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Three, the last point is that sleep is essential. The activities and functions of the sleeping brain are necessary to maintain life; without sleep, organisms deteriorate and die.
SLEEP DISORDERS Tragically, however, the vital activities performed by the sleeping brain are not working properly in millions of individuals. Sleep disorders encompass a wide variety of conditions in which the sleeping brain is not properly working, including:
Sleep apnea.- It is estimated that 20 million Americans suser from sleep apnea, a potentially life threatening condition in which an individual intermittently stops breathing while asleep. The individual repeatedly awakens during the night, and susers from excessive daytime sleepiness.
Narcolepsy.-Individuals with this disorder experience “sleep attacks," the irresistible urge to sleep at various times during the day, regardless of the amount or quality of sleep the night before. Approximately 200,000 individuals have narcolepsy.
Insomnia.--Insomnia, the most common sleep complaint, is characterized by difficulty with falling asleep or staying asleep. Insomnia may last only a few nights or may be chronic in nature. One in three Americans complains of this condition.
Sudden infant death syndrome. ---Each year 7,000 8,000 unexplained infants deaths occur because the immature sleeping bra is unable to reliably maintain life support systems.
Sleep and aging. The prevalence of sleep disorders and sleep problems increase exponentially as an individual ages, frequently resulting in fragmented sleep and daytime drowsiness.
Stroke, epilepsy, and heart attacks. Something about the nature and timing of the sleep period predisposes one to the occurrence of these medical catastrophes.
In addition to these disorders, there are numerous lifestyle and social factors which interfere with the proper activities of the sleeping brain. From the Noor nurse to the factory worker, employees whose jobs involve shis work are repeatedly subjected to disrupted sleep patierns. Individuals who travel across several time zones experience a disruption in normal sleep patterns as well. The use and abuse of alcohol and drugs are additional factors which can wreck havoc on the normal processes of the sleeping brain. Another significant factor contributing to sleep related problems is that the general public does not allow itself to get the proper amount of sleep required to be fully rested and alert during the day. In a society which stays open 24 hours a day, individuals are not able to find enough time to get an adequate amount of sleep.
Over the past several decades scientists and clinicians have been studying and exploring the condition of sleep and its related disorders. The result of this work has been the development of a new clinical specialty, sleep disorders medicine. Sleep disorders medicine is responsible for diagnosing serious sleep problems and providing available treatment options. As you are probably aware, most major cities have an accredited Sleep Disorders Center, usually aMiliated with a major medical center. It is estimated that 400,000 to 500,000 people seek medical diagnosis and treatment for sleep disorders each year. Although developments in sleep disorders medicine have provided substantial benefits, there is still a great deal more that is needed. It is imperative that we obtain a better understanding of the function of sleep so that we can begin to more fully improve the quality of life for patients with sleep disorders.
RECOMMENDATIONS A critical first step has been taken in an effort to improve research into sleep disorders. This was the establishment by Congress of the National Commission on Sleep Disorders Research. The Commission is developing a long range plan for combating the problem of sleep disorders in the United States. Later this year, the Commission is scheduled to submit a detailed proposal for fostering basic and clinical sleep research, medical applications of this research, education and training, and dissemination of information to professionals and the general public. These recommendations will ensure that sleep is recognized as a distinct scientific and medical discipline and given appropriate consideration. The work of the Commission has the potential to improve the lives of millions of Americans who suffer from disturbed sleep, but their recommendations must be implemented in order to accomplish this. The ASDA urges this Committee to provide support and adequate funding for the recommendations of the Commission.
Mr. Chairman, the National Commission is certainly an important and historic first step, but it is important to continue to build upon past accomplishments. The
practice of sleep disorders medicine has rapidly expanded in recent years and has provided tremendous assistance to many individuals suffering with sleep disorders. Unfortunately however, research into the basic mechanisms of sleep has failed to keep pace. Today there are almost no scientists studying this area and advanced techniques in molecular biology, neurochemistry, neurophysiology, and neuroanatomy are not being applied to sleep research. Even more disheartening is that
very few scientists are interested in devoting their work to exploring the mysteries of the sleeping brain. Understanding the basic mechanisms of sleep is critical if we are to continue to have further advances in clinical sleep disorders medicine. In an order to rectify this situation, a proposal has been developed which details the needs, objectives, and justification for the establishment of a program of Centers of Basic and Clinical Sleep Research. The ASDA recommends that such a program be established within NIH.
One program which has been established and which is currently providing advancements in our understanding of the regulation of the heart and lungs during sleep is a program of Specialized Centers of Research in Cardiopulmonary Disorders of Sleep. This program
is located within the National Heart, Lung and Blood Institute. Through the SCOR program physicians and researchers utilize a multi-disciplinary approach to examine disorders such as sleep apnea and SIDS. Another program within NHLBI is a sleep apnea intervention study which would examine whether sleep apnea imparts significant morbidity and mortality and whether it can be reversed. The Association is grateful for the support that this Committee has provided for these program and encourages continued funding:
Finally, as previously mentioned, the National Commission on Sleep Disorders Research will soon be making their recommendations to Congress. One of the preliminary findings of the Commission is that sleep disorders and inadequate sleep are a pervasive problem in this society and that a contributing factor in this problem is a lack of information and understanding about sleep. In order to begin to immediately address this problem, the ASDA recommends the initiation of a nationwide public education campaign to provide available information about sleep and sleep disorders. Such a campaign, directed toward the general public, industry representatives, and health professionals, would be useful in helping to eliminate the personal suffering and financial loss associated with inadequate sleep and untreated sleep disorders. Thank you for the opportunity to present the views of the American Sleep Disorders Association. I would be pleased to respond to any questions. STATEMENT OF JOE PISCOPO, TREASURER, AMERICAN NARCOLEPSY
ASSOCIATION, INC. Senator HARKIN. Mr. Piscopo, welcome back to the subcommittee. It is good to see you again.
Mr. PISCOPO. Thank you, Senator Harkin. I am the current treasurer and a director of the American Narcolepsy Association. I am also a member and the current vice chairman of the National Commission on Sleep Disorders Research. I am here today to urge your support of increased Federal funding for narcolepsy research.
The American Narcolepsy Association represents more than 4,000 persons with narcolepsy in the United States. I have suffered from narcolepsy since age 14. Narcolepsy is a sleep disorder characterized by excessive daytime sleepiness and sleep attacks without warning and without regard to the amount or quality of the prior night's sleep. Sleep may occur at inappropriate times such as on the job or at school or while driving, reading, or eating. Other symptoms of narcolepsy are cataplexy, a temporary loss of muscle control triggered by ordinary emotions, vivid hallucinations, and sleep paralysis.
It is estimated that nearly 400,000 Americans suffer from narcolepsy, making it more prevalent than multiple sclerosis or hemophilia. Narcolepsy typically appears during the early teenage years. It is a lifelong illness with no known cure or preventive treatment. The sleepiness of narcolepsy can be treated with dangerous stimulant drugs which have undesirable side effects; but most narcoleptics are undiagnosed and untreated with little hope for a successful, happy life.
Mr. Chairman, narcolepsy research is primarily conducted at the National Institute on Neurological Disorders and Stroke, the NINDS. Despite this subcommittee's strong support with specific language encouraging greater narcolepsy research at NINDS in each of the past 3 years, total narcolepsy research has not increased from the fiscal year 1986 level of only $1.27 million. Last year only nine grants were awarded, a total of $1.25 million. Only 3 of the grants, a total of $173,000, were awarded for clinical research on human narcolepsy.
With all due respect, Mr. Chairman, that is not good enough. The ANA recommends that the committee specifically provide that $2.5 million of the authorized funding for NINDS be designated for narcolepsy research in the coming year. Such an authorization would enable the recently expressed interest in narcolepsy research by NINDS to hopefully result in an actual increase in the number and amount of grants awarded for narcolepsy.
The National Commission on Sleep Disorders Research was established by Congress to develop a long-range national plan for basic and clinical sleep research and sleep disorders medicine. The recommendations of the commission are expected to be completed and reported to Congress in September of this year. Our early findings from public hearings across the United States indicate that there are significant needs for a stronger Federal focus on accountability for research on narcolepsy and other sleep disorders, for increased public awareness about sleep disorders and for better physician education and training programs.
PREPARED STATEMENT The commission's work has a potential impact on the lives of narcolepsy patients in a dramatic way. At the same time, it is possible to save many millions spent on health care today and avoid the many thousands of lives lost and the billions spent for property damages each year as a result of accidents which could be prevented. We ask the committee to enthusiastically support the findings of the National Commission on Sleep Disorders Research by promptly implementing and adequately funding its recommendations.
Thank you, Mr. Chairman, for the opportunity to speak today. [The statement follows:)
STATEMENT OF JOSEPH A. PISCOPO Mr. Chairman, my name is Joe Piscopo, I am the treasurer and a director of the American Narcolepsy Association. I am also a current member of the National Commission on Sleep Disorders Research. I am here today to urge your support of increased Federal funding for narcolepsy research.
The American Narcolepsy Association represents more than 4,000 persons with narcolepsy in the United States. I have suffered from narcolepsy since age 14. Narcolepsy is a sleep disorder characterized by daytime sleep attacks, without regard to the amount of prior night sleep. Sleep may occur at inappropriate times, such as while working, driving, eating, or in school. Other symptoms of narcolepsy are muscle weakness, vivid hallucinations and sleep paralysis.
It is estimated that nearly 400,000 Americans suffer from narcolepsy, making it more prevalent than multiple sclerosis or hemophilia. Narcolepsy typically appears during the early teenage years. It is a life-long illness, with no known cure or preventive treatment. The sleepiness of narcolepsy can be treated with dangerous stimulant drugs, which have undesirable side effects. But most narcoleptics are undiagnosed and untreated, with little hope for a successful, happy life.
Mr. Chairman, narcolepsy research is primarily conducted at the National Institute on Neurological Disorders and Stroke (NINDS) and the National Institute of Mental Health (NIMH). despite this subcommittee's support and emphasis on greater narcolepsy research over the past three years, total narcolepsy research at the NINDS had not increased from the fiscal year 1986 level of only $1.27 million.
Last year, only 9 grants were awarded, a total of just $1.25 million. Only 3 of the grants, a total of $173,000, was awarded for clinical research on human narcolepsy.
With all due respect, Mr. Chairman, that's just not good enough! the American Narcolepsy Association recommends that the committee specifically provide that $2.5 million of the authorized funding for the NINDS and the NIMH be designated for narcolepsy research in the coming fiscal year. Such an authorization would enable the recently expressed interest in narcolepsy research by the NINDS and the NIMH to result in an actual increase in the grants awarded for narcolepsy.
The national commission on sleep disorders research was established by Congress to develop a long range national plan for basic and clinical sleep research and sleep disorders medicine. The recommendations of the commission are expected to be completed and reported to Congress in September, 1991. Our early findings from public hearings across the United States indicate significant needs for greater research funding for narcolepsy and other sleep disorders, increased public awareness, and better physician training programs. The commission's work has the potential to impact the quality of life of narcolepsy patients in a dramatic way. We ask the committee to support the findings of the National Commission on Sleep Disorders Research, by promptly implementing and funding its recommendations.
Thank you Mr. Chairman, for the opportunity to appear before the subcommittee today. I'd be happy to respond to any questions you may have.
Senator HARKIN. Thank you very much, Mr. Piscopo. Let me just ask, first of all you have mentioned the funding for narcolepsy research has been stable since 1986.
Mr. PISCOPO. Yes, sir.
Senator HARKIN. This subcommittee included in its report last year a suggestion that NINDS increase the research, and I can assure you that we are going to follow up on this.
Mr. PISCOPO. I appreciate that.
Senator HARKIN. How much would be required to fund the recommendations of the National Commission on Sleep Disorders Research for fiscal year 1992?
Mr. PISCOPO. The recommendations are not yet finalized. I am the commissioner. The commission has not completed the final recommendations, and it is obligated to do so in the final report. Those numbers will be included. There will be none for this current fiscal year, I believe, because the report will be in the next fiscal year.
Senator HARKIN. OK, thank you both very much for being here. I appreciate your testimony. Good to see you again, and we will continue our efforts in this area.
Mr. PISCOPO. Thank you, Senator Harkin.
Dr. CZEISLER. Senator, there was an article in the New York Times yesterday describing some recent work that we had done with the astronauts.
Senator HARKIN. I am afraid I did not read it. Let me see it. I would be interested in reading that. STATEMENT OF ALVIN V. BLOCK, PRESIDENT, ESA, INC., BEDFORD, MA
Senator HARKIN. Our last witness today is Al Block, president of ESA, Inc. Thank you very much.
Mr. Block, welcome to the subcommittee. Please proceed.
Mr. BLOCK. OK, thank you, Mr. Chairman. I am Alvin Block, president of ESA of Bedford, MA. I would like to discuss the application of our technology of pattern matching to help problems, particularly nerve degenerative disorders.
Last year I reported that we were rapidly making progress in adapting this technology to the diagnosis of three of the most debilitating diseases in our society, Alzheimer's, Huntington's, and Parkinson's. I asked Congress to recommend that the NIH fund a program that would lead to the development of a diagnostic data base using this technology. You have done this. Thank you.
Massachusetts General Hospital and ESA submitted a proposal to the NIA to develop this data base. We have received positive feedback from NIA, who would like to fund it. In studying Huntington's disease, we have found specific relationships between low level marker compounds that are not present in normal patients. I predict that within a year using easily obtainable samples, we will be able to identify patients with Huntington's disease with near certainty.
One advantage of this technique is that by identifying the biochemical abnormalities of a disorder, a research can determine the neurochemical deficiencies, and this can lead to approaches for treatment and cure. Our colleagues at the MGH have begun animal studies which initially show possible success in the treatment of Huntington's.
Today's story sounds ideal. A small company makes good by dint of brains and hard work, and I wish this were the whole story, but it is not. Europeans and Japanese are buying our instruments at rates that exceed our original expectations. Japan has for a long time been one of our major customers. Now they are purchasing our most sophisticated instrumentation. The story in Europe is the same.
We are concerned that the United States is losing its position of scientific superiority to foreign competition in the use and application of this revolutionary technology. American researchers need more funds to acquire sophisticated instrumentation. We feel that a goal should be a data base with which to rescreen all of the Alzheimer's patients to provide a solid foundation of data for developing possible pharmaceutical treatment.
What would be the financial impact if we are right? There are 4 million people who are presently diagnosed with Alzheimer's. They cost the United States $90 billion per year for their health care. Probably as many as 40 percent of these people do not in fact have Alzheimer's, for which there is little useful treatment. They have other diseases for which treatment is available at relatively little cost.
We estimate $35 to $40 billion could be diverted to other programs or used to reduce the budget deficit, and, more importantly, some of the 2 million Alzheimer's victims now consigned to hopeless, custodial care might get a chance to live again.
[The statement follows:)