pattern it after that. I really think this is the key to what you folks have done and it is not so much a question as a compliment to the fact that I think you have solved the educational problem. In terms of the money and the effort and the resources, no; we have to focus that. Mr. DAVIS. Let me say this: I feel that this is the first time that the black athletes have even united together for one common cause, I think since the inception of Jackie Robinson in baseball, but this is the first time that athletes from all professions-boxing, baseball, football, and basketball-have joined together for one common cause: and we feel that the black community recognizes this. This is the reason we feel like you indicated before, the acceptance of our program on sickle cell anemia, because there is no one that can look at our organization and say "Well, they are out for the money," because we have some board members who are well, we roughly figure our board average is $50,000 a year-but we feel that it takes a lot of promoting. I would say that Dr. Giorgio and people who are involved in sickle cell anemia, they felt that we were a little braggadocio in what we felt we could do, but we are quite satisfied with the results and it is through the athletes. Senator SCHWEIKER. Thank you very much, Mr. Chairman. That is all I have. Senator KENNEDY. I want to thank you very much. Senator Schweiker has said it so well, and Senator Javits and Senator Hughes. I think we all agree you have performed a very important public service. We welcome you to the subcommittee and wish you the best of luck in this and look forward to working with you in achieving the desired outcome and goals. Thank you very much. The subcommittee will stand in recess for 10 minutes. (Recess) Senator KENNEDY. The subcommittee will come to order. Our next witnesses are a panel of doctors. Dr. Maurice Rabb of Chicago; Dr. Anthony Cerami of Rockefeller University in New York City: Dr. Robert S. Rhodes of Meharry Medical College in Nashville; and Dr. Roland Scott of Howard University here in Washington. Dr. Rabb received his M.D. from the University of Louisville. He is currently assistant professor of ophthalmology at the University of Illinois; is chairman of the section of ophthalmology at Mercy Hospital and is chief of ophthalmology section at the Martin Luther King Health Center. Dr. Cerami received his Ph. D. from Rockefeller University and is an experimental hematologist. At Rockefeller, he is an assistant professor in the department of chemical biology and is trying to evaluate the potention use of the drug sodium cyanate in the treatment of sickle cell anemia. Dr. Rhodes received his B.S. from South Carolina State and his M.D. from Meharry Medical College. He is now a fellow in medicine at Vanderbilt University and is an instructor in the division of hematology at Meharry. Dr. Scott received his M.D. from Howard University College of Medicine; spent his internship at Kansas City General Hospital; and his residency in pediatrics at Provident Hospital in Chicago. He is professor and chairman of the department of pediatrics and child health at Howard University College of Medicine and is also chief pediatrician at Freedman's Hospital. Gentlemen, we welcome you. Dr. Scott, why do we not start with you, unless you have an order of preference. STATEMENT OF DR. ROLAND SCOTT, PROFESSOR AND CHAIRMAN OF THE DEPARTMENT OF PEDIATRICS AND CHILD HEALTH, HOWARD UNIVERSITY Dr. SCOTT. Senator, we are very grateful for this opportunity_to appear before your committee. My colleagues and I, namely, Dr. Ferguson and Dr. Hudson, who are in the room, have presented a prepared statement which we would like to have entered into the record. In order to save time for the rest of my colleagues who are here to my left, I will not read the statement, but would like to comment on certain aspects of it. We, of course, are based at Howard University College of Medicine. Howard University is 100 years old and those of us who are involved in sickle cell anemia research are based in the medical center which consists of the college of medicine, the college of dentistry, the college of pharmacy, the school of nursing, and Freedman's Hospital. Nearly half of the black physicians in the United States were trained at Howard University. We have been interested and involved in studies and research in sickle cell anemia since 1948. At that particular time our first publication occurred and it dealt with the screening for sickling in newborn infants. Since that time, there have been over 50 publications dealing with different aspects of sickle-cell anemia, and we have participated in 35 or 40 medical meetings at which time either papers or exhibits were presented dealing with this disease. We have all too frequently observed children, particularly children and youth, suffering from sickle cell anemia; and just briefly to mention some of the complications, we see enlargement of the heart, enlargement of the spleen, liver, marked susceptibility to infections, particularly those involving the lung and bone; not infrequently, we see children coming in who are paralyzed because they have involvement of the muscles of the brain so that they come down with the paralysis or a stroke. We have also seen a few children who had serious impairment of vision because of sickle cell anemia, and just a month ago we participated in a conference here in Washington, D.C., where a child was presented who was blind because of sickle cell anemia. I am sure the complications relating to the eyes will be brought out by another panelist. In addition, sickle cell anemia interferes seriously with the growth of children. Children and youth with this disease usually enter puberty late. They have a delay in the onset of their menstrual periods. There is a delay in the appearance of their secondary sex characteristics. This creates a distorted body image and causes serious worry on the part of these adolescent children about their delay in their growth and development. We are all aware of the fact that sickle cell anemia is a particular hazard for pregnant women who have sickle cell anemia, and I should not leave some of the problems and complications without just briefly mentioning the psychosocial and economic problems relating to sicklecell anemia. In the case of children, there is this loss in time at school. Oftentimes they get behind in work because of the frequent hospitalizations, and the previous speakers have already talked about the extra expense for hospitalization, medical care, nursing, and so forth, as well as difficulty in getting coverage through insurance companies. Now, more recently, we have organized our personnel, our facilities and our interests, aims, goals and objectives into a center for sicklecell anemia at Howard University which is now active and is involved in screening individuals, providing genetic counseling, diagnosis, treatment; in addition, we are providing consultation not only to professonal groups of physicians, but also to the lay public, because as we all know, there is a great deal of interest on the part of the lay public in sickle cell anemia. Many groups are becoming involved in testing and screening, and particularly lav groups are in need of medical advice and counseling. We would like to develop our center further to the point where it could actually become a demonstration project, a demonstration center, so that we could extend the screening, the detection, diagnosis, and do many other things, including the presentation of seminars on sickle cell anemia for interested medical as well as lay groups. I think it is very important that we not leave out the lay groups in developing our program for sickle cell anemia. Now, the main obstacle or the main problem we have had in relationship to the further development of our center at Howard University is the inadequacy of support. For instance, the whole college of medicine has a research budget of $1.1 million per year and of that, only $200.000 is alloccated for research in sickle cell anemia. Further, I would say that over the past 15 years we have received from Federal support only $68,000 over a 15-year period to support research in sickle cell anemia, and this has certainly been a very frustrating aspect of our work because there has been so little support from the Federal Government. Just last year, in 1970, we wrote up a project which was presented to the Government for the development of a conference on sickle cell anemia here at Howard University and this was presented for funding. The amount of money we asked for was $43,000; this was not forthcoming and our frustration was heightened when the NIH decided that instead of funding our project, they would set up a sort of intramural conference on sickle cell anemia themselves, to which we were not invited. We, of course, are very much concerned about that and frustrated, and we let them know how we felt about it. So they said, "Well, here is $2,000. See what you can do with that." Of course, this again, was very inadequate to carry out the project that we wanted to become involved in. I would like to say at this point Senator KENNEDY. Did you accept the $2,000? Dr. SCOTT. Well, no, because I did not know what we could do with it. You know, to get a speaker from California, that is $500 just there, so that we did not-we have not turned it down, but we have not been able to find very much that we could do with it because we had plans to have many speakers. As a matter of fact, some of those that we had listed in our research protocol were the ones that NIH invited themselves. At this particular point, I would like to say that we wholeheartedly support the bill that is under consideration at the present time. We feel that we have the nucleus at Howard University to become involved to a large extent and certainly to develop a regional center for sickle cell anemia which could extend itself into offering screening, counseling and medical care to people in this regional area. We would propose that the District of Columbia and Howard University serve as the national model for the control and combat of sickle cell disease. As I say, we have a nucleus based at the university: a medical school, a hospital, nurses, physicians, investigators. We have the capability of extending our usefulness and becoming involved and integrated with the local health agencies; in this way we could complement and supplement what will be carried out in the health facilities in Washington and in that way save some funds by collaborating and using existing facilities in the health departments and other medical facilities, neighborhood clinics, and so forth, to maximum extent. So our center could serve in a comprehensive way in participating in screening, genetic counseling, upgrading the medical care of patients, training not only interns, residents and medical students, but also offering short refresher courses for physicians who would wish to upgrade their knowledge of sickle cell anemia and also train so-called paraprofessionals such as medical social workers, public health nurses to become competent in providing the genetic counseling and education which are necessary companion for any well-organized screening program. In summary, we support the establishment of regional centers which are provided in the bill, and we recommend that active programs be conducted by the local facilities which could work in conjunction with the center to be established which could be increased in significance and support at Howard University. Again, I appreciate the opportunity to appear here and support this bill, and if there are any questions that I could answer later on I would be happy to do so. (The prepared statement of Dr. Scott follows:) 71-519 O 72 10 Statement by Roland B. Scott, M.D. Professor and Chairman Department of Pediatrics Howard University College of Medicine Angella D. Ferguson, M. D. and Robert L. Hudson, M. D. Center for Sickle Cell Anemia Before the Senate Committee on Labor and Public Welfare Subcommittee on Health on S.2676 November 12, 1971 (A modification of the statement presented before the Senate Committee on the District of Columbia Subcommittee on Public Health, Welfare and Safety on October 27, 1971). |