HIV AND DISABILITY

Updating the Social Security Listings

Committee on Social Security HIV Disability Criteria

Board on the Health of Select Populations

INSTITUTE OF MEDICINE
OF THE NATIONAL ACADEMIES

THE NATIONAL ACADEMIES PRESS

Washington, D.C.
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HIV AND DISABILITY Updating the Social Security Listings Committee on Social Security HIV Disability Criteria Board on the Health of Select Populations

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THE NATIONAL ACADEMIES PRESS 500 Fifth Street, N.W. Washington, DC 20001 NOTICE: The project that is the subject of this report was approved by the Govern- ing Board of the National Research Council, whose members are drawn from the councils of the National Academy of Sciences, the National Academy of Engineer- ing, and the Institute of Medicine. The members of the committee responsible for the report were chosen for their special competences and with regard for appropri- ate balance. This study was supported by Contract No. SS00-09-30965 between the National Academy of Sciences and U.S. Social Security Administration. Any opinions, find- ings, conclusions, or recommendations expressed in this publication are those of the author(s) and do not necessarily reflect the view of the organizations or agencies that provided support for this project. International Standard Book Number-13: 978-0-309-15701-8 International Standard Book Number-10: 0-309-15701-3 Additional copies of this report are available from The National Academies Press, 500 Fifth Street, N.W., Lockbox 285, Washington, DC 20055; (800) 624-6242 or (202) 334-3313 (in the Washington metropolitan area); Internet, http://www.nap. edu. For more information about the Institute of Medicine, visit the IOM home page at: www.iom.edu. Copyright 2010 by the National Academy of Sciences. All rights reserved. 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 serpent ad- opted as a logotype by the Institute of Medicine is a relief carving from ancient Greece, now held by the Staatliche Museen in Berlin. Suggested citation: IOM (Institute of Medicine). 2010. HIV and Disability: Updat- ing the Social Security Listings. Washington, DC: The National Academies Press.

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“Knowing is not enough; we must apply. Willing is not enough; we must do.” — Goethe Advising the Nation. Improving Health.

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The National Academy of Sciences is a private, nonprofit, self-perpetuating society of distinguished scholars engaged in scientific and engineering research, dedicated to the furtherance of science and technology and to their use for the general welfare. Upon the authority of the charter granted to it by the Congress in 1863, the Acad- emy has a mandate that requires it to advise the federal government on scientific and technical matters. Dr. Ralph J. Cicerone is president of the National Academy of Sciences. The National Academy of Engineering was established in 1964, under the charter of the National Academy of Sciences, as a parallel organization of outstanding en- gineers. It is autonomous in its administration and in the selection of its members, sharing with the National Academy of Sciences the responsibility for advising the federal government. The National Academy of Engineering also sponsors engineer- ing programs aimed at meeting national needs, encourages education and research, and recognizes the superior achievements of engineers. Dr. Charles M. Vest is presi- dent of the National Academy of Engineering. The Institute of Medicine was established in 1970 by the National Academy of Sciences to secure the services of eminent members of appropriate professions in the examination of policy matters pertaining to the health of the public. The Insti- tute acts under the responsibility given to the National Academy of Sciences by its congressional charter to be an adviser to the federal government and, upon its own initiative, to identify issues of medical care, research, and education. Dr. Harvey V. Fineberg is president of the Institute of Medicine. The National Research Council was organized by the National Academy of Sci- ences in 1916 to associate the broad community of science and technology with the Academy’s purposes of furthering knowledge and advising the federal government. Functioning in accordance with general policies determined by the Academy, the Council has become the principal operating agency of both the National Academy of Sciences and the National Academy of Engineering in providing services to the government, the public, and the scientific and engineering communities. The Coun- cil is administered jointly by both Academies and the Institute of Medicine. Dr. Ralph J. Cicerone and Dr. Charles M. Vest are chair and vice chair, respectively, of the National Research Council. www.national-academies.org

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COMMITTEE ON SOCIAL SECURITY HIV DISABILITY CRITERIA PAUL A. VOLBERDING (Chair), Professor and Vice Chair, Department of Medicine at the University of California–San Francisco, and Chief of the Medical Service, Veterans Affairs Medical Center, San Francisco JOHN G. BARTLETT, Professor of Medicine, Division of Infectious Diseases at the Johns Hopkins University School of Medicine, Baltimore, Maryland CARLOS DEL RIO, Professor and Chair, Hubert Department of Global Health at the Rollins School of Public Health and Professor of Medicine, Division of Infectious Diseases at the Emory University School of Medicine Atlanta, Georgia PATRICIA M. FLYNN, Arthur Ashe Chair in Pediatric AIDS Research and Director of Clinical Research, Infectious Disease Department at St. Jude Children’s Research Hospital, Memphis, Tennessee LARRY M. GANT, Professor of Social Work, University of Michigan IGOR GRANT, Distinguished Professor of Psychiatry and Director of HIV Neurobehavioral Research Programs, University of California– San Diego H. CLIFFORD LANE, Clinical Director, National Institute of Allergy and Infectious Diseases at the National Institutes of Health, Rockville, Maryland CELIA MAXWELL, Assistant Vice President for Health Sciences and Director of the Women’s Health Institute, Howard University, Washington, DC HEIDI M. NASS, Director of Treatment Education and Community Advocacy, University of Wisconsin Hospital HIV/AIDS Comprehensive Care Program, Madison IRA SHOULSON, Louis C. Lasagna Professor of Experimental Therapeutics and Professor of Neurology, Pharmacology and Medicine, University of Rochester School of Medicine and Dentistry, New York ANN BARTLEY WILLIAMS, Professor of Nursing and Associate Dean for Research, University of California–Los Angeles 

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Study Staff SAMANTHA M. CHAO, Study Director SUSAN R. McCUTCHEN, Senior Program Associate ERIN E. WILHELM, Research Associate JOI D. WASHINGTON, Senior Program Assistant FREDERICK (RICK) ERDTMANN, Director, Board on the Health of Select Populations i

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Reviewers This report has been reviewed in draft form by individuals chosen for their diverse perspectives and technical expertise, in accordance with procedures approved by the National Research Council’s Report Review Committee. The purpose of this independent review is to provide candid and critical comments that will assist the institution in making its published report as sound as possible and to ensure that the report meets institutional standards for objectivity, evidence, and responsiveness to the study charge. The review comments and draft manuscript remain confidential to protect the integrity of the deliberative process. We wish to thank the following individuals for their review of this report: SAM BOZZETTE, RAND Corporation JANE BURGESS, VA Greater Los Angeles Medical Center DWIGHT L. EVANS, University of Pennsylvania School of Medicine KENNETH C. HERGENRATHER, The George Washington University MARK ISHAUG, AIDS Foundation Chicago MICHAEL S. SAAG, University of Alabama at Birmingham ANDREW WIZNIA, Jacobi Medical Center BARRY ZEVIN, San Francisco Department of Public Health Although the reviewers listed above have provided many constructive comments and suggestions, they were not asked to endorse the conclusions or recommendations nor did they see the final draft of the report before its release. The review of this report was overseen by HAROLD JAFFE, ii

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iii REVIEWERS Centers for Disease Control and Prevention, and KRISTINE M. GEBBIE, School of Nursing Hunter College. Appointed by the National Research Council and Institute of Medicine, they were responsible for making cer- tain that an independent examination of this report was carried out in ac- cordance with institutional procedures and that all review comments were carefully considered. Responsibility for the final content of this report rests entirely with the authoring committee and the institution.

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Preface The Listing of Impairments (the Listings) of the Social Security Ad- ministration defines conditions for which disability can be accurately and efficiently determined with high specificity, granting a disability allowance only for those truly disabled. The Listings specify in detail the requirements for such an allowance based on the material submitted by the claimant and supported by medical records. In this system, those applying for disability benefits not allowed after the initial evaluation still can be deemed disabled, but only after a longer process of functional assessment and potentially ap- peal and examination. Therefore, it is critical that the Listings accurately reflect current understanding of the disease in question, specifically because this understanding affects the individual’s prognosis and expected level of function in the workplace. HIV infection as a disabling condition has evolved in fundamental ways since the listings for HIV infection were last updated in 1993. Then, HIV infection and its end-stage disease, AIDS, were rapidly fatal and essentially untreatable. AIDS was defined primarily by the diagnosis of one or more otherwise unusual opportunistic infections or cancers—ones that arose because of severe HIV-induced immune deficiency. The HIV Infection List- ings, appropriately at the time, were largely based on a history of diagnosis of these opportunistic diseases. Antiretroviral therapy in 1993 was of very modest potency, with only slight improvement in the immune system dam- aged by HIV infection. New drugs and the concept of drug combinations evolved dramati- cally after 1996. HIV infection is now considered a chronic condition which, in optimal settings, allows high levels of functioning and prolonged ix

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x PREFACE survival. Combinations of antiretroviral drugs suppress HIV replication, enabling a recovery of immune function as reflected in circulating CD4+ T-lymphocytes to normal or near-normal levels in most persons. Success in treatment, however, is far from universal. Many HIV-infected persons harbor virus already resistant to one or more antiretroviral drugs, limiting CD4 recovery. Others are diagnosed at very advanced disease stages or at an older age, both predictors of poor response to treatment. Many others find the lifelong requirement for consistently excellent medication adher- ence to be impossible or are suffering from the side effects of current or previous antiretroviral therapy. Today, although many of the opportunistic diseases once common are now uncommon, they are still seen. Many pa- tients respond well to treatment, but others, even in the era of potent HIV medications, fail to achieve control of HIV replication or are diagnosed in extremely late disease stages and have rapid progression or disabling com- plications. For all these reasons, the HIV Infection Listings are in urgent need of reconsideration and revision. The Social Security Administration commissioned the Institute of Medi- cine to examine the current listings for HIV infection and to suggest how they might be updated, considering the substantial changes in the disease since the introduction of potent combinations of antiretroviral drugs begin- ning in 1996. A committee of experts in HIV management and outcomes was created to address this charge and drafted a series of recommendations presented in this report. The committee had public hearings, reviewed the relevant literature, and commissioned data analyses from several of the largest ongoing cohort studies of HIV-infected persons. The committee also obtained input from the Centers for Disease Control and Prevention and other credible sources of information regarding HIV infection and disability. The committee used this information along with the expertise of its members in formulating recommendations for HIV-infected children and adults. Because HIV-infected children vary from adults in some specific conditions, their needs were the topic of a separate chapter. Categories of Recommended HIV Disability Allowances in This Report Low CD4 Count Although disability allowances in the 1993 Listings were based primar- ily on a diagnosis of an AIDS-related opportunistic infection or malignancy, the committee believes a more important indicator of disability today is a low CD4 cell count, specifically at or below 50 cells/mm3, because this is a direct marker of HIV disease stage and a predictor of short-term mortality risk as well as of attenuated antiretroviral therapy response. Many of the

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xi PREFACE most serious opportunistic diseases that form the 1993 Listings occur in individuals with low CD4 cell counts and thus would be captured by new Listings as recommended. The committee recommends that this allowance should be reviewed periodically—3 years would be most practical—to as- sess the magnitude and stability of the individual’s response to antiretroviral treatment. Imminently Fatal Conditions By contrast, the committee found several HIV-induced diseases that re- main so serious that they warrant a permanent disability allowance. These diseases are severely disabling, have a high short-term mortality risk, and respond minimally to conventional treatment. HIV-Associated Conditions Without Listings Elsewhere in Other Body Systems Disability allowance was also recommended for another group of con- ditions associated with HIV infection or side effects of treatment if the affected person also had functional limitations using standards already used under the existing listings. These conditions limit the affected person’s ability to function in the workplace. Because recovery from these may be possible with antiretroviral therapy, the committee recommended that dis- ability should, as with low CD4 counts, be considered a disability for 3 years and be reviewed regularly. HIV-Associated Diseases With Existing Listings Elsewhere Many HIV-infected persons experience a higher rate or earlier onset of diseases already included in the Listings in other body systems. For example, cardiovascular disease and chronic kidney disease are increasing problems in the HIV-infected population, but the current Listings for those organ systems adequately define a pathway to disability allowance. The committee believes, in these cases, that the cross-reference to those listings is the most efficient approach. Finally, the committee addressed means to improve the utility of the HIV Infection Listings. The committee recommended an ongoing review of the forms employed to best capture the information needed for allow- ance determination, and rewriting all introductory material for those most directly involved in the determination process. The committee believes wider access to deidentified disability data would enable research aimed at continuously improving the process. Finally, the committee recommended

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xii PREFACE broadening the array of health care professionals who are allowed input into the determination process, reflecting the many professionals involved in contemporary medical care. The committee thanks all those individuals and groups who provided input for this report and especially the staff of the Institute of Medi- cine, whose expertise and dedication to this analysis were a model of professionalism. Paul Volberding, Chair Committee on Social Security HIV Disability Criteria

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Acknowledgments The committee and staff would like to thank those who presented statements and presentations at the public workshops held on December 7, 2009, in Washington, DC, and on February 11, 2010, in Irvine, CA: Bebe Anderson, Lambda Legal Brent Braveman, University of Illinois Liza Conyers, University of Pittsburgh Judith Currier, University of California–Los Angeles Robert Heaton, University of California–San Diego Kevin Malone, Client of Whitman-Walker Clinic J. Scott Pritchard, Oregon Disability Determination Services and Medical Consultants Ad Hoc Committee of the National Association of Disability Examiners Michael Saag, University of Alabama and HIV Medical Association Susan Smith, National Association of Disability Examiners We would also like to acknowledge and thank those individuals and groups who provided the committee and staff with data to inform the committee’s discussions: Brian Agan, Uniformed Services University of the Health Sciences Keri Althoff, Johns Hopkins University John Brooks, Centers for Disease Control and Prevention Lynn E. Eberly, University of Minnesota The EuroSIDA Study Group Stephen J. Gange, Johns Hopkins University Kelly Gebo, Johns Hopkins University Michael Horberg, Kaiser Permanente xiii

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xi HIV AND DISABILITY Lisa P. Jacobson, Johns Hopkins University Amy Justice, Yale University Mari Kitahata, University of Washington Rosemary McKaig, National Institutes of Health Amanda Mocroft, University College London Richard Moore, Johns Hopkins University Michael Saag, University of Alabama and HIV Medical Association Luke Shouse, Centers for Disease Control and Prevention Janet P. Tate, Yale University The committee would also like to thank the following Disability De- termination Services offices and their staff for meeting with committee members and explaining the disability process: Detroit, MI Hartford, CT La Jolla, CA Madison, WI Nashville, TN New York, NY Oakland, CA Timonium, MD Washington, DC Worcester, MA In addition, we would to acknowledge and thank those individuals who provided the committee with their insights during the report process: Tony Burns, Client of Whitman-Walker Clinic; Richard Elion, Whitman-Walker Clinic; Erin Loubier, Whitman-Walker Clinic; and George Mathas, Client of Whitman-Walker Clinic. We would like to extend a special thanks to Howard Goldman, who served as an unpaid consultant to the committee. Dr. Goldman offered his support and guidance to the committee throughout the process. In addition, many Institute of Medicine staff members helped through- out the study process. The study staff would like to thank LaVita Coates- Fogle, Andrea Cohen, Linda Kilroy, Pamela McCray-Ramsey, Michael McGeary, William McLeod, and Jon Sanders for giving their time and sup- port to further the committee’s efforts during the study process. Finally, we would like to thank and recognize the support from the U.S. Social Security Administration for sponsoring this study. In particular, we would like to thank Barry Eigen, Sheila Everett, Monte Hetland, Johanna Klema, Cathy Lively, Joanna Marashlian, Mike O’Connor, Kevin Parmer, Paul Scott, Art Spencer, Janet Truhe, and Cheryl Williams.

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Contents SUMMARY 1 1 INTRODUCTION 15 Social Security Disability, 16 The Disability Evaluation Decision Process, 16 The Listing of Impairments, 20 Decision Process, 21 Medical Evidence, 22 Revising and Updating the Listings, 23 The HIV Infection Listings, 24 Functional Assessment of the Patient With HIV/AIDS, 26 IOM Committee, 29 Report Structure, 31 2 CURRENT CONCEPTS IN HIV/AIDS 33 Evolution of the Epidemic, 33 Management of HIV/AIDS, 36 Improvements in Functioning and Capacity to Return to Work, 39 3 LOW CD4 COUNT AS AN INDICATOR OF DISABILITY 45 Indicators of Disease Progression, 45 CD4 Count as an Indicator of Disability, 50 x

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xi CONTENTS 4 IMMINENTLY FATAL OR SEVERELY DISABLING HIV- ASSOCIATED CONDITIONS 53 Imminently Fatal or Severely Disabling Conditions, 53 Place in the Determination Process, 58 5 HIV-ASSOCIATED CONDITIONS WITHOUT LISTINGS ELSEWHERE 63 The Importance of Functioning in Determining Disability, 63 Conditions Currently Without Listings, 65 HIV-Associated Conditions in the Listings, 73 6 HIV-ASSOCIATED CONDITIONS WITH LISTINGS ELSEWHERE 77 Conditions Covered Elsewhere in the Listings, 77 Comorbidity in the Listings, 83 7 CONCEPTS SPECIFIC TO CHILDREN WITH HIV/AIDS 87 Survival and Prognosis, 88 Rationale for Listing Recommendations for Pediatric Patients, 92 8 MAXIMIZING THE UTILITY OF THE HIV INFECTION LISTINGS 101 Introductory Text, 101 Reevaluating the Listings, 103 Use of Data, 105 Information: Medical Records and SSA Disability Forms, 106 Acceptable Sources of Information, 106 Training of Disability Examiners and Medical Consultants, 107 Research on Functional Assessment and Return to Work, 108 APPENDIXES A Current HIV Infection Listings (14.08 and 114.08) 109 B Committee Charge 141 C HIV Background Tables 157 D Literature Tables 163 E Committee Member and Staff Biographies 185 INDEX 193