The Medical Follow-up Agency

The First Fifty Years 1946–1996

Edward D. Berkowitz and

Mark J. Santangelo

NATIONAL ACADEMY PRESS
Washington, D.C.



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--> The Medical Follow-up Agency The First Fifty Years 1946–1996 Edward D. Berkowitz and Mark J. Santangelo NATIONAL ACADEMY PRESSWashington, D.C.

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--> NATIONAL ACADEMY PRESS 2101 Constitution Avenue, NW Washington, DC 20418 Additional copies of The Medical Follow-up Agency: The First Fifty Years, 1946–1996, are available for sale from the National Academy Press, Box 285, 2101 Constitution Avenue, N.W., Washington, DC 20055. Call (800) 624-6242 or (202) 334-3313 (in the Washington metropolitan area), or visit the National Academy Press’s on-line bookstore at www.nap.edu. For more information about the Medical Follow-up Agency, visit the MFUA home page at www2.nas.edu/mfua. International Standard Book No. 0-309-06440-6 Copyright 1999 by the National Academy of Sciences. All rights reserved. Printed in the United States of America Cover: Marines on conditioning march, summer 1997; the School of Infantry, Camp Geiger, North Carolina. Original photo courtesy of Mathew Lynch.

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--> Preface During World War II, the 15 million servicemen mobilized and deployed around the world produced an extraordinarily large and complex medical experience. The medical care provided by the armed forces was thorough and competent. A consultant system of leading medical scientists in all clinical disciplines was deployed and assigned to major commands in all zones of operation, both in the United States and overseas. Many distinguished medical teaching centers established affiliated general hospital units with research-minded faculty personnel, who were assigned to, and saw active service in, all overseas theaters of operation. Medical observations and data were recorded and centrally indexed. Medical problems in virtually all clinical disciplines, including trauma, surgery, infectious diseases, and psychiatry, often assumed urgent military importance and accordingly generated research and innovative therapeutic measures. Affiliated research activities of military import were also being provided by various committees of the National Research Council of the National Academy of Sciences. Toward the end of the war, it became increasingly apparent that a vast amount of medical data and research observations on a wide array of medical problems had been accumulated, strongly suggesting the opportunity for follow-up studies. Accordingly, on March 5, 1946, I submitted a memorandum to Surgeon General Norman Kirk, pointing out that "an enormous amount of material of great clinical value" had accumulated in the medical records kept by the armed services, such that, in fact, "[i]t can fairly be said that no similar amount of material has ever been accumulated, and it is doubtful whether a similar amount will ever again be available." I then proposed to turn this material to a "practical use by the establishment of a clinical research program, including a follow-up

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--> system to determine the natural and post-treatment history of such diseases and conditions as might be selected for the study." By this means, it would be possible to ascertain the long-term effects of various forms of treatment, as well as the natural history of certain pathologic processes. I further stated that "[t]hese and other data, departing from a given base line and followed-up over long periods of time dispassionately and in the absence of special pleading, have never been available." I proposed that the project be a joint undertaking of the Army and the Veterans Administration, with the National Research Council assuming an important role in appointing a committee to initiate and implement the project and to "exercise a general supervisory function." I suggested that funding might be obtained through a direct federal subsidy or through a National Research Foundation, for which legislation was then pending and which later evolved into the National Science Foundation. Fortunately, Surgeon General Kirk heartily accepted my memorandum and recommended its consideration to the National Academy of Sciences-National Research Council. The enthusiastic and expeditious response of the Academy and the committees it established to assess the proposal and "explore the most effective means by which a medical research program utilizing this material can be carried out" is reflected in the fact that by May 7, 1946, less than two months after I wrote my memorandum to Surgeon General Kirk, a Committee on Veteran Medical Problems was appointed under the chairmanship of Dr. Edward D. Churchill. The committee directed the staff, which was then composed of Dr. Gilbert W. Beebe and me (we were both still in the military and assigned by the surgeon general to the National Academy of Sciences-National Research Council on temporary duty to work on this project) "to prepare the groundwork for Committee action." Dr. Beebe and I therefore prepared a "draft report of the character and scope of the follow-up proposal and the mission, structure, organization, and funding support." This report was discussed and generally approved by the committee at its final meeting on June 13, 1946. Within only about three months of my original proposal, on March 5, 1946, the program thus became operational under the aegis of the National Research Council, with the appointment of Dr. Beebe as its first full-time statistical analyst. As the originator of this program, I am most gratified to observe the impressive medical scientific contributions emanating from its activities during its half century of existence, as well as the valuable tangential contributions made in setting the standards for the procedures and mechanisms of follow-up studies. These standards have greatly influenced subsequent studies, such as epidemiologic investigations, multicenter controlled clinical trials, and so-called outcomes research. In great measure this has been due to the capable leadership of Gilbert Beebe, followed by that of Seymour Jablon, and more recently, Richard N. Miller, along with the dedicated advisory support of a wide array of scientists.

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--> As may be readily evident from this historical document, I am pleased that the original purpose of this program, both in vision and in reality, has been fully achieved. It has, however, "been considerably amplified, both in terms of its immediate advancement in medical scientific knowledge and in its impact on future endeavors in this field," as exemplified by the expansive and vigorous medical research activities of the armed forces and the Veterans Administration, which were virtually nonexistent before World War II. MICHAEL E. DEBAKEY, M.D. OLGA KEITH WEISS AND DISTINGUISHED SERVICE PROFESSOR OF SURGERY, AND DIRECTOR, DEBAKEY HEART CENTER

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--> Foreword The Medical Follow-up Agency is a national treasure for veterans and for long-term studies of health. Its data resources provide incomparable opportunities to follow very important populations and to ask creative questions about their well-being as well as the occurrence and significance of illness. The Twin Registry provides an opportunity to understand the impact of heredity on health and disease in a population of more than 16,000 pairs of twins (i.e., 32,000 veterans). The Medical Follow-up Agency is a living tribute to the vision, energy, and effectiveness of Michael E. DeBakey, M.D. Dr. DeBakey created the idea for the agency, obtained the appropriate approvals, staffed its initial creation, and 50 years later, spoke on the occasion of its golden anniversary. This sequence of events must be unique in the history of veterans' health and medical research. I congratulate the staff and the volunteers who have made the Medical Follow-up Agency so useful and effective over the past 50 years. This history is a testimony to their contributions. Support by the Departments on Defense and Veterans Affairs, and by the National Institutes of Health, has been crucial to the success of the agency. It is my hope that the partnership of staff, volunteers, scientists, and these government agencies will continue to provide useful information for health well into the next millennium. KENNETH I. SHINE, M.D.PRESIDENT, INSTITUTE OF MEDICINE

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--> Authors' Acknowledgments The authors of this monograph would like to thank the staff of the Medical Follow-up Agency (MFUA) and of the National Academy of Sciences archives for their considerable help. We are also grateful to the people who took the time to sit for formal oral interviews about the founding and development of the MFUA, namely, Dr. Gilbert Beebe, Dr. Michael DeBakey, Mr. Seymour Jablon, Dr. Richard Miller, and Dr. William Page. The authors would also like to acknowledge the contributions of Mr. Seymour Jablon, Dr. Lois Joellenbeck, Dr. Richard Miller, Dr. Robert Miller, Dr. James Norman, and Dr. William Page, who worked to prepare the study summaries located throughout this manuscript. Ms. Heather O'Maonaigh of the MFUA provided invaluable technical and editorial support to the authors during the production of this history. Finally, we would like to thank the reviewers of the manuscript: Dr. Gilbert Beebe, Mr. Seymour Jablon, Dr. John Kurtzke, Dr. James Norman, and Dr. Eldon Sutton. Thanks are also due to Ms. Florence Poillon, who served as consulting editor for the final draft of this publication. EDWARD D. BERKOWITZMARK J. SANTANGELO

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--> Contents 1   Creating the Agency   1     The Idea   1     Organizing a Plan of Action   5     Finding the Funding   6 2   The Early Committee Years   8     Follow-up Studies   9     Starting the Follow-up Agency   12     The First Round of Studies   14     Impact of the Korean War   15     Reviewing the Agency's Progress   19 3   Changing Times   22     New Projects in the Late 1950s   27     Transitions in Personnel   30     Decline of the Committee on Veterans Medical Problems   32     New Core Funds   36     Committee on Epidemiology and Veterans Follow-up Studies   38     The New Committee's Mission   39     The Twin and Prisoner of War Studies Mature   40     The Agency in the Age of the Great Society and Its Aftermath   46     Vietnam and the Veterans Administration   49 4   Recent Decades   53     The Fire in Saint Louis   56     At Mid-Decade   60

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-->   The Assembly of Life Sciences 61   Seymour Jablon in Charge 62   William Page's Interim 69   The 1990s 72   Conclusion 75  Notes 77  Medical Follow-up Agency Publication List, 1946–1996 87  Index 125  About the Authors 131

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--> Boxes 1.   Study of Peripheral Nerve Injury   17 2.   Mortality Studies of Former Prisoners of War   20 3.   Studies of Tuberculosis   24 4.   Studies of Head Injury   27 5.   Studies of Atomic Bomb Survivors   29 6.   Studies of Lung Cancer Mortality and Exposure to Mustard Gas   34 7.   Studies of Multiple Sclerosis   36 8.   Morbidity Studies of Former Prisoners of War   42 9.   The NAS-NRC Twin Registry   45 10.   Study of Splenectomy and Subsequent Mortality   55 11.   Health Effects of Occupational Exposure to Microwave Radiation (RADAR)   57 12.   Study of Cardiovascular Disease Following Traumatic Limb Amputations   65 13.   Follow-up of Veterans Experimentally Exposed to Chemical Agents   66 14.   A 41-Year Follow-up of Hepatitis B Epidemic in the U.S. Army   68 15.   Study of Hemorrhagic Fever with Renal Syndrome   72 16.   Health Consequences of Persian Gulf War Service   73 17.   Studies of Participants in Atmospheric Tests of Nuclear Weapons   74

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