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Dr. TRAEGER. That is right; yes, sir. In 10 years usually the disease is so progressive that the diagnosis can be made. It is made within a period of years.
Mr. HELLER. The symptoms would appear maybe a year or 2 or even 10 years later?
Ďr. TRAEGER. That is right.
Mr. HELLER. And there are cases where you can have paralysis as a result
of a concussion or a brain injury 20 years after the injury?
Mr. HELLER. How is science able to do anything about it? I just cannot understand it. If it takes such a long period of time to make the proper diagnosis, you really are up against it. You cannot do it with X-rays; is that correct !
Dr. TRAEGER. You cannot do it by X-rays.
Dr. TRAEGER. One of the problems we are faced with in this situation is to find a blood test, like the Wassermann test in syphilis, for example, to apply to these patients who have these bizarre symptoms which are not related to multiple sclerosis. That would be a blood test or a spinal fluid test or some such test to make the diagnosis.
Mr. HELLER. A blood test or a spinal fluid test, as I understand it, has not proven conclusive, has it?
Dr. TRAEGER. Up to now, no, but that does not mean that they will not be.
Mr. HELLER. In other words, you feel you ought to continue with these experiments ?
Dr. TRAEGER. By all means.
Mr. OWEN. The finding of a diagnosis that can be applied with certainty is one of our very great problems to which we are directing such research as we can.
Mr. HELLER. Mr. Owen, you also mentioned that the hospitals do not take these cases.
Mr. Owen. Yes.
Mr. Owen. That is right. Most hospitals will not take them because they are just there, you see.
Mr. HELLER. Well, from what I have been able to get from the testimony when they have this kind of a condition the doctors usually say, “All you need is a rest." I may be wrong. Some doctors I note are nodding their heads. I understand that is the way they tell us they can be cured.
If this is so why not get convalescent homes or some kind of homes for these patients with these diseases, instead of trying to put them into hospitals?
Mr. OWEN. They would if there were adequate convalescent homes. Of course, most of those convalescent homes are way beyond the means of the average patient.
Mr. HELLER. Practically, that would be the way to take care of them.
Mr. OWEN. It would. What they really need is nurse care, to be fed and lifted out of bed and have everything done for them.
Mr. HELLER. We cannot blame the hospitals, can we?
What I mean is that we can understand why the hospitals cannot take these cases.
Mr. Owen. Certainly.
Mr. OWEN. There ought to be some kind of care. This client of mine that I mentioned, who got me interested in the disease, was a very rich man. Over the years, before his daughter finally died as a result of leukemia, after all of her problems started, he spent a great deal of money. She started out as a brilliant young girl, and I know that man spent $40,000 or $50,000 in hospitals, particularly in sanitariums.
Mr. HELLER. You would go along, then, with the Government perhaps having some kind of a plan whereby it would aid the various municipalities to build these homes and give them subsidies to help them keep abreast of this? Mr. Owen. I would, certainly.
The CHAIRMAN. I might say, Mr. Owen, as a Republican, I believe your type of republicanism is expressed in your answers here today.
Mr. OWEN. Thank you. That makes it unanimous, Mr. Chairman.
Mr. KLEIN. Mr. Owen, I might say as a Democrat that I agree with your kind of republicanism, too.
Mr. HELLER. I should like to subscribe to it, also.
Mr. Klein. You are very fortunate, sir, that you are not a doctor, because I believe that the organization which is doing most to prevent the Government from helping in the fight on diseases such as this, and in fact all illnesses, is the American Medical Association. I agree with you that where a person cannot afford medical care that somebody ought to give it to him, and I guess the Government is the logical organization to do it. But the American Medical Association has been the organization consistently that has opposed any help that the Congress or the Government could give to the medical profession. They say it is opening the door, to socialized medicine.
I agree with you. What is the difference what you call it? If we can give our people in this country better medical care than they can afford, and, of course, it should be done through the doctors, then it is our duty to do it. But I have said many times, and I hope some of these doctors will agree with me. I realize they are on a spot.
Dr. TRAEGER. I agree.
Mr. KLEIN. These doctors are afraid to speak their own minds, and the American Medical Association does not speak for the average doctor. I have talked to many of them. Unfortunately, they cannot speak up for themselves.
Mr. OWEN. Mr. Klein, are you a lawyer?
Mr. KLEIN. I am, sir. I am one of your competitors in New York City, too.
Mr. OWEN. No wonder it is hard for me to make a living.
You and I, of course, would object very strenuously if the Government started out to subsidize a lawyer for every case that came along. Whether rich, poor, or otherwise we would fight that. That might be the position of the doctors.
Mr. KLEIN. I agree with you, sir, but this is another problem. This involves the health and the well-being of our people. These gentlemen on this committee will bear me out. We have tried many, many times to help the medical schools of this country. We need more medical schools. The doctors themselves say we do. But when the Government wants to help them, many of them say, "We do not want the Government to come in, because they will tell us what subjects to teach." I think that is ridiculous.
Dr. TRAEGER. That is nonsense.
The CHAIRMAN. I would like you to realize that after we have concluded our hearings on these different diseases which incapacitate so many of our population it is our intention then, starting probably the 15th or the 16th of this month, to direct our attention to the different programs which have been offered by way of assistance to individuals. That would include a study of the so-called Blue Cross, the Blue Shield, the Gray Cross, and whatever ther kind there may be; and it will include what is being done by labor organizations to provide group insurance for their workers, ana also what is being done in the way of group insurance in California under the Kaiser plan, and a plan that is being conducted and is the subject of some controversy in New York at this
time, which I understand was originated or instituted in the first instance by Mr. LaGuardia, but which certainly is carried on now by the city of New York.
It is our intention to go into that phase of the question as well as this. So we hope to cover it in such a way that when we do make a report it may take into consideration all of these different elements which must be considered.
Mr. Owen. I want to say my thanks, Mr. Chairman, to you and the committee. I think this is the most heartening hearing I have attended in a great many years. The interest you gentlemen have in the diseases and in every aspect of the problem is very heartening to all of us.
The CHAIRMAN. I will say for the committee that Mr. Owen has submitted here a considerable number of documents which deal in great detail with the multiple-sclerosis disease, and it is my intention, Mr. Owen, if these are available to the committee, to have our staff go through them and select those which would seem to be appropriate both from the standpoint of size and otherwise to be made a part of our hearings.
Mr. OWEN. Yes. Thank you.
(The information follows:) ANNUAL REPORT, JANUARY 1, 1952, to DECEMBER 31, 1952, NATIONAL MULTIPLE
SCLEROSIS SOCIETY, NEW YORK 17, N. Y.
Due to the relative youth of the society and the distressing lack of broad public knowledge of its birth, growth, and functions, it is fitting briefly to review its inception and progress, and thus emphasize the urgent need and warrant for broadened activities and substantially increased financial support.
Uniquely, the society was initially conceived by sufferers from multiple sclerosis, their families, relatives, and friends. Multiple sclerosis was a destructive disease respecting which there was no widespread knowledge. The organizers first sought to help themselves and their own. The accomplishments of the society now warrant a wide appeal for continuing and broadening its efforts.
The society was organized in 1946 as a result of a newspaper advertisement by a member of a family in which there existed multiple sclerosis. This advertisement requested all those interested in the disease to communicate with its author. As a result, $7,500 was raised, and an office was opened in a single room in the Academy of Medicine Building, New York City.
The stated purposes of the society as contained in its articles of incorporation under the laws of the State of New York, are
"To stimulate, coordinate, and support research into, and to obtain and disseminate information respecting the cause, prevention, alleviation, and cure of multiple sclerosis and other diseases of the nervous system;
"To aid individuals who are in any way disabled as a result of multiple sclerosis or other diseases of the nervous system;
"And to make grants of money from the funds of the corporation, at any time and from time to time, to individuals and to lawfully established agencies for the purpose of carrying out the foregoing objectives and for the prevention, diagnosis, treatment, alleviation, or cure of multiple sclerosis
or other diseases of the nervous system.” While the society has accomplished a great deal in education, multiple sclerosis, or MS as it is now often referred to, is still a relatively new term in many vocabularies. But the disease itself is not new. The earliest case that is now clearly identified was that of Count Augustus D'Este, a cousin of Queen Victoria, who contracted the disease in 1822. He made a careful record of his symptoms: double vision, difficulty in balancing, numbness in parts of the body, extreme weakness, and bladder trouble-only a few of the symptoms and attendant problems that many patients face.
Apparently, multiple sclerosis is widespread, may strike without warning, in all walks of life, and tragically, most often between the ages of 20 and 40, when persons are in their most productive period of life. Amazingly, therefore, for over 130 years since the first identifiable case, and until the organization of the society, little, if anything, was known of the cause of MS or its possible cure. The organization of the society coincides with the first concerted attack on the problems presented by the disease. Progress has been extremely slow, but it is the unanimous conclusion of the society and its medical board that the results of research today warrant, and indeed demand, not only the continuation of projects underway, but an expanded program of research and broadened efforts for the relief of sufferers, through additional chapters of the society, clinics, education, and rehabilitation.
In the attached statement of the society, dated December 31, 1952, there emerges a convincing and stimulating story of an organization conceived and expanded through the efforts of patients themselves, their families, relatives, and friends. The appeal of the society is uniquely one from those who have first helped themselves, and with results which warrant and demand an appeal for greater assistance from the public generally.
From a modest beginning, the society has grown in a little over 6 years to a membership of approximately 23,000. To date, it has raised $1,093,539 of which $248,032 was raised in 1952. It has spent in research grants $448,531.80. According to a reliable survey by an independent agency, the society ranks very high, if not highest, in the percentage of expenditures for research as related to all expenditures. And it is very proud to state that it has a very low percentage of expenditures for administration as related to the aggregate of expenditures. As estimated for the year 1952, 45 percent of the aggregate of expenditures was for research; 18 percent for lay and professional education ; 18 percent for medical and patient service; 10 percent for administration; and 9 percent for organization and development of chapters.
The society is deeply indebted to the following for their voluntary services : Charles Offset Co., printing of literature and posters; Willkie, Owen, Farr, Gallagher and Walton, legal services; Pandick Press, Inc., publication of membership bulletins; Melnick Bindery, binding of publications. It is in great measure due to their generosity that the society is able to devote so large a proportion of its funds to research,
Thus far, the society has supported 27 research projects and 8 research and treatment clinics. Operation of those not completed should be continued and additional projects and clinics initiated and supported.
The society's research program is formulated and coordinated by a medical advisory board of 50 outstanding physicians and rsearch investigators in the field of multiple sclerosis and related nerve diseases. It meets semiannually. In June 1952, for the first time, science writers were invited to attend the scientific session. T resulted in greatly increased information to the public concerning the research progress achieved under our grants.
Our medical director has organized a panel of 56 international corresponding neurologists from 26 foreign countries for the purpose of exchanging information.
A study group has been established of doctors and scientists, which in addition to neurologists, includes nutrition experts, biochemists, and the like and functions for the purpose of exploring possible channels of approach to the cause and cure of the disease.
In 1932 a series of four manuals on a home care program of rehabilitation was published and widely distributed to patients through their physicians..
There are now 21 chapters of the society and of these, six were organized in 1952. We are confident that more chapters will be of inestimable benefit, and that their organization is dependent only one adequate field personnel which we hare heretofore not been financially able to engage. The projected program for 1953 contemplates increased effort in field organization, which we are confident can be successful and will result in great aid in accomplishing the purposes of the society.
There is attached hereto a balance sheet of the society as of December 31, 1952, and a statement of income, expenses, and grants of the society or the year ending December 31, 1952. These are certified to by Ernst & Ernst, accountants and auditors, 120 Broadway, New York, N. Y.
There is also attached hereto a statement, dated December 31, 1952, prepared by the society, concerning its accomplishments and its projected program. It is urgently requested that all interested in the society inform themselves of the illuminating facts in that statement-particularly those sections (pages 13 and 14) relating to past financial support and the financial support for 1953, which latter outlines a program for nationwide public appeal for financial assistance.
In recent years, science has found the answer to the prevention and control of diseases which, for centuries, have afflicted mankind. There is substantial ground for believing that multiple sclerosis may someday become one of such diseases. We look forward with confidence to the results that may be attained through the continuation and expansion of the work of the society.
And may I call attention to the attached forms which may be used in bequests and contributions.
WILLIAM C. BREED, Jr.,
Vice President. Dated, December 31, 1952.
A STATEMENT FROM NATIONAL MULTIPLE SCLEROSIS SOCIETY, NEW YORK, “AARMS
CONCERNING THE PROBLEM OF MULTIPLE SCLEROSIS ACCOMPLISHMENTS AND PROGRAM FOR THE FUTURE
Dated, December 31, 1952 The National Multiple Sclerosis Society was organized in 1946 by a group of patients, people interested in patients, prominent laymen, and outstanding members of the medical profession. All had a common bond of interest-multiple sclerosis. With different approaches, they conceived the society as a joint means of dedicating themselves to a common end-a program embodying research, clinics, education, and rehabilitation to aid and serve the thousands afflicted by this devastating disease. The nature of multiple sclerosis-M8
Multiple sclerosis is a chronic nerve disease which affects the central nervous system by destroying areas of the myelin sheath which normally covers and protects the nerves. This destructive process, known as demyelination, interferes with the normal passage of nerve impulses through the body. At present there is no known way of replacing the destroyed myelin sheath. Victims of MS cannot function normally. Their symptoms vary with the degree and location of myelin destruction. Some of the more common symptoms are: double vision and other forms of impaired vision; staggering gait; weakness; numbness; tremors; bladder and bowel trouble; and emotional difficulties.