[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

                                 ______

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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
                                 ------                                

 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

                              ----------                              

                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

                              ----------                              


                         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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