And if the schools are unstable, what will be happening to the many new students who should be taught, who will be so badly needed when a national health insurance program is adopted? A word should be said, I believe, about another instability factor that is present in the research enterprise of the Nation. It may be unpopular for me to say this, but it needs to be said. My dscussions with outstanding biomedical researchers have supported my opinions. It is now very clear that the Institutes which deal with cancer and heart disease are being favored to the detriment of other Institutes. While their funding is being increased heavily, the other Institutes are remaining at near-level budgets, which only mean lower budgest because of inflation. The public was told by President Nixon when he signed the bill regarding the "war on cancer" that there would be increased funding in this area, but he also implied that these increases would not be detrimental to other areas of research. However, that in fact has happened because of the economic situation and the levels of funding that the Congress was finally able to appropriate in the face of determined administration resistance. And finally, I would like to comment about another serious problem which has been emerging over the past several years. That is, budget managers since 1969 have in fact been telling biomedical researchers what is needed for programs in their fields, and even which areas are best to research. We know that the Congress distrusts every document that comes from the administration if it has been reviewed by the Secretary of HEW or by the Office of Management and Budget. We know that the NIH Administrators, unable to speak bluntly in public about their problems and needs, feel that they should say nothing rather than participate in the falsification of information. And we know that the budget cutters know nothing about biomedical research. These patterns of control over research must be broken. AN OVERVIEW OF THE COST AND THE PAIN OF DIGESTIVE DISEASES Mr. Chairman, the facts I spoke about last year will not go away. Digestive diseases, according to Social Security Administration estimates, affect 20 million of our citizens. More dollars are spent for medical purposes by persons suffering from digestive diseases than any other class of diseases. Digestive diseases are the most common, most distressing, and most costly of all illnesses. Unfortunately, they are also the least studied, least understood, and least likely to be treated well even when effective treatment is known. Perhaps the most stunning comparison that can be made is that although over 10 percent of the cost of caring for sick Americans is spent on digestive diseases, less than one-tenth of 1 percent of the Federal Government's budget for health research and education is spent on digestive diseases. One could go on and on about the costs and pain of digestive diseases. For example, peptic ulcer or its symptoms will strike about 10 percent of all male adults in the United States at some time in their lives. The annual economic loss in the United States due to peptic ulcer is estimated at just under $1 billion, if the cost of care as well as cost of disability and lost income due to premature death is included. The ADDS and the Foundation for Ileitis and Colitis supports the American Gastroenterological Association in their call for increased funding to begin new research in hepatitis and hormones, and especially their call for a massive study into care, manpower patterns, and opportunities for better service to those who suffer the diseases. However, we want to make sure that you understand that we believe the areas of ileitis, colitis, and other bowel disease is ripe for research exploration, and we hope that the support of last year will not be lessened this year. SUMMARY The mere recitation of the litany of diseases and costs will not alone produce cures. Only research will produce cures and prevent the diseases. And only money will produce the research well. And, when you come down to it, only the Congress the administration has abdicated its responsibility in this regard-can fund the research, and ultimately, Mr. Chairman, that means you. We will give you whatever support you request, whenever you request it. Please call on us whenever you feel we would be helpful in this regard. Dr. SESSIONS. Finally, gastrointestinal endoscopy has been mentioned to you as an important area and the support of your committee has speeded development in this area. We are notified that just this week NIAMDD will be awarding three contracts to evaluate instruments developed for viewing the inside of the bowel and to see how these can be related to digestive diseases. This endoscopy now allows us to remove tumors from the bowel. Also we can apply sutures and put on various agents that are helpful in inflammatory and perhaps later in neoplastic disease. We can also study the pancreas for the first time. Clearly, your committee has been very responsive to the opportunities that we have suggested in years past and I would like today to mention three areas that we think are now ripe for exploration and development. These are hepatitis research, hormone research, and a study of digestive disease, care, and manpower. Hepatitis, an inflammation of the liver, is usually caused by a virus. Studies over the last 10 years have allowed us to identify the major virus causing hepatitis and we can now produce a vaccine. As a matter of fact, within the past few weeks there has been a report of the development and use of such a vaccine in chimpanzees. It is our hope that in the next few years a vaccine can be developed, fully developed, thoroughly tested, and be available for use in man. Hepatitis is fifth or sixth regularly of the communicable diseases reported in this country. Another point having to do with hepatitis is that we found that viral hepatitis can lead to chronic liver disease and sclerosis. This has been an enigma to us but we have something to indicate an allergen and immune complexes resulting from the virus infection may be the culprits. Studies on this possible pathogenesis have a high priority in our minds and if this turns out to be correct it can give us a way to prevent the aggression of viral hepatitis leading to chronic liver disease and sclerosis. A second area that we think is ready for intensive study is GI hormones. In the past 10 years six hormones have been isolated from the lining of the stomach and duodenum. Several of these are known to be important in disease in man, including cancer in man. However, only one of them, gastrin, has been chemically characterized in man. There are two ways that we think hormone research can be helped. The first is to provide funds that would allow us to define these other five hormones more completely and to develop methods for assessing them and also to see their mechanisms of action. The second thing which is related is that there is a shortage of these hormones for study. We need hormones in quantity in order to carry out these studies in man. The supply of synthetic and natural hormones could be increased if we could contract with private sources for them. It is our estimate that a sum of $500,000 would purchase the needed supply of these hormones. Finally, the study of digestive diseases, prevention, care, and health delivery. I have submitted for the record a study that we carried out on research needs in the area of digestive diseases. In the course of this our specialty benefited from the discipline of looking at ourselves critically and we soon found that we felt a major need for understanding better the patterns of delivery of care, the major support systems, and other factors related to the digestive disease. We would like to have a 2-year study that we estimate would cost $300,000. The purpose of this study would be to evaluate the present situation insofar as the prevalence of these diseases is concerned. The second would be to identify specific areas that would lend themselves to improvement in care on a reasonable cost-benefit basis. With these two pieces of information in hand we could develop a plan, a long-range plan, for attaching such things as preventive measures, detection by screening, criteria for diagnosis, and so forth. In my record there are other parts of this program that are equally important but I will omit discussion for the sake of time. I want to emphasize the fact that a major part of this study would be to determine what the present situation is in terms of manpower. We need to know how many specialties we have, what their level of training is, what our needs are for the present and for the future. We think that our specialty is ready for this. We have shown the discipline to do it in relation to research. We would like to do it in relation to patient care and health delivery. Finally. I would like to make funding recommendations. First, as to the overall Institute, we believe the President's proposed budget should be rejected out of hand, that in fact funding should be increased 15 percent beyond the 1975 budget. This would be to provide for inflationary costs and also for funding of new research starts in promising areas. Second, insofar as digestive disease research specifically is concerned, we are hopeful that this committee will in report or in bill language assure a continuation of the levels of funds in 1976 at least at the level of 1975 with a percentage increase for inflation. Finally, we ask your help in this, and consider this quite important, that there be a specific sum of $2 million to provide for new work in hepatitis, hormone research, and to provide for the study relating to digestive diseases I have described. I want to thank you for this chance to appear before you, Chairman Flood. Mr. FLOOD. Thank you. NATIONAL EYE INSTITUTE WITNESS MRS. SYLVIA N. RACHLIN, EXECUTIVE VICE PRESIDENT, MYOPIA INTERNATIONAL RESEARCH FOUNDATION, INC. Mr. FLOOD. Mrs. Sylvia Rachlin, executive vice president, Myopia International Research Foundation. Mrs. RACHLIN. Thank you again, Mr. Chairman, for allowing us the chance to express our hope and prayer for a national myopia center under the National Institute of the U.S. Public Health Service. We are very happy to report continued progress during the past year and an increasing number of distinguished research doctors in the United States and in other nations are now helping us as evidenced by an increasing number of lay people interested in this vital program. We submit a letter in our presentation by Mr. Gerald R. Waters, Sr., chairman, Community Services Committee, New York City Central Labor Council, on behalf of the officers and 1,250,000 members. They want to say thank you also to you, Mr. Chairman, and to your committee, for being so interested in the public health and so dedicated in its many areas. We know you have very little time and our presentation is in writing. We have given 20 copies to your assistant. Best regards to everybody, Mr. Chairman and committee. Thank you. [Mrs. Rachlin's statement and attachments follow:] STATEMENT OF MRS. SYLVIA N. RACHLIN, EXECUTIVE VICE PRESIDENT, MYOPIA INTERNATIONAL RESEARCH FOUNDATION, INC. Mr. Chairman and members of the House of Representatives Subcommittee on Appropriations for Labor, Health, Education, and Welfare. Eye care for Americans afflicted with myopia, commonly known as nearsightedness, is a billion dollar a year industry. The Food and Drug Administration has recently referred to "100,000,000 Americans who wear eyeglasses." This would bring the cost for eye care well beyond the billion dollar mark. This statistic is particularly disturbing to the myope who feels he is regarded more as consumer than as patient. Since its incorporation in 1963, the Myopia International Research Foundation has sought to further interest in comprehensive, interdisciplinary research into the causes, treatment and prevention of nearsightedness. More immediately, it seeks to save the eyesight of children afflicted with progressive, pathological myopia for which there is no known cure. Because the foundation has adhered to a policy of strict academic impartiality and refrained from even the semblance of endorsement or commercialization, its exhibits have received much acclaim at meetings of the American Academy of Ophthalmology and Otolaryngology, International Congresses of Ophthalmology and elsewhere, thousands of doctors visiting and asking to be involved. The Voice of America has twice broadcast the foundation program overseas. To improve channels of communication among doctors interested in myopia research throughout the world, the Miopa International Research Foundation publishes and distributes myopia research papers without charge to interested doctors throughout the world. The Myopia International Research Foundation is idealistic in its operation. No money whatsoever is spent on any administrative salaries or professional fund raisers. Within the United States, this foundation seeks the establishment of a National Myopia Center with the following threefold structure: 1. Myopia research projects in the National Eye Institute, National Institutes of Health (a) Establishment of analytical and statistical procedures by the biometrics branch of the National Eye Institute. (b) Grants to the National Eye Institute enabling myopia research projects and establishment of analytical and statistical procedures. 2. A myopia service program under the National Eye Institute (a) Collaborative study permitting the creation and development of service programs for myopes throughout the United States, and a standardization of records and reporting forms. Through their personal doctors, myopes-young and old-would participate by submitting comprehensive cumulative records to the National Myopia Center for continued analysis by research experts. (b) Grants enabling myopia service programs. 3. The National Registries of Myopia Pathology, a myopia eye study bank, should be developed under the United States Public Health Service. All universities, hosiptals, other laboratories involved in eye research, and eye banks throughout the United States would participate in coordinating clinical research. Participating laboratories would receive eyes of myopes and their families which have been donated for the purpose of research into the pathology of myopia from its incipience through its advanced stages. Findings would be correlated with other research. This plan for the National Registries of Myopia Pathology, origi 53-100 - 75 - 19 nated by the Myopia International Research Foundation, has received the enthusiastic endorsement of many individuals and organizations across the Nation. A National Myopia Center structured upon this three-phase program would stimulate nationwide interest and participation by myopes and their families and friends in research under public and private health auspices. It is a recognized fact that over one-third of the population is nearsighted. Countless adults have suffered loss of employment and become financial burdens to their families and the community because of pathological or degenerative changes in myopia. In addition, the Federal Treasury suffers a loss in revenue through exemptions for legal blindness, reduced earnings, and increased medical deductions for eye care. Members of this honorable committee: Fully cognizant of the reasons for current retrenchment, the professional consensus is that myopia problems require much applied research. By mail and telephone the Myopia International Research Foundation receives daily appeals from myopes or their relatives for that answer which is not yet known to medical science. In their behalf we beg your earnest consideration and help. COMMUNITY SERVICES COMMITTEE, NEW YORK CITY CENTRAL LABOR COUNCIL AFL-CIO, Mrs. SYLVIA N. RACHLIN, Myopia International Research Foundation, Inc., MRS. RACHLIN: It has been my extreme pleasure, and privilege, to have been associated with the work of your foundation over these past years and I want you to know that the officers of the New York City Central Labor Council, AFL/ CIO and myself feel privileged to be able to contribute to such a worthwhile effort. The many thousands of individuals, union members, members of their families and retired workers who visit the eye clinics of our labor health centers, one can readily appreciate the additional thousands who stand to benefit when favorable consideration will be granted to your Myopia International Research Foundation by our Congress. We are aware that through your foundation you are presently engaged in the promotion of communication among all those involved in myopia research, from the patient seeking relief to the doctor carrying on clinical studies. Through the free publication and dissemination of clinical reports and observations to doctors in all parts of the world, researchers have been informed of corroborative materials for work in process and have indicated areas for further investigation in myopia research. On behalf of the 600 individual local unions and 1,250,000 individual trade union members we represent, I trust you will receive the needed support of our Congressional leaders in the fight against the ravages of myopia. With all best wishes, I remain Sincerely yours, GERALD R. WATERS, Sr., Director. PERTINENT FACTS The Myopia International Research Foundation, Inc. launched the first comprehensive, interdisciplinary research program in the United States into the causes, treatment and prevention of nearsightedness. Our immediate goal is to save the eyesight of more than 1 million American children (besides millions around the world) who are doomed to blindness because of progressive, pathological myopia for which there is no known cure. This we are doing with the cooperation of doctors in the United States and elsewhere throughout the world. The Myopia International Research Foundation sponsored the First International Conference on Myopia in 1964. Since 1965 we have petitioned the Congress of the United States for the establishment of a National Myopia Center under the aegis of the U.S. Public Health Service. Each year we have appeared before subcommittees of the House of Representatives and Senate. The Myopia International Research Foundation has been invited to exhibit at conventions of the American Academy of Ophthalmology and Otolaryngology. |