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try in both humanitarian and economic terms, and finally what we are and should be doing about them.
I would like to enter the agenda which will be used as a general guide for this morning's discussion, together with a list of participants.
(The statements above referred to are as follows:)
1. Purpose of the inquiry-statement by committee chairman.
What are the neurological disorders ?
tivity, wages, tax revenue, welfare services provided by community, State
or Federal Government? Cost of neurological disorders to the individual and family in terms of
medical expenses and personal tragedy? 3. The attack on the neurological disorders :
What do we know today concerning methods of prevention, diagnosis, and
cure of the neurological disorders? In terms of the knowledge available, what medical, educational, and other
facilities and what medical manpower is presently available to deal
with these problems? What research has been achieved in the past decade to successfully combat
the neurological disorders; to what degree is new knowledge being applied; how profound is the research attack on these problems; to what
degree is manpower being available to conibat these disturbances? 4. The needs of the future:
How much must medical, paramedical facilities and services be extended
to meet the problems in various neurological disorders; what is needed and what are the present and probable financial handicaps in securing
them? Promising areas of research which must be pursued, new areas of research
to be opened up in this field vitally necessary. 5. What can we do organizationally or by legislation about strengthening the
Nation's attack on the neurological disorders?
In research, research facilities, and training?
Dr. Cornelius Traeger, National Multiple Sclerosis Society.
Blindness. Dr. Harry Sands, executive director, Epilepsy Association of New York. Mr. Carl Owen, executive committee, National Multiple Sclerosis Society. Dr. G. Milton Shy, clinical director, National Institute of Neurological Diseases
and Blindness. Dr. Frederick L. Stone, chief, extramural programs, National Institute of Neuro
logical Diseases and Blindness. Dr. Seymour Kety, Associate Director-in-Charge of Research, National Institute of Neurological Diseases and Blindness.
It is my understanding that Dr. Cornelius Traeger will serve as discussion leader for the group of witnesses. It will be appreciated, Dr. Traeger, if you will stand and introduce yourself for the record, and if the other witnesses will do the same, please. After that, Dr. Traeger, will you please proceed to develop the agenda in anyway which seems most apropriate to you?
Dr. TRAEGER. Thank you, Mr. Chairman, and members of the committee. My name is Cornelius Traeger, doctor of medicine and consultant medical director of the National Multiple Sclerosis Society and consultant physician of Roosevelt Hospital and attending physician at the Hospital for Special Surgery and a fellow of the American College of Physicians; a fellow of the Academy of Medicine and the New York Academy of Science; a member of the advisory council for the National Institute of Neurological Diseases and Blindness.
The other witnesses who will appear before you today, I will ask to identify themselves and to give their backgrounds, and, gentlemen, this is no time for modesty.
Will you introduce yourself now, Dr. Bailey.
Dr. BAILEY. My name is Pearce Bailey, director of the National Institute of Neurological Diseases and Blindness and also clinical professor of Neurology, Georgetown University, Washington, D. C.
Dr. TRAEGER. Our next witness is Dr. F. M. Forster.
Dr. FORSTER. I am Francis Michael Forster, professor of Neurology and dean of the Georgetown University School of Medicine; a past president of the American League Against Epilepsy.
Dr. TRAEGER. Next is Dr. Brooks.
Dr. Brooks. I am Dr. Glidden L. Brooks, of New York City. I am medical director of the United Cerebral Palsy Associations and a fellow of the American Academy of Pediatrics.
Dr. TRAEGER. Next is Dr. Van Meter.
Dr. VAN METER. My name is Karl Van Meter and I am executive director of the United Cerebral Palsy Associations, Inc. Accepting your word as to modesty, for over a decade I have served as executive vice president in a similar capacity for various service organizations. I was director of development for the National Association of Manufacturers; I was general manager of the Red Cross Fund Raising Campaign in New York City for 6 years; I was executive vice president of the United Service Organizations for a year following October 1, 1950.
Dr. TRAEGER. Our next witness will be Mrs. Tankersley.
Mrs. TANKERSLEY. I am Ruth McCormick Tankersley, President of the National Epilepsy League.
Dr. TRAEGER. Next is Dr. Milhorat.
Dr. MILHORAT. I am A. T. Milhorat, chairman of the medical advisory board of the Muscular Dystrophy Association of America; associate professor of medicine, Cornell Medical College, and attending physician for the New York Hospital and president of the New York State Board of Medical Examiners.
Dr. TRAEGER. Next is Dr. Owen.
Dr. OWEN. I am Carl M. Owen and I am one of the members of the executive committee of the National Multiple Sclerosis Society. I was its first president and I am senior partner of the law firm of Wilkie, Owen, Farr, Gallagher & Walton, of New York, and have been a practicing lawyer in New York City since 1905.
Dr. TRAEGER. Next is Dr. Shy. Dr. Shy. I am Dr. G. Milton Shy, Clinical Director, National Institute for Neurological Diseases and Blindness and associate clinical professor in neurology, Georgetown University.
Dr. TRAEGER. Next is Dr. Stone.
Dr. STONE. I am Dr. Frederick L. Stone, Chief, Extramural Programs, National Institute of Neurological Diseases and Blindness.
Dr. 'TRAEGER. I think, Mr. Chairman, that completes our list of witnesses.
Mr. DOLLIVER. Will you proceed as you see fit, Doctor?
STATEMENT OF DR. CORNELIUS TRAEGER, MULTIPLE
SCLEROSIS SOCIETY Dr. TRAEGER. I am truly grateful for the privilege of appearing before you to present the case for the neurological and sensory diseases in behalf of the National Committee for Research in Neurological Disorders.
The National Committee for Research in Neurological Disorders was organized from national voluntary health agencies and professional groups, in response to a growing demand for a national-research program in the vast field of neurology and sensory disorders.
The members of the national committee are the National Epilepsy League, the National Multiple Sclerosis Society, the National Society for Crippled Children and Adults, the Muscular Dystrophy Association of America, the United Cerebral Palsy Associations, the Committee for the Public Understanding of Epilepsy, and the American Academy of Neurology.
The primary objectives of the national committee are: (1) To survey the current needs in the field of neurological and sensory disorders, with special reference to medical research and the training of specialized personnel and treatment facilities; (2) to make these needs known to the public, to universities, and to research institutions and to Government agencies; (3) to stimulate research and training to the extent of the studied needs; (4) to jointly attack national problems in these areas of disease, where the combined action of the interests of this committee would be more efficient than the action of any one of these societies alone.
I want to speak for the neurological and sensory diseases—the neg. lected and forgotten ills of mankind-among them both chronic and infectious diseases.
The number of persons dying from neurological and sensory disorders is exceeded only by the number of persons dying from cancer and heart disease.
The number of those presently affected by neurological and sensory disorders, which are of grave or less serious importance, may be estimated conservatively at about 20 million people. That is a great many citizens.
For most of these diseases the causes are unknown and no specific treatment is available. They chiefly affect children and adults in the very prime of life. Of course, that does not exclude us oldsters, as we also get neurological diseases, but the greater majority of these people are the productive manpower and womanpower pool of this country.
It was emphasized by the chairman that the broad concept of neurological and sensory disorders constituting a major health problem in the United States has only recently gained roots.
While most of us think of cancer as cancer and heart disease as heart disease, the concept of the neurological diseases seems to have been separated into categories such as poliomyelitis, cerebral palsy, epilepsy, and many other diseases. Each seemed to constitute a separate problem; but this just is not so.
Just as the problems of heart disease are linked up to the entire circulatory system, so are all these diseases referable to the nervous system-the brain, the spinal cord, and, of course, their important appendages—the nerves of the body, the peripheral nerves, and the sensory organs which provide us with the powers of sight and hearing.
As a distinct group of disorders, the neurological and sensory diseases create a highly serious public health problem, and, as I said before, they affect approximately 20 million persons in the United States and at least half of them are gravely disabled.
Among the major crippling chronic neurological and sensory disorders and the detailed breakdown is in the prepared statement which has been referred to-are such diseases as epilepsy, cerebral palsy, hemiplegia, Parkinson's disease or shaking palsy, apoplexy, multiple sclerosis, muscular dystrophy, myasthenia gravis, blindness and deafness, chronic meningitis, chronic encephalitis (which we speak of as brain fever), poliomyelitis, neurosyphilis, the various tumors of the nervous system-tumors of the brain and tumors of the cord and of the peripheral nerves, and so on.
The list also includes that vast number of handicapped children who now occupy State institutions due to either brain injury or to disease. Those are the important diseases, but there is a whole host of what we call minor ones which are just as disabling in terms of manpower, and that category includes such diseases as shingles, migraine, and others. Of course, the question of migraine is one of chronic headaches. The man who has migraine is not any more useful on his job than a man with a brain tumor.
No other group of disorders causes such permanent crippling-and this crippling is usually so severe as to cause profound psychological, social, and economic dislocations to the sufferer; no other group receives so little medical or research attention, and yet no other major group of disorders represents such an economic loss to the Nation. The needs are great and, as I shall try to explain, the work to be done is urgently important.
It has been said before that it would be possible for a surgeon to start cutting through the human body, beginning at the feet, and that such an amputation could be extended quite a ways-2 or 3 feetand at the end of that space there would still be left a partially useful human being. But if such a surgeon started cutting from the head down, he would not get very far. At the end of 2 inches you would not have a human body. Such is the importance of the brain to the health and life of man.
I know that statistics are boring, but sometimes they are revealing. An analysis of the amount appropriated from both the Federal Government and the public for research in the years 1951 to 1952, reveals the following significant figures: $29 for each victim of cancer; $1.75 for each victim of heart disease, and 3 cents for each victim of a neurological or sensory disorder. There is a marked dislocation. What is responsible for the neglect of these neurological and sensory disorders?
There are many reasons. In the first place, they do not inspire the immediate fear of death. Cancer has that faculty, and when a man has a cancer he thinks, "This is it; I am going to die,” although strokes are the No. 3 killer and brain tumors are a frequent cause of death.
The second reason is that the majority of these diseases are not considered contagious or infectious, such as tuberculosis or venereal disease or the flu, with the exception of some of the serious ones such as meningitis and poliomyelitis.
Third, the contributing public is not as aware of the drama of the neurological and sensory diseases as they are of cancer or heart disease or tuberculosis or arthritis, although much tragic drama is commonplace in such diseases as cerebral palsy, multiple sclerosis, Parkinson's disease, or muscular dystrophy.
Another reason is that there has always been a great deal of mystery about the brain, which has tended to diminish research efforts in this field. For example, when I was a student, and for a great many years after, neurology was described as a science of diseases for which nothing could be done. This we are hoping to change.
Another very important reason is that the nervous system—that is, the brain and spinal cord—are enclosed within a rigid bony envelope the skull and the spinal bones—which makes exposure difficult and often hazardous. You cannot go chopping into a man's brain to do research. It is a difficult and dangerous procedure, and the same thing is true with operations on the spinal cord.
Still another reason, equally important, is that many of these neurological disorders have been surrounded frequently by an aura of shame or guilt or social embarrassment. The patient with epilepsy or cerebral palsy or multiple sclerosis is ashamed of his disease and often tries to conceal or to minimize the external manifestations of his disease. The relatives of such patients are too often shy in regard to the affilicted ones. The patients and their families are loathe to discuss the matter and are reluctant to seek others to speak for them.
It is for these reasons and others that only a small portion of the funds appropriated for scientific research have been made available for investigation of these disorders.
Our fellow citizens, however, in recent years, have demonstrated an awareness of the seriousness of these problems by the creation of increasingly effective voluntary health agencies, dedicated to the solution of these various disease mysteries. Such agencies are represented here today.
Much is known about these diseases. A large book could be written containing the presently available knowledge, but a much larger book would have to be written to contain that which is yet to be learned. Science has begun to develop new lines of investigation and we must pursue others which promise major advances in the development of effective treatment in these neurological and sensory diseases.
As a result of the work done in the past 10 years, such disorders as Parkinson's disease, myasthemia gravis, and especially epilepsy, can be partially controlled through the use of new drugs. Precision diagnostic instruments, like the electroencephalograph and the electromyograph, operate in the field of neuromuscular disease somewhat like the electrocardiagraph operates in heart disease, and the radioactive tracer technique is also pretty well developed. These all mark advances whose potentialities are far from exhausted.