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increasing amounts. Some 2 million diabetics are ever with us, living longer because of the various insulins and new diabetic treatments--and living to face inevitable blindness. There are hundreds of thousands of people facing various hereditary eye diseases; not one of which has been solved as yet. The thousands of premature infants saved by new scientific techniques have only served to add to the number of the blind. This problem of the infant blinded by the disease of prematurity (retrolental fibroplasia) seems now to be on the verge of solution as a result of a great concerted research program conducted in unity by many of our outstanding eye departments with money supplied by the Government, by some of the private agencies represented here today and by wealtlıy members of afflicted families. If the solution to this horrible disease is finally solved it will te only because of research; expensive research. Yet the prevention of further blindness by this disease will do nothing to ameliorate the condition of those already blinded by it, and now in need of rehabilitation for the rest of their lives.
I could go on in this vein at great length. That, however, is needless. The problem of blindness is a great one. It threatens all of us and all of our homes. It is not a dramatic problem-there is nothing dramatic in being blind. One's sufferings are not visible to the general public. It simply removes thousands of people from the normal course of life, from the production lines; and places an uncounted emotional and financial burden upon their families and local and national governments. Every dollar spent to prevent eye disease and blindness via eye research and the training of the necessary personnel means the potential saving of thousands of dollars of public funds. The $25,000 of Government funds which my own school (Cornell) spent on its research into the treatment of inflammatory eye diseases has already, in less than 4 years, saved hundreds of eyes from blindness. Has that been a worthwhile project for this Government?
Mr. WALKER. We have some pamphlets that we would like to hand to the clerk to supplement Miss Gruber's testimony, and if you see fit to use them in the printed record, that will be fine. We would like to have each Congressman on the committee have copies of them. We have them here for the clerk.
The CHAIRMAN. We will be glad to have them. I will have the staff examine them, and if it is possible, they will be made a part of the record.
Mr. Schloss. We have a resolution that was adopted by the Blinded Veterans Association at its last convention in Philadelphia, and it expresses the view of the members of the Blinded Veterans Association with respect to the need for more adequate research, and encourages greater financial aid for such research. I would appreciate it if we were permitted to insert it in the record.
(The material referred to follows:)
RESOLUTION ON RESEARCH INTO THE BLINDING EYE DISEASES, BLINDED VETERANS
ASSOCIATION, EIGHTH ANNUAL CONVENTION Whereas very little consideration has heretofore been given to finding the causes and cures and to preventing blindness through research; and
Whereas medical authorities advise that the causes and cures of many blinding eye diseases are unknown; and
Whereas this matter was called to the attention of the Congress of the United States, which responded by enactment of Public Law 692 (81st Cong.) creating The National Institute of Neurological Diseases and Blindness under the United States Public Health Service; and
Whereas support in part is now being given by the Government to research in the field of neurological diseases; and
Whereas it is important that there be a general program of education in order that the public may be advised as to the need for research in the blinding eye diseases, so that financial support may be provided by individuals and organizations in addition to that provided by the Federal Government: Be it therefore
Resolved, That it is the sense of the members of the Blinded Veterans Association assembled at their eighth annual convention in the city of Philadelphia on August 22, 1953, that all proper measures be taken to the end that people may be educated to the need for support of research in this long-neglected field, and that individuals, organizations, and the Government be encouraged to give financial aid to research in the blinding eye diseases.
The CHAIRMAN. You may put anything else in the record in support of it.
Dr. BAILEY. Out of courtesy to the witnesses coming on, I would just like to make this statement, that this testimony illustrates the large scope of responsibility for a national program in research in neurological diseases and blindness and that blindness is one of the No. 1 items of our interest. We hope eventually to develop a program that will be worthwhile to the Nation, and we feel competent to do so.
We have with us Dr. Stone and Dr. Hart who could testify in regard to the program details; however, much of this material is conained within the statement made by the Institute and is already submitted.
Now, in view of the shortage of time, I would suggest that the record stand as it is. We are available for further questioning.
The CHAIRMAN. I have it in mind that you people are located here in Washington and we can call you at another time without as much inconvenience as it would be if you were a resident at some distant point. So far as additional information is concerned, we will be very glad to make that a part of the record. You have already made a very complete statement, as I understand it, which is a part of the record. and if the statements that Dr. Stone and Dr. Hart have prepared and you desire to have them made a part of the record, they will also be made a part of the record.
Dr. JOHNSON. Dr. Stone, do you and Dr. Hart concur?
Dr. Johnson. I would like to make just one closing comment, and that is, as professor of ophthalmology and as a practicing ophthalmologist-and I believe I speak for the societies that represent the blindour confidence must remain in Congress to appropriate adequate sums, and we certainly have the utmost confidence in our Institute of Neurological Diseases and Blindness to administer these funds properly. I only hope that in the future some budget base other than that judged by past experience will be used in making up the budget, because if we are to remain on a budget base of $400,000 it is impossible for us to ever achieve any progress toward the prevention of blindness.
May I make an exception to the previous budget base? I thank you for the privilege of being able to attend.
The CHAIRMAN. We are very appreciative of the leadership you have given us in this discussion, and we thank those who have been present and submitted their contributions to the committee. You have all been very helpful to us in our endeavor to do the thing that will be most helpful in the future. Unfortunately, we may not be able to do all we would like to do when it comes to appropriations, though so far as the need of them is concerned, though, no argument is necessary as far as we are concerned. We will be glad to be helpful in any way we can. We thank you very much.
Dr. FOOTE. I have some pamphlets and data that I would like to 'submit for the record. You may determine whether it should be printed.
The CHAIRMAN. Thank you.
(The following statements by J. M. Ulmer and by the National Society for Crippled Children and Adults were received by the committee for in corporation in the record:) STATEMENT OF J. M. ULMER, CLEVELAND, OH10, ON THE CAUSES AND CONTROL OF
SOME OF THE PRINCIPAL DISEASES OF MANKIND, INCLUDING NEUROLOGICAL AND SENSORY DISEASES
Mr. Chairman and members of the committee, my name is J. M. Ulmer. My address is 1130 B. F. Keith Building, Cleveland, Ohio, where I practice law. For more than 5 years, as a layman, and at my own expense (and because for nearly 2 years my vision was impaired to the point that I could not read a line) I have devoted myself to helping bring about research in the blinding eye, otological and neurological diseases field. These diseases, interrelated as they are, affect a great segment of the population and constitute an extremely serious public-health problem.
I have just completed 3 years of Public Health Service as a member of the Surgeon General's Advisory Council of the Neurological Diseases and Blindness Institute. I am secretary of the National Foundation for Eye Research, which bas for its only purpose the advancement of the cause of research in the blinding-eye-diseases field. I make this statement as an individual and not in behalf of the foundation, as I have not, because of the shortness of time, had the opportunity of clearing this presentation with the members of the board of the foundation.
Your chairman has said “The committee is keenly conscious of its legislative responsibilities in the field of health and that it is appropriate to inquire just where we are, where we are going, and what additional measures must be taken in the way of research which will hasten relief from dreadful diseases." This statement is intended to supply some of the answers to these questions. No field of human endeavor offers more in the way of possibilities for human betterment than that of medical research. All disorders of the nervous system are referable to a single organ, the brain, or its important appendages--the spinal cord, and nerves and the sensory receptors, which provide us with the power of vision and hearing. Neurological and sensory disorders constitute a major and extremely serious public health problem of the United States, affecting many millions of people, who endure gravely disabling conditions. No other group of disorders causes such permanent crippling and severe psychological, social, and economic dislocation to the individual sufferer. These diseases are the third greatest cause of death and probably the leading cause of permanent disability. No other group receives so little medical and research attention and yet no other major group of disorders represents such an economic loss to the Nation.
Exhibit 1, attached hereto, indicates in detail the numbers of our population affected by the major crippling neurological and sensory disorders.
As to the first question presented by your chairman, it is agreed that since the creation under the Public Health Service of the Neurological Diseases and Blindness Institute 3 short years ago some progress has resulted, notwithstanding the fact that only a token appropriation was made by the Congress to this institute which was available for research, as reflected by the following figures: 1951.
$342, 000 1952
1, 015, 000 1933.
965, 000 It must be apparent that the neurological and sensory diseases not only create untold suffering but are a great economic burden to the Nation in terms of loss of manpower, cost of medical care, and rehabilitation, and otherwise, and certainly in the terms of the financial load which a single case of the disease imposes on the individual sufferer or his family.
The question the committee poses is answerel by relating the facts which (out of my own personal experience and that of others likewise interested) amply demonstrate the enormity of the problem and the smallness of the appropriations from the Congress to meet the same. It is crystal clear that progress through research will find the answers unknown to science only if funds are provided to those who seek through research the causes of these diseases afflicting the brain and, through it, the nervous system, the eyes, speech, and hearing.
One more statement may give your committee a part of the answer to the question, "Where are we at?" Consider that in 1953 to meet the problem of deafness which affects over 4 million persons, including about 700,000 who are totally deaf, there was allocated through Public Health Service for otologic research the meager sum of $50,288. What else need be said?
Organizations interested in this field of diseases try to encourage public education and thus gain financial support to advance programs of research and rehabilitation in these fields. The leadership in this endeavor must come from the Public Health Service. If the Congress is informed as to these matters and supports the Public Health Service, various groups interested in the several branches of the diseases closest to them will do their utmost to help find addi. tional funds and thus supplement the moneys appropriated by the Congress to meet this situation. What each organization provides in dollars is a matter of statistics which will be furnished by others.
In 1950, under Public Law 692, the Congress created the Neurological Diseases and Blindness Institute. Since that time research in these fields has made some little progress. It is agreed, however, that there have been very little authentic advances in the neurological and sensory diseases field for the very simple reasons that research is a slow process and that funds have been lacking. Medical science having just commenced to advance the cause of research and having barely scratched the surface, has a long, long way to go. (Reference is made to statements on this subject contained in the exhibits hereto attached.) It must be clear for these reasons that very little advance can be made in ophthalmologic research when in 1953 out of the small total appropriation by the Congress for the entire institute only $350,000 was available for research in this field. And the same situation exists in the neurological diseases research sector, which had an allocation of about $700,000 in 1953 for the purpose of research. This is but token money for research in so important a field. I ask each member of this committee, "How far do you believe researchers can advance in otological diseases with an allocation such as was made in 1953 of only $50,288?" What shall we say, what can we say, to justify such a situation when we consider that only through the provision of adequate funds may we commence to educate the researchers and establish the places in which they can work and then look to progress through research in neurological and sensory diseases fields?
Support must be provided so that the Clinical Center for Research in Medicine and Public Health at Bethesda may be fully utilized in the interests of the public health of the Nation.
In the September 1953 issue of the Public Health Reports, volume 68, No. 9, at page 897, you will find a short factual description of the greatest clinical and research center ever conceived by man in the interests of public health, its plan, and its purpose. This center, research laboratories, and researchers everywhere, if adequately supported, will help solve the problems here discussed.
Others coming before your committee will answer the question of what advances in research have been made through the support of organizations represented by the witnesses who are testifying to this committee. As research goes forward, more and more public support will follow, This is the record of other research efforts in comparable diseases.
You ask, “What appear to be the major unknowns which must be discovered before the diseases can be controlled ?" and, "Are funds, facilities, and manpower available for the next stages of research?" Most of the unknowns, the causes of these diseases, which are unknown to science, can only be discovered through research before the diseases can be controlled. We must look for the cause ; the cure, and prevention then follow. The Congress should appropriate the funds for this purpose; the public will do its part and help. The men who will ultimately help find the answers through research must through proper education be given adequate support, and be fairly paid so that they will stay in the laboratories and continue in that unending search which must be made to find the unknown factors that cause the diseases afflicting the people.
Having finished my 3-year term on the advisory council of the Neurological Diseases and Blindness Institute under Public Health Service, I can truthfully say that never in my experience have I worked with a group of men and women of such high purpose, deep sincerity, and outstanding ability as the staff of the Institute. In the accumulated experience and knowledge of the personnel in the seven National Institutes of Health, from Surgeon General Scheele down there has been built a great and able force who can and will, if adequately supported, carry forward and enlarge the programs of research and rehabilitation in the diseases of mankind. The gateway to public health is through research which has been so ably advanced by the seven Public Health Service Institutes, potwithstanding the inadequate financial support that has been thus far provided.
I must stress the subject of rehabilitation, the rebuilding of the victims of illness, until recently the handicapped, the forgotten, and neglected man. Rehabilitation is “the restoration of the handicapped to the fullest physical, mental, social, vocational, and economic usefulness of which they are capable." I call your attention to the article on rehabilitation which you will find on page 55, volume 1 of America's Health Status, Needs, and Resources. I also direct your attention in your search for the answers to the questions before you, to the discussion on research which is to be found on page 234 of volume 2, of the same publication, which reads in part:
“The public is insufficiently aware of the results and economies which medical research is contributing to the welfare of the Nation.
Funds as now available from all sources are still grossly inadequate * * *."
I urge each member of this committee to examine the references here alluded to. There is no need in this short presentation to summarize the conclusions found therein, the reading of which will truly enlighten anyone who wants to know the facts.
You cannot build on a solid foundation with continuity of operation in the field of research or rehabilitation, unless it is tied in closely with the mainstream of medical education, which must be supported and expanded. Research funds should be allocated on a long-term basis, either to institutions or to individual scientists pursuing research.
Much valuable information can be furnished this committee by seeking the testimony of some of the men on the staff of the Institutes and others, who work with researchers and medical schools and are fully informed on the subject by reason of such close contact. There are in particular four men whose testimony is available to your committee and who are superbly qualified to assist you by bringing to your attention a wealth of information on this entire subject. I suggest that you call for testimony Dr. T. Duckett Jones, director of the Helen Hay Whitney Foundation of New York, Dr. Kenneth M. Endicott, Dr. Frederick L. Stone, and Ernest M. Allen, of the Public Health Service staff at Bethesda, who served on an intercouncil committee of 14 of the 7 Public Health Institutes (2 members from each Institute) and who recently made a coast to coast survey and study of researchers and medical schools in an effort to find some of the answers you seek.
One further thought: Not only must money be appropriated for the purpose of research and rehabilitation, but it must also be provided for more administrative funds to PHS so that research dollars may be wisely spent. This requires continued employment of sufficient competent and adequately paid personnel on the administrative staff of the Public Health Service.
In this statement I have taken the liberty of using language found in the reports hereto attache and other published sources of information, all of which more fully and better express the thoughts I want to leave with you.
Knowledge and more knowledge, which is research, must be acquired by longterm support of broad proposals in a manner which insures freedom of thought, inquiry, and experimentation. In the health sciences, as in all other sciences, knowledge is valuable for its own sake. To this end, substantial funds must be made available for general research in order to assure the scientist that he may feel free to pursue his own intellectual curiosity irrespective of its reference to any defined need or purpose.
The hope of all of us is that research may be advanced to prevent the scourge and the economic waste that come from these dreadful diseases which afflict so many of us. I thank you for the opportunity of testifying to your committee.