I stick myself 3 to 4 times at school. It eats up time and I miss
schoolwork. Everyone thinks my insulin pump is a beeper. It comes in
really handy when my blood sugars are high. I don't need 3-5 shots a
day because I have a pump.
Sometimes I'll miss school due to high blood sugars (200-500). I
just hurt or feel too tired. My vision gets blurry, I cannot
concentrate and my schoolwork does not get done.
On school trips, I just can't jump on the bus. I have to take my
blood sugar machine, strips, and food.
Because I also have celiac disease and I cannot eat wheat,
sometimes I feel like there is nothing I can eat.
When I play tennis sometimes I go very low because of the running
around. I get dizzy, go limp and cannot get up. They tell me this will
have bad effects on my body down the road.
My first overnight scouting trip was great but at 2:00 in the
morning I had a bad low. My mother said ``38.'' That is very low!
It will be awesome to find a cure. I would love not having to do
blood sugar tests. Low blood sugars are not good for my brain. Any
money that can be given for research will make the cure come sooner. I
really don't want to have complications with my eyes, heart or kidneys.
When a cure comes, I want to thank JDF researchers, scientists and
doctors. A big thank you for your ``Promise to Remember Me'' and all
the children with diabetes. Thank you.
STATEMENT OF LA NISHA PATTERSON
Senator Specter. We now call on LaNisha Patterson, 10 years
old from Germantown, Wisconsin, diagnosed with juvenile
diabetes when she was 4 years old.
Thank you for being here, LaNisha, and we look forward to
hearing from you.
Ms. Patterson. My name is LaNisha Patterson and I am 10
years old. I've had diabetes for almost 6 years. Juvenile
diabetes is a deadly disease. People can get blind and have
other problems from juvenile diabetes. I always hoped that
diabetes would go away like a cold but it doesn't. Sometimes
kids tease me and call me diabetes girl but I don't show my
anger. I just don't say anything.
I used to cry when I got finger pokes and shots. My mom and
dad used to cry and we would all pray together. I have had
convulsions because my blood sugar level went low while I was
sleeping. It is very scary. We should be able to sleep through
the night without being afraid.
I hate diabetes but I don't get mad because I have it.
Sometimes having diabetes brings me emotional problems but I
just go pray with my mom and dad when this happens.
I really, really hope that there will be a cure. If there's
not a cure, I will find a cure. I want to be a medical
researcher. I want to make sure that no other child has to go
through the same pain that I go through every day.
The last thing I would like to say is that the one thing
that could keep me from fulfilling my dreams and goals is if
diabetes ends my life before I achieve them.
prepared statement
So, please, promise to remember me and all the children
suffering from diabetes and help find a cure for me and others.
Thank you and may God bless you and keep you.
Senator Specter. That's terrific, LaNisha. We will keep it
going so that you can be a researcher, too. We'll keep you
going and the whole process going.
[The statement follows:]
Prepared Statement of LaNisha Patterson
My name is LaNisha Patterson and I am 10 years old. I've had
diabetes for almost 6 years.
Juvenile diabetes is a deadly disease. People can get blind and
have other problems from juvenile diabetes. I always hoped that
diabetes would go away like a cold but it doesn't.
Sometimes kids tease me and call me diabetes girl but I don't show
my anger I just don't say anything.
I used to cry when I got finger pokes and shots. My mom and dad
used to cry and we would all pray together.
Sometimes I am hungry but I have to wait to eat because my blood
sugar is high. Sometimes I am not hungry but I have to eat because it
is time.
I have had convulsions because my blood sugar level went low while
I was sleeping. It is very scary. We should be able to sleep through
the night without being afraid.
I hate diabetes but I don't get mad because I have it. Sometimes
having diabetes brings me to emotional problems but I just go pray with
my mom and dad when this happens.
I really, really hope that there will be a cure. If there is not a
cure I will find a cure. I want to be a medical researcher. I want to
make sure that no other child has to go through the same pain that I go
through everyday.
The last thing I would like to say is that the one thing that could
keep me from fulfilling my dreams and goals is if diabetes ends my life
before I achieve them. So, please promise to remember me and all the
children suffering from diabetes and help find a cure for me and
others.
Thank you and may God keep you and bless you, good bye.
STATEMENT OF MOLLIE SINGER
We now look forward to hearing from Mollie Breana, 10 years
old, goes to Catholic school in Las Vegas, Nevada.
Ms. Singer. Hi. My name is Mollie Singer. I am 10 years old
and I have had diabetes since 1993. In the past 5\1/2\ years I
have taken 8,395 shots of insulin and I have poked my fingers
20,987 times.
Everything I do is planned around my diabetes--eating,
sleeping, playing, and even homework. If things are not planned
exactly, my blood sugar levels can go out of control.
I have been embarrassed in school because I couldn't read
when my eyes were blurry when my blood sugar was high and I've
been told that diabetic kids are a hassle.
A year after I got diabetes I had open heart surgery and I
had a real bad time. When I was in the hospital no one knew how
to handle a child with diabetes and I got the wrong amount of
insulin and the wrong food.
My twin sister Jackie is my best friend and my guardian
angel. When she was seven, she saved my life by getting help in
the middle of the night when my blood sugar went too low.
Jackie does not have diabetes. And because I know how hard it
is, I hope she never ever gets it.
Finding a cure for diabetes is all I think about every hour
of every day. I try to be brave but sometimes I get very sad
and cry myself to sleep. I dream of what it would be like when
I take my last shot of insulin and no longer have to poke my
fingers.
At night Jackie and I pray for everyone who is sick and we
ask God to help the doctors to find a cure for diabetes and
other terrible diseases.
prepared statement
We, also, pray for important people like you and I hope
that after hearing about my life that you will promise to
remember me by giving researchers the money needed to cure
diabetes.
Thank you for listening.
Senator Specter. Thank you very much, Mollie. Thank you.
[The statement follows:]
Prepared Statement of Mollie Singer
Hi, my name is Mollie Singer. I am 10 years old and I have had
diabetes since 1993. In the past 5\1/2\ years I have taken 8,395 shots
of insulin and I have poked my fingers 20,987 times. Everything I do is
planned around my diabetes--eating, sleeping, playing and even
homework. If things are not planned exactly, my blood sugar levels can
go out of control.
I've been embarrassed in school because I couldn't read when my
eyes were blurry because my blood sugar was high and I've been told
that ``diabetic kids are a hassle.'' A year after I got diabetes, I had
open-heart surgery and I had a real bad time. When I was in the
hospital no one knew how to handle a child with diabetes and I got the
wrong amount of insulin and the wrong food.
My twin sister Jackie is my best friend and my Guardian Angel. When
she was seven, she saved my life by getting help in the middle of the
night, when my blood sugar went too low. Jackie does not have diabetes
and because I know how hard it is, I hope that she never ever gets it.
Finding the cure for diabetes is all I think about every hour of
every day. I try to be brave but sometimes, I get very sad and cry
myself to sleep. I dream of what it will be like when I take my last
shot of insulin and no longer have to poke my fingers. At night Jackie
and I pray for everyone who is sick and we ask God to help the doctors
find the cure for diabetes and other terrible diseases. We also pray
for important people like you and I hope that after hearing about my
life that you will promise to remember me by giving researchers the
money needed to cure diabetes.
Thank you.
STATEMENT OF WILL SMITH
Senator Specter. We now have Mr. Will Smith, 13 years of
age, lives in New York City and was diagnosed with type 1
diabetes way back in 1991. Will.
Mr. Smith. Hi. I'm Will Smith the 7th grader at the
Collegiate School in New York City. I was diagnosed with
juvenile diabetes when I was 7 years old. I'm now 13.
Sports have always been a big part of my life. I love to
play soccer, basketball and particularly baseball where I still
dream of a professional career. But because of this incurable
disease, I have to worry about my future in athletics.
If I couldn't play baseball because of many possible
complications of diabetes from poor hand-eye coordination to
blindness or amputation, I would be crushed. This has been one
of my biggest concerns since I was diagnosed.
I am also embarrassed about having to test my blood sugar
and sometimes take an insulin shot around my baseball team.
Some of my teammates seem uncomfortable at the sight of all the
needles and test equipment and few have asked me why I need to
do that in front of them.
It's also painful not to have the freedom of eating
whatever I want. While other kids can eat pizza or
cheeseburgers whenever they're hungry, I have to consider how
those might push up my blood sugar readings too high.
At a minimum I have to take extra insulin for some foods
and others such as cake or candy are out of the question. In
the past year my doctor has warned me that my blood sugars have
been running too high as it is. I try very hard to manage my
diabetes and I know that we are close to a cure.
Prepared statement
I can only dream of that day that I can eat what I want and
do not have to worry about what my blood sugar number is and
not worry about what it will do to my eyesight or coordination.
While I can only dream about that day, you can make it
happen. Thank you.
Senator Specter. Thank you very much, Will.
[The statement follows:]
Prepared Statement of Will Smith
Hello. I am Will Smith, a seventh grader at The Collegiate School
in New York City. I was diagnosed with juvenile diabetes when I was 7
years old; I'm now 13.
Sports have always been a big part of my life. I love to play
soccer, basketball, and particularly baseball, where I still dream of a
professional career. But because of this incurable disease, I have had
to worry about my future in athletics. If I couldn't play because of
the many possible complications of diabetes--from poor hand-eye
coordination to blindness or amputation--I would be crushed. This has
been one of my biggest concerns since I was diagnosed.
I am also embarrassed about having to test my blood sugar and
sometimes take an insulin shot around my baseball team. Some of my
teammates seem uncomfortable at the sight of all the needles and test
equipment, and a few have asked why I need to do that in front of them.
It's also painful not to have the freedom of eating whatever I
want. While other kids can eat pizza or cheeseburgers whenever they're
hungry, I have to consider how those might push up my blood-sugar
readings too high. At a minimum, I have to take extra insulin for some
foods; others such as cake or candy are usually out of the question. In
the past year my doctor has warned me that my blood sugars have been
running too high as it is.
I try very hard to manage my diabetes; and I know that we are close
to a cure. I can only dream of the day that I can eat what I want and
not have to worry about what my blood-sugar number is, and not worry
about what it will do to my eyesight or coordination. Though I can only
dream about that day, you can help make it happen. Thank you.
Senator Specter. Thank you and all on this panel and thank
the children. We thank you for coming from all 50 States. This
has been a most extraordinary hearing.
I want to conclude with a recommendation that we move
forward from this hearing to persuade the Congress to put up
the money to conquer diabetes and juvenile diabetes. The
hearings are fine but they have a reach only to an extent.
You can identify the 63 Senators who voted no 2 years ago
and the 57 Senators who voted no last year and the 52 Senators
who voted no this year on increased funding. And with 50 States
represented, we have the muscle here to influence those folks.
So that it is more than a hearing. It is a lot of very hard
work of establishing the priority. We have a Federal budget of
$1.7 trillion and that's enough to provide the doubling for NIH
in the 5 years and the $2 billion this year. But it won't
happen by itself.
So I urge you to carry forward the fight. Thank you all
very much.
conclusion of hearing
Thank you all very much for being here. That concludes our
hearing. The subcommittee will stand in recess subject to the
call of the Chair.
[Whereupon, at 10:45 a.m., Tuesday, June 22, the hearing
was concluded, and the subcommittee was recessed, to reconvene
subject to the call of the Chair.]
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