Mr. Chairman, that we need more than 15 centers for only one reason, because of the physical factor.

We know from our own experience from people across the country that in many cases people have to go a day or more either for research or actual treatment. This is a hardship. It sometimes forces the family to move and can have an ultimate effect on the health and well-being of the children being treated.

We would hope there would be an expansion of these 15 centers. We would propose to you a figure of 33 or, if not that, we would leave that to the discretion of the National Cancer Institute, but somewhere along the line we want to stress the need for and the desire to expand the centers beyond the existing 15 because their work is vital to the continuing success, both from a research standpoint and from a health standpoint of children who are being treated and whose lives depend on the legislation you are considering

now.

In addition to that, we are concerned about the fact that you very correctly gave an independent status to the National Cancer Institute so it cuts through the maze of red tape you deal with in Government and allow them to report directly to the President of the United States.

We hear disquieting rumors to the effect that in many cases, they are being handicapped by the National Institutes of Health or the Secretary of HEW.

I am familiar enough to know we are not too sure of this, but we want to point out to you that you would reemphasize the independence of the particular group.

I was happy to hear yesterday when I talked to the people down at the budget, and as you commented today, that these positions are being released because these positions are vital and essential to the operation of the program.

It is nice to have money, but without the professional people to carry out the programs, what good is it?

This is another thing that was held up by some man downtown who determined he knew what to do when the Congress had made a decision about these positions.

Mr. Chairman, as we see our children treated, we know that the job is being done. We know that if it is to be done, it will be done at NIH, at Children's Hospital in Washington, D.C. and similar institutions across the country by the doctors and the people in the field. who keep this program going and give us hope.

Senator Pell has stressed and properly so in his comments both to Secretary Weinberger and Mr. Schmidt, Mr. Chairman, the need to develop an international data bank.

We respectfully suggest to you there is a need to develop a domestic data bank in this country, Mr. Chairman, and let me tell you why.

There is, we find, not in a critical sense now, in many cases, an appalling lack of knowledge in the field on what is a cancer.

In many cases, there is a misdiagnosis by a physician. Sometimes it takes two or three doctors before the ultimate diagnosis is made that

the child has leukemia or has a solid tumor. Valuable time is lost in which that child could be treated.

We propose to you a domestic data bank, Mr. Chairman, to correlate the information across the country, tie it in so that doctors, the medical people, the researchers, will know what is going on, and the parents themselves will have a better knowledge and understanding of what the program is and have more confidence and more support when they feel their child is getting the best treatment possible under these circumstances.

There is no more difficult period for a parent, Mr. Chairman, than that moment when the doctor comes to you and tells you your child has cancer and the possibilities are that he has 1 year or 18 months or 2 years to go; it is helpful if they can also be told that all right, this diagnosis and expectancy may be true, but somewhere down the line, hope may exist, and the best possible information is going to be made available to realize that hope.

Under those circumstances, we think there should be a domestic data bank. I do not say this in an emotional sense. I say this in a very practical sense, that we figure there is a need, a crying need, to take a long look at creating a domestic data bank, and there would be no better place for it than the National Cancer Institute itself.

I may be talking a little too long, but I would like to make one final point.

There is a need to continue and expand the fellowship program. We know from practical operation in Children's Hospital here that these young doctors, who are coming in to research and treat our children, depend on the subsidies they are getting from the fellowships. These doctors are acquiring the background and training through this program to eventually become the experts.

We would like to conclude by thanking you for the opportunity to be with you today. We think the committee has done an excellent job. We think the President has done an excellent job, the Secretary, and everyone else.

We are simply here to say and stress the vital need of and urgency for the research program to continue.

We think the supportive clause should be in there and hope and pray that you will come out with a strong bill and get unanimous support.

I thank you for the time of the committee.

Senator KENNEDY. Thank you.

[The prepared statement of Mr. Sullivan follows:]

STATEMENT OF THE CANDLELIGHTERS

Before the

Subcommittee on Health

Senate Committee on Labor and Public Welfare

January 30, 1974

We represent the Candlelighters, a group of Washington area

groups in ló states. My name is Richard J. Sullivan, and with me
is Mrs. Grace Anne Monoco. One of the chief aims of our group is
to improve federal cancer research programs. We know that the lives
of our own children have been extended and, in some cases, saved
through cancer research efforts funded primarily by the federal gov-
ernment. In the ultimate sense, we speak for the consumers of can-
cer research. Since our children's lives depend upon cancer research
we have become sensitive to deficiencies in the program as well as
the needs to expand it.

Under the leadership of this Committee, and particularly of the
distinguished Chairman, Senator Kennedy, as well as his colleague in
the other body, Mr. Rogers, the Congress enacted the National Cancer
Act of 1971 which the President signed into law on December 23, 1971.
This "war on cancer" was a Christmas gift to the nation and all of us
are profoundly grateful to you, to the Congress and the Chief Executive
for this initiative in an area that touches the lives of every American
family. As is true for all initiatives, this one, too, has had some of
its bright hopes unrealized, and we wish to discuss some of these de-
ficiencies in this testimony and perhaps suggest some improvements.

The first and foremost item which we wish to raise for the

consideration of the Committee is resources.

The National Cancer

Act of 1971 authorized appropriations of $400 million for FY 1972, $500 million for FY 1973, and $600 million for FY 1974. The actual amounts appropriated fell far short of this goal principally because the President requested less, and repeatedly vetoed appropriations which came close to the authorized amounts. Added to the problem raised by these lesser amounts was the impoundment of funds which aggravated an already tight situation with respect to research, and which has seriously retarded the national cancer program. It must be clear to anyone that cancer research is not something that can be turned on and off. Impoundment has without a doubt a very long negative effect on the progress of the research projects. Our children profited from the cancer research investment made in years gone by, but the loss of momentum resulting from underfunding or impoundment will seriously-affect the millions of Americans who will develop cancer in the years ahead, as well as those presently suffering from the disease. The Administration has compounded the funding problems related to research by impounding positions as well as actual resources. It was only a public outcry which caused the Office of Management and Budget to release 107 positions for the National Cancer Institute required not only for research projects. but also for the cancer treatment, itself.

The $1.5 billion which you authorized in PL 92-218 did materialize in lesser amounts, and then only grudgingly. The 6.0 million impounded from the FY 1974 has allegedly now been released under conditions which

make it questionable that the maximum research yield will be obtained promptly. We find it very difficult to obtain adequate information on funding and we hope that this Committee will press the Administration with vigor to determine whether or not the FY 1974 appropriations have already been released.

Despite the budget shortfalls, and despite the impoundment and despite the bureaucratic harassment, the National Cancer Act of 1971 has been a good and wise investment in the wellbeing of our country and our people.

We sincerely believe that real and concrete strides have been made which have benefited our children. We must not stop or falter. The legislation must be extended. In terms of resources, we would propose to Congress to authorize $2.7 billion for the next three-year period. We would further propose that the language presently contained in Section 601 of Public Law 91-296 forbidding the Chief Executive to impound public health funds should be carried into the new legislation, and meanwhile this provision should be extended beyond the June 30 expiration date. We feel that $2.7 billion divided over a three-year period is a realistic amount, given the base of the first three-year period and the high rate of inflation which has lessened the value of the amounts initially proposed in the 1971 Act.

We further ask that the limit of 15 national cancer research centers be stricken, and that the legislation leave the number to the discretion of the Director of the National Cancer Institute. If this is not possible, we would ask that the number be raised to 33. We know

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