The Surgeon General's Workshop on INCREASING ORGAN DONATION PROCEEDINGS Washington, DC. July 8-10, 1991 U.S. DEPARTMENT OF HEALTH & HUMAN SERVICES Public Heaith Service ACKNOWLEDGEMENTS The Surgeon General's Workshop on Organ Donation was supported by the Division of Organ Transplantation, Bureau of Health Resources Development, Health Resources and Services Administration. Veretta W. Blake was a much valued con- sultant to the Division of Organ Transplan- tation, bringing courage and inspiration to the many lives she touched. Her contribu- tion to the planning and conduct of this workshop was invaluable. Ms. Blake died on January 5, 1992. She will remain an inspiration to her colleagues and friends and she will be dearly missed. All material in this volume is in the public domain and may be used or reproduced without permission from the Office of the Surgeon General, the Division of Organ Transplantation, or the authors. Citation of the source is appreciated. The opinions expressed herein are the views of the authors and participants and do not necessarily reflect the official position of the Office of the Surgeon General, the U.S. Public Health Service, rhe Health Resources and Services Administration, or any other agency of the U. S. Government. ii FOREWORD Ihe Surgeon General's Workshop on Increasing Organ Donation held in July 1991 was a response to the critical need to raise donation levels. The workshop brought together approximately 125 individuals from very diverse backgrounds including medicine, nursing, law, bioethics, hospital administration, public relations, and funeral homes. Other participants included transplant recipients, lawmakers, social workers, members of donor families, and representatives of national health associations. Minority groups were also represented. After two days of careful thought and discussions, the participants submitted a list of recommendations on how to increase donation levels. Those recommendations are presented in this document. A companion publication contains the background papers written specifically for this workshop. It is my sincere hope that these publications, representing the collective thoughts of some of the best minds in the transplant field, will motivate more people to promote organ donation and confirm the efforts of those already fighting for this important cause. Most important, I hope that the results of this workshop and the ensuing implementation of the recom- mendations will translate into a second chance at life for all who await donor organs. AntoniaC.Novello,M.D.,M.P.H. Surgeon General . . . 111 I ADVISORY COMMI'ITEE TO -ON GE- DON- Patricia Aiken-O'Neill, Esq. Executive Director Eye Bank Association of America Washington, D.C. Nancy Ascher, M.D., Ph.D. Professor of Surgery Chief, Liver Transplant Division University of California - San Francisco San Francisco, California Charles K. Atkin, Ph.D. Professor Department of Communications Michigan State University East Lansing, Michigan Ashley Baquero, M.D. Medical Director Organ Transplant Institute Schumpert Medical Center Shreveport, Louisiana Christopher Blagg, M.D. Executive Director Northwest Kidney Center Seattle, Washington Clive 0. Callender, M.D. Director, Transplant Center Howard University Hospital Washington, D.C. James F. Childress, Ph.D. Professor of Religious Studies Department of Religious Studies University of Virginia Charlettsville, Virginia iv Jeptha W. Dalston, Ph.D. Chief Executive Officer Hermann Hospital Houston, Texas John Davis Executive Director National Kidney Foundation New York, New York Barbara A. Elick, BSN, RN, CCIVCPTC President North American Transplant Coordinators Organization Chief Transplant Coordinator Transplant Center University of Minnesota Hospital and Clinic Minneapolis, Minnesota Roger W. Evans, Ph.D. Research Scientist Health and Population Study Center Battelle Human Affairs Research Centers Seattle, Washington M. Roy First, M.D. President American Society of Transplant Surgeons Professor of Internal Medicine Director of Section on Transplantation University of Cincinnati Medical Center Cincinnati, Ohio Louise Jacobbi Executive Director Louisiana Organ Procurement Agency Metairie, Louisiana Olga Jonasson, M.D. Chairperson Department of Surgery Ohio State University Columbus, Ohio Michael Kaplan, M.D. President Association of Organ Procurement Organization Associate Professor of Surgery Wayne State University Harper Hospital Department of Surgery Detroit, Michigan Jeanne Mowe Executive Director American Association of Tissue Banks McLean, Virginia Jeffrey Prottas, Ph.D. Research Professor Bigel Institute Brandeis University Walston, Massachusetts Sarah Sanford, R.N., M.A. Executive Director American Association of Critical Care Nurses Aliso Viejo, California Edith Servino, R.N. Director of Education United Network for Organ Sharing Richmond, Virginia Charles Shield, M.D. General Surgeon Wichita Surgical Group Wichita, Kansas David E.R. Sutherland, M.D., Ph.D. Professor of Surgery University of Minnesota Hospital and Clinic Minneapolis, Minnesota vi Phyllis Weber, R.N. Executive Director California Transplant Donor Network San Francisco, California Andrea A. Zachary, Ph.D. Chief Transplantation Section Division of Allergy, Immunology, and Transplantation National Institute of Allergy and Infectious Diseases National Institutes of Health Bethesda, Maryland vii FEDERAL PARTICIPANTS WORKSHOP COORDINATING COMMITTEE Antonia C. Novello, M.D., M.P.D., Surgeon General, U.S. Public Health Service Judith B. Braslow, Director, Division of Organ Transplantation, Bureau of Health Resources Development, Health Resources and Services Administration Mary L. Ganikos, Ph.D., Chief, Public and Professional Education Branch, Division of Organ Transplantation, Bureau of Health Resources Development, Health Resources and Services Administration Margaret D. Garikes, Executive Assistant to the Surgeon General, Office of the Surgeon General, Public Health Service Dushanka Kleinman, D.D.S., MScD, Special Assistant to the Surgeon General, Office of the Surgeon General, Public Health Service Gwen Mayes, MMSc, CPTC, Public Health Analyst, Operations and Analysis Branch, Division of Organ Transplantation, Bureau of Health Resources Development, Health Resources and Services Administration Consultant: Veretta Blake, Liver Transplant Recipient OFFICE OF THE SURGEON GENERAL Antonia C. Novello, M.D., M.P.H., Surgeon General, U.S. Public Health Service 0. Marie Henry, R.N., D.N.Sc., Deputy Surgeon General Rice C. Leach, M.D., Chief of Staff Jan Aamodt, Communications and Correspondence Coordinator Mary Jane Fingland, Director of Public Affairs Margaret D. Garikes, Executive Assistant to the Surgeon General Dushanka Kleinman, D.D.S., MScD, Special Assistant to the Surgeoil General . . . Vlll BUREAU OF HEALTH RESOURCES DEVELOPMENT HEALTH RESOURCES AND SERVICES ADMINISTRATION Judith B. Braslow, Director Jon L. Nelson, Deputy Director Remy Aronoff, Chief, Operations and Analysis Branch Janice K. Bennett, Special Assistant to the Chief, Public and Professional Education Branch Veretta Blake, Consultant, Public and Professional Education Branch Nan Buczek, Secretary, Operations and Analysis Branch Doreen Brandes, Secretary, Public and Professional Education Branch Joyce Brown, Public Health Analyst, Public and Professional Education Branch Mary L. Ganikos, Ph.D., Chief, Public and Professional Education Branch Philomena Green, Public Health Analyst, Operations and Analysis Branch Evelyn Klitsch, Division Secretary Michelle Holland, Secretary, Public and Professional Education Branch Vera Lake, Public Health Analyst, Public and Professional Education Branch Gwen Mayes, MMSc, CJTC, Public Health Analyst, Operations and Analysis Branch . . of m Dorothy M. Bailey, Chief, Resources Information Branch Patricia Delaney, Senior Public Health Analyst, Resources Information Branch ix Devu Emily L. Haley, Director Allison A. Hammond, RN, BSN, Legislative Analyst Larry Wannemacher, Senior Public Health Analyst ABBREVIATIONS AA-l-B ABTC ACl- AHA AOPO ASHI ASTP ASTS CDC DHHS DOT EBAA ESRD HCFA HHS HIV HRSA IHS M0-r-r~~ American Association of Tissue Banks American Board of Transplant Coordinators American Council on Transplantation American Hospital Association Association for Organ Procurement Organizations American Society for Histocompatibility and Immunogenetics - American Society for Transplant Physicians American Society for Transplant Surgeons Center for Disease Control Department of Health and Human Services Division of Organ Transplantation Eye Bank Association of America End Stage Renal Disease Health Care Financing Administration Health and Human Services (Department of) Human Immunodeficiency Virus Health Resources and Services Administration Indian Health Service Minority Organ/Tissue Transplant Education Center xi MHC NATCO NIH NKF OPO OPT-N PHS RFC RFP SEOPF TRIO UNOS USRDS Major Histocompatibility Complex North American Transplant Coordinators Organization National Institutes of Health National Kidney Foundation Organ Procurement Organization Organ Procurement and Transplantation Network Public Health Service Request for Contract Request for Proposal South-Eastern Organ Procurement Foundation Transplant Recipients International Organization United Network for Organ Sharing United States Renal Data System xii CONTENTS Page Foreword . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . iii Advisory Committee . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . iv Federal Staff . . . . . , . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . viii fi&viations . . . . . . , . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . xi Remarks and Presentations Monday, July 8,199l . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1 Judith Braslow Robert G. Harmon, M.D., M.P.H. Antonia C. Novello, M.D., M.P.H. Tuesday, July 9, 1991 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5 Antonia C. Novello, M.D., M.P.H. Judith B. Braslow M. Roy First, M.D. Louis A. Sullivan, M.D. Wednesday, July lo,1991 . . . . . . . . . . . . . . . . . . . . . . . . . . . . 28 Judith B. Braslow Antonia C. Novello, M.D., M.P.H. Recommendations k Work Group I-A . . . . . . + . . . . . . . . . . . . . . . . . . . . . . . . . . . 33 A National Campaign: Focusing on the General Public Work Grou I-B . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 37 A R ational Campaign: Focusing on Diverse Socio-Economic and Cultural Groups Work Group I-C . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 51 A National Campai Children, Youth, and oung Adults r : Focusing on Work Group II-A . . . . . . . . . . . . . . . . . . . . . . , . . . . . . . . . . . 59 The Delivery System Work Group II-B . . . . . . . . . . . . . . . . . . . . . . . . . . . . , . . . . . 67 Professional Education Work Group III-A . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 71 Re-examining Donor Criteria: Cadaveric Donors Work Group III-B . , . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 73 Re-evaluating Donor Criteria - Live Donors List of Participants . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 77