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whose vision is barely useful-all these are victims of this condition. Unless the genesis of this disorder is established, those who will inevitably suffer it in the future will also have to fumble in the permanent dark. Research manpower
The problem of expanded research in the neurological and sensory disorders is, of course, contingent on the manpower available to conduct such investigations. At the present time, only in certain areas of laboratory research has a shortage in scientific personnel so far made itself felt. This is particularly so in the field of ophthalmic disease where, for example, there is an acute shortage of investigators capable of studying of studying the major biochemical processes of the eye which might lead to successful therapy of the ophthalmic disorders.
The dearth of trained neurologists, however, poses a special problem. In almost every major field of medicine, a large number of practicing physicians devote a portion of their time to research investigations. It is to these clinicians that the public must look for the development of research findings in the laboratory and in their application to human illness. Without them, the work of the laboratory scientist in the scientific journals gathers dust on the library shelves. The shortage of medical specialists in neurological and sensory disorders, therefore, represents a shortage of clinical research manpower and a consequent delay in the development of new therapies.
The problems of research manpower as a whole in this field threatens to become a major one in the event that research support is forthcoming on the scale appropriate to the Nation's needs. At the present time, funds available for the training of investigators in this field are sufficient for replacement of investigators who leave or retire from the field.
THE FUTURE OF THE PROBLEM
There is no reason to believe that the neurological and sensory disorders must remain a burden to the Nation. The organizations for handling these problems now exists and it only remains for them to receive sound financial support.
The past decade has seen the growth of the voluntary health agencies, devoting themselves largely to providing health and welfare facilities to special groups of patients and to some extent to the support of research. Many patients suffering from various neurological disturbances, of course, have no central private agencies representing their needs and even only a minority of those so served can receive the services which they need.
It is clear that these services must be expanded broadly. The ability of the voluntary health agencies to do so has and does now depend on the degree of interest they can stimulate on the public and the amount of support which can be obtained thereby. It seems unlikely, however, that the vast job which must be performed can be achieved through these sources alone.
In certain areas, most notably in blindness and for certain groups of crippled children and adults State aid has been considerable; and the Federal Government, through the Office of Vocational Rehabilitation and Children's Bureau, has been able to supplement these State funds for a limited number of purposes. It is to be hoped that funds in these areas can be expanded and that broader categories of support may be established to cover most of the neurological and sensory disorders and more services within each disorder already covered. It should be noted that the voluntary health agencies in the field work closely with State and Federal agencies to make health, educational, and welfare facilities and funds available to those who need them most and/or where they will be most productive.
While these services must be expanded far beyond their present status, it is clear that absolute emphasis on medical and paramedical aid would be misplaced ; the costs to the Nation, if they were to achieve anything like the ideal goals needed, would be beyond our capacities. In addition these services in this field, as in no other, represent a distinct compromise; they can never fulfill the ultimate needs of the patient. The cerebral-palsied child, for example, who has been rehabilitated is still a cripple; the blind who have learned to walk with dog or read by braille are still living in the dark. This is not to imply that such services are not necessary; without them, hundreds of thousands are now suffering isolation and destitution.
This is to say, however, that research devoted to the prevention and cure of these disorders must have a high priority. Within the past 2 or 3 years there has been more active recognition of this fact by voluntary health groups and the professional persons or groups associated with them, and more funds have been 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. D'iversity 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 znotion, 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 the 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 integrate 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, should 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 by 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, 800,000 Epilepsy--
1, 500,000 Cerebral palsy
100, 000 Parkinsonism
1, 500, 000 Aphasia---
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 may 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.) 1 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 special problems in terms of their productive and economic loss to sufferers and to the Xation. 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?
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 lo 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. Mr. DOLLIVER. Is there any known treatment or cure for that? Dr. BAILEY. No; there is not. Mr. DOLLIVER. Thank you. The CHAIRMAN. What brings it on? 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 years.
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. That 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 myself on it when I have a little more time.