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DEPARTMENTS OF LABOR HEALTH AND

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

TUESDAY, APRIL 23, 1991

U.S. SENATE,
SUBCOMMITTEE OF THE COMMITTEE ON APPROPRIATIONS,

Washington, DC. The subcommittee met at 9:30 a.m., in room SD-192, Dirksen Senate Office Building, Hon. Tom Harkin (chairman) presiding.

Present: Senators Harkin, Burdick, Specter, and Gorton.
Also present: Senator Thurmond.

NONDEPARTMENTAL WITNESSES

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Senator HARKIN. The subcommittee will come to order today. The subcommittee will continue with its fourth day of testimony from approximately 150 congressional and public witnesses. We have scheduled six special sessions to hear this testimony. This year we had requests from 307 individuals and organizations to testify before the subcommittee.

Unfortunately, because of the limitations of time we were only able to schedule the first 150 organizations who contacted us. I regret that we cannot hear everyone, but we have made it known to those who did not make the cutoff that we would be pleased to publish their statements in the hearing record.

In order to keep on schedule we are going to use this red light/ green light system and give each witness 3 minutes to summarize the key points of their statement. All of your statements will be made a part of the record in their entirety. I would appreciate your keeping it within that 3-minute time limit. This will give us some time to ask a few questions and to be sure 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, Alzheimer's disease, and a wide range of diseases of the skin, just to mention a few. I have noticed that a number of the statements have suggested increases of well over $1 billion, well over 50 percent increases for just a handful of programs. Needless to say, the Budget Enforcement Act has given us all a very difficult situation this year. From that act we expect a growth of from 4 to 5 percent over last year's level. We are barely keeping up with inflation.

While I am sure that we will agree on the importance of the several programs we will discuss this morning, the amount of funding increases that we will be able to provide by necessity because of that budget act last year will be limited. So I look forward to the advice of each one of you in making the many difficult decisions that face us this year in the allocations of the scarce dollars that we have available to us.

STATEMENT OF HON. STROM THURMOND, U.S. SENATOR FROM SOUTH

CAROLINA

ACCOMPANIED BY:

LEE DUCAT, PRESIDENT, NATIONAL DISEASE RESEARCH INTER

CHANGE MARK McCLENDON, SR. SIMONE McCLENDON MARK McCLENDON, JR. Senator HARKIN. At this point I would welcome to the subcommittee our distinguished colleague and good friend from South Carolina, the distinguished Senator from South Carolina, Senator Strom Thurmond.

Senator Thurmond, welcome to the subcommittee.

Senator THURMOND. Thank you, Mr. Chairman. I am somewhat hoarse, so I hope you can hear me. Mr. Chairman and members of the subcommittee, it is a pleasure

a to again have the opportunity to appear before this subcommittee to testify in support of diabetes research funding. As you know, I appeared before you 1 year ago with my wife and daughter, Julie, to urge increased funding for diabetes research and the search for the diabetes genes. I am back before you today to say thank you and to reemphasize this important and most beneficial endeavor.

Sitting beside me today is my good friend, Lee Ducat, a distinguished leader in the diabetes community. Lee is a woman of action. More than 20 years ago she founded the Juvenile Diabetes Foundation and today is working hand in hand with the foundation to help find a cure for diabetes. Lee and the foundation have made the search for the diabetes genes their top priority in fiscal year 1992. I join her in urging you to consider making it a top priority

As a military man and veteran of World War II, I know what it means to spend a few extra dollars to defend freedom and to save lives. We proved it in the 1940's, and we proved it again this year in Kuwait. Today I want to challenge you to spend a few extra dollars on a noble effort to save lives right here in this country.

The Federal Government has demonstrated a commitment to diabetes research through the work of the National Institute of Diabetes, Digestive, and Kidney Diseases, which I am pleased received an appropriation of $617 million last year. Much progress has been made in treating diabetes and reducing the severity of some of the complications that are associated wit this disease. Recent breakthroughs such as new insulin delivery systems, self-administered blood glucose monitoring products, oral medications, and laser therapy techniques for treating diabetes-related eye disorders have all contributed greatly to improve lifestyles for diabetics.

as well.

Certainly these advances are remarkable. However, the cause of this disease still eludes scientists. We must find the cause, and the search for the diabetes genes will help us do just that.

Mr. Chairman, your interest in this important issue is much appreciated by the families of those who have diabetes. As a parent of a daughter with juvenile diabetes I am especially appreciative of the support of the subcommittee in this area. Mr. Chairman, I am sure you are familiar with the facts of this disease which, taken as a whole, help point out the reasons why we need to do more. Three facts bear mentioning:

One, more than 14 millon Americans suffer from diabetes and its complications. To put this in perspective, this amounts to over four times the population of my home State of South Carolina;

Second, annual diabetes-related costs amount to over $25 billion; and

Third, diabetes is a leading cause of death in this country, and it has been shown to reduce life expectancy by up to 30 percent.

PREPARED STATEMENT

In closing, I wish to thank you for the opportunity to testify and urge the members of the subcommittee to consider an additionalI repeat, an additional—$30 million over 2 years to fund the search for the diabetes genes. Thank you very much.

STATEMENT OF SENATOR STROM THURMOND Mr. Chairman and members of the subcommittee, it is a pleasure to again have the opportunity to appear before the subcommittee to testify in support of diabetes research funding. As you know, I appeared before you one year ago with my wife and daughter Julie, to urge increased funding for diabetes research and the "Search for the Diabetes Genes". I am back before you today to say thank you and to reemphasize this important and most beneficial endeavor.

Sitting beside me today is my good friend, Lee Ducat, a distinguished leader in the diabetes community. Lee is a woman of action. More than 20 years ago she founded the Juvenile Diabetes Foundation and today is working hand-in-hand with the Foundation to help find the cure for diabetes. Lee and the Foundation have made the “Search for the Diabetes Genes” their top priority in fiscal year 1992. I join her in urging you to consider making it a top priority as well.

As a military man and veteran of World War I, I know what it means to spend a few extra dollars to defend freedom and to save lives. We proved it in the 1940's, and we proved it again this year in Kuwait. Today, I want to challenge you to spend a few extra dollars on a noble effort to save lives right here in this country.

The Federal government has demonstrated a commitment to diabetes research through the work of the National Institute of Diabetes, Digestive, and Kidney Diseases, which I am pleased received an appropriation of $617 million last year. Much progress has been made in treating diabetes and reducing the severity of some of the complications that are associated with this disease. Recent breakthroughs such as new insulin delivery systems, self-administered blood glucose monitoring products, oral medications, and laser therapy techniques for treating diabetes-related eye disorders have all contributed greatly to improved lifestyles for diabetics.

Certainly these advances are remarkable. However, the cause of this disease still eludes scientists. We must find the cause, and the “Search for the Diabetes Genes” will help us do just that.

Mr. Chairman, your interest in this important issue is much appreciated by the families of those who have diabetes. As a parent of a daughter with juvenile diabetes, I am especially appreciative of the support of the Subcommittee in this area.

Mr. Chairman, I am sure you are familiar with the facts of his disease, which taken as a whole, help point out the reasons why we need to do more. Three facts bear mentioning: (1) More than 14 million Americans suffer from diabetes and its complications to put this in perspective, this amounts to over four times the popu. lation of my home state of South Carolina. (2) Annual diabetes-related costs amount

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to over $25 billion; and (3) Diabetes is a leading cause of death in this country and it has been shown to reduce life expectancy by up to 30 percent.

In closing, I wish to thank you for the opportunity to testify, and I urge the members of the Subcommittee to consider an additional $30 million over two years to fund the "Search for the Diabetes Genes".

Senator HARKIN. Senator Thurmond, thank you again for appearing before the subcommittee as you did last year and for your very excellent testimony.

The budget request for diabetes this year is for about 7 percent more, Strom, which is a little bit more than the average increase that we got for all of our budget. So that is the good news.

Of course, the bad news is it is probably not as much as people want, but it is higher than what the average increase for all of our programs is.

Senator THURMOND. We will appreciate every extra dollar you put into it.

Senator HARKIN. We will do our best.

Senator THURMOND. As I say, the people in this country who have diabetes is four times the population of my entire State, and we must take steps to find the cause of this disease.

Senator HARKIN. Thank you very much.

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Who are the other people here at the table you have with you?

Ms. DUCAT. These are the McClendons, Mr. and Mrs. McClendon and Mark, who is 2 years old and has had diabetes since he was 8 months old. They are parents who would just like to say a few words as part of the testimony.

Senator Harkin, I am really honored that we are able to talk to you personally today. There is a great research project at the University of Iowa which we hope will cure diabetes, the beta cell transplant.

We started the search for the diabetes genes last year, and we are here to ask you for $30 million over a 2-year period to find the genes which cause diabetes. We need to know the genetic cause of this in order to find the cause to get some new treatment and to progress toward the cure.

We have done a lot. In fact, in the last 2 months there have been two new genes found. We started this mission right here last year to find the genes which cause diabetes. As Senator Thurmond has said, there is an enormous constituency out there, 14 million diabetics across our country; 2 million are little ones, young people with insulin-dependent diabetes like Mark, Junior. We need to get the funds to find the cause and the cure for diabetes.

We are suggesting $30 million over 2 years to NIDDK. We are also suggesting to NIH $9.7 million. We are suggesting to NIDDK $835 million, and we are suggesting for the diabetes budget $385 million. Diabetes is the third leading cause of death in the country besides cancer and heart disease. Cancer is up here in funding (indicating), heart disease is here [indicating), and diabetes at $385 million would still be way down at the bottom.

We have a huge constituency. We have a massive united effort this year to search for the diabetes genes: NDRI, with 1,000 researchers; the Juvenile Diabetes Foundation International with

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500,000 families; the National Diabetes Advisory Board, voting unanimously to search for the diabetes genes; and the Diabetes Institute, which is also behind this effort 100 percent.

PREPARED STATEMENT We who are parents of diabetics have always said we will look toward tomorrow, which is from the Broadway show, but we would like to look to today. We hope that you who have been so kind to us in the past would have the courage to make these appropriations which are so important.

[The statement follows:] STATEMENT OF LEE DUCAT, PRESIDENT, NATIONAL DISEASE RESEARCH INTERCHANGE

Dear Mr. Chairman and members of the subcommittee, I am Lee Ducat, and I return to you today as a concerned parent and grandparent, concerned for my son and his children and the 14 million Americans who are afflicted with the dreaded disease known as Diabetes-a disease with no cure that costs our Nation more than $25 billion every year. If the Federal Government would only challenge Diabetes the way it did Saddam Hussein's invasion of Kuwait, we would, no doubt, find the cure for Diabetes!

Desert Storm revealed our Government's advanced military technology was supremely effective in the Middle East. Now is the time for the Federal Government to take existing medical and scientific technologies to new heights by focusing its energy on 14 million Americans and their families who suffer from Diabetes and its debilitating complications. I am here today to urge you and your colleagues to support funding for the National Institutes of Health in the amount of $9.770 billion, National Institute of Diabetes and Digestive and Kidney Diseases Director Philip Gorden's professional judgment request of $856,689,000 and National Center for Research Resources Director Robert Whitney's professional judgment request of $711,308,000. In addition, I urge you to fund the Diabetes Division of NIDDK $385,510,000. The NIDDK and NCRR are the two critical components of the NIH geared to combat Diabetes in an effort to find its thus-far elusive cure. These much needed dollars would be well spent to save billions of dollars now and in the future, if they are directed towards the existing and rapidly developing technologies used in gene research and alternative resources to discover the Diabetes Genes.

As you know, I appeared before you last year to announce a coordinated effort by the research community and NIDDK to undertake the Search for the Diabetes Genes. And I am pleased to tell you today that two key discoveries have been made within the last several months to identify genes related to Diabetes. For example, the gene marker has been discovered in a rare form of Diabetes known as Maturity Onset Diabetes of the Young or "MODY". Also, the gene that produces GAD, an enzyme found in islet cells has profound implications as a first step in solving the mystery of Diabetes.

Both of these exciting discoveries hold out hope for the future, but also serve to point out the importance of the Search for the Diabetes Genes initiative and the urgency for the Federal Government to capitalize on the momentum in the Diabetes research community by funding the Search for the Diabetes Genes initiative an additional $30 million dollars over the next two years. NDRI and HBDI support this figure, which has been embraced by NIDDK, the National Diabetes Advisory Board and the entire Diabetes research community, as well as the major volunteer health organization, the Juvenile Diabetes Foundation, which I founded more than 20 years ago. With a membership of over 500,000 families, JDF is the largest volunteer health organization committed to support research to find the cause and the cure for Diabetes and its complications.

JDF is the product of my personal experience and the collective experience of a number of families who suffered and continue to suffer as I do. When my son was diagnosed a Diabetic as a nine year old, I was motivated into action, determined to find the cause and the cure for Diabetes by focusing national attention on this debilitating disease that does irreversible damage to our kidneys, our heart, our eyes and our nervous system-virtually every one of the body's organs—and disproportionately so to minority populations like Blacks, Hispanics, Native Americans and Native Hawaiians. Mr. Chairman, as we head towards the 21st Century, the mission is not yet complete. The cause towards the 21st Century, the mission is not yet complete. The cause of Diabetes is still unknown-it will continue to elude our

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