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NATIONAL EPILEPSY ACT
WEDNESDAY, MAY 4, 1949
UNITED STATES SENATE,
LABOR AND PUBLIC WELFARE,
Washington, D.C. The subcommittee met, pursuant to call, at 10:15 o'clock a. m., in room G-16, the Capitol, Senator James E. Murray presiding.
Present: Senators Murray and Neely.
Senator MURRAY. Ladies and gentlemen, the hearing will come to order.
The hearing this morning is on Senate bill 659, a bill introduced by Senator Langer to amend the Public Health Service Act and provide for research and investigation as to the cause, treatment and possible cure of epilepsy. The bill, together with the departmental reports which have been received thereon will be inserted at this point in the record.
(The material referred to is as follows:)
(S. 659, 81st Cong., 1st sess.) A BILL To amend the Public Health Service Act to provide for research and investigation as to the cause,
prevention, treatment, and possible cure of epilepsy Be it enacted by the Senate and House of Representatives of the United States of America in Congress assembled, That the Public Health Service Act, as amended, is hereby further amended, by adding at the end thereof the following new title:
"Sec. 701. This title may be cited as the 'National Epilepsy Act.'
"DECLARATION OF POLICY “SEC. 702. The Congress hereby finds and declares (1) that the health of the Nation is seriously affected and threatened by epilepsy; wherein (2) approximately eight hundred thousand of our citizens are suffering from this disease, which causes involuntary convulsions which interfere with voluntary motion and coordination, and require special treatment and training; (3) that, while epileptics have been regarded in the past as being generally incurable, newer techniques employing new drugs, therapy, and training evidence much progress in the treatment of persons afflicted by epilepsy; (4) that it conservatively estimated that the various States are spending approximately $40,000,000 per annum in keeping patients alive in State institutions, but are spending nothing, or practically nothing, for learning how to prevent these patients from becoming lifetime public charges; and (5) that the Federal Government should provide for research and investigation with respect to epilepsy, in order to develop more effective means of prevention, diagnosis, and treatment of such disease, and, if possible, to cure the victims thereof.
"NATIONAL EPILEPSY INSTITUTE “Sec. 703. For the purpose of improving the health of the people of the United States through the conduct of researches, investigations, public education, and demonstrations relating to the cause, prevention, and methods of diagnosis, treatment, and restoration of those afflicted by epilepsy; assisting and fostering such researches and activities by public and private agencies, and promoting the coordination of all such researches and activities and the useful application of their results; training research workers; training undergraduate and postgraduate personnel in matters relating to epilepsy; training specialized social workers in this field; training parents of epileptic children; and developing and assisting States and other agencies in the use of the most effective methods of prevention, diagnosis, treatment, and restoration of those afflicted by epilepsy, including refresher courses for physicians, there is hereby established in the Public Health Service (hereafter referred to in this title as the “Service') a National Epilepsy Institute (hereafter referred to in this title as the 'Institute').
"DUTIES OF THE SURGEON GENERAL "SEC. 704. In carrying out the purposes of this Act, the Surgeon General of the Public Health Service (hereafter referred to in this title as the 'Surgeon General') is authorized and directed
"(1) to conduct, assist, and foster researches, investigations, experiments, and demonstrations, relating to the cause, prevention, and methods of diagnosis and treatment of epilepsy;
“(2) to promote the coordination of research, education, and control programs conducted by the Institute, and similar programs conducted by other agencies, organizations, and individuals;
“(3) to make available research facilities of the Service to appropriate public authorities and to health officials and scientists engaged in special studies related to the purposes of this title;
“(4) to make nts-in-aid to universities, hospitals, laboratories, and other public or private agencies and institutions, and to individuals, for research, education, and control (service programs for prevention, diagnosis, and treatment utilizing current or advanced methods) projects and programs, including grants to such agencies and laboratories, and related facilities, and related facilities necessary for the construction, acquisition, leasing, and equipment of hospital, clinic, and related facilities for such research, education, and control;
"(5) to establish an information center on research, prevention, diagnosis, and treatment of epilepsy, and collect and make available, through publications and other appropriate means, research and other activities carried on pursuant to this title;
“(6) to secure, from time to time, and for such periods as he deems advisable, the assistance and advice of persons from the United States or abroad, who are experts in the field of epilepsy;
“(7) to establish and maintain, from funds appropriated or donated for the purpose, research fellowships in the Institute and elsewhere, with such stipends and allowances (including travel and subsistence expenses) as he may deem necessary to train research workers and procure the assistance of the most brilliant and promising research fellows from the United States and abroad, and, in addition, to provide such training and instruction, and demonstrations, through grants to public and other nonprofit institutions;
"(8) to establish and maintain, from funds appropriated or donated for the purpose of traineeships in the Institute and elsewhere in matters relating to the disagnosis, prevention, and treatment of epilepsy, with such stipends and allowances (including travel and subsistence expenses) as he may deem necessary to train persons found by him to have proper qualifications, and, in addition, to provide such training and instruction and demonstration, through grants to public and other nonprofit institutions;
“(9) to admit and treat at the Institute, for purposes of study, voluntary patients suffering from epilepsy, whether or not otherwise eligible for such treatment by the Service; and
“(10) to adopt, upon recommendations of the National Epilepsy Council, such additional means as he deems necessary or appropriate to carry out the purposes of this title.
"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,