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Date: Nov. 7, 2003
Contacts: Christine Stencel, Media Relations Officer
Chris Dobbins, Media Relations Assistant
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HIV Case Reporting Not Reliable Enough To Use in Allocating Ryan White CARE Act Funds

WASHINGTON -- The reporting of HIV cases is not complete and accurate enough nationwide to allow these numbers to be used in determining how funds from the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act (RWCA) should be allocated among states and metropolitan areas, says a new report from the Institute of Medicine of the National Academies. The estimated number of AIDS cases should continue to be the main criterion used in RWCA allocation formulas, at least until HIV case reporting or other estimation techniques provide better data about regional numbers of HIV cases, said the committee that wrote the report.

The RWCA distributes funding to states, metropolitan areas, and public and private organizations to enable uninsured and underinsured individuals with HIV disease or AIDS to obtain care and support services. The estimated number of AIDS cases in each area has been the main factor for determining distribution of funds because such reporting is well-established across the nation and because people who have developed AIDS tend to need more care and visit health care facilities more frequently, where their illness is identified and recorded. Although it is harder to reliably detect and count cases of diagnosed HIV infection -- infected individuals may not get sick and need care -- many believe that the number of HIV cases might be a better indicator of resource needs than AIDS cases alone. Concerns about the equity of how the funds are distributed prompted Congress, during its reauthorization of the act in 2000, to specify that data on reported cases of HIV disease be incorporated into the allocation formulas, provided that reliable data are available from each state. Congress asked IOM to assess the quality of these data and determine if they are accurate enough for inclusion in RWCA allocation formulas, and to recommend improvements in HIV reporting systems.

While all but one state and one city currently have HIV case reporting systems in place, some of the systems have been implemented only recently. Moreover, states differ in how they gather and report data, including whether they record individuals' names or use codes instead, and procedures have not been developed to eliminate duplicate reports. Until HIV case reporting or other estimation techniques provide better data about regional variability in the number of HIV cases, information on HIV cases cannot be used to determine distribution of funds, the committee concluded. An effort should be made to improve the consistency, quality, and comparability of reporting systems so that data on HIV cases eventually can be incorporated into the allocation formulas.

"Data on HIV cases should be comparable across jurisdictions so that incorporating the data increases -- rather than decreases -- the fairness of the CARE Act fund allocations," said committee chair Paul Cleary, professor of health care policy, Harvard Medical School, Boston.

Among specific steps recommended in the report, the Centers for Disease Control and Prevention should partner with states to develop methods to collect and use HIV case information from all states, regardless of whether the states use name-based or code-based reporting systems. CDC currently does not accept data from 15 states that use code-based systems because it is difficult to ensure that each case is counted only once in code-based systems, especially across states. The agency should be given enough funding to develop a way to eliminate duplication of cases. The U.S. Department of Health and Human Services should appoint an independent body to evaluate methods to estimate the total number of people infected with HIV, such as modeling and survey-based approaches, as alternatives or supplements to case reporting.

A portion of RWCA funds is intended to be directed to states and metropolitan areas with the greatest resource needs, but the process of determining severity of need is hampered by the lack of comparable data across jurisdictions. The committee outlined a new approach that entails developing measures of resource needs -- such as interviews of patients to determine the kinds of services they need or disease-surveillance studies -- and identifying predictors of the areas with the greatest needs. The Health Resources and Services Administration's HIV/AIDS Bureau should further develop and use such approaches to predict regional variations in resource needs.

RWCA grantees and administrators have implemented a variety of quality improvement initiatives, but more can be done to measure and improve the quality of care, the report says. While many clinics assess their own organizations' attempts to improve care, the committee found that more effort should be made to assess the patients' experiences with the care they receive and to measure quality at a broader population level. The report proposes a framework for developing such comprehensive quality measures and recommends an initial set of standard measures to assess the quality of care given by all RWCA-funded providers.

The study was sponsored by the U.S. Department of Health and Human Services' Health Resources and Services Administration and the Centers for Disease Control and Prevention. The Institute of Medicine is a private, nonprofit institution that provides health policy advice under a congressional charter granted to the National Academy of Sciences. A committee roster follows.
The report Measuring What Matters: Allocation, Planning, and Quality Assessment for the Ryan White CARE Act is available on the Internet at Copies of the final book will be available for purchase later this year from the National Academies Press; tel. 202-334-3313 or 1-800-624-6242. Reporters may obtain a pre-publication copy from the Office of News and Public Information (contacts listed above).

Board on Health Promotion and Disease Prevention

Committee on the Ryan White CARE Act: Data for Resource Allocation, Planning, and Evaluation

Paul Cleary, Ph.D. (chair)
Department of Health Care Policy
Harvard Medical School

Ronald Bayer, Ph.D.
Joseph L. Mailman School of Public Health
Columbia University
New York City

Eric G. Bing, M.D., Ph.D. M.P.H.
Drew Center for AIDS Research, Education, and Services
Charles R. Drew University of Medicine and Science
Los Angeles

Samuel A. Bozzette, M.D., Ph.D.
Health Services Research Section
Veterans Affairs Health Care System;
Professor of Medicine
University of California
San Diego;
Senior Natural Scientist
RAND Corp.
Santa Monica

David D. Celentano, Sc.D.
Professor and Director
Infectious Diseases Program
Department of Epidemiology
Bloomberg School of Public Health
Johns Hopkins University

Victor G. De Gruttola, S.M., Sc.D.
Department of Biostatistics
Harvard School of Public Health

Carlos Del Rio, M.D.
Associate Professor of Medicine and Chief of Medical Service
Grady Memorial Hospital
Emory University School of Medicine

Aida Giachello, Ph.D.
Associate Professor
Jane Addams College of Social Work
University of Illinois

William Holzemer, R.N., Ph.D., F.A.A.N.
Professor and Associate Dean
International Programs
Department of Community Health Systems
School of Nursing
University of California
San Francisco

Sandral Hullett, M.D., M.P.H.
Acting CEO
Jefferson Health System
Birmingham, Ala.

Wendy K. Mariner, J.D., L.L.M., M.P.H.
Professor of Health Law
Boston University Schools of Public Health, Law, and Medicine

Beth Meyerson, M.Div., Ph.D.
Policy Resource Group LLC
St. Louis

A. David Paltiel, Ph.D.
Associate Professor
Division of Health Policy and Administration
School of Public Health
Yale University
New Haven, Conn.

Harold Pollack, Ph.D.
Associate Professor
Social Service Administration
University of Chicago

George W. Rutherford III, M.D.
Salvatore Lucia Professor of Preventive Medicine and Epidemiology
Department of Epidemiology and Biostatistics
School of Medicine
University of California
San Francisco

Eileen Salinsky, M.B.A.
Senior Research Associate
National Health Policy Forum
George Washington University
Washington, D.C.

David R. Smith, M.D.
Texas Tech University System, and
Texas Tech University Health Sciences Center


Alicia R. Gable, M.P.H.
Study Director

Rose Marie Martinez, Sc.D.
Board Director