FOUNDATION FOR RESEARCH AND EDUCATION IN SICKLE CELL DISEASE, Additional testimony in support of bill S. 2676, to provide for the prevention of Sickle Cell Anemia, presented by Dr. Y. F. Francis, representing the Foundation for Research and Education in Sickle Cell Disease. Purposes of screening are: SCREENING 1. To identify the extent of the problem, and 2. To reduce the number of severe cases by the identification and counseling of the carrier state. The entire Black population of the United States should be screened. This is 25 million people. The minimal figure that we have today is that the cost of initial screening is approximately $1.00 per person. Perhaps, this amount can be reduced by more efficient methods. It is easily seen, therefore that the 25 million dollars proposed in the bill could be devoted almost entirely to screening, although as we show later on, that this initial effort will have to do other things as well. In the second phase of screening, it can confidently be predicted that two and a half million people will have some form of Sickle Cell Disease, the majority of them will have the trait form. They will require definitive counseling and referral. The figures that we have at present indicate $10.00 to $20.00 per person for adequate services in the second phase. We must not forget that there is an appreciable incidence in Sickle Cell Disease in people not identified as Black, particularly Spanish speaking people from the Carribean and South American area, and to a lesser extent, in Greeks and Italians. They must also be serviced, and their numbers will require additional expenditures. PROGRAMS AND FACILITIES Application of such knowledge that we do have concerning Sickle Cell Disease requires a network of programs and facilities throughout the involved communities. Over the last five years, the Black community has exerted great effort on its own, and by all groups in the communities, professional health workers, volunteer agencies, social action groups, and plain social clubs. These groups have organized fund raising; have organized screening; have developed educational materials including brochures, films, newspaper and television articles, etc.; have developed comprehensive clinical programs; have developed blood programs; have stimulated and developed research programs. Thus, the overall Black community has laid the foundation of research and clinical services. This effort now requires funding, but the basic structure is already present. This is in contrast probably, to the beginning of the anti-poverty programs where set-up and structure followed funds rather than preceding them. In this case, therefore, there is more likelihood that the funds will be sufficiently spent, that the returns will be greater, and that the programs may be continued even after the initial federal effort until a cure is found. TRAINING Members of the community are already pleading for further training of lay and professional personnel in Sickle Cell techniques. Physicians want to know how to care for their patients; parents want to know how to handle their children; teachers want to know what to expect from their pupils in the classroom; employers want to know in what capacity their employees may best function; geneticists want to know what techniques of counselling can reduce the incidence of the serious form; students want to know how they can participate in community involvement. Training is needed at all levels. And hand in hand with this goes the further development of educational materials. MILITARY We are happy to see that the bill stresses the importance of a large military program. The military is in a unique position to define the risks involved in having the trait. This is because they can observe their personnel in a large variety of environmental conditions, the variety of physical and mental activities, and under a variety of conditions of duress, or relaxation. RESEARCH Because of the limited funds heretofore available, present research activity involves chiefly clinical trials or attempts to control sickling in the already afflicted patient. This is not unimportant, but it is the only kind of research that can be done with small amounts of funds. The techniques of modern genetics, however, that are available at present, could be applied to Sickle Cell Disease for preventive purposes if sufficient funds were available and sufficient time were available to make it worthwhile for research teams to tool up and organize more sophisticated techniques. For instance, the pre-natal, and peri-natal diagnosis of Sickle Cell Disease could presently be solved with available techniques if the funds were available. Again, the introduction of genetic material capable of forming normal hemoglobin could theoretically be done early enough in utero so that immune mechanisms would not interfere. Practical application of this might take five to ten years, but could be initiated immediately. In this same manner, bone marrow transplantations of Sickle Cell patients probably could be practically developed in this short space of time. Homozygous could be converted to heterozygous. This type of research could be initiated now with available funds. Twenty-five million dollars of federal funding would not only supplement but further stimulate private effort, so that in the foreseeable future, this disease would be under control to the extent that hundreds of millions required now and in the future in treatment efforts, not to mention the cost of suffering and mental anguish. This money could be channeled elsewhere. Submitted by, JEREMIAH FOWLER. WGN CONTINENTAL BROADCASTING CO., WGN EDITORIAL "SICKLE CELL ANEMIA" Chicago, Ill. Have you ever heard of sickle cell anemia? If you paid close attention to President Nixon's message to Congress earlier in the year, you may have heard of it. If you are Black, the chances are one in six hundred that you have it, like an estimated 50,000 other Black Americans. Two million other Blacks are believed to be carriers. Sickle cell anemia is an inherited blood disease limited almost exclusively to Blacks. Presently, there is no cure for it, as the President said. He put it only second to cancer as a targeted disease for increased research. In the meantime, until a cure is found, early detection, as early as possible, can help. It can ease the pain and suffering of those who have it. It can alert carriers to the possibility that their children, both alive and yet unborn, could have it. Testing for sickle cell anemia is routine in the maternity, infant, and child-care programs of the Board of Health, and in testing in lead-poisoning cases. The test, according to Chicago Health Commissioner Murray Brown, is simple and can be done with a blood sample taken for other purposes. There are two areas where testing could be done voluntarily, and begun immediately, with the cooperation of the medical profession. First, there are blood tests required for other reasons, before a marriage license is issued. The same blood could be tested for sickle cell anemia, with information on positive findings forewarded to the doctor who drew the sample. Second, there is the physical examination required of all children enrolling in public schools. Doctors handling these usually-routine check-ups could include a test for sickle cell anemia. Should the tests be positive, these doctors could begin treatment, perhaps even before symptoms develop. In the meantime, the Legislature, when it meets again in October, should consider making such tests mandatory. MIDWEST ASSOCIATION FOR SICKLE CELL ANEMIA, INC., Chicago, Ill. Mr. Chairman, members of the committee, ladies and gentlemen... My name is Howard Anderson, I am president of the Midwest Association for Sickle Cell Anemia (MASCA), an organization that formed in the spring of 1971. I, along with several concerned members of Chicago's Black community, came together to discuss what we could do to help eradicate the dread disease, sickle cell anemia, and MASCA was born. We had very little knowledge about the disease so we solicited the help of several physicians and hematologists who gave us the information necessary to wage our battle. In the course of listening to Doctors Billie Wright Adams, Paul Heller, and Earl Fredericks describe the origin of the disease, its debilitating effect on its victims and its dreary prognosis, MASCA decided that its primary and most important contribution to the fight against Sickle Cell Anemia would be (1) informing the public in general and the Black community specifically about the disease; (2) raise funds to help provide care and comfort for those afflicted with sickle cell disease, and (3) with the help of our consulting physicians, would be counseling carriers of the sickle cell trait and victims of the disease. Our reasons for this approach are that only recently has the general public even become slightly aware of the magnitude of Sickle Cell Anemia, despite the fact that the disease was discovered and named over 60 years ago. We felt that this disease and its frequency among Black Americans could no longer remain obscure. It is of utmost importance that Black people be made aware of sickle cell anemia, and its characteristics. But, we had no funds. We, therefore, turned to the mass media for help. Ladies and gentlemen, I beg your indulgence while I read excerpts from editorials which were broadcast to Chicago area viewers and give you the results of our efforts. WBBM-TV, JULY 21, 1971 Quietly, without fanfare, a movement has started to fight sickle cell anemia, a disease which strikes Blacks almost exclusively. There should be anger and outrage that the disease has been so neglected. If the disease hit as many white children as it does Blacks, we believe there would be an outcry. Millions of dollars are collected to fight diseases which affect but a fraction of the number struck down by Sickle Cell Anemia, for which only a hundred thousand dollars is collected annually. Money is needed for testing, education, and research. You can help by joining the Midwest Association for Sickle Cell Anemia at 841 East 63rd Street, Chicago, Illinois. Membership is ten dollars. They flashed our name and address on the screen as this appeal was being made. We received ten dollars in the mail. WBBM-TV, AUGUST 17, 1971 Tonight at nine o'clock WBBM-TV will present a documentary entitled, "The Neglected Disease." The program is well titled, for it concerns Sickle Cell Anemia, a disease which strikes Blacks almost exclusively. Sickle Cell Anemia strikes down one Black child in 500. The disease is characterized by severe anemia, bone pain, and increased susceptibility to infection. Half the children born with the disease die before they are twenty. Yet the public does little about the disease. Its neglect is outrageous. Locally there is no provision for mass testing, education, or counseling. Our small organization, the Midwest Association for Sickle Cell Anemia has been formed mainly to educate Blacks about the disease and its effects. Unfortunately, it is having trouble getting off the ground. No one in the organization can afford to devote his full time to it. But, they keep trying. You can help by sending ten dollars to this address: Midwest Association for Sickle Cell Anemia, 841 East 63rd Street, Chicago, Illinois 60637. Would you write it down so you have it before you as you watch the documentary, "The Neglected Disease". The documentary, and solicitation for funds brought $300. Presently, we, the members of the Midwest Association for Sickle Cell Anemia are volunteers. While this is commendable, it is also a handicap. The task before us is herculean. Volunteers do not have the time, nor can they marshal the resources needed to fight Sickle Cell Anemia. True, to date, we have provided the stimulus for a few television editorials, a radio show, and some newspaper columns, but our efforts-vis-a-vis the problem-are miniscule. The need for a full-time director and staff to direct further work is urgent. Effective planning requires time and money. Mr. Chairman, ladies and gentlemen, we feel that the most important aspect of the fight against Sickle Cell Anemia is an informational program for the public in general and Black people specifically concerning the cause, characteristics and symptoms of the disease. An informational program to motivate all Blacks prior to and during the child-bearing age-to find out whether they have the disease or the sickling gene is imperative. Genetic counseling for carriers of the sickling gene, and guidance and vocational counseling programs for the parents and the victims of the disease are necessary to enhance the ability of these individuals to live satisfying and productive lives. But, we also believe that for testing and counseling programs to be effective, Black people must know what they are being tested for-what the implications are and where do they go for help if they have the trait or the disease. No testing program or counseling program can be effective if the people are not aware that they may be carriers of the trait or victims of the disease. What are the implications for trait bearers inducted into military service? U.S. Army Surgeon General Hal B. Jennings, in response to Illinois Congressman, Abner J. Mikva and 36 Congressmen's pleas that trait bearers be exempted from military service, replied thusly, "Sickle Cell Anemia is a cause for rejection from the military service while sickle cell trait is not". In reference to the four recruits who died at Fort Bliss in 1968-1969, all had the trait, the Surgeon General had this to say: "Many individuals with sickle cell trait have trained at Fort Bliss over the years without any previous reports of death”. The position of the Army notwithstanding, in May, 1971, the Illinois State Medical Society passed a resolution asking that persons having sickle cell trait be exempt from military service. Here is a letter referred to us by the Martin Luther King Neighborhood Health Center; the letter, dated August 29, 1971, reads: Dear Sir: I am writing you this letter to ask you if you can help my son. I have a child. He has Sickle Cell Anemia. He has a bad heart, too. I have tried to get help here in Alabama, but they could not help us. We do not have money to pay the doctor and the hospital what we owe them. Please, if you can help us, please let us hear from you. The doctors here have done what they can do for me to help him. We need help with him . . . not only the money, but doctor's help. Maybe we can come to Chicago if you can help us with him. There are other doctors and hospitals in Alabama, but it is just the same as it always is. The doctor can help us some, but we just need money, to pay the doctor bills and the hospital bills. The doctor gets tired of waiting on us when it takes so long to pay our bills. .. please write me right back and let me know if you can help us with our son. If you cannot, just say so. I have had other people to tell me no all of the time, because I have tried so many times to get help... Thank you so very much. The letter originated in Buhl, Alabama. We are awfully sorry that we could do no more than refer the lady to the Sickle Cell Center at the University of Tennessee. Mr. Chairman, and members of the Committee, the Midwest Association for Sickle Cell Anemia believes that any disease that affects one out of every ten Black people is of epidemic proportions and constitutes a national health problem. We, therefore, urge you to bring the legislation before you to the full Congress of the United States of America and uncategorically recommend its passage so that the victims of Sickle Cell Anemia will receive the necessary health care. Thank you. MIDWEST ASSOCIATION FOR SICKLE CELL ANEMIA, INC., Hon. EDWARD M. KENNEDY, Washington, D.C. DEAR SIR: Your efforts on behalf of S. 2676, the sickle cell bill, are sincerely appreciated. If the Midwest Association for Sickle Cell Anemia (MASCA) can be of assistance in the fight ahead please call on us. Please include the attached remarks in the record for the hearings on the National Sickle Cell Prevention Act. I am including a letter that I received from a lady in Alabama seeking financial and medical assistance because I think it dramatically demonstrates the urgent need for a total health care program in the nation. My apologies for the delay. Sincerely, HOWARD D. ANDERSON, President. WBBM-T Booke-THE NEED DISEASE Tonight at nine click WERK-II en a bezmentary entitled "The Neglected Disease." The preus vel coed te z Movers Stokle Cell Anemia, a disease wing sris Pass in T We are certain if a disease struck as many wise note is tus de des Bas there would indeed be a massive rating win the ni sreći zios for funds to care for sickle cell vitims and find a cure Sickle Cell Anemia strike & TI ce Bus 208 at of every 500 The disease is characterized by were EDMILL * OF DI and Dirvased sceptibility to infection. Half the children in ein by See 5 bef re they are twenty. Yet the publice does lime arst the dease. Its beget is outrageous. Locally there is no provision for make tering edantie je eansing One small organizand the Kit been formed mainly to edonte Ba fortunately, it is having the tion can afford to devote lis fill Asease Fie Sickle Cell Anemia, has You can help by sending tea bilan this address: Midwest Association For Sickle Cell Anemia. M1 East God Street, China, Illinois 60637: Phone 6673888. We'll repeat that address KIT Association For Sickle Cell Anemia. 841 East 63rd Street, Chian Lens 5437: Paide 267-38. FULL SCREEN CARD: Address and phone er as abcre, Would you write it down so you have it before you as you watch the dictmentary. The Neglected Disease," at nine tonight on WBBM-TV. SICKLE CELL ANEMIA Quietly, without fanfare, a movement bas started to fight Sickle Cell Anemia, a disease which strikes Blacks almost exclusively. There should be anger and ostraze that the disease has been so neglected. If the disease hit as many white children as it does Blacks, we believe there would be an outery. Millions of dollars are expected to fight diseases which affect but a fraction of the number strack down by Sickle Cell Anemia, for which only a hundred thousands dollars is collected annually. (SILENT FILM: Showing blood cells affected by the disease. 23 seconds.) Sickle Cell Anemia is a Lereditary blood disease which affects one in five hundred Blacks. Normal red blood cells, which carry oxygen, collapse, become crescent shaped like a sickle, tend to stick together and form clots. The disease is characterized by severe anemia, bone pain, and increased susceptibility to infection. Half the children born with the disease die before they are twenty. One in twelve Blacks have the sickle cell trait. When two persons with the trait have children, one out of four of these children become sickle cell victims. (SILENT FILM: Showing child in whirlpool treatment. 30 seconds.) They need treatment to ease the pain, such as this sickle cell child in Los Angeles. Also, there is need for testing, education, and research into the disease locally. Chicago has no provision for mass testing of Black children, although the test is simple. It could and should be done in the schools. Then there should be counselling of parents of children with the disease or trait, and education of young people regarding its genetic implications. Money is needed for testing, education, and research. You can help by joining the Midwest Association For Sickle Cell Anemia at 841 East 63rd Street. Chicago, Illinois. Membership is ten dollars. (FULL SCREEN CARD: Midwest Association For Sickle Cell Anemia, 841 East 63rd Street, Chicago, Illinois 60637. Phone: 667-3888). Senator KENNEDY. The subcommittee stands in recess. (Whereupon, at 12:55 p.m., the subcommittee was adjourned.) |