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# 16 of INSTITUTE OF MEDICINE PREPUBLICATIONCOPY Kidney Failure and the Federal Government Publication:Summer1991 ADVANCE COPY Not For Public Release Before: Wednesday, April 17, 1991 EDT 6:00p.m. KIDNEY FAILURE AND THE FEDERAL GOVERNMENT Committee for the Study ofthe Medicare ESRD Program Division ofHealth Care Services Institute ofMedicine Richard A. Rettig and Norman G. Levinsky, editors National Academy Press Washington, D.C. 1991 . Notice: The project that is the subject of this report and its technical appendices was approved by the Governing Board of the National Research Council, whose member are drawn from the councils of the National Academy of Sciences, the National Academy of Engineering, and the Institute of Medicine. The members of the committee responsible for this report were chosen for their special competencies and with regard for appropriate balance. The Institute of Medicine was chartered in 1970 by the National Academy of Sciences to enlist distinguished members of the appropriate professions in the examination of policy matters pertaining to the health of the public. In this, the Institute acts under both the Academy's 1863 congressional charter responsibility to be an adviser to the federal government and its own initiative in identifying issues of medical care, research, and education. This study was supported by the Health Care Financing Administration, U.S. Department of Health and Human Services, under Cooperative Agreement No. 14-C-99338/3-02 Publication IOM-91-06 Library of Congress Cataloging-in-Publication Data Library of Congress Catalog Card No. XXX International Standard Book Number XXX Institute of Medicine (U.S.). Division of Health Care Services The Medicare End-Stage Renal Disease Program This report "The Medicare End-State Renal Disease Program" is available from the National Academy Press, 2101 Constitution Avenue, N.W. Washington, D.C. 20418 , Copyright 1991 by the National Academy of Sciences No part of this book may be reproduced by any mechanical, photographic, or electronic process, or in the form of a phonographic recording, nor may it be stored in a retrieval system, transmitted, or otherwise copied for public or private use, without written permission from the publisher, except for the purpose of official use by the United States Government. Printed in the United States of America Committee for the Study of the Medicare EBRD Program NORMANUniG.verLsEiVtIyNSKSYch,ooMl.D.of, MCehdaiirc,ineD,epaBorsttmoenn,t MoafssMaedcihcuisneet,tsBoston CARMEWLhLaArtAo.n,BOCNCeHwINJOe,rseR.yN., M.B.A., Health Care Consultant CLIVE 0. CALLENDER, M.D., Department of Surgery, Howard University Hospital, Washington, D.C. CHRISTINE K. CASSEL, M.D., Department of Medicine, The University of Chicago Medical Center, Chicago, Illinois ROGER W. EVANS, Ph.D., Battelle Human Affairs Research Center Seattle, Washington ' RONALD M. FERGUSON, M.D., Ph.D., Department of Surgery, Ohio State University College of Medicine, Columbus, Ohio SHELDON GREENFIELD, M.D., New England Medical Center Hospitals Boston, Massachusetts PHILIP J. HELD, Ph.D., The Urban Institute, Washington, D.C. SUSAN M. JASKULA, M.S.W., Renal Dialysis of St. Louis, Inc., St. Louis, Missouri J. MICHAEL LAZARUS, M.D., Department of Medicine, Brigham and Women's Hospital, Boston, Massachusetts JOHN E. LEWY, M.D., Department of Pediatrics, Tulane University School of Medicine, New Orleans, Louisiana C. RICHARD NEU, Ph.D., The RAND Corporation, Santa Monica, California MAJORIE J. POWERS, Ph.D., R.N. Department of Medical and Surgical Nursing, Universi,ty of Illinois, Chicago, College of Nursing, Chicago, Illinois JOHN H. SADLER, M.D., Department of Medicine, University of Maryland School of Medicine, Baltimore, Maryland PAUL K. WHELTON, M.D., Johns Hopkins University Schools of Medicine and Public Health, Baltimore, Maryland MARSHA WOLFSON, M.D., Department of Medicine, Portland VA Medical Center, Portland, Oregon iii Study Staff Division of Health Care Services KARL D. YORDY, Director RICHARD A. RETTIG, Study Director JOEL BROIDA (1989) YEN-PIN CHIANG, Research Associate ANNE PAGE CHIAPELLA Research Associate DIANE B. MURDOCK, Re,search Associate GREGORY P. YOUNG, Research Associate DOUGLAS JOHNSON, Research Assistant NAOMI H. HUDSON, Project Secretary BRENDA A. PATTERSON, Project Secretary iv . . Acknowledgements This report results from the deliberations of the tSEhnded-sSjtuSadaggSemenRpteLsn!a?l?ofdDntiChsieenaesceoCm°mPrirtoitgterteae.me afn°dr tihtse rSetucdomymeonfdatthieonMsedirceafrleec"t wftcih.osemhmeicstTothmeetmeoitamtaceectmeukbanelohrwaslsp,erdebgepseetaanrfaiftta,sicocngoarnmdapotlfiiotsttuhhhdeeeerdrcbfeyooprnotrtrtthihebeuusnctedooelrvrlsae.rctithoieuvTsehdeireefcfcootmrimtoistnteooeff contributions and coThnetraccotmmirtetpeoertsthafnokrsthtehierauitnhvoarlsuabolfethienpuctomtmoissthieoned papers RGdioientcclchlihuab,dreedr:VaitN.citoWoniFrsilnleMio,.afmHJtaoAhwsmeteenhcdoRo,r.mnmeMiG,aatrrtcjePioehari,ilaeinpdDAa.nJt.ioeClHaiehtlnsS,d.,rGeHapPayorrlraoitkln.ad,shI.TFKrheaeFsnsehkeladvAmei.axanphe,rts 2DEirduiCtm^hmoeniT.d RAOewbnenrilfee9,y,,ASsMUhaSraknSegVL.h'alPL,aauuldJyoe,nciantAahn,annaBPSeehrsoncwaesr,tdacVLkoi,,ctoNarnadthE.aCnonPswo.tlalnaLcceevki'ns, Thomas. Their specific papers and reports are listed in Appendix C. In particular, it thanks Robert A. Wolfe for his essay p"rSougrrvaimvalofaMneadliycsairse,m"ethpoudbslisfhoerdthase AEpnpdenSdtiaxgeD.Renal Disease'(ESRD) The committee expresses its appreciation to those individuals and organizations who testified before its two public pwnhaooerrnatkwrishicihntgoiesppsanr(teoAsnnpaplEienSnRfdDtiahcieelssutrapefaEftiipaneangntd,tieF)nkftio,sdcuntseo(yAgtprhtpoereuanpnpdssiapxrlt(aiGA)ncptip,apetaaninndotdinsx,toHi)natndhteheblatchkreeand The committee benefited from the work of the following cEroenssiualnt,antJsu:dithMarR.ciaLavFe.,ClDaarlke,LuBpeut,tyNaC.omiCraNnadiaelrlm,an,JohanndG.Winfred W. Williams. The committee wishes to acknowledge the specific contributions of the following individuals to the particular chapters of the report. The study director, Richard A. Rettig, had primary responsibility for preparation of the report. He and the committee chairman, Norman G. Levinsky, edited the entire YdcoooucnnutgmreinbatundtoarnEsdditpthorepTs.apreecOdbiefritlcheeyc;hSaupCmthmeaarprstyerwaenrd3e,:CChharpCithseatrpitne1e.r K2.,TheGCarseosgteohlre,yr APlvin AW.nneMosPs.,ChRiiacphealrlda,A.wiRtehttitgh,e aansdsisNtoarnmcaen Go.f PLaeuvlinsW.ky;EggCehrasp;terCha4,pter RY5,ioucnhAgan;rndeCAhP..apRtCeehtritaip7g,e,llGarG;ergegoCorhryayptP.eP.rYoY6,ouunngYge,na-ndPainndYeDnCo-huPigialnnagsChainJadonhgnG;sroengC;ohraypCtheaP.rpte8,r 9, Diane B. Murdock and Yen-Pin Chiang; Chapter 10, Richard A. v Rettig and Yen-Pin Chiang; Chapter 11, Diane B. Murdock and Yen- Pin Chiang; Chapter 12, Richard A. Rettig, Sheldon Greenfield, John H. Sadler, and Klemens B. Meyer; Chapter 13, Richard A. Rettig; and Chapter 14, Richard A. Rettig and Anne P. Chiapella. Several members of the Institute of Medicine's professional staff contributed to this report. Karl D. Yordy, as Director of the Division of Health Care Services, provided valuable guidance over the duration of the project. Marilyn J. Field made very useful comments on a draft of Chapter 9, 10, and 11. Similarly, Kathleen N. Lohr reviewed a draft of Chapter 12 and, during the time the two projects overlapped, kept us informed of the progress of the Institute of Medicine's study of guality assurance in the Medicare program. The study and the resulting report would not have been possible without the dedicated support of the IOM staff, including Naomi Hudson, project secretary in 1990; Brenda Patterson, project secretary in 1989; H. Donald Tiller, administrative assistance; Lisa Chimento and Nina Spruill, financial specialists. Wallace Waterfall provided helpful editorial advice. Finally, support for this study was provided by the U.S. Department of Health and Human Services, Health Care Financing Administration, through a cooperative agreement (No. 14-C- 99228/3-02). At HCFA, we thank Charles Booth and Bernadette Schumaker, Bureau of Policy Development; Paul Mendelsohn and Suzanne Rohrer, Health Standards and Quality Bureau; Kathy Sagel and Roger Milam, Bureau of Data Management and Strategy; and Paul W. Eggers and Joel Greer, Office of Research. Our special thanks go to Carl Josephson, project officer, Office of Research. vi LIST OF TABLES 1-1 Incidence of New Patients and Prevalence of Patients in Medicare End-Stage Renal Disease (ESRD) Proqram. 1974- 89 1-2 New Elderly and Diabetic End-Stage Renal Disease (ESRD) Patients as a Percentage of New Medicare ESRD Patients 1-3 Projections of Medicare End-Stage Renal Disease Patients to the Year 2000 1-4 Cumulative Percentage Change in Medicare End-Stage Renal Disease (ESRD) Benefit Payments, 1974-88 Nominal and Real Dollar Payments 1-5 Growth of End-Stage Renal Disease (ESRD) Program: Patient Growth Versus Real-Dollar Benefit Payment Growth 1-6 End-Stage Renal Disease (ESRD) Benefit Payments by Type of Service, 1988 1-7 Medicare End-Stage Renal Disease (ESRD) Benefit Payments, 1974-88 1-8 End-Stage Renal Disease (ESRD) Expenditures in Department of Veteran Affairs, 1984-89 (millions of dollars) 4-1 Age of New Dialysis Patients, 1960-67 4-2 1967 Projections of New End-Stage Renal Disease Patients, 1968-77 4-3 New End-Stage Renal Disease Patients by Age, Gender, Race, and Primary Diagnosis, 1978-89 4-4 New End-Stage Renal Disease Patients per Million Population by Age, Gender, and Race, 1987 4-5 New End-Stage Renal Disease Patients per Million Population by Primary Diagnosis, Gender, and Race, 1988 4-6 Prevalent End-Stage Renal Disease Patients, 1978-89 4-7 Gross and Unadjusted One-Year Mortality for All End- Stage Renal Disease (ESRD) Patients, 1978-88 vii 4-8 Mortality for Medicare End-Stage Renal Disease (ESRD) Patients (ever-entitled) Adjusted For Age, Race, Gender, and Primary Diagnosis, 1978-88 Patient Cohorts 4-9 One-Year Mortality (percent) for All End-Stage Renal Disease Patients, at Year of Incidence, by Age, Gender, Race, and Primary Diagnosis, 1978-88 4-10 One-Year Mortality (percent) for Dialysis Patients at Year of Incidence by Age, Gender, Race and Primary Diagnosis, 1978-88 4-11 Five-Year Survival of Dialysis Patients by Country and Diagnosis of Diabetes 4-12 Medicare End-Stage Renal Disease (ESRD) Population Projections, Year 2000 5-1 Incidence and Prevalence of Pediatric End-Stage Renal Disease Patients, 1978 and 1987 5-2 Percentage of Pediatric Patients with Functioning Graft, 1978 and 1987 5-3 Pediatric Patient Survival (percent) at One Year by Year of Incidence and Age Group, 1978 and 1987 5-4 New End-Stage Renal Disease Patients in 1978 and 1988, by Age Group 5-5 Patients with Diabetic Kidney Disease as a Percentage of Total Patients, by Age Group 5-6 Percentage of U.S. Population with Definite Hypertension, 1976-80 5-7 Incidence of Treated Hypertensive End-Stage Renal Disease per 10 Million Population by Age Group for Blacks and Whites in 1988 5-8 End-Stage Renal Disease Treatment Modalities (percent) for Blacks and Whites on December 31, 1980, 1984, and 1988 5-9 Survival of Black Versus Other Dialysis Patients by Year of Incidence 6-1 Growth of Outpatient Dialysis Providers, 1980-88 6-2 Definitions of Dialysis Unit Size, Demand, Capacity, and Utilization viii