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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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