Dr. ZAPP. Well, I very frankly could not answer whether it could be used, but I think the advisory committee will probably get into this later.

For instance, perhaps the greatest needs are by the people who need transfusions and hospitalization at key times.

Senator KENNEDY. We will have to recess just briefly in order to cast a vote on the Senate floor.

We will recess for 10 minutes.

(Whereupon, the hearing was in short recess.)

Senator KENNEDY. The subcommittee will come to order.

We had talked a little bit before about the resources that were being expended by NIH, HEW, in terms of this disease.

Could you tell me, I understand Senator Schweiker earlier asked you where, if you could, track those resources, and is there anything you could tell us about that?

Dr. ZAPP. In fact, I appreciate the opportunity to clarify the line of questioning.

I think the question was related to Senator Tunney's statement, earlier in the hearing this morning, that this was not new money. I think perhaps that created an illusion that this was just money used for sickle cell before, but only now labeled sickle cell, and, therefore, was not new. This, in fact, represents not only an additional $5 million of new money, but is added to the $1 million that was expended on sickle cell disease research last year by the NIH.

I think the confusion arose as a result of the fact that in the submission of the 1972 budget, there was $22 million of research training grants funds which was transferred from the Institutes into the Bureau of Health Manpower Education, to be administered by the Bureau, as opposed to having been previously administered by each of the separate Institutes. In so doing, about $42 million from the research training grants program of the National Heart and Lung Institute was transferred. So that with the additional $5 million that was put into the Heart and Lung Institute as lead agency for the sickle cell disease program it looks like what was happening was a renaming of the money, but it was totally unrelated.

Senator KENNEDY. So this is in effect new money?

What was it being used for before?

Dr. ZAPP. Well, it was money that was not in the Department before.

Senator KENNEDY. Do you know for what it was being used?

Dr. ZAPP. Well, I really could only address the money that we have within the Department. It was essentially new funds requested by the administration for the Department's activities.

Senator KENNEDY. Now, as I understand, you have had $211⁄2 million allocated for the establishment of comprehensive research and community service centers, a million dollars to be allocated for the establishment of model screening and education clinics, and a million five for applied medical research; is that correct?

Dr. ZAPP. That is correct. We were following the recommendations of the new sickle cell disease advisory committee on how we could most appropriately use the funds.

Senator KENNEDY. Did they make any dollar recommendations?

Dr. ZAPP. It is my understanding they did. In this case, I will turn to Dr. Beckles, ex-officio member of the advisory committee.

Senator KENNEDY. Do you remember what it was?

Dr. BECKLES. These are the recommendations of the committee, as recorded in the minutes, Mr. Chairman.

Senator KENNEDY. In terms of the amounts?

Dr. BECKLES. The same answer; yes.

Senator KENNEDY. What was the study; was that an in-house study done by HEW, or an independent outside group?

Dr. BECKLES. The committee, Mr. Chairman, it is an outside committee created by the Secretary to advise the agencies in HEW as to how they would best spend moneys that are appropriated.

Senator KENNEDY. Do we have a copy of the study-could you make that study available to us?

Dr. ZAPP. Earlier, along with my testimony, I asked the permission of the Chair to submit it as a part of our record.

Senator KENNEDY. It just seems the amounts in terms of medical research are extremely modest, and in terms of screening and education clinics, once again, they seem modest.

I do not see why you would not be setting up screening clinics in all of the neighborhood health centers: why couldn't you do that?

I have visited personally; 18 to 20 of the neighborhood health centers across the country. Most of them are in the urban centers, in disadvantaged areas, and it just seems to me they have got the facilities, most of them are fairly ample, they have got the room that I suppose it would take to adequately run a sickle cell anemia program. Why shouldn't the Department establish screening tests on a voluntary basis in terms of neighborhood health centers?

Dr. BECKLES. Under the Mental Health Administration, under the community house services, the agency which funds the neighborhood health centers, we plan to establish program components in these neighborhood health centers, and so on, for example, in clinics using the child health services funds, clinics in which people come for family planning services, in essence, wherever clinics exist, that serve large populations that are black, this would be a component service that is added.

This is not a part of the $5 million, and we considered in the intramural, if you wish, programs of health services.

Senator KENNEDY. You mean you will be expending more?
Dr. BECKLES. More in addition, yes.

Senator KENNEDY. How much more?

Dr. BECKLES. This is not a level that has been established, Mr. Chairman.

Senator KENNEDY. How do we know what your program is?

If it has not been established yet, how do we really know how extensive it is?

Why would you not want to establish a screening program in every neighborhood health center?

Doctor BECKLES. I think there are two problems here. One would be, if we, for example, if the United States established tomorrow, or launched tomorrow a mass screening program, I think that the yield, the numbers of people identified, who would need a programed followup counseling, if only on that level, for the trait people, would

create the need for the level of manpower in counseling with that skill that we do not now have, and I think it takes a phased effort in order to do that.

Senator KENNEDY. Are you saying then that if you tried you could certainly find people in need of sickle cell assistance? And that you would find a lot of people who are affected by this tragic disease and its complications, but that you do not have the manpower to cope with this after you would locate them or identify them?

Doctor BECKLES. Yes, Mr. Chairman. I think, for example, we talked earlier when we alluded to the broad public concern that has been created because of the increase in heightened emphasis through the media, the work by various private organizations, and the whole increased level of attention focused on this disease, and the anemia during this year.

I think the offshoot of that is that many people hearing about sickle cell anemia for the first time are in somewhat of a quandary as to what it is, and how are they affected.

Senator KENNEDY. What is the best way to meet that quandary; is it not to have a program or to have a program?

Dr. BECKLES. To have a program adequately staffed manpowerwise, and I think in order to have that level of manpower throughout the Nation, that it would envision varying intensivity of program over a time period.

Senator KENNEDY. Are you requesting funds now for additional manpower that will be trained; are you up here for that?

Dr. ZAPP. Mr. Chairman, at least from our standpoint, I would like to put it in the way that I consider it to be in context.

Senator KENNEDY. I think this is in context. I think it is a very understandable context. The simple fact is that this administration is either unwilling or unable to meet the health needs of 2 million Americans who are affected by a very serious disease-sickle cell anemia.

Dr. ZAPP. We started out from ground zero. We went out and selected, I am sure you will see from the makeup of the advisory committee, some of the most competent people in the country to consult with us and advise us on how to establish a program. This has all occurred just within the last few months. An inventory of all the private groups, as well as all the public groups, some Federal, some State, some local, that are doing sickle cell screening, many of which we are unaware of at this time, and to establish the commensurate amount of manpower to go along with this screening, and development of methodology, all require time.

Senator KENNEDY. The only thing that troubles me is for you to come on up here and say, we have got all of the legislative authority, and we are allocating this new kind of money; you are describing these kinds of programs, giving the kinds of demands, and claiming that on a voluntary basis the need will be met, but then saying that you do not want to spend any more, because you do not have the other kinds of resources, like manpower, facilities, and equipment. And then you come up here and still fail to request the resources or to describe any plans to do so.

Dr. ZAPP. Mr. Chairman, that is only one facet of it.

Senator KENNEDY. What is the other facet? That is one limitation.

Dr. ZAPP.. You have to have not only the manpower, but you must have the facilities.

Senator KENNEDY. Let us take the many neighborhood health

centers.

Dr. ZAPP. The neighborhood health facilities most probably would be one of the ideal ones. But there are a variety of screening tests that are used, and even though some of them are very simple tests, if you get a positive reading, you then have to have an established facility ready to offer further service to those people.

Senator KENNEDY. Let us get back to the facilities needed for adequate support of sickle cell anemia programs.

Can you not do that in the existing neighborhood health centers with the facilities that are in existence now?

Dr. ZAPP. You could probably do the screening very easily, but if you have a positive reading, and need a second much more complicated examination, and you do not have the proper type of equipment, what have you done then?

Senator KENNEDY. Now, we have facilities, and we have training and now equipment.

Are you prepared to come on up here and make a request to the Congress for additional equipment?

Dr. ZAPP. Well, what we are prepared to do

Senator KENNEDY. Just answer. You say you need additional equipment. If we are going to evaluate the seriousness of the administration's attitude on this question, I think it is perfectly within our purview to find out if you are really serious.

You have come to us with a rather limited budget, and you say you can only step before you run.

You say you cannot step because you have not got the facilities, you have not got the equipment, and you have not got the manpower to carry this on.

At least, this is what I gather from your response.

Dr. ZAPP. I say those are all essential components.

Senator KENNEDY. Are you coming up here requesting, are you prepared, is the administration prepared to come on up here and say we need x amount of money in terms of equipment, in terms of facilities, in terms of manpower?

If you can show this, then I think, at least on my behalf, and in terms of the members of the Health Subcommittee, then we will be convinced that what you are talking about is more than rhetoric, and you really mean business.

Can you give us that assurance? If not, I think we are completely within our rights to say we will go on our own then.

Dr. ZAPP. I think before we do that, or before anybody could do that, things not related to what you could do with the authority must be done. We have already stated our position on that. An inventory on a national basis of the facilities, of equipment, of the manpower, of the education and counseling service has not been made as yet. We are just starting, and we are going from perhaps a crawl to almost an upright and rapidly mobile stage.

Senator KENNEDY. That is your evaluation in terms of the dimension of the program, which will put $1 million in 10 to 20 screening and educational centers. That amounts to $50,000 per center for 20 centers.

That does not seem to me that you are going from a crawl to a standup position. As I see it you will continue to crawl. With $50,000 per center you might be able to afford two professional personnel, but I can see no way for you to get any equipment, with that meager sum; it does not seem to me you are moving from a crawl to a standup position. The cancer program is an example of moving toward a commitment to resolve a basic health problem. We have just increased the cancer program by $100 million this year.

Dr. ZAPP. The Cancer Institute was formed in 1937, and there has been a continuous awareness and fear of cancer.

Senator KENNEDY. You say you are doing all kinds of research in terms of biomedical research. You say you are sufficiently concerned about this to establish a task force, and you say you really want to pour some resources into sickle anemia research.

That is what we in the Congress would like to see. We hope that the superb facilities over at NIH will be able to respond, not with a million five, but with substantial resources. I am talking of maybe $8 to $10 million, as a start.

Dr. ZAPP. I am sorry Dr. Ringler is not here. I would question if in biomedical research you could take a program at a million-dollar level and put $7 to $8 million in it, and in that same fiscal year have the research competence, to use it properly.

The same thing was faced in cancer, where the commitment was there, but to request and use whatever resources can be reasonably used, you have to have people that are skilled and have a background in that research.

Senator KENNEDY. You and I know the process. You know the kinds of restrictions you are under in terms of a budget. I do not question one bit your responsibility in defending the administration's position in terms of budget restrictions on this, Doctor. I respect that.

What I want to know is whether there is a feeling here of having to respond to the problem of sickle-cell anemia in terms of the information about the critical need for helping those who suffer with the disease. There is a difference between taking the administration's position and expressing the human or personal viewpoint on these kinds of issues.

It surprises me to hear you suggest that you could not expend a good deal more resources to perform medical research on sickle-cell anemia. I am very surprised at that response.

Second, I am distressed to hear you claim there are addditional problems in terms of manpower. As you know, we just passed the health manpower legislation, we had extensive hearings on that, and we did not hear anything in terms of what the administration wanted in terms of training personnel; and if you need additional kinds of resources in terms of facilities, in terms of equipment, we should hear

about that.

Dr. ZAPP. I agree with the Senator, but I think the manpower area is a classic example of a new kind of flexible authority which has now been passed by both Houses. This same commitment to sickle-cell disease, the need for the kind of manpower there, has to get back to the people running the medical schools, the people who are running the different medical health professional schools in the country, to begin to develop