I strongly commend the recent action of the Senate and House Subcommittees on Health in holding public hearings on legislation to launch a comprehensive attack on sickle cell anemia, which takes such a heavy toll among the black citizens of our country. The Sickle Cell Anemia Prevention Act (S. 2676) merits prompt Congressional action, if we are to make a decisive advance in research and screening programs whose critical needs have received only a modest response from the Administration. On October 20, 1971, it was my privilege to join in a press conference And in launching a nationwide public and private program for the prevention of sickle cell anemia, we must greatly expand the screening, counselling, and treatment programs in our armed services and in the Veterans Administration medical service. During the period 1943-1970, over 518 deaths due to this disease have been reported to the registry of the Armed Forces Institute of Pathology. And during an 18-month screening of over 5,000 recruits at Fort Knox, Kentucky, the director of the Blood Transfusion Division of the Army Research Institute found that 200 soldiers had the sickle cell trait. I would appreciate your including this letter in the hearing record on S. 2676, as well as the text of my remarks at the press conference on October 20th and an article appearing in the Philadelphia Evening Bulletin. With best regards, Enclosures Sincerely, Huchert Hugh Hubert H. Humphrey STATEMENT ON SICKLE CELL ANEMIA AND THE HEALTH NEEDS OF AMERICA'S MINORITIES BY SENATOR HUBERT H. HUMPHREY PHILADELPHIA, PENNSYLVANIA, OCTOBER 20, 1971 One of the most important challenges confronting medical research today is the discovery of a cure for sickle cell anemia. This blood disease will afflict at least one of every 500 black babies born this year, and the children afflicted will face a life expectancy of only 20 to 40 years, with much of that time spent in pain and recurrent illness and hospitalization. It is a national disgrace that we have failed to launch an all-out effort to detect and combat this disease caused by a genemutation occurring almost exclusively among black people. Almost 2,000,000 Americans today carry the sickle cell trait, or dective gene. When inherited from both parents, it is transformed in a significant percentage of children into a malady affecting the red blood cells that elongate under stressful activity to block capillaries and deprive tissues of vital oxygen. A comprehensive national program of research, testing, and public education on sickle cell anemia will require substantial public and private financial assistance just to control the spread of this insidious disease. The recent establishment of the Black Athletes Foundation for Sickle Cell Anemia Research is an outstanding example of the kind of action required to meet this challenge. It is a research-financing effort born of deep commitment and direct personal experience, and I pledge my full support and assistance to the founders of this vital organization, Willie Stargell and Dock Ellis of the Pittsburgh Pirates. Adequate financial support can greatly accelerate the significant progress that has already been made in the development of two accurate tests for the identification of the sickle cell anemia trait and disease, and in the discovery of vital disease-crisis treatment measures. We must immediately provide for the intensive evaluation of these medical advances and the promotion of further discoveries. We must wage an all-out campaign to educate people about this disease and to encourage their voluntary participation in testing programs. To help move toward these goals, I have joined as an original sponsor of the National Sickle Cell Anemia Prevention Act, introduced by Senator Tunney of California. I have called for prompt Congressional action on this bill. It would provide for a coordinated federal grant program of $25 million per year for 3 years for research, voluntary screening, and counseling and public education, as well as a special $15 million grant program over three years for the development of centers for research and research training in sickle cell anemia. Emphasis is also placed in this bill on the development of screening and counseling programs by the Department of Defense for all military personnel and civilian employees. And a similar requirement is directed at the Veterans' Administration and the Public Health Service on behalf of persons eligible for health care in these agencies. Under all these programs, the voluntary participation of an individual and the protection of his privacy, through holding test results confidential, must be assured. I am appalled at the failure of the federal government to have taken more comprehensive measures by now to promote research, voluntary testing, and public education on sickle cell anemia, in the face of the extensive evidence of this disease and developments in research that have come to light in recent years. The budgetary allocation of $6 million for research in the current fiscal year represents an important beginning. Hopefully, it will be pressed forward by the recently appointed National Advisory Committee on Sickle Cell Disease under the Department of Health, Education, and Welfare. It is time we faced the clear facts of higher rates of disease and death among the disadvantaged minority groups of Americans an equal right to good health. It is time for us to act to assure all Americans an equal right to good health. Today in the bicentennial city of Philadelphia, let us establish the priority goal to be achieved by 1976: The conquest of sickle cell anemia. To a child, sickle cell anemia represents suffering, chronic fatigue, consistent absences from school. In a man, the condition makes the holding of a job extremely difficult. A woman may have severe difficulty with all phases of her pregnancy and delivery; she, too, faces intermittent illnesses. With no known medical cure, physicians can only help relieve symptoms, reduce pain and prevent complications. To effectively combat sickle cell anemia, we need more money and manpower all along the line-for research, education, therapy and counseling. And we need resources where they count-in the neighborhoods of black Americans and in rural America, with blacks involved in the planning and delivery of these services. I urge that we give priority to screening every single pre-school and school child in America. We can set up screening centers at fixed sites as well as in mobile vans that would travel to schools, playgrounds, parks and residences. Under the Medicaid Law, every child of welfare families was long since to have been screened for all major ailments; this law must be implemented now for sickle cell and for all other major health problems. But in all such efforts, we must become fully aware of the larger significance of the disease of sickle cell anemia. And that is that the overall health statistics for black, Spanish-surname, and Indian Americans are much worse than for white Americans. Look at the toll taken by specific killers and cripplers-heart disease, cancer, stroke, kidney disease, tuberculosis, accidents. In instance after instance the color of one's skin increases the likelihood of being a victim of disease, disability and premature death. Nearly 200 years after our national independence, black, Spanish-speaking, and Indian Americans are still in bondage-to excessive physical and mental afflictions as well as to slums, inferior education, and poor jobs. We know sickness makes people poor and poverty makes people sick. We know how poverty and malnutrition skyrocket infant mortality. But there is much we do not know. This is not a task for the U.S. Government alone; it is a task for state and local governments; for foundations, medical and paramedical societies; private citizens, yes, for all of us. Let this be a decisive action by which we endeavor to assure all Americans equal health opportunity. [From the (Philadelphia, Pa.) Evening Bulletin, Oct. 20, 1971] HUMPHREY AIDS SICKLE CELL ANEMIA DRIVE Sen. Hubert Humphrey (D-Minn) flew into Philadelphia today to help launch a fund-raising drive for the International Research Institute for Sickle Cell Anemia, an heriditary blood disease that strikes blacks. Humphrey joined Elliot G. Heard Jr., a Woodbury, N.J., lawyer and president of the institute, former Phillies infielder Tony Taylor, Phillies reserve outfielder Byron Browne, and various doctors at a press conference at the Bellevue-Stratford. Heard said the institute, founded this month, hopes to build its research center in Lawnside, N.J. Research in the disease, which strike one in 400 to 500 blacks, has been sporadic, he said. The center would be the first institution devoted to the disease, which can be treated but is not curable. Sickle cell anemia results in red blood cells changing their shape from disks to sickles that can clog the arteries and can result in great pain, stroke and other problems. Half of its victims, it is estimated, die before they reach the age of 20. "There is a disproportionate amount of pain, suffering and disease among minority groups," Humphrey said, "We need an international effort to concentrate on these problems. Humphrey predicted Congress would pass the National Sickle Cell Anemia Prevention Act. introduced by him and Sen. John Tunney (D-Cal.) He said it would provide some $15 million in yearly research grants. Humphrey said a private effort, similar to that again muscular dystrophy, must be launched against sickle cell anemia. He pledged his private and public support to the institute. Browne said the Black Athletes Foundation for Sickle Cell Anemia Research would go to baseball club owners to raise funds for the institute. Dr. George W. Ward, chief of pediatrics at Mercy-Douglass Hospital, while endorsing the proposed center, said there is not enough money in Philadelphia now to screen and treat sickle cell victims. American Nurses' Association, Inc. 10 Columbus Circle, New York, N.Y., 10019 Our state The American Nurses' Association would like to have the enclosed statement Sincerely yours, Eile the Jawbr Eileen M. Jacobf, Ed.D., R.N. EMJ:mw CC: Senator Harrison A. Williams 75th ANNIVERSARY 1896-1971 |