Volume 86 · 137
Public Law 92–294
To amend the Public Health Service Act to provide for the control of sickle cell anemia.
Approved May 16, 1972
Statutory text
AN ACT
To amend the Public Health Service Act to provide for the control of sickle cell anemia.
Be it enacted by the Senate and House of Representatives of the United States of America in Congress assembled,
Section 1. short title
This Act shall be cited as the “National Sickle Cell Anemia Control Act”.
Sec. 2. findings and declaration of purpose
The Congress finds and declares—
that sickle cell anemia is a debilitating, inheritable disease that afflicts approximately two million American citizens and has been largely neglected;
that the disease is a deadly and tragic burden which is likely to strike one-fourth of the children born to parents who both bear the sickle cell trait;
that efforts to prevent sickle cell anemia must be directed toward increased research in the cause and treatment of the disease, and the education, screening, and counseling of carriers of the sickle cell trait;
that simple and inexpensive screening tests have been devised which will identify those who have the disease or carry the trait;
that programs to control sickle cell anemia must be based entirely upon the voluntary cooperation of the individuals involved; and
that the attainment of better methods of control, diagnosis, and treatment of sickle cell anemia deserves the highest priority.
In order to preserve and protect the health and welfare of all citizens, it is the purpose of this Act to establish a national program for the diagnosis, control, and treatment of, and research in, sickle cell anemia.
Sec. 3. amendments to public health service act
Section 1 of the Public Health Service Act is amended
by striking out “titles I to X” and inserting in lieu thereof “titles I to XI”.
The Act of July 1, 1944 (58 Stat. 682), as amended, is amended by renumbering title XI (as in effect prior to the enactment of this Act) as title XII, and by renumbering sections 1101 through 1114 (as in effect prior to the enactment of this Act), and references thereto, assertions 1201 through 1214, respectively.
The Public Health Service Act is further amended by adding after title X the following new title:
“TITLE XI— SICKLE CELL ANEMIA PROGRAM
“Sec. 1101. “sickle cell anemia screening and counseling programs and information and education programs
(a) (1) The Secretary may make grants to public and nonprofit private entities, and may enter into contracts with public and private entities, for projects for the establishment and operation of voluntary sickle cell anemia screening and counseling programs, primarily through other existing health programs.
“(2) The Secretary shall curry out a program to develop information and educational materials relating to sickle cell anemia and to disseminate such information and materials to persons providing health care and to the public generally. The Secretary may carry out such program through grants to public and nonprofit private entities or contracts with public and private entities and individuals.
“(3) In making any grant or contract under this title, the Secretary shall (1) take into account the number of persons to be served by the program supported by such grant or contract and the extent to which rapid and effective use will be made of funds under the grant or contract; and (2) give priority to programs operating in areas which the Secretary determines have the greatest number of persons in need of the services provided under such programs.
“(b) For the purpose of making payments pursuant to grants and contracts under this section, there are authorized to be appropriated $20,000,000 for the fiscal year ending June 30, 1973, $30,000,000 for the fiscal year ending June 30, 1974, and $35,000,000 for the fiscal year ending June 30, 1975.
“Sec. 1102. “project grants and contracts
(a) The Secretary may make grants to public and nonprofit private entities, and may enter into contracts with public and private entities and individuals, for projects for (1) research and research training in the diagnosis, treatment, and control of sickle cell anemia, (2) the development of programs to educate the public regarding the nature and inheritance of the sickle cell trait and sickle cell anemia, and (3) the development of sickle cell anemia counseling and testing programs and other programs for diagnosis, control, and treatment of sickle cell anemia.
“(b) For the purpose of making payments pursuant to grants and contracts under this section, there are authorized to be appropriated $5,000,000 for the fiscal year ending June 30, 1973, $10,000,000 for the fiscal year ending June 30, 1974, and $15,000,000 for the fiscal year ending June 30, 1975.
“Sec. 1103. “voluntary participation
The participation by any individual in any program or portion thereof under this title shall be wholly voluntary and shall not be a prerequisite to eligibility for or receipt of any other service or assistance from, or to participation in, any other program.
“Sec. 1104. “applications; administration of grant and contract programs
(a) A grant under this title may be made upon application to the Secretary at such time, in such manner, containing and accompanied by such information, as the Secretary deems necessary. Each applicant shall—
“(1) provide that the programs and activities for which assistance under this title is sought will be administered by or under the supervision of the applicant;
“(2) provide for strict confidentiality of all test results, medical records, and other information regarding screening, counseling, or treatment of any person treated, except for (A) such information as the patient (or his guardian) consents to be released; or (B) statistical data compiled without reference to the identity of any such patient;
“(3) provide for appropriate community representation in the development and operation of any program funded by a grant under this title;
“(4) in the case of an application for a grant under section 1101(a)(1), provide assurances satisfactory to the Secretary that (A) the screening and counseling services to be provided under the program for which the application is made will be directed first to those persons who are entering their child-producing years, and secondly to children under the age of 7, and (B) appropriate arrangements have been made to provide counseling to persons found to have sickle cell anemia or the sickle cell trait;
“(5) set forth such fiscal control and fund accounting procedures as may be necessary to assure proper disbursement of and accounting for Federal funds paid to the applicant under this title; and
“(6) provide for making such reports in such form and containing such information as the Secretary may reasonably require.
“(b) In making any grant or contract under this title, the Secretary shall (1) take into account the number of persons to be served by the program supported by such grant or contract and the extent to whirl) rapid and effective use will be made of funds under the grant or contract; and (2) give priority to programs operating in areas which the Secretary determines have the greatest number of persons in need of the services provided under such programs.
“Sec. 1105. “public health service facilities
The Secretary shall establish a program within the Public Health Service to provide for voluntary sickle cell anemia screening, counseling, and treatment. Such program shall be made available through facilities of the Public Health Service to any person requesting screening, counseling, or treatment, and shall include appropriate publicity of the availability and voluntary nature of such programs.
“Sec. 1106. “reports
(a) The Secretary shall prepare and submit to the President for transmittal to the Congress on or before April 1 of each year a comprehensive report on the administration of this title.
“(b) The report required by this section shall contain such recommendations for additional legislation as the Secretary deems necessary.”
Approved May 16, 1972.