HIV SCREENING AND ACCESS TO CARE

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HIV SCREENING AND ACCESS TO CARE He a l t h C a re Sy s t e m C a p a c i t y f o r I n c r e a s e d H I V Te s t i n g a n d Prov i s i o n o f 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: 978-0-309-18507-3 International Standard Book Number-10: 0-309-18507-6 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: Health Care System Capacity for Increased HIV Testing and Provision of 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, Connecticut RONALD BAYER, Professor, Department of Sociomedical Sciences, Joseph L. Mailman School of Public Health, Columbia University, New York, New York ERIC G. BING, Endowed Professor of Global Health and HIV, Charles R. Drew University of Medicine and Science, Los Angeles, California SCOTT BURRIS, Professor, School of Law, Temple University, Philadelphia, Pennsylvania J. KEVIN CARMICHAEL, Chief of Service, Special Immunology Associates, El Rio Community Health Center, Tucson, Arizona SUSAN CU-UVIN, Professor of Obstetrics and Gynecology and Medicine, Brown University, Providence, Rhode Island JENNIFER KATES, Director, HIV Policy, 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, Maryland LIISA M. RANDALL, Manager, HIV Prevention Programs, Michigan Department of Community Health, Lansing BETH SCALCO, Director, HIV/AIDS Program, 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, MD 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 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 Alise Adimora, School of Public Health, University of North Carolina, Chapel Hill, NC William L. Holzemer, College of Nursing, Rutgers, The State University of New Jersey, Newark, NJ Roger J. Lewis, David Geffen School of Medicine at UCLA, Torrance, CA Celia J. Maxwell, Howard University Hospital, Washington, DC Michelle Roland, Center for Infectious Diseases, California Department of Public Health, Sacramento, CA Donna Sweet, Via Christi Regional Medical Center, University of Kansas School of Medicine, Wichita, KS 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: HEALTH CARE SYSTEM CAPACITY FOR INCREASED HIV TESTING AND PROVISION OF CARE 1 Report Organization, 3 Background, 4 Expanded HIV Testing, 6 Where Persons with HIV Currently Receive Care, 16 HIV-Related Training and Experience of HIV Care Providers, 22 The Capacity of the HIV/AIDS Care Delivery System, 35 Delivery System Strategies to Maximize Capacity of Current Workforce, 40 Strategies to Increase the Number of Providers Entering and Remaining in the HIV/AIDS Workforce, 43 Impact of the Affordable Care Act on the Public Health and Clinical Infrastructure, 55 Summary, 62 REFERENCES 65 ix

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x CONTENTS APPENDIXES A Biographical Sketches of Committee Members 73 B Biographical Sketches of Workshop Speakers 81 C Workshop Agenda 89 D Workshop Attendees 95

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Tables, Figures, and Box TABLES 1 Health Care Settings in Which Health Departments Support Routine HIV Testing, 8 2 Approaches to Routine HIV Screening, 13 3 Usual Source of Care for Individuals with HIV/AIDS in Care, United States 1996, 17 4 Medical Clients Served within the Ryan White Program (All Parts), 2009, by Provider Type, 18 5 Services Provided by Ryan White Care Sites (All Parts), 2009, 20 6 Age Distribution of U.S. HIVMA Members, 2010, 37 7 HIV/AIDS Care: Then and Now, 44 8 Staffing Patterns and Benchmark Ratios for Workforce Projections, 47 FIGURES 1 HIV incidence and prevalence, United States, 1977–2006, 5 2 Ryan White Part C outpatient care centers of expert HIV care in the United States, 2010, 19 3 Ryan White Part C clients and funding, 2001–2009, 21 4 Percent change in percentage of U.S. medical school graduates filling select residency positions, 1998–2006, 48 BOX 1 Statement of Task, 2 xi

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Abbreviations and Acronyms AACRN Advanced AIDS Certified Registered Nurse AAHIVM American Academy of HIV Medicine ACA Patient Protection and Affordable Care Act ACIP Advisory Committee on Immunization Practices ACO accountable care organization ACRN AIDS Certified Registered Nurse ADAP AIDS Drug Assistance Program AETC AIDS Education Training Center AIDS acquired immune deficiency syndrome ANAC Association of Nurses in AIDS Care APRN advanced practice registered nurse ART antiretroviral therapy ASPH Association of Schools of Public Health ASTHO Association of State and Territorial Health Officials CBO community-based organization CD4 cluster of differentiation 4 CDC Centers for Disease Control and Prevention CEO Chief Executive Officer CHC community health center CLIA Clinical Laboratory Improvement Amendments CME continuing medical education CMS Centers for Medicare and Medicaid Services CNM certified nurse midwife ED emergency department xiii

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xiv ABBREVIATIONS AND ACRONYMS FDA Food and Drug Administration FPL federal poverty level FQHC Federally Qualified Health Center HAART highly active anti-retroviral therapy HANCB HIV/AIDS Nursing Certification Board HCSUS HIV Cost and Services Utilization Study HIV human immunodeficiency virus HIVMA HIV Medicine Association HMO health maintenance organization HRSA Health Resources and Services Administration IOM Institute of Medicine MAI Minority AIDS Initiative MSM men who have sex with men NASTAD National Alliance of State and Territorial AIDS Directors NP nurse practitioner ONAP Office of National AIDS Policy PA physician assistant PEPFAR President’s Emergency Plan for AIDS Relief RN registered nurse RNA ribonucleic acid STD sexually transmitted disease TGA Transitional Grant Area THC Teaching Health Center USPSTF U.S. Preventive Services Task Force

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Abstract Many individuals in the United States who have been diagnosed with HIV are not receiving treatment (Teshale et al., 2005). In addition, an estimated 21 percent of the 1.1 million people living with HIV in the United States are unaware of their infection and so are not receiving care (CDC, 2010b), and approximately 56,000 individuals contract HIV each year (CDC, 2010b). In 2006, the Centers for Disease Control and Preven- tion (CDC) issued recommendations to implement routine HIV testing in health care settings for individuals 13 to 64 years of age. Identification of undiagnosed HIV-positive individuals is important because early treatment improves health outcomes and survival and decreases the likelihood of transmitting the virus to others. However, expanded HIV testing efforts and subsequent linkages to care for previously undiagnosed individuals will place new, increased demands on organizational and individual health care providers. The present capacity of the health care system to administer a greater number of HIV tests and to accommodate new HIV diagnoses is critically strained. In the wake of the 2006 CDC recommendations, state health departments and other organizations have received funding to help subsi- dize the development and implementation of HIV screening in various ven- ues. However, the long-term sustainability of the programs is in question, especially once outside funding ceases. In addition to funding concerns, it is clear that sustainable programs need to fit as seamlessly as possible into the care flow of the venues in which they are instituted, which may necessitate the use of different testing procedures in different venues. Another signifi- cant challenge, especially in busy, high volume settings, such as hospital xv

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xvi ABSTRACT emergency departments, is the question of who will inform those individu- als who test positive and link them to care. Expanded HIV testing initiatives already have brought more individu- als into care, and earlier and more effective treatment has greatly improved survival among HIV-positive individuals. Additional factors that impact the ability of the health care workforce to address the needs of HIV-positive individuals include the complexity of care necessitated by increased length of survival, the movement of HIV-positive individuals from concentrated urban centers to more rural areas, the need for increased cultural compe- tency among providers in order to serve a more culturally diverse client population, and the increased access of patients to care anticipated to result from the Patient Protection and Affordable Care Act (P.L. 111-148). At the same time, the initial wave of HIV care providers are approaching retirement age and either reducing their practices or retiring completely. Compounding this decline is the relatively low number of new providers specializing in HIV care. Taken together the increase in demand for HIV care services and anticipated decrease in the relative number of providers practicing HIV medicine raises concerns about the ongoing ability of the workforce to meet the needs of the HIV/AIDS population in the United States. In assessing the current capacity of the health care system to accom- modate newly diagnosed HIV-positive individuals into care, the IOM Com- mittee on HIV Screening and Access to Care encountered a paucity of data on patterns of care for HIV/AIDS patients and the HIV-related training received by providers. Nevertheless, it is clear that primary care physicians, infectious disease specialists, advanced practice registered nurses (APRNs), and physician assistants (PAs) currently provide the vast majority of medi- cal care for HIV-positive individuals. Registered nurses, dentists, pharma- cists, and social workers are among the large number of other providers necessary to provide quality HIV/AIDS care in a variety of settings. In terms of training, one of the challenges is the emergence of HIV as a chronic medical condition, increasing the complexity of treating HIV- positive individuals. Infectious disease specialists may, as a rule, have greater expertise than primary care providers in treating HIV, but increas- ingly HIV-positive patients require the broader skills of primary care physi- cians, APRNs, and PAs to address their other health care needs. The committee found, however, serious inadequacies in provider train- ing in HIV care, particularly in the crucial area of practical experience, especially in the outpatient setting where most routine HIV care now occurs. Increased exposure of trainees to outpatient HIV care throughout school and postgraduate training, as well as new and ongoing provider training through continuing education programs, is crucial to developing

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xvii ABSTRACT and maintaining a sufficient supply of appropriately trained providers to accommodate increased numbers of HIV-positive individuals. Additional “pathway” strategies aimed at increasing the supply of HIV-trained provid- ers include financial and other incentives to encourage more providers to enter into HIV care. In addition to pathway strategies designed to increase the number of HIV providers, delivery system strategies, such as task shifting, co- management, care coordination models, and integrated delivery systems, are designed to maximize the capacity of the current workforce to provide quality care. It is clear that a variety of approaches will be needed to maxi- mize the diagnosis and treatment of HIV-positive individuals in the United States and barriers to APRNs’ ability to practice to the full extent of their education and training will need to be addressed. The current Ryan White model of care, which provides a wide range of medical and nonmedical ser- vices, allows for task shifting across provider levels to the extent permitted by state regulations, and supports the provision of comprehensive services, offers an excellent example of the type of integrated delivery system that serves HIV/AIDS clients well and upon which future care systems could be modeled.

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