money would be needed just here in the District of Columbia. We were told, for instance, that about $5 million would be needed in the District of Columbia to have an adequate program for screening, for counseling, for treatment, for education, and for research, with the assumption that we were to use the facilities of Howard University where Dr. Scott, a pioneer in research for the past 20 years, has been working. Last year we were told that $2 million of Federal money went to sickle-cell anemia research.

Just where that money went, I am not sure, but one thing we did learn at our hearings was that not much of it went to researchers like Dr. Scott.

In fact, as he testified before me, Howard University received $2,000. The present administration makes much of the fact that it has earmarked $6 million in the 1972 NIH budget for sickle-cell anemia— none of which, I might add, was new money.

Where is that money going, if it is being spent at all?

The Director of the District of Columbia Health Services Administration testified that the District could not even get $15,000 from NIH to piggyback a sickle-cell test on an existing program of leadpaint poisoning tests.

In my testimony, I quote from the colloquy between Dr. Standard and Dr. Shufford and myself. A measly $15,000 was not available through NIH for the screening program in the District last year.

A second point concerns yesterday's announcement by HEW and Secretary Richardson on the recommendations by the HEW SickleCell Anemia Advisory Board.

Mr. Chairman, I welcome the administration's interest in this area. I wish it had existed long ago, and I wish it were stronger.

I will not comment on the timing of this release-just 2 days prior to the commencement of these hearings-but the fact is, the amount is inadequate.

They are talking in terms of $5 million. As I indicated, that would be adequate for the District of Columbia alone, but certainly not for a nationwide program.

Senator KENNEDY. Senator Tunney, we requested that information from NIH.

We have Dr. Zapp here this morning, and we are hopeful he will be able to enlighten us on this. I hope he will be able to give us that information.

It is terribly important to think if the money is expended, this would be the best place to try to use those resources in the District of Columbia, where you have such a profound expert. It does surprise me, and we will find out where that money is going, and we will ask HEW to give us that information, and we will have the GAO to look at it. Senator TUNNEY. I am happy to hear that. I think this brings me to a third point I would like to make, before getting into a discussion of the bill itself.

Besides being told just what is happening with this $6 million, which was earmarked in the 1972 budget, I think we ought to know to what institutions it is going.

I would like to point out that witnesses we had before our committee indicated the money was not going to those institutions that

have been doing pioneer work in research for sickle-cell anemia for the past 20 years.

Dr. Emerson Walden, the current president of the National Medical Association, stated most eloquently in the hearings that we held last month, and I quote:

We urge that funds for research, treatment, and so forth, of the disease be funneled directly to the two medical schools which have traditionally worked with this problem.

Howard University, College of Medicine which is located here in the District and Meharry Medical College in Nashville, Tennessee.

It is a sad story of history that funds controlled by NIH seem to be funneled to universities like Johns Hopkins, Harvard, Yale, Georgetown and Columbia.

The point I think he was making is that the black universities which have been most interested in doing the research in the past, ought to be considered for funding if this legislation passes the Congress, and if moneys are made available. Even if it does not pass, these universities should be the primary recipients of moneys presently available under the HEW budget. Otherwise, there will be in essence a discrimination against these black universities in favor of more traditional universities which have not shown any particular concern until very recently. I think this is most important; this point could be made very eloquently by Dr. Scott and others who will testify before you. We can to make sure that the moneys that are allocated to sickle-cell research go to sickle-cell research and do not go to related diseases or unrelated diseases. I think Dr. Scott will make this very clear before your committee as he did before mine. One of the best ways we can guarantee that sickle cell will be the disease where the moneys are mainly directed, is to give it to the universities that have been traditionally doing research on it.

Mr. Chairman, as a cosponsor of the legislation, you are well aware of what the bill provides.

I would like to just highlight two or three points. No. 1, it provides for voluntary screening. I feel that is most important. I do not think it should be a mandatory program.

Inasmuch as the disease mainly strikes blacks, I think a program that stated in so many words that all black people had to be screenedand not white people as well, Orientals, or whatever it might be that many persons would take offense. Many black people would take offense, as I rightly think they should; so I think it should be a voluntary program.

No. 2, the program provides money for counseling, and it provides money for public education. These are both very important.

The bill provides demonstration funds, and it provides programs for the military, for the public health services, and for the Veterans' Administration. These three agencies of Government are directly concerned with health delivery to the population of our country. That is why these three agencies would be given money and required to give screening programs to those people whom they regularly provide health services for. There would also be counseling and treatment programs.

Senator KENNEDY. Let me ask you, Senator Tunney, as I understand it, we are screening all returning servicemen from Southeast Asia for drugs, are we not?

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Senator TUNNEY. It is my understanding that all of the servicemen coming back from. Southeast Asia are being screened.

Senator KENNEY. So you are suggesting there is no reason we could Dot SerBED ALL Servicemen going into the Armed Forces of the United States in terms of this as well

As I remember, having served in the Armed Forces, servicemen are tested for a variety of diferent kinds of illnesses and diseases, they are given numerous kinds of shots, and I think what you are suggesting how is that we ought to have the mechanism established to provide testing for sickle-cell anemia. Testing programs should at least be available to inform those who are concerned. Many people want to know whether they have the trait or not, and I suppose for a great number of citizens, testing programs would provide an extraordinary sense of relief to learn that they are not in any way affected by this trait, would you not agree!

Senator TUNNEY. Yes, I think that is true. If it were a part of routine medical testing, when entering the service. But I do not think that black people ought to be singled out for a mandatory screening program just because they are black.

Senator KENNEDY. But do you agree with me that many black people would like to be tested if they had the facilities to go to some place where this service was available to them.

Senator TUNNEY. That is true. I think it is absolutely true.

Senator KENNEDY. As a matter of fact, the leadership has really been provided by the Black Athletes Foundation, Dr. Scott of Howard University and, many other groups in this area. They have challenged the Congress to take some kind of meaningful action, and I think your bill does just that.

Senator TUNNEY. And then there is the importance of education. It is so incredibly important.

I have heard in private discussions that maybe as many as 40 to 50 percent of the black people in this country are not even aware of the disease, so public education is extremely important in this area.

Senator KENNEDY. Well, I want to again commend you for this. I understand there are a number of communities in California that have developed voluntary programs, are there not?

Senator TUNNEY. Yes, we have voluntary groups in Los Angeles. but it certainly is inadequate.

It is completely inadequate.

I had an opportunity to talk to a doctor recently who has been very involved in research on sickle cell anemia. He told me that the terrible, terrible tragedy is when you find a family that had a sickle cell anemia child who has been tested and determined to have the disease. There is really nothing you can do for them other than give them advice on how to treat the child in order to cut down on the pain. There is no way that you can offer the patient any hope that the disease will be cured. Senator KENNEDY. So what happens to them?

Senator TUNNEY. What happens to them is that many families spend thousands of dollars that they cannot afford to spend. They get themselves into a financial condition that in many instances could lead to dissolving the family. This is one of the reasons, by the way, that we need a National Health Insurance program.

Senator KENNEDY. What happens to the children of those affected with the trait?

Senator TUNNEY. Of the children who have the disease, 50 percent die before the age of 20 and almost all of them die before the age of 40. In addition, they have excruciating pain as you will hear in the testimony.

Senator KENNEDY. And the point you are making is that with this legislation, tremendous progress can be made with Federal help and assistance to avoid an increase of that kind of tragedy?

Senator TUNNEY. Absolutely.

Senator KENNEDY. You are emphasizing that we can provide counseling, and we can provide screening, and we can avoid the kind of personal tragedy and loss of life and all of the attendant kinds of tragedies which parents feel for their loved ones, their children, who may have the sickle cell trait or suffer from sickle cell disease. Would you agree with that?

Senator TUNNEY. Absolutely. Of course. With young people, I suppose it could have a tremendous impact on them. If both of them were just carrying the trait, it could have an impact on the decision to have children.

Senator KENNEDY. Would you not agree with me, that over on the floor of the Congress and in the Senate of the United States, we are constantly appropriating money for research, in a wide variety of different areas, like health, that are pilot or demonstration programs which seek to determine what ought to be done. But with this kind of money, we know that we can save lives.

We know for every dollar that is invested, we can really save lives and alleviate suffering, and alleviate hardship, and we know what the results are going to be; would you not agree that these kinds of programs ought to have a higher priority?

Senator TUNNEY. I could not agree with you more; 50,000 to 60,000 people in this country, as a minimum estimate, have sickle-cell anemia and, of course, hundreds of thousands more have the trait. Last year we spent $2 million for research at the Federal level, and nobody seems to know where the money went. I certainly hope you will find out by the end of these hearings where the money did go.

Senator SCHWEIKER. I do want to commend Senator Tunney for his interest and his leadership in alerting the people of the country and the Congress to this problem, and I read with great interest the rather sad statistics on this disease.

I just want to say, I think statistics are one thing, and I just wonder if we would not have more action if more Senators knew a little more firsthand that these statistics have an impact.

I know in my own case a 29-year-old member of my staff died of this disease just a short time ago, and I think if more Senators understood the impact of the statistics, we would have a lot more action than we do now. I commend Senator Tunney for his way of bringing to the public this alert, and I wish him to know that he will have our full support.

Senator TUNNEY. Thank you very much, Senator.

It is very kind of you.

Senator KENNEDY. I want to thank you very much, Senator.

We will try to move this legislation as fast as we can.
You can be assured of our support.

Senator TUNNEY. I just want to say, Mr. Chairman and Senator Schweiker, that I am most appreciative of the opportunity you have given me to testify. More important, I think that the extraordinary leadership you have shown, not only of being interested in related matters, but calling for hearings on this bill so soon after it was introduced demonstrates the depth of your commitment.

Senator KENNEDY. Thank you very much.

Our next witness is Hon. Dan H. Kuykendall, republican, of Memphis, Tenn.

Congressman Kuykendall graduated from Texas A. & M. University with a B.S. in industrial education.

After serving in the Air Force, he joined the Procter & Gamble Co., and was a manager in Corpus Christi and Houston before going to Memphis as general manager in 1955.

His activity in civic affairs in Memphis included work in the cancer crusade.

He first came to the U.S. Congress in 1966, and has been reelected ever since.

Congressman Kuykendall, we welcome you here before the Health Subcommittee. We know you are very interested in this matter, and that you are interested in the board issues of health generally. We want to extend a warm welcome to you.

We understand the Health Subcommittee in the House will hold hearings tomorrow. Hopefully with your very able assistance we can get this bill approved by the Congress before the end of the year. STATEMENT OF HON. DAN KUYKENDALL, A REPRESENTATIVE IN CONGRESS FROM THE STATE OF TENNESSEE

Mr. KUYKENDALL. Thank you very much, Mr. Chairman.

It is a pleasure to appear before you this morning to express my wholehearted support for S. 2676, the National Sickle Cell Anemia Prevention Act.

I wish to begin by complementing Senator Tunney, my old friend and former House colleague, for his yeoman work in this field.

As you all know, the funds that would be authorized by this bill are divided into two parts-$25 million a year for the next 3 fiscal years for screening and counseling, and an additional $5 million a year for basic research and testing of treatment methods.

In other words, sociological funds and scientific funds. That is precisely the way I view the entire problem of sickle-cell anemia as a two-headed monster, sociological and medical.

I think the distinguished junior Senator from California and I are in complete agreement, that the crying need in this field, and the general goal of this legislation, should be to increase public awareness and public understanding of sickle cell anemia.

It is undoubtedly true that heart disease and cancer kill more black Americans each year than does sickle cell anemia, but most Americans, black and white, are aware of the danger signals associated with these more familiar diseases.

Few Americans, black or white have ever heard of sickle cell anemia, let alone appreciate its danger signals and complications.