NATIONAL ACADEMY PRESS
2101 Constitution Avenue, N.W. Washington, D.C. 20418
NOTICE: The project that is the subject of this report and its technical appendixes 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.
Library of Congress Cataloging-in-Publication Data
Institute of Medicine (U.S.). Committee for the Study of the Medicare ESRD Program.
Kidney failure and the federal government / Committee for the Study of the Medicare ESRD Program, Division of Health Care Services, Institute of Medicine ; Richard A. Rettig and Norman G. Levinsky, editors.
p. cm.
Includes bibliographical references and index.
ISBN 0-309-04432-4
1. United States. Medicare Bureau. End-Stage Renal Disease Program. 2. Chronic renal failure—Government policy—United States. 3. Medicare. I. Rettig, Richard A. II. Levinsky, Norman G. (Norman George), 1929- . III. Title.
[DNLM: 1. Health Policy—United States. 2. Kidney Failure, Chronic—economics—United States. 3. Kidney Failure, Chronic—therapy. 4. Medicare—economics. WJ 342 I593k]
RA645.K5157 1991
362.1'9614'00973—dc20
DNLM/DLC 91-15611
for Library of Congress CIP
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
The serpent has been a symbol of long life, healing, and knowledge among almost all cultures and religions since the beginning of recorded history. The image adopted as a logotype by the Institute of Medicine is based on a relief carving from ancient Greece, now held by the Staatlichemussen in Berlin.
COMMITTEE FOR THE STUDY OF THE MEDICARE ESRD PROGRAM
NORMAN G. LEVINSKY, M.D., Chair,
Department of Medicine, Boston University Medical Center, Boston, Massachusetts
CARMELLA A. BOCCHINO, R.N., M.B.A.,
Nursing Economics, Washington, D.C.
CLIVE O. 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, A.C.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
MARJORIE J. POWERS, Ph.D., R.N.,
Department of Medical and Surgical Nursing, University 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
Study Staff
Division of Health Care Services
KARL D. YORDY, Director
RICHARD A. RETTIG, Study Director
JOEL H. BROIDA (1989)
YEN-PIN CHIANG, Research Associate
ANNE PAGE CHIAPELLA, Research Associate
DIANE B. MURDOCK, Research Associate
GREGORY P. YOUNG, Research Associate
DOUGLAS JOHNSON, Research Assistant
NAOMI H. HUDSON, Project Secretary
BRENDA A. PATTERSON, Project Secretary
Acknowledgments
This report results from the deliberations of the Institute of Medicine Committee for the Study of the Medicare End-Stage Renal Disease Program and its recommendations reflect the judgments of the committee.
The actual preparation of the report under the direction of the committee has been accomplished by the collective efforts of committee members, staff, and other contributors. The committee wishes to acknowledge its gratitude for these various contributions.
The committee thanks the authors of the commissioned papers and contract reports for their invaluable input to the deliberations of the committee and to its report. These experts include: William Amend, Marjorie A. Cahn, Harold I. Feldman, Richard N. Fine, Jose R. Garcia, Daniel S. Gaylin, Frank A. Gotch, Victor M. Hawthorne, Philip J. Held, Prakash Keshaviah, Michael J. Klag, Susan L. Laudecina, Bernard Lo, Nathan W. Levin, Edith T. Oberley, Mark V. Pauly, Anna Pesce, Victor E. Pollack, Drummond Rennie, Ash Seghal, Jonathan Showstack, and Constance S. Thomas. Their specific papers and reports are listed in Appendix C. In particular, it thanks Robert A. Wolfe for his essay, "Survival analysis methods for the End-Stage Renal Disease (ESRD) program of Medicare," published as Appendix D.
The committee expresses its appreciation to those individuals and organizations who testified before its two public hearings (Appendixes E and F), to the participants in the three workshops on ESRD staffing, kidney transplantation, and black and nonwhite renal failure patients (Appendixes G, H, and I), and to the participants in the patient focus groups (Appendix J).
The committee benefited from the work of the following consultants: Marcia F. Clark, Betty C. Crandall, John G. Eresian, Judith R. Lave, Dale Lupu, Naomi Naierman, and 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 document and prepared the Summary and Chapter 1. The other contributors to specific chapters were: Chapter 2, Gregory P. Young and Edith T. Oberley; Chapter 3, Christine K. Cassel, Alvin W. Moss, Richard A. Rettig, and Norman G. Levinsky; Chapter 4, Anne P. Chiapella, with the assistance of Paul W. Eggers; Chapter 5, Anne P. Chiapella; Chapter 6, Yen-Pin Chiang and Gregory P. Young; Chapter 7, Gregory P. Young and Yen-Pin Chiang; Chapter 8, Richard A. Rettig, Gregory P. Young, and Douglas Johnson; Chapter 9, Diane B. Murdock and Yen-Pin Chiang; Chapter 10, Richard A. 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 Chapters 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 quality 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 assistant; and 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-99338/3-02). 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.
LIST OF TABLES AND FIGURES
TABLES
1-1 |
Incidence and Prevalence of Patients in Medicare End-Stage Renal Disease (ESRD) Program, 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 (ESRD) 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 Veterans 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 (ESRD) Patients, 1968–77 |
|||
4-3 |
New End-Stage Renal Disease (ESRD) Patients by Age, Gender, Race, and Primary Diagnosis, 1978–89 |
|||
4-4 |
New End-Stage Renal Disease (ESRD) Patients per Million Population by Age, Gender, and Race, 1987 |
|||
4-5 |
New End-Stage Renal Disease (ESRD) Patients per Million Population by Primary Diagnosis, Gender, and Race, 1988 |
4-6 |
Prevalent End-Stage Renal Disease (ESRD) Patients by Age, Gender, Race, and Primary Diagnosis, 1978–89 |
|||
4-7 |
Gross and Unadjusted One-Year Mortality for All End-Stage Renal Disease (ESRD) Patients, 1978–88 |
|||
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 (ESRD) 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 (ESRD) Patients, 1978 and 1987 |
|||
5-2 |
Percentage of Pediatric End-Stage Renal Disease (ESRD) Patients with Functioning Graft, 1978 and 1987 |
|||
5-3 |
Pediatric End-Stage Renal Diseases (ESRD) Patient Survival (percent) at One Year by Year of Incidence and Age Group, 1978 and 1987 |
|||
5-4 |
New End-Stage Renal Disease (ESRD) Patients in 1978 and 1988, by Age Group |
|||
5-5 |
Patients with Diabetic Kidney Disease as a Percentage of Total End-Stage Renal Disease (ESRD) 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 (ESRD) per 10 Million Population by Age Group for Blacks and Whites in 1988 |
|||
5-8 |
End-Stage Renal Disease (ESRD) 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 |
|||
6-3 |
Outpatient Dialysis Providers, Independent Versus Hospital-Based, 1980–88 |
|||
6-4 |
Outpatient Dialysis Providers, For-Profit Versus Not-For-Profit, 1980–88 |
|||
6-5 |
Outpatient Dialysis Providers, by Profit Status and Type of Facility, 1980–88 |
6-6 |
Outpatient Dialysis Providers, by Facility Size, 1980–88 |
|||
6-7 |
Outpatient Dialysis Providers, by Type of Facility, Profit Status, and Size, 1980–88 |
|||
6-8 |
Hemodialysis Stations, by Type of Facility, Profit Status, and Size, 1980–88 |
|||
7-1 |
Medicare Eligibility Status of Dialysis Patients, 1980–89 |
|||
7-2 |
Percentage of Non-Medicare Patients Among Total Dialysis Patients, by State and Year, 1980–89 |
|||
7-3 |
Percentage of Non-Medicare Patients Among Total Dialysis Patients, by City Versus State, and Year, 1980–87 |
|||
7-4 |
Services of State Kidney Programs |
|||
7-5 |
Trends in State Kidney Program Expenditures |
|||
7-6 |
Department of Veterans Affairs (DVA) Expenditures for Dialysis Patients, 1980–89 |
|||
7-7 |
ESRD Facility Capacity and Utilization, 1984 and 1988 |
|||
7-8 |
Connecticut ESRD Patient Log |
|||
7-9 |
Percentage of Non-Medicare Total Dialysis Patients by State and Year, 1980–89 |
|||
|
Appendix: Estimated Additional Program Expenditures Required for Universal Entitlement of Medicare ESRD Program, 1990–95 |
|||
8-1 |
Number and Type of Kidney Transplant Procedures (Medicare and Non-Medicare), by Donor Type, 1980–89 |
|||
8-2 |
One-Year Survival of Kidney Transplant Patients 1980, 1984, and 1988 |
|||
8-3 |
Distribution of Kidney Transplants (percent) by Age and Type of Transplant, 1989 |
|||
8-4 |
Percentage of Responses to Organ Transplantation/Donation Surveys, 1983, 1984, and 1987 |
|||
|
Appendix: Estimated Additional Medicare ESRD Program Expenditures Required for Removing the 3-Year Eligibility Limit of Transplant Patients and the 1-Year Limit on Payment for Immunosuppressive Drugs, 1990–95 |
|||
9-1 |
Comparison of the Inpatient Hospital Prospective Payment System (PPS) and ESRD Outpatient Dialysis Payment Policy |
|||
9-2 |
Medicare Payment for Facility Outpatient Dialysis Services |
|||
9-3 |
Medicare ESRD Benefit Payments, by Type of Service, 1974–87 (in millions of dollars and as percent of total) |
|||
10-1 |
Outpatient Dialysis Units: Staff Hours per Patient-Week, 1982 and 1987 |
|||
10-2 |
Staffing Changes, 1986–1990: North Central Dialysis Centers, Chicago, Illinois |
|||
11-1 |
Injections for Per Year Complex Medications, Hemodialysis Outpatients, University of Cincinnati Medical Center and Dialysis Clinic, Inc.-Cincinnati, 1978–1989 |
11-2 |
Outpatient Dialysis Facilities, 1985: Distribution of Differences (in dollars) Between Facility-Specific Composite Rates and Audited Costs |
|||
11-3 |
Outpatient Dialysis Facilities, 1985: Distribution of Differences (in dollars) Between Facility-Specific Composite Rates and Reported (unaudited) Costs |
|||
11-4 |
Outpatient Dialysis Facilities, 1985: Comparison of Differences Between Reported (unaudited) and Audited Costs (in dollars) |
|||
11-5 |
Results of Alternative Scenarios for Rebasing and Updating the ESRD Composite Rate for All Dialysis Facilities |
|||
12-1 |
Conditions of Coverage for ESRD Providers |
|||
13-1 |
Medicare Data Sources and Data Files for ESRD Patients and Providers |
|||
D-1 |
Death Rates and Age Among All Black ESRD Patients in 1988 |
|||
D-2 |
Survival Probabilities for ESRD Patients Incident in 1979 |
FIGURES
1-1 |
Medicare ESRD Benefit Payments |
|||
4-1 |
Number of ESRD Patients by Age Group, 1978–88 |
|||
4-2 |
Number of ESRD Patients by Primary Diagnosis, 1978–88 |
|||
4-3 |
Number of ESRD Patients, Actual and Projected, 1974–2000 |
|||
5-1 |
ESRD Patients: Treatment Modality by Age Group, 1988 |
|||
5-2 |
Age Distribution of New ESRD Patients, by Race, 1988 |
|||
5-3 |
Distribution of Primary Diagnosis Leading to ESRD, by Race, 1986–88 |
|||
5-4 |
ESRD Patients, by Race, 1978–88 |
|||
5-5 |
Two-Year Survival of Transplanted Cadaver Kidneys, by Race, 1978–88 |
|||
6-1 |
Outpatient Dialysis Units, 1980–88: Independent Versus Hospital-Based |
|||
6-2 |
Outpatient Hemodialysis Stations, 1980–88: Independent Versus Hospital-Based Units |
|||
6-3 |
Outpatient Hemodialysis Units, 1980–88: For-Profit Versus Not-For-Profit |
|||
6-4 |
Outpatient Hemodialysis Stations, 1980–88: For-Profit Versus Not-For-Profit Units |
|||
6-5 |
Outpatient Dialysis Units, by Size, 1980–88 |
|||
8-1 |
Kidney Transplantation Procedures and ESRD Patients on Waiting Lists, 1980–88 |
|||
9-1 |
Outpatient Dialysis Reimbursement Rates for Independent Units, 1973–89 (current and constant dollars) |
|||
12-1 |
Conceptual Framework of the Medical Outcomes Study |