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New improved surgical techniques for operations on certain types of diseases have been developed; new diagnostic techniques and some new treatments resulting from ACTH and cortisone have achieved good results in regard to diseases of the eye. We are beginning to use such precision tools as the electronmicroscope, employing the technique of X-ray and also the technique where tiny little microelectrodes can be inserted into the patient and be almost concentrated on a single cell, and the culture of planting nervous tissue outside the body so that these living cells grow and reproduce in a test tube under certain conditions.
All of these techniques are new in this field and they promise great things. Within the past year we have seen injections which promise diagnostic tests in multiple sclerosis.
Then, we have the method for regenerating nerve tissue, and this is important, gentlemen. If a muscle is cut or if a bone is broken, those tissues grow back, but there has been the classic formula and belief in neurology that once nerve tissue—that is, brain tissue or spinal tissue—is cut, that is it; it never regenerates and it never grows back, and leads to a permanent injury. Well, in the field of neurology, to paraphrase the song, we have come up with the idea that It Just Ain't Necessarily So. We will hear more about that later.
We think that you can with experimental research techniques make the brain and the spinal cord, once cut, regenerate and maybe even to function again. These are all of the things which have stimulated our efforts in the last few years. One of our great boosts was the Neurological Institute. The rising tide of public interest in the neurological and sensory disorders was largely responsible for the establishment of the National Institute to work on such diseases and blindness.
In the summer of 1950, under Public Law 692, this Institute was established. Now, for the first time in the history of our Federal Government, there was a concrete expression of interest on the part of Congress in these mysterious neurological ills, and now they are developing a double attack on the problem with voluntary agencies and the Federal Government through the newly created Institute. They have done a good job—a coordinated job—and the interest of the public has been stimulated in direct ratio to the increased development of the program of the National Institute of Neurological Díseases and Blindness. But all this is not nearly adequate to solve the problems posed by 20 million sufferers.
At this point I would like to take a moment to talk about the Clinical Center at Bethesda. In the new Clinical Center at Bethesda, the Institute's research program is geared to finding improved methods of diagnosis, prevention, and treatment and rehabilitation of neurological and sensory disorders, with special reference to epilepsy, cerebral palsy, multiple sclerosis, muscular dystrophy, glaucoma, cataract, and so on. The potential facilities of the Bethesda program provide a unique opportunity for the first telling attack on these crippling disorders.
To unravel fully the basic mechanisms of the nervous system and its wide ramifications throughout the body-extending from its apex, the brain, to all organs of the body and their important sensory endings, will require cross fertilization of newer techniques developed from many disciplines in all the clinical and basic sciences. And it is this type of unique cross-fertilization that the Clinical Center facilities were designed to give.
This cross-fertilization of clinical and laboratory disciplines within the Institute and among all the National Institutes of Health will make possible the first complete frontal attack in history against neurological and sensory disorders. Such a comprehensive attack, we are convinced, will eventuate in yes-and-no answers to the problem of the crippling disorders which it is our responsibility to resolve. But the practical consequences in research to be achieved in the work in the Bethesda program are not its only contribution. In fact, it might well be that its greatest contribution will reside in the stimulus and special facilities it offers to visiting scientists from all parts of the country, who may come to Bethesda, participate in the program, and then return home with fresh concepts and technical formulations for their own special projects.
At this point I am going to interrupt myself to see if I can anticipate a question, and I think it is a good question, and that is, Why cannot the voluntary health agencies and the States take over the entire job of providing funds for research? Well, I have been the medical consultant to a voluntary health agency for 4 years, and at its inception you had a choice between collecting money to educate the public about the disease or collecting money to turn over to research. We chose the latter. We spent in the last 4 years $500,000 on some thirtyodd research projects, but that does not begin to cover the need. We had requests for $3 million-six times the amount which we spentfor research, and we could not collect those funds. You go to a man and say, "I represent the Multiple Sclerosis Society. What about a donation ?" He would say, "What is multiple sclerosis?” And the same might be said of muscular dystrophy or myasthenia gravis. Even the late Senator Tobey, whose daughter had multiple sclerosis, was not able to pronounce the name. He said, “Multiple cirrhosis.”
That is the problem we are up against. We have even got funny names for these diseases; and when you mention to someone such terms as "myasthenia," some people will say that is a "dirty word."
What about the situation in medical schools? A year ago I had a meeting in Albany with the commissioner of health and his staff, and we said, “Look, the voluntary health agencies cannot begin to cover the problem, the Federal Government cannot begin to cover the problem, and what can we get from the States?” He said the State hospitals were bulging out at the seams and there was not enough money to take care of patients who are already patients of the State; that they could not get increased appropriations for the patients and that they had patients sleeping in corridors and that they could not start a research program because it was hopeless.
The same thing happened when I had a conference with the deans of eight medical schools in New York to try to get them to introduce new research programs at their universities. They have the same problem. The medical schools are broke; they do not have the monetary source or the staff to make up the deficiency.
We are in a war atmosphere and in a war economy, and that takes the major part of our money, and the medical schools just cannot operate in new fields. They are doing well to survive with the job they have.
The same thing is true with training grants. Of the Nation's 79 medical schools, only 21 have complete neurology units for the training in research of neurological diseases, and there are only 151 available positions in the whole United States for the training of neurologists. There are today about 250 qualified neurologists in the entire country to support a burden of 20 million patients.
In some areas of this country there is 1 neurologist to 650,000 population. The neurology teachers in many of our medical schools are not qualified neurologists. Several States in the United States do not have a single qualified neurologist in the State, and there are 7 such States. What this means in terms of the sufferers can be judged when we realize that of the 1.5 million epileptics in this country 1 million are not receiving the treatment for their disorder, where treatment can be successful in a majority of the cases. This is because of the lack of neurologists or of physicians interested in the diagnosis of neurological diseases.
It now takes an average of 6 years before a sufferer of multiple sclerosis is diagnosed as such and almost as long before cerebral palsy can be identified.
There is no field of medicine where any diagnosis is more important because once the central nervous system is really damaged that damage is irrevocable.
The funds needed for the training of teachers in neurological and sensory disorders in the medical schools throughout the country can be determined by the requests for aid from the schools themselves, and the average need based on a recent survey amounts to more than $2.5 million.
Well, there is the problem. I have tried to spell out the story of neurological and sensory diseases as they apply to the citizens of this country. I have spoken too much, but there is a lot I have left unsaid. Gentlemen, I am 58 years old and in 1927 I had tuberculosis. In 1950 I had my first attack
of coronary disease and I also have osteoarthritis of my spine and my fingers, but I am working and I am in here punching, but, if I had epilepsy, I probably would not be here—I probably would not even have a job; if I had multiple sclerosis or chronic encephalitis or the shaking palsy, I would not be here; if I were totally deaf, I would not be here; if I had paralysis or hemiplegia or paraplegia, I might be here, but I would have to be here in a wheelchair with someone to push me; if I were blind, I might be here with someone to lead me. The epileptic, the multiple sclerotic, and the cerebralpalsy sufferer are loath to marry and raise families. They cannot travel; they cannot go to the movies or the theater; they are denied all the more pleasant aspects of living with others. The deaf cannot hear the voices of their loved ones and the blind cannot see the joys of the world or the faces of their friends and families. The economic loss to the country in these diseases is appalling.
When one considers the money that is spent in attempting to alleviate the symptoms of many of these diseases for which there is no one cause, the loss of wages of those so afflicted and those who have to care for them; when one considers the tremendous loss to the manpower pool and even for defense purposes, the result is incalculable. Many, many of these sufferers are public charges, represented only by deductions on the income tax.
Gentlemen, I am grateful for this opportunity. Thank you.
The CHAIRMAN. Are there any questions?
Mr. DOLLIVER. Doctor, I understand that these various diseases which you have named, and many others like them, have in common the effect upon the central nervous system.
Dr. TRAEGER. Yes, sir; all of these diseases are characterized by their cause-and-effect relationship to a disease, either in the brain or the spinal cord or its appendages.
Mr. ÞOLLIVER. Are they generally thought of as degenerative diseases of those parts of the body?
Dr. TRAEGER. There are many of them which are considered degenerative diseases. We do not even know whether some are degenerative diseases or not. By that I mean it is quite possible to autopsy or examine the brain of people dying from many of these diseases, and these brains under the microscope look like a normal brain—the epileptic brain, that is, the epilepsy which is not caused by injury or by a blow on the head, but the so-called essential epilepsy and the kind that comes on for no apparent reason-such a brain looks the same as a normal brain.
In Parkinson's disease a brain does not show anything unless it is due to hardening of the arteries or to arteriosclerosis or to infection.
In multiple sclerosis we do have a very definite type of microscopic pathology. We can see small areas scattered indiscriminately throughout the brain and spinal cord of hard stony plaques which represent areas where nerves have been destroyed, and wherever those nerves go, that function is gone.
Might I interrupt, Mr. Chairman, to introduce two new witnesses who have just come in. One is Dr. Harry Sands. Would you rise and identify yourself?
Dr. SANDS. I am Dr. Harry Sands and I am executive director of the Epilepsy Association of New York, and also representing the National Epilepsy League. I have been director of the committee for public understanding of epilepsy and formerly on the faculty of New York University and Brooklyn College in New York. I am a psychologist, primarily interested in public education and in the improvement aspect of neurological disorders.
Dr. TRAEGER. Dr. Kety, would you rise and identify yourself?
Dr. Kety. I am Dr. Seymour Kety, associate director in charge of research for the National Institute for Mental Health and the National Institute for Neurological Diseases and Blindness. I am also professor of physiology at the University of Pennsylvania. My primary responsibility in the National Institute of Neurological Diseases and Blindness is director of the program for basic research in the nervous system. I am a physician and primarily a physiologist.
The CHAIRMAN. Could we have chairs for the gentlemen who have just risen and introduced themselves? The clerk will put chairs there for them so they can be seated with the other members of the panel.
Mr. Dolliver, you may proceed.
Mr. DOLLIVER. Now, from what you have said, I take it that diagnosis of these diseases is extremely difficult because they have similar manifestations to others?
Dr. TRAEGER. Dr. Bailey would like to answer that.
Dr. BAILEY. I do not think these diseases are difficult to diagnoseespecially difficult-for trained individuals, but the big problem is we do not have the trained individuals to make the diagnoses, as Dr. Traeger has brought out, and the training facilities in this field are very inadequate at the present time.
I might also emphasize that I do not think there is any category of disease where an early diagnosis is more important, as Dr. Traeger mentioned, once the nervous system is permanently damaged, it remains so. So, unless you make the diagnosis in a certain disease before this permanent damage arises in order to treat it, you may be dealing with a situation which is beyond your control and against the interest of the patient.
Mr. DOLLIVER. Are any of these diseases caused by organisms or germs?
Dr. BAILEY. Yes. The nervous system is very complex, but it is also very vulnerable to all types of diseases. You can have infection, you can have vascular disturbances, you can have accidents and injuries, you can have toxic diseases, poisons, industrial poisons, and so forth, all affecting the nervous system. In addition, you have those diseases which the societies here represent in which we do not know just what the causes are. We have ideas and we are developing new ways to attack them but we do not have the final answers. For the big population of permanently or semipermanently crippled individuals we have no specific treatment for at this time.
Inasmuch as they attack in an age group which is young, the crippled individual is cared for by the community or the family, and also by the tragic self-help that he can give himself in many instances.
Mr. DOLLIVER. The cases which are in this category which are caused by the invasion of germs, I assume, to a certain extent can be controlled if you find out what the germ
is? Dr. BAILEY. Yes, particularly if the germ is bacteria. It can be fought with penicillin. Neurosyphilis once was a very common scourge. Now it is rare.
Mr. DOLLIVER. Is there any evidence to indicate this category of diseases that you do not know the cause of are hereditary?
Dr. BAILEY. Not in very many cases. There are some considered congenital, which is not hereditary-some influence on the growing fetus. The hereditary element is not too strong even in epilepsy, which is very often considered as a hereditary disease.
Mr. DOLLIVER. Is it true that sometimes these diseases are caused by injuries of birth?
Dr. BAILEY. Yes; that is quite frequent.
Dr. BAILEY. Yes. That is quite frequent. That is what I meant by the congenital as distinguished from hereditary when the actual gene is involved; the hereditary stream.
Mr. DOLLIVER. You make a distinction between the hereditary stream and the prenatal influence and the birth injury, I take it? Dr. BAILEY. Yes, I do.
Mr. DOLLIVER. How far has the research gone? Perhaps it will come up later. How far has research gone with respect to what Dr. Traeger has referred to; namely, the reconstitution of damaged nerve and brain tissue?
Dr. KETY. If you were to have asked that question 5 or 6 years ago, I think the answer would have been a fairly hopeless one of complete ignorance. We all know that in the very common injuries of the