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devoted to research than ever before. But the burden of maintaining adequate health services and facilities, plus the tremendous research needs in the field, makes the total support of research by private sources an obvious impossibility. The National Committee for Research in Neurological Disorders, in addition to stimulating research, has as one of its main functions the problem of establishing a clearinghouse for research in this field so as to avoid useless duplications of research support and to some extent establish broad areas of research priority which might prove especially fruitful for the conquest of a number of disorders. The National Institute of Neurological Diseases and Blindness
The greatest stimulation to research in this field, as in others, however, has come from the Federal Government, and it is to Washington that we have looked finally for that implementation of the neurological research effort which will supplement on a broad scale the efforts of the voluntary health agencies and individuals working under university or institutional auspices. While it is clear that the Federal Government must bear a large part of the burden of support of research in this field, it should not be wholly in their hands. There are many authoritative differences of opinion of the kinds of research to be undertaken concerning any given problem, and which approach is most valid can only be tested by actual experiment. Diversity of support, therefore, guarantees that many different opinions will prevail and that the research attack will be various enough to increase the chances for success.
With the establishment of the National Institute of Neurological Diseases and Blindness in the autumn of 1950, largely as a result of public demand, it seemed probable that the future of neurological research in the United States was assured. In view of the past appropriation histories of the other major national institutes of health, it was hoped that Congress would respond as generously again to the needs of a large body of the American people. This however, has not been the case and, while the Institute has already made considerable contribution to the research needs of the field, it is far from filling the enormous vacuum which has existed for so long.
The machinery for fulfilling these needs at the Institute has already been set in motion, but it grinds exceedingly slow. Its research grants and research fellowship program, patterned on the successful examples of the other national institutes of health, could very well speed the attack on the neurological and sensory disorders and strengthen and renew our sources of scientific manpower. The record of the Institute shows, however, that it has been able to support less than half of ihe qualified research projects presented to it and far fewer of the qualified research applications. A preliminary survey by this committee, attempting to ascertain the research potential in this field, indicates that if it were not for the reluctance of universities and medical schools to apply for aid, where aid, they know, cannot be forthcoming, the relative degree of Institute support would be far less than it is. This survey reveals a need for Institute research funds alone in the amount of $18 million. Intramural program at Clinical Center
The Institute's intramural-research program at the Clinical Center in Bethesda should be given special and additional support. Here we have the opportunity of launching the first full-scale coordinated research program in the world against neurological and sensory disorders. Here we have for the first time the opportunity to investigate these disorders with the latest precision tools and to inte. grate the data they yield with our rapidly increasing knowledge in the basic biological sciences. But even more, if this program is properly supported, we now are in a position to make a frontal attack on the intricacies of the nervous system and the importance of their functions to health and disease.
We have mentioned the complexity of the nervous system with its important sensory endings. We have mentioned its diffuse and wide ramifications and arborizations throughout the entire body from its highest control tower, the brain, to its simplest reflex structures which mediate the vital functions of respiration and circulation. To explore through this vast and complex domain of bodily function and discover causal explanations for the major neurological and sensory disorders requires the application of newer technics from many disciplines in the clinical and basic sciences. And it is in such a collaborative effort the Institute's intramural program, if more fully supported, shonld bring to fruition the practical therapeutic applications to the millions of sufferers more rapidly and more completely than if the task were undertaken by numerous isolated projects.
A definite termination for the public health problem represented hy the neurological and sensory disorders cannot, of course, be predicted. The growth of interest on the part of the public and the Statae and Federal Governments has been encouraging and has resulted in extraordinary growth within a very few years. There is considerable evidence, however, that even as we move forward, the problems are even larger than we supposed and that we will not resolve them within the near future unless far stronger effort and support is available. This committee cannot urge the Congress too strongly to reconsider the nature of the problem and to join the private and professional agencies we represent in an all-out attack on the neurological and sensory disorders. APPENDIX A.-Incidence of major crippling chronic neurological and sensory disorders
Cases Cerebral vascular disease.
1,500,000 Cerebral palsy
1, 500,000 Paraplegia
400,000 Multiple sclerosis and other demyelinating diseases..
300,000 Muscular dystrophy
100, 000 Blindness.
1, 700,000 Totally blind
260, 000 Blind in 1 eye
1,000,000 Vision barely useful.
340, 000 19.5 percent of total affected by cataracts 15.2 percent of total affected by keratitis 10,5 percent of total affected by glaucoma Deafness (760,000 totally deaf)
4, 560, 000 Cronic meningitis.
15, 000 Chronic encephalitis-
100, 000 Chronic poliomyelitis.
225, 000 Neurosyphilis
120, 000 Brain, spinal, and peripheral nerve tumors.
10,000 Myasthenia gravis----
30,000 Accident and injury to the nervous system.
1,000,000 (Exactly how serious this problem is we do not know, but some idea of its extent niay be realized when we consider that during World War II there were about 25,000 penetrating wounds of the head (a much greater, though unknown, number of closed head injuries), and 230,000 peripheral nerve injuries. Again, more than 200,000 persons yearly suffer skull fractures in auto accidents; and approximately 10 percent of all civilian accidents
result in injuries to the nervous system.) ? What may be termed “minor" neurological disorders, such as neuralgia, neuritis, radiculitis, Bell's palss, herpes zoster, migraine, and other forms of chronic headache, are, in fact, extremely serious, though their residual effects are not as debilitating as the disorders listed above. The minor disturbances are extremely common and painful, and present Sperial problems in terms of their productive and economic loss to sufferers and to the Nation. * Chronic headache, for example, affects 12 to 15 million persons in the United States, and is more responsible for employment absences than any other single medical problem, with the possible exception of the common cold.
Mr. HESELTON. Mr. Chairman?
Dr. BAILEY. We report through the Department. However, the appropriations are line items for each institute.
Mr. HESELTON. What is the date of the last report, and what period does it cover?
Dr. BAILEY. It would be 1952-53.
Dr. TRAEGER. Dr. Bailey, is there any importance in epidemiology in the field of these neurological diseases? Can you tell us anything about that?
Dr. Bailey. Yes; very much so. I think it is a good example where, for instance, the National Institute can properly attack a major
problem. For instance, crippling diseases, chronic diseases are not reportable. It is not mandatory. So it is very difficult to get an estimate of the morbidity and mortality of these diseases.
Epidemiological studies, particularly in the field where there are so many diseases in which the causes are unknown, are very important to get a lead on what causes the disease.
You gentlemen may know that the cause of pellagra, for example, was discovered by an epidemiological study. We are just beginning this work.
We have already completed one epidemiological study on multiple sclerosis which indicated that the incidence of multiple sclerosis is higher in the North than it is in the South in the United States. The second project, just initiated, was stimulated by a report from Guam that among the Chamorro population there the incidence of amyotrophic lateral sclerosis, which is sometimes called Lou Gehrig's disease because it is the condition which killed the famous baseball player—a famous disease which kills in about 3 years—was much higher in Guam than in the United States.
In collaboration with the Navy Department and the Department of Interior, in order to get cooperation from the local government in Guam, we set out to see if this were true and, if it were true, would it lead us to anything which might give us a cause for this disease.
Well, in the preliminary survey which was undertaken this summer in 2 months—and I think you will admit that is quite fast-the investigation was taken through Guam, Saipan, and the neighboring islands, and in Guam we found that the incidence of the disease was 50 times higher than in the United States. Now, why? That is the second phase of the project.
That is the phase of the project we hope may give us some lead as to what caused this very torturing and killing disease.
Does that answer your question?
Mr. DOLLIVER. You referred to Parkinson's disease, shaking paralysis. Is that the right name for it!
Dr. BAILEY. No. That is another one. This last one has the worst name of all. It is amyotrophic lateral sclerosis.
Mr. DOLLIVER. I am referring now back to Parkinson's disease. Is that shaking paraylsis?
Mr. BAILEY. That is correct. It is the same thing.
Dr. Bailey. There are supposed to be three types. One type follows an acute encephalitis; that is, brain fever. Another type is associated with arteriosclerosis. Another type, known as the idiopathic type, we do not know the cause of.
The CHAIRMAN. How long does it last?
Dr. Bailey. It is a progressive disease. It may last anywhere from 5 to 35 year's.
Dr. TRAEGER. Without mental impairment.
Dr. Bailey. There is often no mental impairment but there is progressive motor impairment. They develop tremors, bizarre movements, grotesque movements, and they become ashamed of exhibiting themselves, and it is a very pathetic situation.
Mr. PRIEST. Mr. Chairman?
Mr. PRIEST. Mr. Chairman, I want to ask one question before the neurological panel is finished for the day, and I do not want to ask it for the purpose of opening up an entirely new subject for discussion and prolonging the hearing.
I wonder, Dr. Bailey, if there is much research in the field of what we might call the psychosomatic relationship in neurological diseases.
Dr. BAILEY. Yes, there is a very large need. Frequently you have two reasons. A neurological patient is apt to get a reaction to his disability, a psychological reaction, because he has a socially unacceptable symptom. This is particularly marked in epilepsy.
In addition to that, if any large area of the brain is involved he might have to function on a lower intellectual level than he did before, which creates an emotional problem and has to be treated as such.
Mr. PRIEST. Doctor, if you will pardon me for referring to this, which is very recent and personal, I just want to see if it has any relationship, because it started me to wondering whether or not there might be some psychosomatic research necessary in connection with these diseases.
About 18 years ago I was involved in an automobile accident. It was not too serious, but it tore up some tendons in my back and damaged some nerves. "I was told in the diagnosis at the time that some nerves there were damaged. Consequently, for a period of over a year I did not have much feeling in the index finger of my left hand. It was pretty dead to any sort of sensation.
That passed away, however, and I had not noticed it for 18 years until 3 weeks ago, when I was driving on Sunday afternoon. I stopped behind a bus, and the man behind me could not stop as well as I did, and his car crashed into the back of my car, damaging his car somewhat. But momentarily I had the same sort of emotional reaction that I had 18 years ago when I had to turn my car over to keep from hurting some other people in a bad accident. Îhat was just for a flash that I had the same feeling. That scene came back to me.
That night, Doctor, that finger had the same feeling, and even today, though it is passing away, and for the last 3 weeks, that finger has had that same feeling.
I realize that is getting off into a field of which I am greatly interested, frankly, personally, and have been for a long time; but I thought that there might be some relationship in that sort of a situation, neurologically speaking.
Dr. BAILEY. Yes, there might be, but we do not know whether you were hurt in the second operation or where.
Mr. Priest. I was not hurt at all in the second operation. It did not jar my car very much, but it was purely an emotional reaction. It did not hurt me at all.
I had 5 other people in the car, and nobody was even injured in either car, but I assume, at least, it was that same emotional reaction that I had 18 years ago which caused that finger to react that way. I wanted to go further with it. I am going to do a little research
I myself on it when I have a little more time.
Dr. BAILEY. The Germans have a word, “augenblickdiagnostic," which means a highbrow diagnosis. Using that as a point of departure I would agree with you, sir.
The CHAIRMAN. Off the record. (Discussion off the record.)
Dr. TRAEGER. Mr. Chairman, I am really embarrassed about the length of time these hearings have taken, and I would like to crave your indulgence to see if Dr. Harry Sands can present for the record à statement dealing with the problem of employment of epileptics. We will not take your time now, but I would like to be sure that his statement will be a part of the record.
The CHAIRMAN. Certainly it will. We have some few minutes if Dr. TRAEGER. Very well. Dr. Sands, will you take 2 minutes, please?
STATEMENT OF DR. HARRY SANDS, EXECUTIVE DIRECTOR,
EPILEPSY ASSOCIATION OF NEW YORK
Dr. SANDS. We have heard a rather revealing fact this morning. Many of us did not pay much attention to it. That was that 80 percent of the persons with epilepsy can have their attacks controlled right now, if they get good medication.
We ought to see another side of the problem that we have not spent too much time on, and that is the problem of the rehabilitation of persons who have some facilities right now. Perhaps we have talked about the research problem in a vacuum. We have not tied it up with the partnership that goes along with the kinds of things that the private agencies can do, and also the problems of rehabilitation.
Right now, even when we control a person's seizures completely and he does not have any attack because he is on good medication, this person cannot get a job if it is revealed that he has epilepsy.
In 18 States in this country we find that they are not permitted to marry. In fact, in the State of Indiana, a woman who marries an epileptic can get a sentence of imprisonment of not less than 2 years and not more than 21 years. In the State of New Jersey a similar situation exists, in the sense that no marriage license shall be issued when either contracting party has epilepsy.
Even though epilepsy is not a hereditary disease and it is not contagious, you cannot now enter the United States and get treatment for epilepsy. You are barred at Ellis Island or at any port of entry. In short, if you are to try to seek care in this country for epilepsy, though it is not a contagious disease, you are not permitted to enter, or you are at least held up.
We cannot go into a full discussion of this social and economic aspect of epilepsy at this late hour, but we can indicate that if we are going to permit persons with epilepsy to be employed—and they should be employed; there is not any reason at all they should not be employed—we have to reenfranchise them. It is impossible to say to a person with epilepsy now, “Your attacks are controlled. You are perfectly normal, like anybody else in the population. You are a bright person. There is not any reason why you should not indulge in everything else that everyone else indulges in," and then have the kinds of obstacles placed in his way that are placed there, so that he cannot make a good employee.