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STATEMENT OF DR. KENNETH E. QUICKEL

I am Dr. Kenneth E. Quickel, and I am President of the Joslin Diabetes Center in Boston. Joslin is the nation's largest diabetes research and patient care institution, and we believe that we have an obligation to testify on behalf of millions of patients, volunteers, researchers and healthcare professionals who are dedicated to making it a better world for those with diabetes. I hope to communicate with you about what is needed 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, attractive, articulate....but diabetes since childhood has left her blind and with a kidney transplant. It killed her brother last year, leaving his wife and an 18 month old baby behind.

Pam Fernandez is special in many ways, but please don't think that Pam's circumstance is unusual. She represents literally millions of people, half of whom will develop eye discase, a third of whom will develop kidney discase, and all of whom are members of families that are passing the genetic predisposition on to the next generations.

Diabetes is a very important public health problem. It is a leading killer that especially effects women, children, the elderly 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 themselves.

14 million Americans have diabetes.

There are more than 500,000 new cases each year and they will all have diabetes for the rest of their lives.

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

Diabetes is more frequent among minority groups (50% of Pima Indians over 35 years of age have diabetes).

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

Children with diabetes have shortened life expectancies.

Women with diabetes and their unborn children face major risks.

Diabetes costs over $25 billion each year.

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

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 kidney failure.

A leading risk factor for heart disease and strokes, which are the common causes of death for seniors with diabetes

The United States is the international leader in biomedical research, and in diabetes research in particular. These are major contributions that we make to the well-being of the world. Stimulated by Federal assistance, our universities and our research institutions have built the facilitics, assembled the equipment and attracted outstanding investigators from many disciplines of science to focus on diabetes. But we are in jeopardy of losing our preeminence and failing to provide leadership if our funding of diabetes research continues to decline.

At Joslin and other diabetes research centers, we are making the greatest strides in the history of diabetes right now. We are beginning to bring science to the bedside, with remarkable new methods of detection, prevention and treatment.

Biochemists and molecular biologists are working out the fundamental causes of diabetes and its complications.

Geneticists are unraveling the genetic defects of diabetes, and beginning to learn how to correct them.

Clinical researchers, immunologists, epidemiologists and physiologists are learning to apply this new knowledge, placing it in the hands of physicians throughout the world. But the diabetes research structure is fragile. If we do not fund this work adequately now, these researchers will be forced to turn their attention to other problems. Young researchers are already discouraged from beginning careers in diabetes 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 hear the call for more funding for this program or that. Your task is a difficult onc. Diabetes 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

request.

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

Raise the prospect for the funding for research project grants above 15%.

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

Reverse the decline in research trainces in diabetes.

Enhance funding for the search for the gene(s) of diabetes, for investigation of kidney failure and for diabetes prevention.

The Pam Fernandezes of the world are depending on us, and we at Joslin and at other diabetes research centers are committed to help. We respectfully ask you to consider this nced carefully, because only with your support can our commitment come to fruition.

We need to find a cure for diabetes. 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.

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 I 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.

SUBCOMMITTEE RECESS

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.]

DEPARTMENTS OF LABOR,

HEALTH
HEALTH

AND

HUMAN SERVICES, AND EDUCATION, AND RELATED AGENCIES APPROPRIATIONS FOR FISCAL YEAR 1992

WEDNESDAY, APRIL 17, 1991

SUBCOMMITTEE OF THE COMMITTEE ON APPROPRIATIONS,

U.S. SENATE,

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.

NONDEPARTMENTAL WITNESSES

OPENING REMARKS OF SENATOR ADAMS

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, be

cause 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 BARBARA SINATRA CHILDREN'S CENTER AT EISENHOWER, RANCHO MIRAGE, CA

ACCOMPANIED BY JOHN SHIELDS, EXECUTIVE DIRECTOR AND VICE 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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