HIV AND DISABILITY
Updating the Social Security Listings
INSTITUTE OF MEDICINE
OF THE NATIONAL ACADEMIES
THE NATIONAL ACADEMIES PRESS
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NOTICE: The project that is the subject of this report was approved by the Governing Board of the National Research Council, whose members 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 the report were chosen for their special competences and with regard for appropriate 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, findings, 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.
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Suggested citation: IOM (Institute of Medicine). 2010. HIV and Disability: Updating the Social Security Listings. Washington, DC: The National Academies Press.
THE NATIONAL ACADEMIES
Advisers to the Nation on Science, Engineering, and Medicine
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 Academy 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.
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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 Institute 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.
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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
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,
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 certain that an independent examination of this report was carried out in accordance 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.
The Listing of Impairments (the Listings) of the Social Security Administration 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 appeal 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 Listings, 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 damaged by HIV infection.
New drugs and the concept of drug combinations evolved dramatically after 1996. HIV infection is now considered a chronic condition which, in optimal settings, allows high levels of functioning and prolonged
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 adherence 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 patients 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 complications. For all these reasons, the HIV Infection Listings are in urgent need of reconsideration and revision.
The Social Security Administration commissioned the Institute of Medicine 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 beginning 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 primarily 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
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 assess 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 remain 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 conditions 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 disability 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 allowance 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
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 Medicine, whose expertise and dedication to this analysis were a model of professionalism.
Paul Volberding, Chair
Committee on Social Security HIV Disability Criteria
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
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 Determination Services offices and their staff for meeting with committee members and explaining the disability process:
La Jolla, CA
New York, NY
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 throughout 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 support 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.