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Senator PELL. Should there not be one repository where all cancer data is located ? For example, you might want to know about an experiment that we run, and you do not want to query all the other centers in Europe as to whether or not they ran this experiment. It must be available quickly.
Dr. CLARK. Right now there is a repository for ongoing research, and it is at the Smithsonian, where you can request information on any subject that is being researched in a specific field and get an
Senator PELL. We are beating around the bush, I think.
The Smithsonian uses four by six cards. When will this data be deposited in what we call a computer?
Dr. CLARK. This program is in the process of evolution, and it will take some decisions on the site or sites of the data bank or banks and regarding the immediacy of its capabilities for response. We do have a target date for the five things I mentioned.
Your all-encompassing complete information data bank would take some while longer to program and make available.
Senator PELL. What I am driving at, obviously, is to assess whether we are not going backwards in this area. I would hope you would go ahead, and what we are talking about here is the single depository.
Mr. Weinberger said bricks and mortar. I do not care if it is stone and steel, there should be a place where this information is on deposit.
Î am not a systems training man, but I am very pleased with what
will have to query one by one.
From that stage we can see what is required for immediacy.
It is the matter of studying the priorities and needs of the scientific community. We have to assess the scientific needs from that data bank, and also the immediacy of recall. In other words, if I inquire tonight, do I need it tonight, or would it be all right if I had it in the morning?
These are things that are in the process of being decided, and I have been personally encouraged by the returns on this.
Senator PELL. But you say the process is being decided.
I believe that the law has already decided that we should go ahead and do this.
Dr. CLARK. I mean of the methods.
Mr. SCHMIDT. Senator Pell, we have hired some of the best data processing people we can find anywhere in the country, and we have borrowed some others, and they have been doing the best job they know how to do to carry out the mandate of the law.
Unfortunately, this information is not as neat, and as labeled, and as uniform as you would like it to be, and as it needs to be for computerization to have maximum effectiveness, so when your doctor in Providence calls up and asks a question, even if you have this computer, if he does not ask the question exactly like the man who put it in the computer said it, or asked it, then he will not get the
answer back. And as I said earlier, these discoveries and experimentations do not take a uniform form.
Now, we can, and we are compiling a great deal of information that will be available in Providence, and available in Houston, and available in Paris, and if you ask the right questions, the answers will come out, but if a man is about to do an experiment that has just occurred to him and he wants to know whether that experiment was done or not, I doubt very much myself, and I am not expert in this field either, but I have gotten to know more about it than I did before this assignment came along, and I doubt very much if you will ever have the commonality of language and the capability of programing to anticipate questions that your doctor or my doctor or somebody else's doctor would ask about prospective research experimentation.
We know what the mandate of the law is, and we are going to come as close to carrying out the mandate of the law as current technology and reasonable resources make it possible to do.
Senator PELL. Let me make sure I understand what you are saying.
Are you saying that a laboratory might consider going into an experiment, and would not be able, even if this mandate was carried out, would still not be able to find out if this experiment had been carried out in Germany, or some other country?
I would disagree. My understanding was that this kind of question could be taken care of.
Mr. SCHMIDT. That kind of question will require a description of the proposed experiment in total detail, and unless the man who has programed the computer knew how to anticipate that program there is no way you can make a computer answer a question that has not been anticipated by the man who programed the computer.
We can answer the questions that our people are smart enough to anticipate, but we cannot answer the questions that have not been anticipated by the man who programed the computer.
Senator PELL. But if every experiment has been carried out, has been programed into the computer, then the result of the experiment can be asked ?
Mr. SCHMIDT. But it has to be programed with a title and a word.
For example, we have been trying to get this computerization at the major centers themselves. That in itself is tough.
We have a program at Sloane Kettering today that if you ask a key word, no matter what it is, it can be the name of a drug, it will give you the listing of everything that is in our library that relates to that, but then if you punch the computer buttons that require all those answers you will get volumes of material out on that subject.
I think we have made considerable progress, and we can make more progress in the direction of this, but I do not think we will ever have it as neat and as nice as we would like to have it for the reasons that I have given you.
I just do not think you can anticipate all the programs and all the questions.
Senator PELL. But you do see an international data research bank as more than the label on the door and actually existing at some point ?
Do we have that, as yet?
Mr. SCHMIDT. I do not know whether the label is on the door or
SENATOR PELL. Under this label?
One, do you really mean, Mr. Schmidt, the optimism implicit in
All of these cancers appear to be susceptible to complete cure in a high percentage of the cases where early diagnosis is accompanied by aggressive treatment.
Mr. SCHMIDT. I think you will get different views from different clinicians about how high the percentage is, but there is pretty general agreement today that it is over 50 percent.
Senator PELL. For leukemia?
Mr. SCHMIDT. In childhood leukemia, if it is diagnosed at an early time and treated correctly from the beginning, and treated aggressively from the beginning.
Now, one of the problems is that we have only had these protocols that are producing these results—well, beginning 6 or 7 years ago and being improved all along. And so when you get a 5-year period with no symptoms and no indications of regression, you are hopeful that that is an indication of a complete cure.
You may find out 20 years from today that it was not an indica-
Senator PELL. Thank you.
Mr. SCHMIDT. I think that is the best information that exists today.
There have been a few little things that caused people to wonder
Senator PELL. Thank you.
Senator Javits. You are satisfied, with regard to the manpower and
Mr. SCHMIDT. I think, as a result of the responses we have recently had, we will carry on the work of the National Cancer Institute satisfactorily with the additional places that we are being given.
We still have problems that are common to all the Government, that a lot of our top people have not had salary increases for several years.
subject. licit in ormity ia and
I think there are about 70 people in the National Cancer Institute who make the same salary as the Director today because everybody is pushing against the ceiling, but that is a problem that is common to the Government.
There is one special problem, and that is a personnel problem that concerns us. It is a NIĦ problem specifically, but we still do not see a sufficient complement of nurses in the NIH Clinical Center to operate the Center at the levels that it should be operated at.
It seems to me that is a bad economy and we have made the point a number of times, and we will keep making it. But, apart from the nurse point, we have gotten pretty good satisfaction on our other specific personnel requirements so far as number of people are concerned.
Senator KENNEDY. Thank you very much, gentlemen.
Our next panel of witnesses are representatives from the Candle-
Mr. Richard Sullivan is chief counsel to the House Committee on
STATEMENT OF RICHARD J. SULLIVAN AND GRACE A. MONACO,
REPRESENTING THE CANDLELIGHTERS
Mr. SULLIVAN. Mr. Chairman and members of the committee, my name is Dick Sullivan, and with me is Grace Monaco.
With your permission, we would like to file the full statement for the record.
Senator KENNEDY. We will have it printed in the record at the conclusion of your testimony.
Mr. SULLIVAN. Mr. Chairman, you state we represent a group called the Candlelighters who are parents of children who do have or have had cancer.
At the present time, there are groups in 16 States, and in the ultimate sense we can say that we are the consumer here today.
The results of the research program is what kept our children alive for a certain period of time.
Through the continuation of this type of research program, we can eventually reach the solution we all desire. We are all extremely grateful to you, as chairman of this subcommittee, and your members, and your counterpart in the other body, Congressman Paul Rogers of Florida, for the lead you have taken in this important field.
There is nothing more important as far as we are concerned at this particular time than the welfare, well-being and the future of our children. As you know and I know and Mrs. Monaco knows, and the members of your committee know, this is one of the most insidious of all diseases. It hits children unexpectedly, and in many cases parents do not realize that cancer can hit their children.
It is the leading killer of children in the United States.
The 1971 Act that you gave to us as parents was indeed a fine Christmas present and once again, not to overdo the compliments, we do commend you, both bodies of the Congress and the President of the United States for writing this act into law.
We note the funding for that program was $1.5 billion over a 3year period of time. Unfortunately, like so many programs that the Congress has authorized, there has been a failure to fully fund the authorized figures.
There has been an up and down, a sliding scale, Mr. Chairman, and the money has been, in some cases, impounded or, unfortunately, been caught in tangles of other labor and health and education programs, and there have been several vetoes of this particular type of legislation.
Research is a continuing process that must be carried on. It cannot be done like a yo-yo jumping on a string up and down. And we would strongly urge this committee of the U.S. Senate and the House of Representatives and the President himself to see to it that in this particular category we move steadily forward in the field of research.
We must move ahead with this thing. It has to be the ultimate answer to what we all seek.
You are now considering a further amendment to the basic act of 1971. We strongly support and urge a continuing funding of this program at a higher level.
We would respectfully suggest to you, from our experience, that the figure be somewhere in the category of $2.7 billion over the next 3 fiscal year periods, taking into consideration the increase in cost and the rising inflation that we are dealing with.
This is one of the points we wish to make about a continuing funding for the research program.
The second point we would like to throw in, too, briefly is the question of impoundments. You are all familiar with that in many fields. You are, sir, very much so.
We know what has happened in the water pollution field and other vital programs.
This question of impoundment must be stopped. There have been successful suits in the lower District Courts which have required the executive to release these funds.
You have had legislation which has passed the Congress of the United States which clearly prohibits the impoundment of funds for public health services, such as the legislation we are concerned with today.
We would hope, in the final markup by your subcommittee, and eventually by the Full Committee, some sort of language which would prohibit the impoundment of these funds for this particular field would be contained in the legislation because of the vital necessity of what we are dealing with today.
In addition to this, Mr. Chairman, we have listened with a great deal of interest to the comments of Secretary Weinberger and Mr. Schmidt about the 15 cancer centers in the country. We naturally cannot speak to you from the technical expertise on health and education, but we can say to you from a very practical viewpoint,