HIV SCREENING AND
ACCESS TO CARE

Exploring the Impact of Policies on
Access to and Provision of HIV Care

Committee on HIV Screening and Access to Care

Board on Population Health and Public Health Practice

INSTITUTE OF MEDICINE
           OF THE NATIONAL ACADEMIES

THE NATIONAL ACADEMIES PRESS

Washington, D.C.

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HIV SCREENING AND ACCESS TO CARE E x p l o r i n g t h e I m p a c t o f Po l i c i e s o n Acce s s t o a n d Prov i s i o n o f H I V C a re Committee on HIV Screening and Access to Care Board on Population Health and Public Health Practice

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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. HHSP23320042509XI between the National Academy of Sciences and the White House Office of National AIDS Policy. 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. International Standard Book Number-13: 978-0-309-16419-1 International Standard Book Number-10: 0-309-16419-2 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 2011 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 adopted 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). 2011. HIV Screening and Access to Care: Exploring the Impact of Policies on Access to and Provision of HIV Care. 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 engineers. 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 HIV SCREENING AND ACCESS TO CARE PAUL D. CLEARY (Chair), Dean, Yale School of Public Health, New Haven RONALD BAYER, Professor, Department of Sociomedical Sciences, Joseph L. Mailman School of Public Health, Columbia University, New York ERIC G. BING, Endowed Professor of Global Health and HIV, Charles R. Drew University of Medicine and Science, Los Angeles SCOTT BURRIS, Professor, School of Law, Temple University, Philadelphia J. KEVIN CARMICHAEL, Chief of Service, Special Immunology Associates, El Rio Community Health Center, Tucson SUSAN CU-UVIN, Professor of Obstetrics and Gynecology and Medicine, Brown University, Providence JENNIFER KATES, Director, Global Health Policy and HIV, The Henry J. Kaiser Family Foundation, Washington, DC ARLEEN A. LEIBOWITZ, Professor, School of Public Affairs, University of California, Los Angeles ALVARO MUÑOZ, Professor, Department of Epidemiology, Bloomberg School of Public Health, Johns Hopkins University, Baltimore LIISA M. RANDALL, Manager, HIV Prevention Programs, Michigan Department of Community Health, Lansing BETH SCALCO, Chief of Staff, Louisiana Office of Public Health, New Orleans VICTOR J. SCHOENBACH, Associate Professor, Department of Epidemiology, Gillings School of Global Public Health, University of North Carolina, Chapel Hill MARTIN F. SHAPIRO, Professor, Departments of Medicine and Health Services, University of California, Los Angeles LIZA SOLOMON, Principal Associate, Domestic Health Division, Abt Associates, Bethesda ANTONIA M. VILLARRUEL, Associate Dean for Research, School of Nursing, University of Michigan, Ann Arbor Project Staff MORGAN A. FORD, Study Director KAREN ANDERSON, Senior Program Officer CAROL MASON SPICER, Associate Program Officer (from November 2010) CHINA DICKERSON, Senior Program Assistant MARIA HEWITT, Rapporteur ROSE MARIE MARTINEZ, Director, Board on Population Health and Public Health Practice v

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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: Adaora Adimora, School of Medicine, University of North Carolina, Chapel Hill Charles C. J. Carpenter, The Miriam Hospital, Brown University Thomas J. Coates, School of Medicine, University of California, Los Angeles William L. Holzemer, College of Nursing, Rutgers, The State University of New Jersey Bruce Jennings, Center for Humans and Nature Roger J. Lewis, School of Medicine, University of California, Los Angeles Stephen Raffanti, Vanderbilt University Medical Center Although the reviewers listed above have provided many constructive comments and suggestions, they were not asked to endorse the conclu- vii

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viii REVIEWERS sions or recommendations nor did they see the final draft of the report before its release. The review of this report was overseen by Paul A. Volberding, University of California, San Francisco. Appointed by the National Research Council, he was 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.

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Contents ABBREVIATIONS AND ACRONYMS xiii ABSTRACT xv HIV SCREENING AND ACCESS TO CARE: EXPLORING THE IMPACT OF POLICIES ON ACCESS TO AND PROVISION OF 1 HIV CARE Report Organization, 3 Background, 4 Policies That Promote or Inhibit Clinical Care Services Among Agencies at the Federal Level, State Level, or Between Federal and State Agencies, 6 How Federal and State Agencies Can Provide More Integrated HIV Care Services, 32 HIV Medication Adherence Programs, 38 Payment for Treatment of Earlier Stage HIV Infection, 47 Conclusions, 55 REFERENCES 65 ix

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x CONTENTS APPENDIXES A Biographical Sketches of Committee Members 75 B Workshop Agenda 83 C Biographical Sketches of Workshop Speakers 87 D Workshop Attendees 95

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Tables, Figures, and Boxes TABLES 1 Health Indicators for Overall (20 years or older) Population by Period of Follow Up, 5 2 Estimates of Insurance Coverage Among Patients with HIV Attending Medical Offices Participating in HIVRN, 2010, 8 3 Potential Eligibility Criteria for People with HIV/AIDS, by Major Payor/Source, 9 4 Medicaid Eligibility Pathways for People Living with HIV/AIDS, 11 5 Medicare Eligibility Pathways for People Living with HIV/AIDS, 13 6 Odds of Recent Needle Use Among Persons Living with HIV, 21 7 Prescription Drug Policies: Challenges to Adherence, 42 8 Findings from Selected RCTs Examining the Effectiveness of Interventions to Improve ART Adherence, 44 FIGURES 1 Federal funding for HIV/AIDS care by program, FY 2010 (in billions), 8 2 Cycle of incarceration and release and relation to health care, 27 3 ADAP clients by CD4 count, enrolled during 12-month period, June 2009, 52 xi

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xii TABLES, FIGURES, AND BOXES BOXES 1 Statement of Task, 2 2 Barriers to HIV Care in 2005 Identified by the IOM’s Committee on the Public Financing and Delivery of HIV Care, 6 3 HIV Treatment Guidelines, 48

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Abbreviations and Acronyms ACA Patient Protection and Affordable Care Act ADAP AIDS Drug Assistance Program AETC AIDS Education and Training Centers AHIP America’s Health Insurance Plans AIDS acquired immune deficiency syndrome APG Ambulatory Patient Group ART antiretroviral therapy CBO community-based organization CDC Centers for Disease Control and Prevention CHC community health center CHHP Chicago Housing for Health Partnership DAART directly administered antiretroviral therapy EMA Eligible Metropolitan Area ETHA Early Treatment of HIV Act FPL federal poverty level FQHC Federally Qualified Health Center HAART highly active antiretroviral therapy HCSUS HIV Cost and Services Utilization Study HEARTH Homeless Emergency and Rapid Transition to Housing Act HHS Department of Health and Human Services xiii

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xiv ABBREVIATIONS AND ACRONYMS HIV human immunodeficiency virus HIVMA HIV Medicine Association HIVRN HIV Research Network HOPWA Housing Opportunity for People with AIDS HRSA Health Resources and Services Administration IAS-USA International AIDS Society-USA IOM Institute of Medicine IT information technology KFF Kaiser Family Foundation KP Kaiser Permanente MAI Minority AIDS Initiative MSA Metropolitan Statistical Area MSM men who have sex with men NASTAD National Alliance of State and Territorial AIDS Directors NHAS National HIV/AIDS Strategy ONAP White House Office of National AIDS Policy PIN Policy Information Notice RCT randomized controlled trial SAMHSA Substance Abuse and Mental Health Services Administration SMART Strategies for Management of Antiretroviral Therapy SPNS Special Projects of National Significance SSDI Social Security Disability Insurance SSI Supplemental Security Income STI sexually transmitted infection TGA Transitional Grant Area USPSTF U.S. Preventive Services Task Force VA U.S. Department of Veterans Affairs VHA Veterans Health Administration WHO World Health Organization

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Abstract Due in large part to the widespread use of highly active antiretroviral therapy, HIV has become a chronic disease. Persons whose HIV is managed adequately to maintain their viral load at a low or undetectable level have better health status, live longer, and are less infectious to others. Effective use of antiretroviral therapy (ART) and viral suppression require uninter- rupted care from an HIV knowledgeable health care provider, uninterrupted access to an adequate selection of anti-HIV medications, and a patient whose mental health and life situation do not interfere with receipt of care and adherence to medication regimens. In addition, management of other medical conditions is needed to avoid the irony of patients who receive costly treatment for HIV becoming disabled or dying from preventable complications of conditions such as diabetes. Similarly, providers caring for other health needs of HIV-infected individuals should be attuned to the need of patients to receive appropriate HIV care as well. The committee identified a number of barriers to adequate HIV treat- ment and its demonstrated benefits for patients and public health that arise from various sources. Patients may lack access to a provider with HIV-specific expertise or may experience interruptions in care for patient- based or systemic reasons. Even patients with apparently adequate access to publicly funded health care (e.g., Veterans Affairs, Medicaid, Medicare) and/or private health insurance coverage may encounter both financial (e.g., caps, co-pays, formulary limitations, waiting lists) and other barriers (e.g., inability to locate a provider, distance to clinics) to receipt of care. Moreover, daily life for a sizeable percentage of HIV-positive persons is very challenging for reasons such as stigma, poverty, mental health problems, xv

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xvi ABSTRACT substance abuse, incarceration, undocumented immigrant status, housing instability, and other afflictions and conditions that interfere with chronic disease management. The committee recognizes that successful manage- ment of patients experiencing multiple, interacting conditions requires, in addition to appropriate medical care, the availability of comprehensive and flexible services, such as transportation, medication adherence programs, and dietary and housing assistance, which generally are not reimbursable by health care financing programs, with the notable exception of the Ryan White program. The committee also found that there are numerous obstacles to main- taining an acceptable standard of care, including low reimbursement rates, shortages of health and allied health providers, unstable funding, unclear or inconsistent eligibility and reimbursement criteria, and burdensome reporting requirements. These problems arise from and are aggravated by the lack of integration of state and federal government programs address- ing the needs of HIV-infected individuals and the intertwined medical and social problems often associated with HIV. Problems in providing HIV care, such as low reimbursement rates and minimal exposure to HIV care during training, may lead health and allied health providers to avoid entering the field of HIV care, generating concerns about a future shortage of providers as the first generation of HIV providers retire from practice. The committee ascertained that the policy response to HIV suffers from the lack of integration of federal and state programs, as well as from gaps in important data on HIV patients and their care. Greater coordination and integration of federal and state programs should help to consolidate, and therefore reduce the burden of, reporting requirements. Along with careful consideration of the data sets to be reported, program coordination and integration also could facilitate and improve the acquisition of data needed to evaluate the quality of care patients receive and the cost-effectiveness of the various programs. Another area of HIV policy concerns the CD4 and/or viral load levels at which ART should be initiated and those at which insurance companies or other payors will cover treatment for HIV-infected individuals. Currently U.S. Department of Health and Human Services guidelines and Interna- tional AIDS Society-USA HIV treatment guidelines recommend that ART be initiated in patients with CD4 counts at or below 500. There is less agreement regarding initiation of therapy in asymptomatic patients with counts above 500. The committee recognizes the importance of identifying a set of definitive treatment guidelines to inform policy on the initiation and payor coverage of ART. Such treatment guidelines would be re-evaluated frequently and updated as needed to reflect current knowledge in HIV medicine.

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xvii ABSTRACT Although the Patient Protection and Affordable Care Act will improve access to HIV care in some respects (e.g., Medicaid will become available without categorical restrictions), it may aggravate the situation in other ways (e.g., funding for the Ryan White program, the primary source of funding for flexible services and safety-net providers, may be reduced or cut). Policies in the areas of housing, corrections, immigration, mental health services, and substance abuse all affect the care of HIV-infected persons and would benefit from increased coordination among and transi- tions between various programs and funding mechanisms. Many of these policy concerns pertain to care for other chronic health conditions as well (e.g., diabetes, hypertension, kidney disease, etc.). But HIV’s communicable nature and the very high personal and financial costs associated with each new infection add significant public health and economic components to the considerations of social justice that necessarily accompany policies that affect the provision of HIV care.

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