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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.
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
nation's top researchers without a stepped up financial commitment by the Federal Government. But, as I mentioned above, with the discoveries of two Diabetes related genes, we are moving closer to a cure. We have the technology.
Responding to the scientific research community's discovery that Diabetes is a genetic disease, I founded the Human Biological Data Interchange (HBDI), whose goal is to provide researchers with information and statistics about families with Diabetes to trace the disease throughout the various segments of our population. I am proud to announce the HBDI has over 4,000 diabetic families on its database and has produced 8,949 immortal family cell lines for use by researchers—a monumental first step towards helping researchers pinpoint the Diabetes genes. With these families, the research can move forward. The scientific research community knows that finding the Diabetes genes will unlock the door to the causes and the cure for Diabetes. The human resources, the researchers and technologies exist to find the Diabetes genes. Now we need the Federal Government's financial support!
Recognizing that Diabetes genes research should be the Federal Government's major thrust to solve the mysteries of this horrible disease, the NIDDK, under the direction of Dr. Gorden, convened a year ago the most eminent researchers from around the country for a meeting he titled "The Search for the Diabetes Genes". As an invited guest and participant at this meeting, I was excited to observe this expert panel reach a consensus on the need to exploit fully the new research leads in this field, and to take advantage of the broad array of new molecular biology techniques to discover the Diabetes genes. NIDDK currently has invested slightly less than $10.5 million in Diabetes genes research to combat a disease that costs our nation an estimated $25 billion annually. Appropriating an additional $30 million is equivalent to spending $2 to save $1,300, to improve the quality of life for some 14 million Americans afflicted with the disease. The possibility for preventing Diabetes for future generations is no doubt a "blue chip" investment of our taxpayers' money!
Doubters may question the worthiness of such an investment in the future health of our nation. In this respect, I must simply say the investment can and will pay off! Successful NIH-sponsored gene research must not go unnoticed. Last year a massive five-year effort, spearheaded by the NIH, produced the identification, cloning and sequencing of the Cystic Fibrosis gene! This awesome achievement will serve as the catalyst to discover the cause and the cure for Cystic Fibrosis. More recently, NIH-sponsored researchers discovered the gene that causes Neurofibromatosis. The cloning of these genes has changed drastically the direction of research towards prevention and cure.
Diabetes is certainly a more complex disease. Researchers recognize more than one gene is responsible for the disease, yet, initial breakthroughs have been made which must now be exploited by intensifying The Search for the Diabetes Genes. For instance, a dramatic discovery within the last three years has uncovered a Diabetes susceptibility gene in insulin-dependent or Type I Diabetes. This gene appears to be necessary, but not completely sufficient to cause the disease. In animal models, funded by the NCRR, there is a suggestion that additional genes are involved, but as yet, no other gene has been identified in humans. There is an urgent need to search for these other potential Diabetes genes in insulin dependent Diabetes.
As promising as these research results are, they cannot be expanded upon or learned from without additional Federal funding. The harsh reality is that since NIDDK's fiscal year 1987 budget of $510,880,000, its budgets have decreased annually in constant, inflation-adjusted 1987 dollars. The President's budget request for NIDDK in fiscal year 1992 is $658,557,000. In 1987 dollars, this comes to a dismal $389,836,000, a $268,721,000 loss! During this timeframe, the budget for the Division of Diabetes also has decreased woefully in constant, inflation-adjusted 1987 dollars. The President's fiscal year 1992 request is $282,979,000, which is a horrific $173,141,000 in 1987 dollars. This represents more than a $53,500,000 decline from the Division's $226,901,000 fiscal year 1987 budget. Pure and simple: Our children-our nation's future-cannot afford to accept this downward spiral. We can and must do better. Consistent with Dr. Gorden's professional judgment request for NIDDK of $856,689,000, the Diabetes Division should receive $385,510,000, which would be a 45 percent increase over the Division's fiscal year 1991 Budget of $265,702,000.
And unfortunately, the NCRR funding experience has not been any better. Since 1988, when its budget was $368,153,000, NCRR's budget has steadily declined in real dollars such that the President's fiscal year 1992 request is an anemic $320,975,000, which is less than half of Dr. Whitney's $711,308,000 professional judgment request. Slicing NCRR's budget by nearly $50 million over four years undermines the very purpose of the entire NIH, which depends on resources to conduct research to find cures for costly diseases! And during this very time, NCRR was elevated from "Division" status to "National Center" status in recognition of its vital
service to the entire NIH. Unfortunately improved funding has not followed its im proved status. The ripple effect of this budget cutting will no doubt be felt by all of the NIH institutes that depend upon NCRR's research resources. Within NČRR, the Biological Models and Materials Research section serves a vital function, providing the basic research resources for NIH-funded researchers to carry out their important work. The President's fiscal year 1992 budget request for BMMR is only $8,365,000. This is simply not enough for BMMR to carry out its crucial work. NCRR, through BMMR can provide, for instance, the research resources to NIDDK to facilitate the Search for the Diabetes Genes. Towards this end, NDRI and HBDI strongly support Dr. Whitney's professional judgment request of $711,308,000 for NCRR and $26,497,000 for BMMR.
Since 1970, when I became actively involved with Diabetes, the greatest advances in Diabetes research have been made when the Federal Government, private industry, the scientific research community and the voluntary health organizations have coalesced to put forward a truly concerted effort. Today, the JDF International, one of the largest voluntary health organizations in the world, supports the Search for the Diabetes Genes and we are working side by side to find the cure for Diabetes. Now is the time for the Federal Government to join this effort with financial support to transform our knowledge and quickly evolving genetic technology, techniques and therapy into action to guarantee that the 1990's produce the Diabetes genes! On behalf of NDRI and HBDI, thank you for this opportunity to present our views. I would be pleased to answer any questions you may have.
STATEMENT OF MARK MC CLENDON, SR.
Mr. MCCLENDON. Mr. Chairman and members of the subcommittee, my name is Mark McClendon. I am joined by my wife, Simone, and that delightful child there, who is Mark. I do not believe that activity is related to diabetes. I think he is a normal 2year-old in that respect.
I am here today to speak not only in behalf of Mark, who contracted diabetes at the age of 8 months, but for the 2 million other children throughout the Nation who suffer from diabetes and its complications. I am mostly here on behalf of my son, Jack, who turned 3 months old today, and other brothers, sisters, and family members of diabetics who must be concerned about the possibility of their contracting this disease.
Briefly, I would like to tell you just how we discovered Mark's diabetes.
Senator HARKIN. I am going to have to ask you to be brief in fairness to everyone who is here today. I just cannot go much longer because we have a ton of witnesses. So if you could just sort of give me a brief summary.
Mr. MCCLENDON. OK. Why not just jump ahead and let my wife tell you what a typical day is like, very briefly, and we will just go on from there.
Ms. MCCLENDON. A typical day is not only caring for our child as a mother or a father, but we have become our son's pancreas. We give him three insulin shots a day. We test him four or five times a day. When he has the normal flu, we test him every 2 hours. Clearly, this is not the life of a healthy child, and we live with the everyday fear that Mark will go into insulin shock, which could be very serious.
We also live with the constant fear that Mark will in likelihood suffer from any number of possible health complications resulting from diabetes in his lifetime.
Senator HARKIN. He sounds like he has a pretty healthy set of lungs. [Laughter.]
Mr. MCCLENDON. Thank you very much for your time.
Senator HARKIN. Thank you. I am sorry that we do not have more time, but I just want you to be assured, and I know I can speak for Senator Gorton who has just joined us here, that this subcommittee is very much aware of the situation with diabetes research. I do not have the exact figures, but we increased the research quite a bit least year. As I said, the request is more than for the other items that are in all of the other parts of this budget. I think, as I said, it is not as much perhaps as what we need or want, but I think we will be all right.
Mr. MCCLENDON. Anything is appreciated.
Ms. DUCAT. Thank you very much, Senator Harkin.
STATEMENT OF STEPHEN JENNINGS, PRESIDENT, SIMPSON COLLEGE, INDIANOLA, IA, ON BEHALF OF NATIONAL ASSOCIATION OF INDEPENDENT COLLEGES AND UNIVERSITIES
Senator HARKIN. Next is Dr. Stephen Jennings, president of Simpson College, National Association of Independent Colleges and Universities.
Again, as I said before, I just want you to know your statements will be made a part of the record. If you would briefly summarize it, we would sure appreciate it.
Dr. Jennings, welcome to the subcommittee.
Dr. JENNINGS. Thank you, Senator Harkin.
Ladies and gentlemen, I am glad to be here. Simpson College is a United Methodist college of 1,100 students on the outskirts of Des Moines. We are members of NAICU, the National Association of Independent Colleges and Universities, an 800-member organization representing major research universities, small liberal arts colleges like my own, Simpson, women's colleges, historically black colleges, very diverse higher educational programs.
I am interested in talking with you for a few minutes this morning about increases for next year in Federal assistance and over the past several years what has occurred in higher education. There has been a remarkable dropoff in Federal student financial assistance support. As a share of all aid, Federal support in 1980 was about 83 percent of total financial aid, and in 1989 it had dropped to 73 percent. Campus-based programs had declined substantially in real dollars as well.
What has happened is the institutions themselves have had to come up with funding for scholarships and for financial aid. Now $2.5 billion for undergraduates' financial aid is coming right from the institutions themselves, right from our tuition dollars. We repackage it and send it out in the form of student financial aid to make up for the slack that has occurred when the Federal Government began pulling out support for financial assistance.
Institutional aid increased by 87 percent between 1980 and 1987, and institutional aid, now 14 percent, is the average for independent sector educational and general budget. In some institutions it is much higher. Mine is 28 percent of tuition dollars, which are used again for financial aid.
What this has done is dramatically affect what we have available for the educational program, for library books, for adding to the faculty, for buildings that are crumbling. Our campus was founded in 1860. We have some old buildings there, and we have to have money available to take care of that. We have not been able to do
that because we have had to shore up the financial assistance program. So it does prevent investment in the infrastructure and in the sorts of facilities that we need to update.
Also, I think it fuels tuition increases. All the tuition increases. that you have been hearing and reading about I think are largely fueled by the amount of money we need to run the program and to fuel financial aid. It erodes the endowment as well.
A principal reason why the Federal student financial assistance program has served students in the independent sector less than adequately I think may be traced to the functioning of the Pell Grant Program. Pell grants have received huge appropriations since 1980, amounting to 37 percent in real terms, but even these generous increases fail to prevent the maximum grant from losing 19 percent to inflation, and the vast majority of Pell grant increases went to provide grants to older, independent students, most of them attending proprietary schools.
Independent students now receive more than 60 percent of all Pell grant funds. Between 1980 and 1990, the number of Pell grant awards made to students attending proprietary for-profit schools rose 172 percent, and the corresponding increase for students attending 4-year colleges, public and private, went up 10 percent. It is a major problem.
NAICU is proposing in all of higher education supporting another $250 million for the SEOG, the supplemental educational opportunity grant, which really does help college students at 4-year institutions from working families.
We propose another $55 million for college work study.
We propose another $44 million for Perkins loans, those wonderful loans that we all give out on campus at about 8-percent interest, a very fair way to do it.
We propose another $36 million for the SSIG.
We propose an increase to $2,700 in the Pell grant maximum.
We are especially supportive of SEOG because it tends to help students seeking college degrees, those 4-year college degrees. It largely goes to dependent students from families. Those funds are also targeted for exceptionally needy students.
NAICU is also interested in title III, Higher Education Act funds, title VII of the HEA facilities funds, and title IX, graduate and professional education, which helps enormously with funding for fellowships for sciences.
I am pleased to answer any questions you might have, Mr. Chairman, and I particularly appreciate the chance to visit with you on behalf of NAICU. We appreciate what you did last year, too, for SSIG and SEOG. That is not forgotten.
[The statement follows:]
STATEMENT OF DR. STEPHEN JENNINGS ON BEHALF OF THE NATIONAL ASSOCIATION OF INDEPENDENT COLLEGES AND UNIVERSITIES (NAICU]
Good morning Mr. Chairman and members of the subcommittee. My name is Dr. Stephen Jennings and I am president of Simpson College in Indianola, Iowa. I am here to present views on fiscal year 1992 appropriations for my college as well as the more than 800 institutions represented by the National Association of Independent Colleges and Universities [NAICU]. NAĬCU institutions are as diverse as the