NATIONAL SICKLE CELL ANEMIA PREVENTION ACT

THURSDAY, NOVEMBER 11, 1971

U.S. SENATE,

SUBCOMMITTEE ON HEALTH OF THE

COMMITTEE ON LABOR AND PUBLIC WELFARE,

Washington, D.C.

The subcommittee met, pursuant to notice, at 9:30 a.m., in room 4232 of the New Senate Office Building, Senator Edward M. Kennedy (chairman of the subcommittee) presiding.

Present: Senators Kennedy, Dominick, and Schweiker.
Also present: Senators Tunney and Brooke.

Staff members present: LeRoy G. Goldman, professional staff member; and Jay B. Cutler, minority counsel.

Senator KENNEDY. The subcommittee is in order. I am pleased to open hearings this morning on legislation that is not only directly vital to the health of 2 million Americans, but is also of critical importance in establishing our national health priorities.

In addition to the staff members of the subcommittee, Robert Bates of my staff has also worked on the legislative background in connection with sickle cell anemia.

Sickle cell anemia has been a neglected disease for too many years. It is now receiving the concerted attention of many of us in the Congress and of health authorities around the Nation because of serious efforts to examine many of the ills and problems that have long affected those Americans who suffer the anguish and inhumanity of racism.

Dr. Roland B. Scott, of the Howard University College of Medicine, will readily verify that black physicians and their patients have struggled with the exasperation of inadequate resources to combat sickle cell anemia for decades.

Each year without warning, attacks of painful crises seriously affect 100,000 black Americans.

In total, 2 million black people in this country are believed to be carriers of the sickle cell trait.

Although 10 percent of all black Americans may bear the trait that leads to sickling, the tragic symptoms and the crippling effects of the disease are seen only in the offspring of two people, both of whom have the sickle cell trait.

For that reason family planning advisers are seeking to develop public awareness projects to distribute more and more information and educational materials about the disease.

Last week, Dr. Raymond L. Standard, Director of the Washington, D.C., Health Services Administration, said that the highest priorities

should be aimed at reaching junior and senior high school students who will be marrying soon, so that they might be advised of the effects the disease may have on their children.

I also want to take this opportunity to praise my colleague and longtime friend, Senator John V. Tunney, of California, for the concern he has shown about the need to combat this disease by introducing S. 2676, into the Senate.

(The text of the bill, S. 2676, follows:)

92D CONGRESS 1ST SESSION

S. 2676

IN THE SENATE OF THE UNITED STATES

OCTOBER 8, 1971

Mr. TUNNEY (for himself, Mr. WILLIAMS, Mr. BROOKE, Mr. Kennedy, Mr. ANDERSON, Mr. BAYH, Mr. BENNETT, Mr. BENTSEN, Mr. Case, Mr. CRANSTON, Mr. EAGLETON, Mr. GRIFFIN, Mr. HARRIS, Mr. HART, Mr. HARTKE, Mr. HUMPHREY, Mr. INOUYE, Mr. JACKSON, Mr. JAVITS, Mr. MAGNUSON, Mr. METCALF, Mr. MONDALE, Mr. Moss, Mr. MUSKIE, Mr. PASTORE, Mr. PERCY, Mr. RIBICOFF, Mr. ROTH, Mr. SCHWEIKER, Mr. TAFT, and Mr. THURMOND) introduced the following bill; which was read twice and referred to the Committee on Labor and Public Welfare

A BILL

To provide for the prevention of sickle cell anemia. 1 Be it enacted by the Senate and House of Representa2 tives of the United States of America in Congress assembled,

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SHORT TITLE

SECTION 1. This Act shall be cited as the "National

5 Sickle Cell Anemia Prevention Act".

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FINDINGS AND DECLARATION OF PURPOSE

SEC. 2. (a) The Congress hereby finds and declares

(1) that sickle cell anemia is a disease resulting

from the inheritance of a genetic factor relating to the

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sickle cell trait which afflicts a large number of American citizens, primarily among the black population of the

United States;

(2) that the disease is a deadly and tragic burden which strikes approximately one of every five hundred black children, and that less than half of those children who contract the disease survive beyond the age of twenty; and

(3) 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;

(4) that simple and inexpensive screening tests

have been devised which will identify those who have

the disease or carry the trait;

(5) that programs to prevent sickle cell anemia must be based entirely upon the voluntary cooperation of the individuals involved;

(6) that the attainment of better methods of prevention, diagnosis, and treatment of sickle cell anemia

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(b) In order to preserve and protect the health and wel

23 fare of all citizens, it is the purpose of this Act to establish

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a national program for the prevention and treatment of

sickle cell anemia.

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AMENDMENTS TO PUBLIC HEALTH SERVICE ACT

SEC. 3. (a) Section 1 of the Public Health Service Act

3 is amended by striking out "titles I to X" and inserting

4 in lieu thereof "titles I to XI".

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(b) The Act of July 1, 1944 (58 Stat. 682), as 6 amended, is amended by renumbering title XI (as in effect 7 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, as 10 sections 1201 through 1214, respectively.

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(c) The Public Health Service Act is further amended by adding after title X the following new title:

“TITLE XI—SICKLE CELL ANEMIA PREVENTION

PROGRAM

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"GRANTS FOR SICKLE CELL SCREENING AND

COUNSELING PROGRAMS

"SEC. 1101. (a) The Secretary is authorized to make

grants to and enter into contracts with public and non19 profit private entities to assist in the establishment and op

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eration of voluntary sickle cell anemia screening and counseling programs and to assist in developing and making available information and educational materials relating to

sickle cell anemia to all persons requesting such information 24 or materials, and to inform the public generally about the 25 nature of sickle cell anemia and the sickle cell trait.