Senator KENNEDY. Do you find that you can develop these programs in terms of initial screening programs relatively inexpensively, or what are the great expenses in terms of the programs? Where do you really run into the cost? Dr. ANDERSON. We have gone so far as to talk to the Offutt Co. who produces these. They were originally charging us 50 cents a test, and if you want to do 10,000, it immediately runs your limited budget up. Senator KENNEDY. Is it complicated to give the test? Dr. ANDERSON. We had problems initially for the first part of the test. The sickle-dex test was costing us 50 cents or a dollar. That price could be brought down if we were doing it in large volumes. As we mentioned, we could have paramedical personnel do the tests and we supply the equipment. Senator KENNEDY. You developed the trained personnel to administer the tests relatively easily? Dr. ANDERSON. Yes. Senator KENNEDY. And do you know as a doctor whether there are people who would be willing to be trained to give these tests? Are there members of either the black or white community that are prepared to be trained to help administer the tests? Dr. ANDERSON. Yes, sir. We think there would be a lot of people. Senator KENNEDY. Or you might get returning paramedical personnel from the military services to be trained for these programs. Dr. ANDERSON. That would be part of the center's action, as we mentioned, in the development of the project. Mr. CLAY. Dr. Mitchell has been giving these tests and I want him to explain to you some of the problems that he encountered as a result. Dr. MITCHELL. The main problem that we have out in the Los Angeles area in the ghetto is the fact that we do not have the money to test these people. It is simply because of the fact that there are no funds available. We have the personnel and we have the doctor volunteers who are willing to go out and see that these tests are done and carried out properly, but as long as we do not have any money we run into a problem of calling off tests; and then people become dissatisfied with the way we are conducting the tests. It is simply because we do not have the money and they cannot be tested when they want to be tested, and therefore the cause becomes a little bit unpopular and we lose a lot of people that we could have found in the first place. The other thing here is that in the Greater Los Angeles area there is no facility per se to treat sickle cell anemia. We have the county hospital where there is a very fine pediatrician hematologist by the name of Dr. Powers, who takes care of most of the serious sickel cell patients in the city; but the fact is that there is no place that these people generally can go if they are really bad off. This is what we need, some type of facility where they can go if they have a crisis. Children's Hospital was asking for a research facility for sickle cell anemia, but they cannot come up with the funds; and I think Dr. Anderson has spoken with the people at Children's Hospital about Senator KENNEDY. What is the willingness of the members of the community to take these tests? Do you find that there is an interest in it? Are they willing to take these tests if it is given at a decent time and under adequate kinds of circumstances and in clean facilities? You mentioned the problems that you are confronted with, that there is no place they can do it out there; but what can you tell us, as people who have worked in this field, Doctor, for some 13 years; are people willing to be tested? Do they want to know about sickle cell anemia. Dr. ANDERSON. Very much so. We had one example. We had what we called "Sickel Cell Month" during the month of September. On one occasion, just one of our neighborhood newspapers had a note that there would be a clinic testing, and I think on 1 day we had to turn away something like 250 people. Now, with the pressures that our small voluntary group has put on the establishment, as I call it the health department-we are now having evening clinic testing programs about once a week or twice a week in some areas. These are always to capacity so far as people coming to be tested. Senator Kennedy, I have also heard some feedback on this, that people are afraid that if you tell them what they have you are going to create hysteria. As a clinician Senator KENNEDY. We heard that yesterday. Dr. ANDERSON. I think that is the most asinine kind of thing-forgive me for getting so upset, but it is like the young woman who comes in with a lump in her breast-she might be frightened, but she wants to know what it is. I think this is how most of the black people feel who are aware of the fact that health is an important factor. If they have a problem, they want to know about it. We think any human being has a right to know about any health problem he might have, and certainly counseling that person to deal with his hysteria, which I think is totally unfounded Senator KENNEDY. Do I interpret your comment that if we were to provide what I think is an extremely small amount of resources for the development of an educational, screening, and testing program, that people would take advantage of it and welcome it in terms of your experience in working in this field for 13 years, rather than being frightened by it? Dr. ANDERSON. That is my opinion; yes, sir. They would take advantage of it and be very, very thankful and happy to have it. We think that we owe this to our citizenry, to our patients. We have an obligation. Every young person getting ready to get married wants to know something about what he might be passing on to his offspring. The other point that I wanted to make in this; my other interest in this became more acute about 5 or 6 years ago when girls were being given birth control pills without regard to whether they had sickle cell disease. At the UCLA Medical Center, each week at our radiological council, we were finding girls with lung infarctions, blood clots in their lungs. I brought this to the attention of my colleagues and we thought no girl should be put on the birth control pill if we did not know if she had sickle cell disease or not, because a lung clot could kill her. I have tried to teach this to medical students and colleagues. The British reported this years ago and we in America could never even come to grips with this as a complication. We think that there is certainly an interplay between things that are being done for the community that makes it mandatory that we know when a person does have this type of blood condition. Senator KENNEDY. Have you talked to the deans of the medical schools-Los Angeles is one of our great medical centers. We visited out there with the health subcommittee and we have seen for ourselves and visited the marvelous new hospital in Watts, the Martin Luther King Hospital. Have you talked to the deans of medical schools out there or met with them? Could you tell us what kind of reaction you are getting from the medical schools in terms of trying to acquaint the younger medical students about this problem. Are they doing anything about it that you know about? Dr. ANDERSON. I think, as I said to someone Senator KENNEDY. Have they ever come down-has the UCLA medical school ever come down and talked with you? Dr. ANDERON. UCLA medical school does not have a primary program in this area. I have talked with Dean Melenkoff, who I am associated with on a number of projects. They are currently willing to accept money from us to start some projects. Senator KENNEDY. They are willing to take money from you? Senator KENNEDY. They will take money. Dr. ANDERSON. We recently had a telethon. This was put on by the citizens. I wish the Senator could have seen some of the enthusiasm. The volunteers put on the telethon for 3 days and raised $60,000. We are going to give some of this money to the schools, but I think it should be the other way around. Senator KENNEDY. It certainly should. Mr. CLAY. In response to your question, I think perhaps we might be able to give you a description of what the commitment of the medical schools is in this area by citing an example. One of the most prestigious and most prominent medical schools in this country is located in the State of California, and its total research in the area of sickle cell is performed by a medical student who composes the total number of people involved in the program; and I think that this demonstrates the kind of commitment or lack of commitment that medical schools in this country have in the field of sickle cell. Senator JAVITS. Would the Senator yield for one question? Senator KENNEDY. Yes: this is an indication of the fact that the research money for the medical schools comes from NIH, and if they do not put a sense of priority on sickle-cell anemia here in Washington, then we cannot expect to get it out in the medical school. We would like to see the medical schools themselves generate a greater interest in this area. So we are going to telegram the American Association of Medical Colleges today and ask them what is their position on this legislation and what medical schools all over the country are doing in terms of developing the curriculum, making their students aware, and what they anticipate to be done. We ought to get that. Senator JAVITS. That is exactly what I wanted to urge when I asked the Chair to yield for a question. Senator KENNEDY. Thank you. (The information referred to and subsequently supplied follows:) TELEGRAM FROM DR. JOHN A. COOPER, PRESIDENT OF THE AAMC I am more than happy to be able to supply information to the Senate Health Subcommittee concerning research that is being conducted by the academic medical centers relating to sickle cell anemia. SCA is one of the best understood of the genetic diseases. The molecular basis of the disease is quite well understood from the work of many investigators. This understanding has depended upon biochemical and biophysical studies, conducted primarily in academic medical centers. Yet, researchers have been unable to produce a form of therapy which prevents the clinical manifestations of SC disease. Significant contributions both to the understanding and the treatment of the disease have been made by researchers at Howard University College of Medicine, the Johns-Hopkins Hospital, Meharry Medical College, University of Chicago, Medical College of Virginia, University of Tennessee, Wayne State University, University of Michigan School of Medicine, George Washington University School of Medicine, University of Washington School of Medicine, and Case-Western Reserve. Research related to SC disease is now being supported by several of the National Institutes of Health. Most of this research is being carried out in laboratories and clinical facilities of United States Medical Schools. The National Heart and Lung Institute has awarded $500,000 in contracts for the first phase of a cooperative study, testing the feasibility of clinical trials of therapy for the SC crisis. Most of the work will be done at 5 medical schools (Tenn, Emory, Duke, Meharry and Bowman Gray). Major emphasis is on the evaluation of urea therapy, but other methods are included. In addition, the National Heart and Lung Institute is supporting 11 grants with major emphasis on SC disease at a current funding level of approximately $450,000. This work is being done at 8 medical schools (Tenn, Johns-Hopkins, Fla., Ga., Albert Einstein, Arizona, Pittsburgh, Case-Western Reserve). The National Institute of Arthritis and Metabolic Diseases is also active in the support of sickle cell disease research. Important fundamental work is being done in the NIH laboratories and in addition NIAMD provides research grant support for SCA disease studies totaling about $420,000 in 11 grants. Granting institutions include medical schools at the University of Texas, Galveston, Tennessee, Pennsylvania, Albert Einstein, Arkansas and Johns-Hopkins. I can assure you and your subcommittee that the academic medical centers of this country stand ready to continue and expand their research into sickle cell anemia. I hope this will assist you during your executive markup of the bill, S. 2676. Sincerely, Dr. JOHN A. COOPER, Send the following message, subject to the Telegraph Company's conditions, rules and regulations, which are on file with regulatory authorities. PRESS DPR NPR OVER NICHT In As you may know, the Senate Health Subcommittee The Senate Health Subcommittee has scheduled an Sincerely, Edward M. Kennedy, Chairman |