Page images
PDF
EPUB

families of many people of prominence, we know of no great public figure who could rally the public around our cause, as President Franklin D. Roosevelt did for polio. Yet the scope of our problem was tremendous and called for a broad program of research and an intensive program of relief and aid for multiplesclerosis patients.

In August 1950, the National Institute for Neurological Diseases and Blindness came into being, offering the first real governmentally supported program of research in the neurological field. The expenditures of public funds by a Government institute for a public-health problem is invaluable to an organization like ours which is overwhelmed with monumental problems and limited funds to cope with them. The work of the institute is especially indispensable to the National Multiple Sclerosis Society which still has not obtained the public support it needs and deserves. The work of the institute supplements our work and is no substitute for it. Notwithstanding the work of the institute in the research field, the need is so great that our efforts to raise funds for research have not diminished but rather redoubled each year. This is a job which needs the combined efforts of both the Government and private sources.

Since our inception about 7 years ago, through September 30, 1953, the National Society (exclusive of funds retained by its 30 chapters) has raised the sum of $1,339,115 and has spent $1,227,304 (see exhibit A on figures of funds raised and expenditures).

Our major emphasis has been on research, even at the expense of other aspects of our program such as the promotion of treatment clinics and patient care, As shown by exhibit A, the national society has spent $488,531, or 49 percent of its total expenditures, on research-a high percentage as compared with other voluntary health organizations. The society has supported 31 research projects at leading medical centers of the country. These projects include 5 research clinics related to basic research projects; in addition, 3 treatment and service clinics have been established by our chapters. At these clinics diagnostic services, treatments to ameliorate symptoms, and physical therapy are made available to patients in those areas, and important information is collected as to the characteristics of the disease and the effect, if any, of types of treatment, These clinics are pitifully inadequate to service the large number of multiple sclerosis patients in the country and as reliable sources of knowledge about the malady, but they represent an encouraging innovation in the once hopeless picture and a good beginning.

As shown by the exhibit, $141,262 has been spent on lay and professional education, an important function of the society designed to educate the medical profession and counteract public apathy, neglect, and lack of understanding of the disease. Lay education includes the publication of a periodic bulletin, Arms Forward, which keeps members informed on developments in the field and serves as a morale booster as well.

The sum of $53,519 has been expended on a service program designed to bring aid to multiple sclerosis patients now and to be of service to the medical profession. This includes the publication of home-care manuals to guide patients in a home-care program of physical therapy. It also includes the distribution of periodic medical manuals to the medical and nursing professions to keep them in touch with current medical and research developments. These manuals are distributed free of charge to patients, physicians, medical schools, teaching institutions, and libraries.

Another important task of the National Multiple Sclerosis Society is to investigate so-called cures, and inform patients of our findings so that they do not fall prey to ill-founded claims of cures.

As shown by exhibit A, in 7 years the sum of $108,942 has been expended on general administration costs of the national society. (See exhibit B for executive salaries.)

Our chairman, a distinguished scientist, and our president and vice presidents, and the members of our executive committee give a great deal of time to the society's work on a purely voluntary basis. Our salaried executive staff consists of an executive secretary, a field director, a medical director, and a publicrelations director. We are understaffed. A consultant medical director receives a meager compensation, on a per diem fee basis. All the rest of the office work consists of clerical help.

The society has become the clearinghouse for information on multiple sclerosis not only nationally but internationally as well. Correspondence with doctors, institutions, and grantees of funds is very heavy. We have recently organized 39087-53-pt. 4-6

the panel of international corresponding neurologists which disseminates information on the disease to research investigators from 34 countries. Every week, we receive an average of about 400 letters from patients and physicians asking pertinent questions on multiple sclerosis, the status of certain forms of treatments, etc. Many of these inquiries pose questions which must be answered individually. This kind of service is part of the treatment of multiple sclerosis. This kind of service is a morale booster to patients who now know that something is being done in an organized way to cope with their problems. Functioning as a clearinghouse on information and service for multiple sclerosis requires staff.

Our medical department organizes a semiannual meeting of our medical advisory board. Serving on that board, and traveling from all parts of the country at no expense to the society, are 48 distinguished neurologists and other scientists, representing many of the leading medical schools and hospitals in the country. At these meetings, applications for grants-in-aid are considered and voted upon. Progress reports from grantees are heard and viewed in considering the continuation of previously supported research. The medical director screens and reorganizes research applications where indicated, in advance of consideration of the medical advisory board.

In order to give consideration to research trends, a research orientation group was organized. This group is composed of several of this country's most outstanding scientists who meet at frequent intervals and examine the various theories as to the possible cause and control of this disease.

In order to advance scientific interest in our problem, several medical conferences on multiple sclerosis were stimulated, with the cooperation of other scientific organizations. They were: Symposium on multiple sclerosis of the Association for Research in Nervous and Mental Diseases, in New York City, in 1948; and conference on the status of multiple sclerosis, sponsored by the New York Academy of Sciences, at the Barbizon Plaza in New York City, in April 1953.

We now have 30 chapters and are organizing more. We should have a hundred. They are seldom organized spontaneously. They perform a very im portant public function by raising funds for research projects in local institutions, by establishing and supporting local clinics, and by providing aid to local invalids. Each has a local medical advisory board. They arouse and maintain local interest in the problem. The creation, servicing, and supervision of these chapters required a substantial amount of well justified administration expense.

The Damon Runyon Memorial Fund for Cancer Research boasts that it does not spend a cent on administration but allocates all funds to research. It neglects to say, however, that the American Cancer Society does the vast amount of unavoidable administrative work necessary to service cancer patients' and carry on its great national program, thus relieving the Damon Runyon Memorial Fund of administrative responsibility.

Multiple sclerosis is a complicated disease requiring an intensified and longterm program of research. The reason for this is that there are many theories on the cause and cure for multiple sclerosis, all of which must be explored before we can concentrate on one field of investigation. Such projects cover theories that multiple sclerosis may be due to a virus, allergy, infection, metabolic disturbance, blood clots, circulatory maladjustment, and other causes. With the strengthening of our research program, our knowledge of the disease has increased immeasurably. For example, we have learned that the blood and urine of multiple-sclerosis patients differ widely from normal. We have learned that the metabolic process of patients is not what it should be. One of our grantees has reported on the abnormal quantity of cyanide found in multiplesclerosis patients, an observation which is being further studied. In multiple sclerosis, the disease process occurs when the myelin which surrounds the nerves is destroyed in patches somewhat like the wearing away of the insulation which covers electric wires, thereby causing a short circuit. Several of our research projects are devoted to the problem of what happens in this demyelination-what causes the myelin to break down and how it breaks down. What causes remissions, the mysterious phenomenon which occurs in this up-anddown disease in which the patient suddenly but temporarily improves for no known reason? If we can learn what causes remissions, we may be able to learn how to make remissions more lasting and how to control the disease. We do not know from what source or sources the answer to multiple sclerosis

will come. We do know that in our present stage of knowledge, we have to explore all worthwhile theories of responsible investigators, no matter how divergent.

In the past, many research investigators were hesitant about centering their work on neurology-the stepchild of medicine. Where would they get their financial support? Where was the public interest that would lead to such support? It is true that neurology represents a field affecting about 13 million people but research investigators need economic security to work effectively. I can proudly state that the National Multiple Sclerosis Society has stimulated a new scientific and optimistic interest in neurological disease. Yet, there is still a shortage of skilled investigators to go on with this important work. That is why in the coming year, we have appropriated funds for a fellowship program to interest young men at the graduate level to center their work on research into multiple sclerosis and related neurological diseases. We are confident that this will pay big dividends in the long run.

The problem of multiple sclerosis and related neurological diseases is a staggering one which requires the concerted efforts of the National Multiple Sclerosis Society, the Government, and the general public. Only with that kind of teamwork can the solution to multiple sclerosis and related neurological diseases be found in our day so that those afflicted may be aided.

When the magnitude of the problem is understood, we believe that it will be realized that all the efforts of our society and of kindred bodies, as earnest and vigorous as they may be, must be supplemented by very substantial governmental outlay.

EXHIBIT A. Funds raised and expended by National Multiple Sclerosis Society since inception

[blocks in formation]

3 Exclusive of approximately $109,559 expended by the society's chapters on 3 treatment clinics.

In addition to what was remitted to national society, approximately $529,906 has been raised by chapters. 2 Breakdown not yet available.

[blocks in formation]

EXHIBIT B.-Executive salaries, National Multiple Sclerosis Society, since inception

[blocks in formation]

Mr. OWEN. I am going to try to act both as a doctor and a layman in this presentation.

First, what is multiple sclerosis? It is frequently known as disseminated sclerosis. It is a disease of the brain and spinal cord in which the fatty sheath of the nerve cell is destroyed and in consequence the nerve cell ultimately is displaced by a scar cell, resulting in a total lack of function of that part of the nerve system, and resulting quite frequently in thereby preventing the passage of nerve impulses from that nerve to the eye or the muscle, or whatever part of the body is affected.

It is a disease that starts in a small way and is progressive. It is a disease marked by what is known as remissions. Sometimes a person appears to get over it for a day, weeks, or for years, but normally it is progressive and starts with very minor symptoms and goes on until we have a bedridden patient unable to tend to himself or herself and completely dependent upon the care of family or nurses.

The initial symptoms are double vision, staggering, or inability to keep one's balance, numbness of the parts of the body, general tingling of the fingers, tremors, stuttering speech, involuntary movements of the eyeball, extreme weakness, emotional disturbances, and bladder troubles, but finally ending up, I say, with paralysis of one or both legs, or one or both arms, and the patient being completely bedridden and unable to take care of himself, a situation which becomes very tragic to the family.

Nothing whatsoever is known about the cause of this disease, and there is no known cure of any kind. There is no effective treatment of any kind for the alleviation of the symptoms. Some work is being done in physical therapy, and from time to time various drugs are utilized, but the result is uniformly ineffective.

Until our society was formed in 1946, there was relatively little known about the disease publicly, and we were the first organization that spearheaded a knowledge of this disease. We have grown to the point where we have 31 chapters. We ought to have 100. We have spent money on about 31 research projects. I am proud to say that out of all the money we have raised practically 49 percent has been spent on research. Our record as to the amount of money spent on administration is extremely creditable to us. You will find those figures in our report.

One of the bad things about this disease is the failure of physicians to make a correct diagnosis. Correct diagnosis is missed by the ordinary physician in a great many cases. A very prominent scientist connected with our organization had as a member of his family an outstanding scientist. He did not recognize until our society was organized and we had some articles appearing in a magazine that one of the members of his family had the disease for 6 years. I have asked my nose doctor about it and he says that very frequently he has been confronted with cases where eye doctors have sent him patients thinking that maybe the trouble was local infection in the sinuses, and it turned out that the man had multiple sclerosis. That is a common experience, so that one of our problems is to educate the physicians as best we can so that they can diagnose the disease.

In that connection, and as a part of our educational work, I want to hold up some of the pamphlets that we have prepared and dis

« PreviousContinue »