I represent a State which probably has the largest number of Americans who are black of any in the United States, including New York City. I know how serious this problem is. It is a unique problem, and while we constantly shy away from any note of difference between white and black Americans, in this particular case we are dealing with a physical manifestation which seems to have the unique and tragic impact upon a particular section of the population.

I think the Chair is quite justified, therefore, in adopting the approach it has and leading us toward help for this particular disease. We have done the same thing for kidney disease, heart disease, and stroke, and we are trying very hard to do it for cancer. I see no reason why we should not act in this special field as well; and for that reason, I have associated myself with the chairman's bill and will do my best to help him get it passed.

Thank you, Mr. Chairman.

Senator KENNEDY. Thank you Senator Javits.

Our first witness is Hon. William Clay, the Representative from the First District of Missouri. Congressman Clay received his B.S. from St. Louis University and shortly afterward became the alderman for the 26th ward of St. Louis. He is also a former executive board director of the NAACP's St. Louis chapter and a member of CORE. He has worked hard to advance job opportunities for Negroes in Missouri. Elected to the 91st Congress in 1968, he was reelected to the 92d Congress.

Congressman, we want to welcome you here. I had a good opportunity to have you appear before two committees of which I am a member, the Judiciary Committee earlier this week concerning the qualities of nominees to serve on the Supreme Court, and this morning on this important matter, which shows the range and breadth of your concern and interest and we always welcome you before the subcommittee and we want to thank you for coming.

STATEMENT OF HON. WILLIAM CLAY, A REPRESENTATIVE IN CONGRESS FROM THE STATE OF MISSOURI; ACCOMPANIED BY DR. ELMER ANDERSON, CHAIRMAN, RESEARCH FOUNDATION FOR SICKLE-CELL ANEMIA IN THE LOS ANGELES (CALIF.) AREA; AND DR. ACCIE MITCHELL, BOARD MEMBER OF THE FOUNDATION Mr. CLAY. Thank you, Senator. It seems like I am spending more time on this side of the Hill than I am on my own side.

First of all, I would like to express my gratitude to you and the other members of the subcommittee for extending an invitation to me to come over and testify on this very crucial piece of legislation.

Accompanying me this morning on my right is Dr. Elmer Anderson, who is a medical consultant in the Los Angeles area. He is also the chairman of the board of the Research Foundation for Sickle-Cell Anemia in the Los Angeles area. He has 23-years experience in this field. On my right is Dr. Accie Mitchell, who is a board member of the Research Foundation for Sickle-Cell Anemia in Los Angeles, and he has been devoting his time and efforts for the past 5 years in this area. I would like to start by saying that in my opinion I think that sickle cell anemia is the most neglected disease in this Nation. Even the

smaller charitable organizations are raising more money annually for less important causes than can be raised for sickle cell anemia, which is a killer. Many small charitable organizations in Los Angeles County raised more money in 1970 than the Sickle Cell Anemia Foundation has raised in the last 10 years. The total net income for the Sickle Cell Foundation in the city of Los Angeles, which has a population of some several million people, in 1970 was $6,000. The average total cost per patient who has a severe sickle cell anemia crisis is between $2,000 to $3,000 per hospitalization. On the average, consider the complications of sickle cell anemia which could be-bone lesions, pneumonia, or pulmonary emboli or cardiac complications, et cetera-you will see that the hospital cost and cost of outpatient care would be more than the average family could afford over a period of time.

Let me emphasize this is not a one episode-type of illness. These patients have to be seen approximately every 6 to 8 weeks on an outpatient basis and, on occasion, more often in times of stress. So what we are talking about here is a disease entity that people have been afflicted with for many years and a disease the structural design of which we know quite a bit. Yet we have no definitive treatment or ways of stopping thousands of people from dying every year, because of the manifestations of this disease.

So what we are emphasizing, gentlemen, is not the idea that we are asking for $25 million for programs for testing, research, and education; but a chance to get this disease in its right perspective so that we can save lives. We are very late in finally now becoming aware of what we should be doing. I think at this stage of the game it would benefit us all to appreciate the fact that we should stop politicking and devote our energies toward creating centers where these people can go for screening and good definitive treatment and research facilities where they can do research specifically for sickle cell anemia and not as an afterthought while considering another project to work on. I suggest the following:

1. The development of screening centers in urban areas conducted by paramedical personnel under the direction of a medical doctor.

2. Development of education programs in urban and suburban areas so people will understand and seek advice about the disease instead of living in fear of whether or not they have it. This would include in many instances education of medical personnel who have no knowledge of how to treat this disease.

3. I recommend development of research centers in large urban areas which have met the qualifications of the National Sickle Cell Anemia Foundation Board. This measure is proposed in order to intensify the concentration on research of sickle cell anemia and not as a minor project. In too many instances we find that research on sickle cell anemia is only an appendage of research on some other projects.

So, for those three reasons primarily, we are advocating that the course of this legislation follow in the direction that we have proposed. Mr. Chairman, I wish to thank you again for permitting me to come and testify, and if there are any questions that you would like to ask I have with me two people who are well qualified to answer them.

Senator KENNEDY. I was interested, Congressman, are there any voluntary programs in your district in Missouri, efforts that are being made to develop programs or screening programs?

Mr. CLAY. Well, there are a few efforts in the St. Louis area that we are attempting to get off the ground. One of the problems is that we do not have the capacity for raising the kind of money that is necessary. There are some dedicated people in my area but they do not have the resources. There are some people who are attempting to counsel and test those who may have the trait; but other than that, there is no effective kind of program in my community or in any others, to my knowledge.

Senator KENNEDY. Do you have a neighborhood health center out there in your district?

Mr. CLAY. Well, we have three neighborhood health centers that have been financed by the Federal Government.

Senator KENNEDY. Do you see any reason why those neighborhood health centers could not be the facility in which these screening programs could be readily made available to the community? Do you think that could be sort of an umbrella type of organization to get this kind of information out into the community?

Mr. CLAY. Well, I think it could, Senator, but I think what we need to do is put particular emphasis on this program; and if we are going to use the neighborhood health centers, we ought to have a special section that is funded and financed by this Government that will accompany all of the neighborhood health centers.

Senator KENNEDY. It is not being done now?

Mr. CLAY. It is not being done now.

Senator KENNEDY. And I think that what you are expressing is representative of the people of your community as well as many other communities, that there is a desire of the people to have it done and there are existing facilities in various communities, I think. There is a will and desire for this kind of program. You have mentioned the voluntary efforts that are getting off the ground in your community and we are hearing examples of this in practically every community across the country, and I think those of us who are aware of the enormous potential over at NIH know that they have got the ability to dramatically increase resources for work in genetics and other kinds of biomedical research to help in this particular area. I believe the case has been made for this kind of legislation, which provides additional resources for biomedical research, additional resources for screening and supporting local organizations that have already begun to work in this area.

I think we have the existing facilities in a variety of different communities, neighborhood health centers and other community facilities to house the facilities needed to help with sickle cell anemia. I think that what we have heard in this hearing makes a strong case for legislation of this type, creating a specific program to combat a specific disease.

Mr. CLAY. I would hope, Senator, that it is specified in the legislation that comes out of committee, that the research in this area is to be independent of other research programs, because what seems to be happening is that this particular disease is taken very lightly even in the medical field. And when you merge those research funds with all of the other types of research, I'm sure that the programs that have the big lobbyists supporting them are going to be able to get a vast amount of the moneys for research in some of the other more popular,

if you want to say that, crippling diseases; and I would hope that the research money for this particular disease is specified for exactly what it was intended to be spent for.

Senator KENNEDY. You are suggesting, therefore, that we earmark money for this kind of research. You are obviously not satisfied with the sort of general expression of concern by the Department of HEW, even though that expression may be in good faith. You want to have it so the money is earmarked and we can assure that research is done in this particular area?

Mr. CLAY. Precisely.

Senator KENNEDY. At least in the dimensions that are outlined in this bill, which are terribly, terribly modest compared to the hundreds of millions of dollars that are being expended in medical research annually. There is $1.5 billion a year being spent on medical research by the Federal Government, $1.5 billion, and you are asking for $5 million of that just to insure that research will be done on sickle cell anemia. I do not see how anybody can dispute that kind of a request or find unreasonable. I think it is such a modest request.

it

Mr. CLAY. I agree with you.

Dr. ANDERSON. Mr. Chairman, the point we are trying to make is that in the Los Angeles area, we have made tremendous efforts to get programs this year. Our board of supervisors gave us money for a community program, $23,000, and that amount would only test a limited number of patients. The problem is not just the cost of doing the tests themselves, which does not take into account the research, but how you get to actually find the cases, identify them and counsel these people so that they can avoid the problems of complications which add them to the enormous cost from the clinical standpoint.

We think that the funds that have been mentioned are totally inadequate for a national program, for one thing; and secondly, as Representative Clay has said this has to be given some special priority in the whole gamut of research in the health care system; otherwise, it gets lost as a very minor problem, which we think is very unfair to the people who need this care.

Senator KENNEDY. The case is made by the administration that we do not have adequate trained personnel to utilize this money effectively. We all know that the very modest sum of $25 million for a nationwide program can only be a start. We do not have the trained personnel nor the facilities nor the equipment to fully operate the kind of sickle cell anemia program that will effectively control this problem. These are the three areas in which the administration indicates there is a shortage. Therefore, they feel that the request for $6 million as mentioned in yesterday's testimony, is much more realistic in insuring the adequate expenditures of taxpayers' funds since it is not possible at this point to do everything that would be required for a full-scale operation.

What could you tell me about the adequacy of personnel out in Los Angeles, for instance, or the ability to be able to utilize these resources described in the bill before us today? I would think you would almost be able to take the whole amount of money from this bill just for the Los Angeles area.

Dr. ANDERSON. I can assure you we could take that and more. In Los Angeles, we have a master plan being developed, and this is all on a voluntary basis. Our foundation has been active for 12 years. We have worked and we have actually sponsored some summer camps. We started out with a camp for these kids and the establishment told us it could not be done. I think some of the other expert witnesses

Senator KENNEDY. You have been working how long in this area? Dr. ANDERSON. This particular organization I am with, the Sickle Cell Foundation of Los Angeles, has been in existence for 13 years; and 4 years ago we started our first summer camp. We took kids who were told they could never go to camp. This gave these kids new hope that their lives were not to be snuffed out before they were 20. The first year we took 20, and last year we took 75. We had requests for about 200 kids to go to camp. So just in this area we had a backlog of people we could give service to if we had the funds.

Our project in Los Angeles for testing that was just done as a voluntary thing by physicians and paramedicals-as noted in the recommendations here, we are talking about the use of the whole team approach to doing case findings; not just doctors, but people who work with us every day in the paramedical field.

We have also traveled throughout the South. I come originally from Orleans Parish in Louisiana and Hancock County in Mississippi, and we know we have colleagues in those areas who are willing to start programs to help these people if they can have the funds.

Senator KENNEDY. What can you tell me about your knowledge of other communities? You have mentioned it just at the latter part of your comment here. Could you expand that a little bit? Are there other voluntary programs that are taking place in other cities that you are familiar with that have the interest and the personnel to be able to move ahead in terms of screening?

Dr. ANDERSON. Yes. We have had two meetings. One of the first meetings this year was hosted by us in Los Angeles where we were trying to get together a federation of sickle cell groups throughout the Nation.

As you know, Senator Tunney was our guest at that time, and we had representation from five of the major areas of the Nation. Nation.

We had another meeting here which Dr. Scott and Dr. Ferguson hosted at Howard primarily, with many of the people locally; and we have another meeting next month, and there is a growing interest in a type of federation approach.

I have talked personally with the Directors of the March of Dimes about the idea that they might lend us some expertise so that we can develop that type of grassroots thing throughout the Nation. I think that it is timely and people are certainly very interested in working in this area if they can just be given the support and funds that we think they deserve from the tax structure.

We have written to HEW in the past and in some cases they have not shown us the courtesy of answering letters. I have personally written to the President on four occasions. I think I have gotten two answers, never really to the point of the problem that we think this represents.