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I am Dr. Kenneth E. Quickcl, and I am President of the Joslin Diabetes Center in Boston. Joslin is the nation's largest diabctes rescarch and patient care institution, and we believe that we have an obligation to testify on behalf of millions of patients, volunteers, rescarchers and healthcare professionals who are dedicated to making it a beller world for those with diabetes. I hope to communicate with you about what is nccded to bring this devastating disease under control.

Let me introduce you to Pam Fernandez, whose presence here may communicate better than
anything I might say. She is young, bright, altractive, articulate....but diabetes since childhood
has lost her blind and with a kidncy transplant. It killed her brother last ycar, leaving his wife
and an 18 month old baby bchind.
Pam Fernandez is special in many ways, but please don't think that Pam's circumstance is
unusual. She represents literally millions of people, hall of whom will develop cye discase, a
third of whom will develop kidncy discasc, and all of whom are members of families that are
passing the genetic predisposition on to the next generations.
Diabclcs is a very important public hcalth problem. It is a leading killer that especially essects
women, children, the clderly and the minoritics. Diabetes is on the rise, increasing at a rate of
six percent annually. The public underestimates the impact of diabetes....unless they have it

14 million Americans have diabetes.

There arc more than 500,000 new cases each year and thcy will all have diabctcs for
the rest of thcir lives.

250,000 deaths occur cach year from diabetes and its complications.

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Diabctcs is morc frcquent among minority groups (50% of Pima Indians over 35 years
of age havc diabctcs).

Diabetes is more frequent among the clderly (16% of whites and 29% of black males
age 65-74 have diabcics).

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Children with diabetes have shortcncd life expectancies.

Women with diabcles and their unborn children face major risks.

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Diabctcs cannot yet be cured. Once you have diabetes, you have it until death. And if you have it, you arc at rcal risk. Diabetes hides bchind the complications it causes. People fear blindness, amputations, hcart attacks and the other complications of diabetes, without realizing that these are just thc public face of the underlying discase. The facts are that diabctcs is:

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The leading discase causing blindness in working-age Americans.
The leading cause of non-traumatic amputations due to gangrene caused by nerve and
blood vessel damage.
The single leading cause of end-stage kidncy failure.
A lcading risk factor for heart discase and strokes, which are the common causes of
dcath for scniors with diabetes

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The United States is the international leader in biomedical rescarch, and in diabctcs rescarch
in particular. These are major contributions that we make to the well-being of the world.
Stimulated by Federal assistance, our universities and our rescarch institutions have built the
facilitics, assembled the cquipment and attracted outstanding investigators from many
disciplines of science to focus on diabetes. But we are in jcopardy of losing our preeminence
and failing to provide Icadership if our funding of diabetes rescarch continues to decline.
At Joslin and other diabetes rescarch centers, we arç making the greatest strides in the history
of diabctes right now. We are beginning to bring science to the bedside, with remarkable new
mcthods of detection, prevention and trealmcnt.

Biochemists and molecular biologists are working out the fundamental causes of
diabetes and its complications.
Geneticists are unraveling the genclic defects of diabetes, and beginning to learn how
to correct them.

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Clinical rescarchers, immunologists, cpidemiologists and physiologists are learning to

apply this new knowlcdgc, placing it in thc hands of physicians throughout the world. But the diabetes rescarch structure is fragile. If we do not fund this work adequately now, thcsc rescarchers will be forced to turn their attention to other problems. Young researchers are already discouraged from beginning careers in diabcies research because they have less than a 15 percent chance of having an NIH grant funded, and the senior researchers do not have the resources to develop the new initiatives that are now possible. The momentum is being lost, and if it is, diabetes will continue to claim 500,000 new victims each year. I realize how often you hcar the call for more sunding for this program or that. Your task is a difficult onc. Diabctcs costs our nation over $25 billion cach year for medical services and the lost productivity of disability and premature death. The human cost is even higher. A major portion of that price is paid through Federal programs. Each year we spend billions of dollars on Nintendo and various video games, over $1 billion on popcorn, and more than $700 million on peanuts, yet the entire NIDDK budget in 1991 is just over $615 million. In this context, the diabetes research community's request for $815 million in 1992 is not at all out of proportion. We now sincerely urge you to support this rcqucsl.

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I know that Dr. Phil Gorden, Director of NIDDK, has met with you to outline the specific components of NIDDK's sunding request, and I will not repeat them here. Several elements do, however, deserve comment. The requested allocation will:

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Raisc thc prospect for the funding for research project grants above 15%.

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Assure thc funding of the research centers where talent and resources can be most effectively used, and where clinical application of new knowledge is most rapid.

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Reverse the decline in research trainces in diabctes.

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Enhance funding for the search for the gene(s) of diabctes, for investigation of kidncy

sailure and for diabetes prevention. The Pam Fernandezes of the world are depending on us, and we at Joslin and at other diabctcs rescarch centers are commilled to help. We respectfully ask you to consider this nced carefully, because only with your support can our commitment come to fruition. We nced to sind a curc for diabctcs. The savings in lives, human suffering, and dollars, will be immense. Thank you for your interest and your thoughtful consideration of this timely and vitally important nccd.

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Senator HARKIN. The administration has requested a 7-percent increase in the National Institute of Diabetes and Kidney Diseases. You are saying that it ought to be substantially more than that.

Dr. QUICKEL. This is a substantially larger increase than was included in the President's budget. And it is based on a great deal of study by diabetes groups around the country. We had felt, for instance, that for a young researcher to begin his career in diabetes research with a 1 in 6 chance of getting enough funding to survive, is simply too steep a hill for young people to work their way up. So we need to improve that funding percentage.

In 1986 it was 35 percent, which was still pretty minimal. It is now 15 percent. And you just cannot keep the animal alive at that level.

Additionally, we have declined since 1986 in the number of new trainees that we are supporting. So that needs to be brought up to a level that is capable of meeting the demand.

Diabetes is increasing in our Nation at 6 percent a year with the graying of America and the like. And somehow we have to keep up with that demand. It requires not a declining funding, but for that to be restored.

Senator HARKIN. Is there an indication that there is a genetic marker for diabetes?

Dr. QUICKEL. Very much so. We know that one-half of the identical twins where one twin has diabetes fully 50 percent of the identical twins will develop diabetes. So there is a very strong genetic predisposition. There is also, obviously, an environmental factor involved, otherwise 100 percent of the identical twins would get it. So there is a mix of genetics and environment involved in diabetes and both need to be a very major area of our focus.

Genetic research has become sort of the hot area of diabetes right now. Additional hot areas are immunology research to learn how to prevent type 1 diabetes. And research into type II diabetes, the causes and the complications of it, neuropathies and the vascularpathies that are so severe.

Senator HARKIN. Thank you very much.
Dr. QUICKEL. We appreciate your attention and your help.

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Senator HARKIN. Thank you for your patience in staying here so long.

The subcommittee will stand in recess until 9:30 a.m., Wednesday, April 17, when we will meet in room SD-192 to continue our public witness hearings on the administration's fiscal year 1992 budget request.

Whereupon, at 1 p.m., Tuesday, April 16, the subcommittee was recessed, to reconvene at 9:30 a.m., Wednesday, April 17.)


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Washington, DC.
The subcommittee met at 9:33 a.m., in room SD-192, Dirksen
Senate Office Building, Hon. Brock Adams presiding.
Present: Senators Adams, Specter, and Gorton.



Senator ADAMS. Good morning, the subcommittee will come to order. I will make my apologies in advance for both myself and Senator Harkin. The reason that you will see one or the other of us here and that I am a few minutes late is we have a small amount of business which is presently going on before the full Labor and Human Resources Committee; namely, the railroad strike, S. 1, S. 5, all in the process of markup, which means we have to maintain a quorum, we have to be available for amendments, and so on.

I do not think that will interfere with the hearing this morning. I hope it will not, and Senator Harkin and I will do everything we can to be certain that everyone is heard fully and fairly and that there is an opportunity for all of you to place your statements in the record.

I might state, and I am sure you have heard this both from me, from Senator Harkin, and from many others, that if you wish your full statement will appear in the record as you have written it. You may extemporize from it or summarize it as you see fit.

I mention that early on, since our time will be limited. We will limit each witness. You will notice the lights. I will try to be generous with them, but the purpose of the lights is so that as many people as possible have an opportunity to be heard and will know that the written statement has appeared in full in the record.

Now, today, the subcommittee will continue its second day of testimony from approximately 150 congressional and public witnesses. We have scheduled six special sessions to hear this testimony. This year the committee had requests from 307 individuals and public organizations to testify before the subcommittee. Unfortunately, because of the limitations of time we were able to schedule only the first 150 such individuals and organizations who wrote us. I regret that we cannot hear everyone.

The committee has made it known to those who did not make the cutoff that we would be pleased to publish their statements in the hearing record so they will be available for the entire public to see.

In order to keep on schedule we need to use this red light and green light system, which will give every witness 3 minutes to summarize the key points of their statement. I would, as I mentioned earlier, request each witness to please attempt to complete the statement when the 3-minute red light goes on. This will give us time to perhaps ask a few questions and will also insure that everyone gets a fair and equal chance to address the subcommittee.

Today, we will hear testimony on a wide range of subjects, including education, biomedical research, in particular funding for research on the eye, blood, sleep disorders, sudden infant death syndrome, and funding for several programs of interest to the elderly, just to mention a few. I have noticed that a number of the statements suggest increases of well over $1 billion and well over 50 percent increases for just a handful of programs.

Needless to say, the Budget Enforcement Act has given us all a very different situation this year, and from the act we expect a growth of 4 to 5 percent over the 1991 level in total for the subcommittee. I mention in total for the subcommittee. Regardless of what you and I may or may not think of the act, it is in place and it is enforced by the chairman. I mention that to you so that you understand the difficulties that the chairman and all of us as members of the committee have in attempting to allocate among causes that we may personally deeply believe in, we may believe in deeply for the good of the country, or both.

While I am sure we will agree on the importance of the several programs you will discuss this morning, the amount of funding increases that we will be able to provide will be limited. I look forward to the advice of each one of you in making the many difficult decisions that we face this year. STATEMENT OF BARBARA SINATRA, PRESIDENT AND FOUNDER, THE



PRESIDENT Senator ADAMS. At this point I would like to call our first witness and welcome her to the committee. Our first witness this morning is Barbara Sinatra of the Barbara Sinatra Children's Center at Eisenhower, Rancho Mirage, CA.

Mrs. Sinatra, welcome to the committee. We would be pleased to hear your testimony, and if you wish to bring members of your staff would you please introduce them to the committee and to those that are here as you start.

Ms. SINATRA. Good morning, Mr. Chairman. I am Barbara Sinatra, founder and president of the Barbara Sinatra Children's Center at Eisenhower in Rancho Mirage, CA. With me today is John Shields, who is our executive director and vice president of the center.

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