Hearings

1 tain such recommendations for additional legislation as the

2 Secretary of Defense deems necessary.

3 (e) The participation by any individual in any pro

gram or portion thereof under this section shall be wholly 5 voluntary and shall not be a prerequisite to eligibility for or 6 receipt of any other service or assistance from, or to partici7 pation in, any other program.

PROTECTION OF VETERANS

9 SEC. 5. (a) Chapter 17 of title 38, United States Code, 10 is amended by adding at the end thereof the following new

"(a) The Administrator shall notify all persons eligible 16 for care under this chapter of the availability of screening, 17 treatment, and counseling programs with regard to the sickle 18 cell trait and sickle cell anemia and the voluntary nature of

19 such programs.

222

"(b) The Administrator shall establish a program of

education regarding the nature and inheritance of sickle cell

22 trait and sickle cell anemia and make such program available

"§ 652. Screening and treatment

"(a) The Administrator shall furnish to any person

71-519 - 72 - 2

1 eligible for care under this chapter who makes a request,

screening for sickle cell trait or sickle cell anemia.

3 "(b) Upon a finding that such eligible person has the

4 sickle cell trait or sickle cell anemia the Administrator shall

5 provide for voluntary counseling or treatment as the case may be.

7 "§ 653. Reports

"(a) The Administrator shall prepare and submit to the 9 President for transmittal to the Congress on or before April 1 10 of each year a comprehensive report on the administration 11 of this subchapter.

"(b) The report required by this section shall contain 13 such recommendations for additional legislation as the Ad

14 ministrator deems necessary.

"§ 654. Voluntary participation

"The participation by any individual in any program

or portion thereof under this section shall be wholly volun18 tary and shall not be a prerequisite to eligibility for or

receipt of any other service or assistance from, or to partici

pation in, any other program.'

(b) The analysis at the beginning of such chapter is

amended by adding at the end thereof:

"SUBCHAPTER VI-SICKLE CELL ANEMIA PREVENTION

"651. Notification and education.

"652. Screening and treatment.

"653. Reports.

"654. Voluntary participation."

Senator KENNEDY. The National Sickle Cell Anemia Prevention Act will perform two major tasks-first, it will authorize the appropriation of more money for the battle against sickle cell anemia. This will amount to more in 3 years than has been spent throughout the known history of the disease.

Second, it will serve to catalyze the enormous potential of all our health and public education resources to help solve the problems of those who are afflicted.

Probably no other disease has affected as many people in this country as sickle-cell anemia and has been as unattended as this disease.

Some 58,000 people suffered during the 1952 epidemic of polio. Despair and fear from that killer brought a shock to the Nation that generated an all-out effort to control it.

PKU-phenylketonuria-occurring about once in 10,000 births, and cystic fibrosis, occurring once in every 3,000 live births, almost exclusively among white people, have attracted astronomical amounts of money in the struggle to end the struggle they cause. But sickle-cell anemia, which occurs much more frequently, has been neglected and ignored just like most other conditions that affect only black people. And so today, as we begin to look at the problem of how to produce relief for the victims of sickle-cell anemia, we must also focus on the fundamental social and physical components of this problem with the same intensity that we study the problem's medical research and treatment aspects. With those concerns in mind we have attempted to structure these hearings to include testimony from a broad range of witnesses.

We expect to hear accounts from the very personal and agonizing experience of a family's own battles against sickle-cell anemia. The description of screening and counseling projects will be explained by the members of a group of athletes who have formed a volunteer organization, and we shall also receive testimony from scientists and medical experts who have researched, treated, counseled, and advised thousands of people about this dread disease.

Through the data and information obtained from these witnesses, it is hoped that we may contribute to the development of plans and programs by officials of the Department of Health, Education, and Welfare who will describe the Department's work regarding sicklecell anemia research.

The bill we shall be considering recognizes the need for a three-level attack on the problem of sickling:

First, there is the demand to develop effective screening and counseling programs that will seek out the people who suffer from sickle-cell anemia in order that they may receive the benefits of counseling and

treatment.

Second, we need to establish widespread networks to distribute easily understood information about sickle-cell anemia to potential victims and especially to health care personnel. An awareness of the disease can readily serve to produce the help required to produce relief from it. Genetic counseling can be of major importance in reducing the incidence of the disease.

And, finally, I want to see this country launch a substantial research effort which will add to our medical knowledge in the areas of treat

ment and will aid in alleviating the basic genetic defect and its consequences.

I am convinced that if PKU, cystic fibrosis, or muscular dystrophy struck the lives of white families in the proportion that sickle-cell anemia affects black Americans, our public commitment to it would be as stubborn as was our persistence last week to blow up the tiny island of Amchitka.

I am happy to welcome all of our witnesses to this morning's first session on sickle-cell anemia. Your concern and interest in this vital matter of health care will be valuable to our efforts in the Congress in developing programs that can aid those who are suffering.

It is my strong conviction that the mysteries of sickle cell anemia must be examined with all the power and might that our national medical resources will allow.

To avoid searching for the clues to that mystery, as an excuse that this is an insurmountable challenge, is merely a cover for racism. The only battles we cannot win are the battles we do not fight. I intend to fight for help against this crippling disease.

The opening statement by Senator Javits is to be placed into the record at this time.

STATEMENT OF HON. JACOB K. JAVITS, A U.S. SENATOR FROM THE STATE OF NEW YORK

Senator JAVITS. Mr. Chairman, as we begin hearings on the National Sickle-Cell Anemia Prevention Act-S. 2676-of which I am pleased to be a cosponsor, I think it is important to note that it was President Nixon, in his 1971 health message, who first focused national attention on this tragic disease. He said:

"A second targeted disease for concentrated research should be sickle-cell anemia-a most serious childhood disease which almost always occurs in the black population. It is estimated that one out of every 500 black babies actually develops sickle-cell disease.

"It is a sad and shameful fact that the causes of this disease have been largely neglected throughout our history. We cannot rewrite this record of neglect, but we can reverse it. To this end, this administration is increasing its budget for research and treatment of sickle-cell disease fivefold, to a new total of $6 million."

I was concerned that the amounts requested by the administration for funding did not give sufficient priority to sickle-cell anemia and offered with Senator Kennedy an amendment-which passed the Senate but unfortunately was not accepted by the conferees-to increase appropriations to combat sickle-cell anemia by an additional $6 million.

For too many years, sickle-cell anemia, a painful, crippling blood disease that kills 1 out of every 500 black people in this country and a disease that primarily affects the black population, has been ignored as one of the greatest killers of our Nation's people.

I am not being critical of Federal research support, for I have long advocated across-the-board increased funding for all NIH research programs; however, I cite the following revealing statistics:

Federally supported research grants of $1,539,500 million for sickle cell anemia (1,500 new cases) by the National Heart and Lung Institute;

$5,476,000 for muscular dystrophy (813 new cases) by the National Instiute of Neurological Diseases and Stroke; and

$2,643,000 for cystic fibrosis (1,250 new cases) by the National Institute of Arthritis and Metabolic Diseases.

Sickle cell anemia is carried from generation to generation with some people acting as carriers of the trait, while others are the unfortunate victims.

It is estimated that 50,000 blacks have the sickle cell disease; 2-million-plus are carriers of it, and at least 5,000 require hospitalization each year.

Most of the children affected with the disease die before the age of 30.

In spite of these staggering figures, there is as yet no national program to prevent the 2 million carriers of the sickle cell trait from passing it from one generation to another.

Perhaps even more importantly, there is no national program to educate these carriers as to the risks involved in having children and most shocking is that despite these tragic statistics, there has been no all-out program to inform the black communities of the significant proportions of this disease and its immediate threat to their own lives.

I believe S. 2676 is the appropriate legislative response and will permit us to institute the needed programs to adequately combat this disease, programs that should have been instituted many years ago.

Senator KENNEDY. I want to extend a very warm welcome to my colleague from Massachusetts, Hon. Edward W. Brooke.

Senator Brooke received his B.S. degree from Howard University and his master of laws from Boston University Law School, where he was also editor of the Law Review.

He served two terms as the attorney general of the Commonwealth of Massachusetts before being elected to the U.S. Senate in 1966.

Among his many honors, Senator Brooke was the recipient of one of 10 outstanding young men of Greater Boston, junior chamber of commerce award in 1952; Distinguished Service award, American Veterans of World War II; and was elected national judge advocate, 1955-57.

In addition, he was a fellow of the American Bar Association for excellence in law, 1963; is a trustee of Boston University; and served on President Johnson's Commission for Civil Rights Under Law.

Senator Brooke has been in the forefront in bringing attention to, and seeking resources to combat, sickle cell anemia.

His leadership in this battle is most welcome and encouraging to all of us joined with him.

Welcome to the subcommittee, Senator.

STATEMENT OF HON. EDWARD W. BROOKE, A U.S. SENATOR FROM THE STATE OF MASSACHUSETTS

Senator BROOKE. Thank you very much, Mr. Chairman.

I am pleased to have this opportunity to appear before the health subcommittee in support of S. 2676, the National Sickle Cell Anemia Prevention Act.

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