"NATIONAL EPILEPSY COUNCIL "SEC. 705. (a) There is hereby created a National Epilepsy Council (hereafter referred to in this title as the 'Council'), to consist of the Surgeon General, or his representative, the Chief Medical Officer in Charge of Neurology of the Veterans' Administration, or his representative, the Chief Medical Officer in Charge of Neurology of the Navy, or his representative, the Chief Medical Officer in Charge of Neurology of the Army, or his representative, the Chief of the Children's Bureau, or her representative, and twelve members appointed without_regard to the civil-service laws, by the Surgeon General, with the approval of the Federal Security Administrator (hereafter referred to in this title as the 'Administrator'). The twelve persons appointed shall be leaders in the field of medical science, who have qualified as specialists in epilepsy, the fundamental sciences, education, or public affairs, and one of them shall be an individual who, himself, or herself, although otherwise qualified, is, or has been, a victim of epilepsy, and one shall be a registered nurse, qualified by experience with epileptics, and one shall be a representative of bona fide organizations of handicapped people, also qualified by experience with epileptics. "(b) Each appointed member of the Council shall hold office for a term of four years, except that any member appointed to fill a vacancy occurring prior to the expiration of the term for which his predecessor was appointed, shall be appointed for the remainder of such term, and except that, of the members first appointed, three shall hold office for a term of four years; three shall hold office for a term of three years; three shall hold office for a term of two years; and three shall hold office for a term of one year, as designated by the Surgeon General. None of such twelve members shall be eligible for reappointment until a year has elapsed since the end of his preceding term. Every two years the Council shall elect one member to act as Chairman for the succeeding two-year period. "(c) The Surgeon General is authorized to utilize the services of any member or members of the Council in connection with matters related to the work of the Service for such periods, in addition to conference periods, as he may determine to be necessary. "(d) Each appointed member of the Council, while attending conferences or meetings of the Council or while otherwise serving at the request of the Surgeon General, shall be entitled to receive compensation at a rate to be fixed by the Administrator, but not exceeding $75 per day, and shall be entitled to receive an allowance for actual and necessary traveling and subsistence expenses while so serving away from his place of residence. "(e) The Council shall meet from time to time to advise the Surgeon General on the conduct of the program of the Institute, and to review and make recommendations regarding requests for grants-in-aid for research, education, and control. "(f) The Council, with approval of the Surgeon General, shall establish and appoint subcommittees, to deal with various phases of diagnosis, treatment, and training of cases of epilepsy, as follows: (1) Subcommittee on Prevention, which shall be primarily concerned with obstetrics, to be composed of specialists skilled in (A) gynecology, (B) obstetrics, (C) genetics, (D) pediatrics, and (E) public health. "(2) Subcommittee on Treatment, to be composed of specialists skilled in (A) neurology, (B) neurosurgery, (C) physiology, (D) pediatrics, and (E) pharmacology. "(3) Subcommittee on Training of Professional Personnel, to be composed of the following: (A) Outstanding medical authorities actively engaged in the epilepsy field, (B) the head of an accredited medical school, (C) the head of the social service department of an accredited medical school, (D) educators of epileptic persons, (E) occupational therapists, and (F) psychiatrists. (4) Subcommittee on Educational Research on the Epileptic Child, to be composed of (A) qualified educators, especially interested in epilepsy, and (B) persons qualified to conduct clinics and educational forums for parents of epileptic children, and other organized groups at interest. "CONTROL GRANTS "SEC. 706. (a) The Surgeon General is authorized and directed to make grants-in-aid, as provided in this section, to States, counties, health districts, and other political subdivisions of States, and to public and nonprofit institutions and individuals for the establishment and maintenance of programs for prevention, treatment, and control of epilepsy, including the provision of approximate facilities for care and treatment and including the training of personnel. "(b) For each fiscal year, the Surgeon General, with the approval of the Administrator, shall determine the total sum from the appropriation authorized under section 707 which shall be available for allotment among the several States and other institutions under this section. "(c) The Surgeon General shall, from time to time, certify to the Secretary of the Treasury the amounts to be paid to each State from the allotments to each State, reduced or increased, as the case may be, by the amount which he finds that estimates of required expenditures with respect to any prior period were greater or less than the actual expenditures for such period. Upon receipt of such certification, the Secretary of the Treasury shall, prior to audit or settlement by the General Accounting Office, pay in accordance with such certification. "(d) The money so paid to any State shall be expended solely in carrying out the purposes for which the grant is made, and in accordance with plans presented by the health authority of such State and approved by the Surgeon General. "(e) Requests for grants-in-aid for control, including education for projects not in State agencies, shall be submitted, reviewed, and paid in manner similar to that established for research grants-in-aid. "GIFTS AND AUTHORIZATIONS "SEC. 707. (a) The Surgeon General shall recommend to the Administrator acceptance of conditional gifts, pursuant to section 501 of the Public Health Service Act, for study, investigation, or research into the cause, prevention, or methods of diagnosis or treatment of epilepsy, or the acquisition of grounds, or for the erection, equipment, or maintenance of premises, buildings, or reequipment of the Institute. Donations of $50,000 or over, for carrying out the purposes of this title, may be acknowledged by the establishment within the Institute of suitable memorials to the donors. "(b) There are hereby authorized to be appropriated for each fiscal year such sums as the Congress may determine to be necessary to carry out the provisions of this title. "(c) Such appropriations as are hereafter made to carry out the purposes of this title may be expended in the District of Columbia for personal services, stenographic recording and translating service, by contract if deemed necessary, without regard to section 3709 of the Revised Statutes; traveling expenses (including the. expenses of attendance at meetings when specifically authorized by the Surgeon General; rental, supplies, and equipment, purchase and exchange of medical books, books of reference, directories, periodicals, newspapers, and press clippings; purchase, operation, and maintenance of motor-propelled passenger-carrying vehicles; printing and binding (in excess of that otherwise provided by law); and for all other necessary expenses in carrying out the provisions of this title. "GENERAL PROVISIONS "SEC. 708. (a) This title shall not be construed as superseding or limiting (1) the functions, under any other Act, of the Surgeon General or the Service, or of any other officer or agency of the United States, relating to the study of the causes, prevention, or methods of diagnosis or treatment of epilepsy; or (2) the expenditure of money therefor. "(b) The Surgeon General shall perform his functions under this title under the supervision and direction of the Administrator. The Surgeon General, with the approval of the Administrator, is authorized to make such rules and regulations as may be necessary to carry out the provisions of this title. "(c) As used in this title, the term 'State' means a State or the District of Columbia, Hawaii, Alaska, Puerto Rico, or the Virgin Islands. "(d) The Surgeon General shall include in the report for submission to the Congress at the beginning of each regular session a full report of the administration of this title, including a detailed statement of receipts and disbursements. "(e) The Administrator is authorized to fix the compensation for the services of certain specially qualified scientific and professional personnel concerned with research activities of the National Institutes of Health and the National Epilepsy Institute: Provided, That the rates of compensation for positions established pursuant to the provisions of this subsection shall not be less than $10,000 per annum nor more than $15,000 per annum.' SEC. 2. (a) Section 1 of the Public Health Service Act is amended to read: "SECTION 1. Titles I to VII, inclusive, of this Act may be cited as the 'Public Health Service Act'." (b) The Act entitled "An Act to consolidate and revise the laws relating to the Public Health Service, and for other purposes", approved July 1, 1944, as amended, is amended by changing the number of title VII to title VIII and by changing the numbers of sections 701 to 714, inclusive, and references thereto, to sections 801 to 814, respectively. SEC. 3. This Act shall be effective sixty days from date of passage thereof. FEDERAL SECURITY AGENCY, Hon. ELBERT D. THOMAS, Chairman, Committee on Labor and Public Welfare, United States Senate, Washington 25, D. Č. DEAR MR. CHAIRMAN: This letter is in response to your request of January 29, 1949, for a report on S. 659, a bill "To amend the Public Health Service Act to provide for reasearch and investigation as to the cause, prevention, treatment, and possible cure of epilepsy.' This bill would establish a national epilepsy institute in the Public Health Service and would authorize the Surgeon General to conduct and promote― directly and through grants-in-aid, fellowships, traineeships, etc.-researches, investigations, public education, demonstrations, and control projects relating to the cause, prevention, and methods of diagnosis and treatment of epilepsy. Authority for the Surgeon General to make grants for research and investigations as to the cause, prevention, and cure of epilepsy has already been provided by the National Mental Health Act (Public Law 487, 79th Cong.). Research on the subject of this disease is included in the program of research in the Public Health Service and grants for studies on epilepsy have been made already by the Surgeon General upon recommendation of the National Mental Health Council. Since epilepsy is a neurological disorder it will be included in the research in this field now being carried on through the National Institute of Mental Health, which will investigate the whole group of diseases affecting the spinal cord on a more extensive scale when the Clinical Research Center at Bethesda is completed. Individuals are now being trained under the National Mental Health Act and their services will be available in the future to a large number of epileptics. Epileptics are now being treated under the community services program already established under this act through grants to States. Also, insofar as the bill refers to epilepsy in children, it should also be noted that programs of service are currently a part of the crippled children's programs organized by the States under the grant-in-aid provisions of title V, part II, of the Social Security Act administered by the Children's Bureau of the Social Security Administration in this agency. In view of these programs already under way or now being put into effect, we believe that the provisions of S. 659 calling specifically for research on epilepsy are unnecessary and that the establishment of a separate institute for this purpose would be administratively undesirable. Time has not permitted us to obtain advice from the Bureau of the Budget as to the relationship of this bill to the program of the President. Sincerely yours, J. DONALD KINGSLEY, Hon. ELBERT D. THOMAS, EXECUTIVE OFFICE OF THE PRESIDENT, Chairman, Committee on Labor and Public Welfare, United States Senate, Room 42, Capitol, Washington 25, D. C. MY DEAR SENATOR THOMAS: This will acknowledge receipt of your letter of January 29, 1949, inviting the Bureau to submit its views regarding S. 659, “To amend the Public Health Service Act to provide for research and investigation as to the cause, prevention, treatment, and possible cure of epilepsy." 91129-49- -2 The bill would provide for a national epilepsy institute in the Public Health Service and would authorize the Surgeon General to conduct, assist, and foster through grants-in-aid, fellowships, traineeships, etc., researches, investigations, experiments, and demonstrations relating to the cause, prevention, and methods of diagnosis and treatment of epilepsy. Appropriations are available to the national institutes of health for work and research in the various fileds of medicine and public health and in accordance with existing law, including section 301 of the Public Health Service Act, such funds are available, on an over-all basis, for research work relating to all the diseases and impairments of man. In the interest of a well-rounded research program as well as for reasons of sound administration, it would seem undesirable to establish a separate institute for epilepsy, or for any other disease. Substantial sums are also available for general health grants to the several States. In this connection, it is significant that the President, in transmitting the budget for 1950, recommended appropriations sufficient to double the general health grants to States, raising them to $22,000,000, in order that the States in turn may extend and strengthen local health services. He also recommended that the present statutory limitation on the amount of such general health grants to States be removed from the Public Health Service Act, so as to authorize in later years the provision of larger amounts for further improvement and expansion of local public health services, indicating his belief that this course of action is more desirable than adding new and separate grant programs or continuing the expansion of existing specialized health programs. In the light of these comments, it is felt that enactment of the proposal would not be in accord with the program of the President. Sincerely yours, F. J. LAWTON, Senator MURRAY. The record will show that because of the many other committee meetings that are being held at the same time, Senators Pepper, Humphrey, Taft, Smith, and Donnell cannot be with us through this hearing this morning. They will no doubt join us later if it is possible. In any case, a transcript of the testimony, of course, will be prepared, and each will have a copy of that transcript and will study the testimony very carefully. The first witness will be Dr. William G. Lennox, of Boston, Mass. Dr. Lennox, state your full name, your official position and anything else you wish to have in the record in regard to your background. STATEMENT OF WILLIAM G. LENNOX, M. D., PRESIDENT, INTERNATIONAL LEAGUE AGAINST EPILEPSY; FOUNDER, AMERICAN EPILEPSY LEAGUE; MEMBER, AMERICAN FEDERATION OF THE PHYSICALLY HANDICAPPED. Dr. LENNOX. Thank you. My name is William G. Lennox, M. D. I am associate professor of neurology at Harvard Medical School, president of the International League Against Epilepsy, national consultant in epilepsy to the Veterans' Administration, and chief of the seizure division, at the Children's Medical Center in Boston. Four years ago a group of others and myself had a similar hearing here before the subcommittee on aid to the physically handicapped, and at that hearing I gave quite a little lecture on the whole subject of epilepsy, illustrated with lantern slides, so I will not need to repeat that as I have brought that document here. Senator MURRAY. We will make that part of the record, by reference. We will be glad to have you give us copies of that, Doctor. (The document above referred to is filed with the committee.) Dr. LENNOX. What I have to say this morning is simply a brief digest of the problem as it is presented. I speak for a half-million sick who dare not speak for themselves. Discovery of their illness would bring not helpful sympathy, but social ostracism. I refer not to leprosy, but to epilepsy. I speak also for many millions of taxpayers who shoulder the increasing economic burden of these half-million epileptics. A half-million is a moderate figure. Probably it is somewhere between that and 800,000 or 900,000. The epileptic must hide his condition or else be denied education and employment; therefore, the public does not know that epileptics outnumber persons who are crippled by polio, or those with active tuberculosis or diabetes. Half the hospital beds in this country are taken by persons with nervous or mental disease, a tenth of these beds are for epileptics, yet 9 epileptics out of 10 are in the community. Of these, 7 or 8 out of 10, if given the best medical and social treatment, could be made relatively free of attacks and become self-supporting and self-respecting members of the community. The big reasons for aiding the epileptic are two: First, pity; and second, economy. Pity to the point of nausea would be roused by a visit to some of the 50,000 epileptics now confined in our mental institutions. These, for the most part, are beyond restoration. This is especially true of children irreparably defective at birth—their numbers constantly increasing because the mercy of death from infections is denied to them by the use of inoculations and sulpha drugs. We cannot relieve society of this wreckage, but we can prevent many others from becoming a public charge. We should be most concerned with the thousands of useful lives and the millions of dollars that might be saved in the future by better care of epileptics in the community. Key words in this saving are these: 1. Prevention of epilepsy (through wise use of eugenics and decrease in brain injuries). 2. Early medical treatment (through full use of the brain wave machine and other methods of early diagnosis and through the skilled use of drugs that are now available). 3. Social therapy: The disability of epilepsy is as much social as physical. Think of the waste involved in supporting in idleness thousands of men and women simply because employers or fellow workers are afraid of an occasional seizure. Look at the dollars and cents involved. Suppose by the widespread use of present-day medical and social means of prevention and treatment 100,000 of the 500,000 epileptics now in the community could be made social assets instead of social liabilities. This would mean a saving of at least $2,000 a year apiece for at least 30 years, or a total saving for this period of at least $6,000,000,000. I believe that a wise expenditure of $3,000,000 a year could save these $6,000,000,000. A $1 investment that yields $66 is a smart investment, but even more important would be the saving of fears and of tears for this army of patients and their families. I should say that this is only an estimate. It might be that only 1 out of 10 could be made assets instead of liabilities. In that case the saving would be only $3,000,000,000, or $33 for every dollar spent. |