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NEUROLOGY AND BLINDNESS ACTIVITIES, PUBLIC HEALTH SERVICE
The following data extracted from Bureau of the Budget submission for fiscal year 1954, Neurology and Blindness Activities, Public Health Service:
149, 800 249, 900
Balance available for new approved projects in 1953_
2, 320, 000
Estimated backlog for 1954--
2, 219, 900
Estimated backlog for 1954.
2, 219, 900
Estimated total needs for applications in 1954.
5, 589, 900 Less estimated withdrawn projects and/or those with deferred starting dates in 1955-----
1, 089, 900
Amount requested in budget submission for fiscal 1954.
The CHAIRMAN. I looked through this rather hurriedly and it seemed to me it did not, so I want you to feel free to add that to your testimony in as complete a form as you wish.
Dr. BAILEY. Thank you, Mr. Chairman. Much of the material concerning the various neurological disorders not represented by any organizations here today is contained in brief, I know, in the statement prepared by the National Committee for Research in Neurological Disorders.
(The statement referred to follows:)
NEUROLOGICAL AND SENSORY DISORDERS (Prepared for the hearings of the House Committee on Interstate and Foreign
Commerce, October 7, 1953, by the National Committee for Research Into Neurological Disorders)
At their annual meeting in Washington, D. C., September 29, 1953, the National Committee for Research in Neurological Disorders unanimously voted to submit this prepared statement to Chairman Charles A. Wolverton of the House Committe on Interstate and Foreign Commerce. The purpose of this statement is to outline the present medical status, economic costs, research potential, and needs of the relatively neglected field of health which comprises the neurological and sensory disorders.
The National Committee for Research in Neurological Disorders was organized from national voluntary health agencies and professional groups in response to a growing demand for a national research program in the vast field of neurological and sensory disorders. Members of the national committee are: National Epilepsy League, Inc. National Multiple Sclerosis Society National Society for Crippled Children and Adults, Inc. Muscular Dystrophy Associations of American, Inc. United Cerebral Palsy Associations Committee for Public Understanding of Epilepsy American Academy of Neurology
The primary objectives of the national committee are (1) to survey the current needs in the field of neurological and sensory disorders, with special reference to medical research, training of specialized professional personnel and treatment facilities; (2) to make these needs known to the public, universities, research institutions, and Government agencies; (3) to stimulate research and training to the extent of these studied needs; and (4) to jointly attack national problems in this area of disease where the combined action of the interested societies of this committee would be more efficient than the action of any one of the societies alone.
Accordingly, the National Committee for Research in Neurological Disorders welcomes most sincerely the invitation from the chairman of the House Com. mittee on Interstate and Foreign Commerce to participate in their hearings on health matters of the Nation.
THE NATURE OF THE PROBLEM Definitions
The concept of neurological and sensory disorders as an entity and as a single major public-health problem is slowly being recognized. While most of the various types of cancer are conceived of as simply "cancer" and the various types of heart disease simply as "heart disease," the various neurological disorderswhether poliomyelitis, cerebral palsy, multiple sclerosis, epilepsy, muscular dystrophy, and many disorders of the eye and ear-seem each to constitute a separate, indivisible problem in themselves.
In fact, this is not so; as the problems of heart diseases are linked to the entire circulatory systein, so all neurological and sensory disorders are referable to the nervous system; to the brain, the spinal cord, the nerves and the sensory receptors which provide us with the powers of sight and hearing. Epilepsy and cerebral palsy, for example, simply represent a variety of symptoms occurring as a result of damage to nerve tissue in various areas of the brain. So it is also with a wide variety of eye disorders, for the eye is but an outgrowth of the brain; the optic nerve, for example, is brain tissue, so is the retina, and 5 of the 12 cranial nerves are involved in the function of sight. The neurological and sensory disorders, therefore, from the medical-research point of view, are inextricably linked. This interdependence has been fully symbolized in the establishment of a National Institute of Neurological Diseases and Blindness. Morbidity and mortality
As a distinct group of disorders, the neurological and sensory diseases create an extremely serious public-health problem. They affect 20 million persons in the United States alone,' of whom at least half endure gravely disabling conditions. As a cause of death, it ranks third with cerebral vascular disease, causing 160,000 deaths yearly, achieving that position alone; and it is estimated that another 50,000 deaths yearly are due to all other neurological and sensory disorders.
It is, however, as the primary cause of permanent crippling that the neurolog. ical and sensory disorders are known. Cerebral vascular disease, caused by injuries, infections, and vascular disturbances of the brain, while a serious killer, leaves 1,800,000 now alive and crippled, paralyzing the body or seriously limiting the powers of movement, speech, and vision. And the other neurological and sensory disorders, similarly affecting the brain or spinal cord, are responsible for the disablement of another 8,200,000 persons.
This crippling is so severe and extends over such a long period of time as to cause profound psychological, social, and economic dislocation for the individual sufferer. No other group of disorders receives so little medical and research attention; yet no other group of disorders represents such an economic loss to the Nation and the patients and families who must cope with them. C'osts to the Nation
It is almost impossible to gain proper insight into the staggering costs which the neurological and sensory disorders impose on the country. The nature of these disturbances, which in the vast majority of cases render the vital organs useless, are such as to eliminate the neurological patient as a productive member of society and to render him wholly or partially a dependent on family, community, State, and Government. The fact that so many of these conditions have their origin in childhood or early adulthood and that life, nevertheless, so fre
· See appendix A.
quently endures the normal span of years undoubtedly makes these disorders the most tragic personal problems and the source by far of the most tragic drain on the country's resources.
Some concept of our national economic losses may be given by just review. ing a single neurological problem. Statistics derived from the Journal of the American Medical Association indicate that 200,000 persons are absent from full employment every day of every year largely as a result of head injuries caused by industrial and automobile accidents. This represents a loss of 416 million man-hours of work and at an average of $1.50 per hour ($60 weekly), this amounts to wage losses of $624 million a year.
Exclusive of wages lost, however, reliable studies by industry cost accountants have shown that the average accident involves indirect costs which are at least four times as great. Another $600 million must be included for medical expenses and compensation payments, and twice this sum must be reckoned as the cost of time lost by superiors and executives, loss of materials, damage and repairs to tools and equipment, time lost by fellow employees, hearings before compensation boards, and the time of medical personnel. The economic losses due to head injuries in any given year must, therefore, be calculated at very close to $2.5 billion. And the total productive losses for all neurological disorders cannot be less than 10 times this sum.
The 260,000 totally blind, for example, are scarcely productive at all; in addition they cost the county $150 million in welfare expenditures, plus another $30 million in income-tax deductions. A large majority of the 500,000 who incurred cerebral palsy in childhood will also not enjoy fruitful labor, will not pay income taxes, and cannot serve in the Armed Forces. The costs of maintaining just 50,000 epileptics in State institutions amounts to $35 million yearly. And one insurance company has estimated that the cost of indemnity and continuous hospitalization of a single paraplegic patient will amount to $400,000. While we do not know the exact number of paraplegics in the country, the estimates based on professional spot checks, range from 85,000 to 125,000.
In this bewildering array of costs due largely to the crippling effects of the neurological and sensory disorders, the national income as derived by tax revenue is also seriously affected. It has been estimated, for example, that at our present tax rate per capita, the 500,000 cerebral palsied, who incurred the disorder in infancy, should pay at least $600 each year in income taxes, or a total of $300 million yearly. Over half of these, however, will actually pay no taxes at all and over an average adult productive life span of 30 years, a total of $5 billion in tax revenue will be lost from the cerebral palsied. It is quite clear that if all the neurological and sensory disorders could be resolved as publichealth problems, so would the problems of the national budget. Personal costs
To the individual patient and his family, the costs of the neurological and sensory disorders are not calculable in economic terms alone, though certainly these will frequently be tragic. The loss of productivity, as already indicated, where adults are affected over long periods of time, if not permanently, simply means cessation of income and the consequent impoverishment of the entire family.
Where the family income producer is not affected, the costs of medical care, of doctor, nurse, hospital, or custodial homes are still extremely high. Just what their average might be it would be impossible to say; in those disorders which can be controlled in some measure by various drugs, the total costs might run as low as $1,500 ; but the costs of rehabilitation and care of cerebral-palsied children over a long period of time have frequently run as high as $100,000.
Economic costs and the resultant social and psychological pressures which they cause are ironically enough aggravated by the fact that these disorders, once developed, are incurable and in most cases uncontrollable. But no neurological patient will accept this verdict and the painful history of the multiple sclerotic, for example, or the parents of a muscular-dystrophied child is the record of a pilgrimage from physician to plıysician (or indeed to any) until personal and family f!'nds are exhausted.
Just as frequently, however, the patient does not receive an immediate diag. nosis and before his disturbance is identified for what it is, he has visited rarious physicians and paid for services not relevant to his condition. It takes an average of 6 years before the multiple sclerotic is diagnosed as such by a qualified specialist; and 9 out of 10 victims of myasthenia gravis, if they live. are misdiagnosed for a similar period. The myasthenic may be treated for neuro