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Measuring What Matters: Allocation, Planning, and Quality Assessment for the Ryan White CARE Act 1 Introduction The Ryan White Comprehensive AIDS Resources Emergency (CARE) Act (RWCA) provides funding to cities, states, and other public and private entities to provide care and support services to medically underserved individuals with HIV disease (Ryan White CARE Act. 42 U.S.C. § 300ff ). Congress established the CARE Act in 1990 as the “payer of last resort”: the act funds care for uninsured or underinsured individuals who have no other resources to pay for care (Ryan White CARE Act. 42 U.S.C. § 300ff-11 ). While RWCA remains a safety-net program, funding has grown substantially over time and has helped create a major infrastructure for HIV/AIDS care. In fiscal year 2003 (FY2003) federal spending on RWCA totaled $2 billion (HRSA, 2003a), making it the third largest payer for HIV care behind Medicaid and Medicare (Foster et al., 2002). The CARE Act serves an estimated 533,000 individuals (HRSA, 2003b).1 It is impossible to know the exact number of clients served, however, because individuals may receive care under several parts of the CARE Act and most areas do not report unduplicated client-level data. The Health Resources and Services Administration’s HIV/AIDS Bureau (HRSA/HAB), within the U.S. Department of Health and Human Services (HHS), has lead responsibility for implementing the CARE Act. 1 This estimate includes those receiving support services, not just those in medical care, plus services to uninfected family members (HRSA, 2003c).
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Measuring What Matters: Allocation, Planning, and Quality Assessment for the Ryan White CARE Act The RWCA is composed of four major program titles and several other components: Title I provides grants to Eligible Metropolitan Areas (EMAs—currently 51) that have been disproportionately affected by the HIV/AIDS epidemic. Title I funds a variety of medical care and support services for people living with HIV disease. To qualify as an EMA, a metropolitan area must have a population of 500,000 or more and more than 2,000 reported AIDS cases within the past five years. Half of Title I funding is distributed by a formula, while the other half is awarded through a competitive supplemental application process, based on severity of need and other criteria (HRSA, 2002a). Title II provides grants to states, the District of Columbia, Puerto Rico, and U.S. territories to improve the quality, availability, and delivery of health care and support services for individuals with HIV disease. Title II provides states with funds to provide access to HIV medications through the AIDS Drug Assistance Program (ADAP). In addition, Title II also provides funding for “Emerging Communities” that do not qualify as EMAs and are ineligible for Title I grants (HRSA, 2002b,c). Title III provides direct grants to nonprofit entities for primary care and early intervention services (such as testing, counseling, referrals, and case management), capacity-building, and planning (HRSA, 2002d). Title IV provides grants for family-centered care for infants, children, youth, women living with HIV disease, and their families. Title IV provides primary and specialty medical care, psychosocial services, and outreach and prevention services. Title IV also provides clients with increased access to HIV/AIDS clinical trials and research (HRSA, 2002e). In addition, the RWCA supports AIDS Educational Training Centers, which provide clinical HIV training and education for providers, and the Dental Reimbursement Program, which covers uncompensated oral health care for individuals with HIV/AIDS (HRSA, 2002f,g). RWCA also funds the Special Projects of National Significance (SPNS) program, which establishes demonstration projects that address the challenge of providing care to underserved and vulnerable populations (HRSA, 2002h). IMPETUS FOR THIS STUDY Issues of equity have been at the heart of legislative and public debate over RWCA. That debate has often centered on the adequacy of the formulas and supporting data used to distribute Title I and II funds. A significant proportion of RWCA funds are allocated to EMAs and states
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Measuring What Matters: Allocation, Planning, and Quality Assessment for the Ryan White CARE Act using formulas based on information about the estimated number of persons living with AIDS in different areas. Many have raised concerns that such allocations are not equitable because the epidemic is not adequately reflected by AIDS cases alone, and that areas with emerging HIV epidemics are underfunded because cases of HIV (non-AIDS) are not included in the formulas (U.S. Congress, 2000a,b). A related concern with basing allocations on AIDS cases is that jurisdictions are not compensated for providing early access to care and treatment (U.S. Congress, 2000b). There is a widely held perception that incorporating HIV data in the formulas would increase the equity of RWCA allocations by targeting funds according to need (U.S. Congress, 2000a,b). The hold-harmless floors, which prevent an area’s funding from dropping drastically from one year to the next, also triggered debate about equity (U.S. Congress, 2000a). In the 2000 reauthorization, San Francisco was the only EMA to continue to benefit from this provision, leading to a significant difference between per-case allocations to San Francisco and other EMAs (GAO, 2000). Concerns about equity have also centered on the quality of care. Since the first reauthorization in 1996, significant advances have been made in diagnosing and treating HIV disease. At the same time, research has shown that a large proportion of HIV-infected persons were not in care, and that others were not receiving appropriate treatment or support services (Bozzette et al., 1998; Shapiro et al., 1999). Inequalities were identified in access to and use of HIV services, and in overall health outcomes for minorities and women (Shapiro et al., 1999). Disparities in quality of care were also reported for persons with public or no health insurance compared with those with private insurance (Bozzette et al., 1998; Shapiro et al., 1999). This information raised questions in Congress about whether the formulas for calculating Titles I and II grants allocated RWCA resources equitably. Legislators and other stakeholders also expressed concern about the effectiveness of the local planning and allocation process, and about the possibility that the CARE Act was not meeting the needs of members of historically underserved communities. As a result, the 2000 reauthorization made significant changes in the CARE Act and directed that this study be conducted. Specifically, Congress requested that the Institute of Medicine (IOM) examine three issues: (1) the potential inclusion of data on HIV cases in the allocation formulas, (2) the data and analytic tools that could be used to estimate severity of need and related resource needs, and (3) the availability of health outcome and other measures to assess the quality of and access to RWCA-funded services.
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Measuring What Matters: Allocation, Planning, and Quality Assessment for the Ryan White CARE Act STUDY CHARGE In October 2001, HRSA and the Centers for Disease Control and Prevention (CDC) commissioned the IOM to study these issues. Box 1-1 contains the charge to the committee, as stated in the 2000 reauthorization of the CARE Act. Although this study addresses some long-range issues, it is intended to provide guidance on issues currently faced by Congress, HRSA, and grantees in the administration of the CARE Act. Each of the three components of the Committee’s charge is discussed below. Use of HIV Data in the Title I and II Allocation Formulas As part of the 2000 reauthorization, Congress conditionally directed that the Title I and II formulas incorporate data on reported cases of HIV infection as well as AIDS in order to “target funding to more accurately reflect the HIV/AIDS epidemic” (U.S. Congress, 2000c). A recent General Accounting Office (GAO) study also concluded that reported HIV cases should provide a better indicator of need than the number of AIDS cases, and that Title I and II formulas should include these data once they are available in all jurisdictions (GAO, 2000). As of October 2003, all states, territories, and cities, except Georgia and Philadelphia, have initiated a system of HIV reporting (CDC, 2003). The use of such data in Title I and II formulas could take effect as early as FY2005—provided that the Secretary of HHS determines that such data are “sufficiently accurate” for RWCA resource allocation purposes (Ryan White CARE Act. 42 U.S.C. § 300ff-13 ). The legislation authorized the Secretary of HHS to provide grants for technical assistance to ensure that such data are available from all eligible areas as soon as practicable, but not later than the beginning of FY2007 (Ryan White CARE Act. 42 U.S.C. § 300ff-13 ).2 The legislation also authorized the IOM to assist the Secretary in assessing the readiness of states to produce adequate and reliable HIV case-reporting data, determine the accuracy of using HIV cases within the existing allocation formulas, and establish recommendations regarding how states could improve their HIV case-reporting systems ((Ryan White CARE Act. 42 U.S.C. § 300ff-11 ). In interpreting its charge, the Committee recognized the difficulty of defining such terms as “sufficiently accurate,” “adequate,” and “reliable” to characterize the quality of HIV surveillance data. No absolute standards of accuracy, adequacy, or reliability exist; rather these standards and their definition will vary according to the purposes and tasks for which the data are used. Thus, evaluating HIV reporting systems for use 2 No funds have been appropriated yet for this purpose.
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Measuring What Matters: Allocation, Planning, and Quality Assessment for the Ryan White CARE Act BOX 1-1 Charge to the Committee In the Ryan White CARE Amendments of 2000, Congress directed the IOM to examine the following issues (Ryan White CARE Act. 42 U.S.C. § 300ff-11 ): Use of HIV Data in the Title I and II Allocation Formulas “whether the surveillance system of each of the States regarding [HIV] provides for the reporting of cases of infection with the virus in a manner that is sufficient to provide adequate and reliable information on the number of such cases and the demographic characteristics of such cases, both for the State in general and for specific geographic areas in the State.” “whether such information is sufficiently accurate for purposes of formula grants under parts A and B of title XXVI of the Public Health Service Act” [i.e., Title I and II of the RWCA]. “With respect to any State whose surveillance system does not provide adequate and reliable information on cases of infection with the virus, [provide] recommendations regarding the manner in which the State can improve the system.” Information for Estimating Severity of Need for Resources “Existing and needed epidemiological data and other analytic tools for resource planning and allocation decisions, specifically for estimating severity of need of a community and the relationship to the allocations process.” Quality-of-Care Measures “The availability and utility of health outcome measures and data for HIV primary care and support services and the extent to which those measures and data could be used to measure the quality of such funded services”; and “other factors determined to be relevant to assessing an individual’s or community’s ability to gain and sustain access to quality HIV services.” NOTE: The Ryan White CARE Act Amendments of 2000 also directed the IOM to study the public financing and delivery of HIV care. HRSA commissioned a separate IOM study to address those issues. in resource allocation formulas requires a different set of performance criteria than evaluation of these data for public health purposes (e.g., epidemic surveillance, contact tracing, and partner notification). With regard to resource allocation decisions, the “sufficiency,” “adequacy,” and “reliability” of case-reporting data must be understood in terms of over-
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Measuring What Matters: Allocation, Planning, and Quality Assessment for the Ryan White CARE Act and underfunding errors to RWCA grantees in different areas. That is, rather than focus on an absolute standard of accuracy, it is more important to consider differential bias. Information for Estimating Severity of Need for Resources The CARE Act attempts to direct funds to areas in the greatest need of financial assistance through several of its discretionary grant programs, including Title I supplemental awards, Title II ADAP supplemental awards, and Title III and IV awards. In contrast to formula awards, which are based exclusively on estimates of living AIDS cases, these grants attempt to take into account other factors affecting severity of need. HRSA/ HAB defines “severity of need” as “the degree to which providing primary medical care to people with HIV disease in any given area is more complicated and costly than in other areas based on a combination of the adverse health and socio-economic circumstances of the populations to be served” (HRSA, 2003d). In the 2000 reauthorization, Congress charged the IOM Committee to examine “… existing and needed epidemiological data and other analytic tools for resource planning and allocation decisions, specifically for estimating severity of need of a community and the relationship to the allocations process” (Ryan White CARE Act. 42 U.S.C. § 300ff-11 ). The Committee focused its analysis on the application of severity-of-need criteria in determining Title I supplemental awards, the largest of these discretionary grant awards, because of the specific requests for assistance by Congress and HRSA/HAB in this area. HRSA currently uses a qualitative assessment process to make Title I supplemental awards. In the 2000 reauthorization, Congress expressed its intention to make the process more explicit: “… [HRSA/HAB] should employ standard, quantitative measures to the maximum extent possible in lieu of narrative self-reporting when awarding supplemental awards” (U.S. Congress, 2000c). Difficulty in finding timely, relevant, standardized data for every jurisdiction has hindered HRSA’s efforts to develop such measures, and helped motivate this study. Although the Committee does not focus on other discretionary grant programs that use severity of need criteria in allocating resources, the Committee’s findings and recommendations may have relevance for these programs. Quality-of-Care Measures The reauthorized CARE Act mandates that all title programs establish a quality-management program to “assess the extent to which HIV health services … are consistent with the most recent Public Health Service (PHS) guidelines for the treatment of HIV disease and related oppor-
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Measuring What Matters: Allocation, Planning, and Quality Assessment for the Ryan White CARE Act tunistic infections, and … to develop strategies for ensuring such services are consistent with the guidelines for improvement in the access to and quality of HIV services” (Ryan White CARE Act. 42 U.S.C. §. 300ff-64 ).3 To further that goal, Congress charged the Committee with examining: “The availability and utility of health outcome measures and data for HIV primary care and support services and the extent to which those measures and data could be used to measure the quality of such funded services”; and “other factors determined to be relevant to assessing an individual’s or community’s ability to gain and sustain access to quality HIV services” (Ryan White CARE Act. 42 U.S.C. §. 300ff-11 ). The focus on quality in the most recent reauthorization reflects several national trends. First, the health sector has seen growing interest in measuring and improving quality (IOM, 1999, 2001a,b).4,5 In addition, numerous reports have identified a gap between care that should be provided based on available professional knowledge and technology and the care that patients actually receive (IOM, 1999, 2001a; IOM and NRC, 1999). Another trend is the increasing emphasis on accountability across federal government agencies, pursuant to the Government Performance Results Act (1993) and other legislation.6 As a result, HRSA/HAB and RWCA grantees must document the impact of CARE Act funds on improving access to care and treatment and in addressing unmet needs. Considering this context, the Committee interpreted this charge as a request to examine and make recommendations regarding the availability and usefulness of not only outcomes, but a broad continuum of measures for assessing and improving the quality of both primary care and support services funded through the CARE Act. 3 This is a new requirement for Title I and II programs; Title III and IV grantees had such programs in place. 4 Major groups with quality initiatives include the National Committee for Quality Assurance (NCQA), the Agency for Healthcare Research and Quality (AHRQ), the Foundation for Accountability (FACCT), the National Quality Forum, and the Leapfrog Group, among others. 5 For a more comprehensive review of quality-of-care activities in health care, see IOM, 1999, 2001a,b. 6 Government Performance Results Act. H.R. 826. 103d Cong., 1st Sess. (1993); Federal Management Improvement Act (FMIA) of 1996 (P.L. 104-208); Chief Financial Officers (CFO) Act of 1990.
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Measuring What Matters: Allocation, Planning, and Quality Assessment for the Ryan White CARE Act STUDY METHODS The Committee met six times over the course of the study. It began by reviewing the scientific literature and key reports relating to HIV and AIDS surveillance, severity of resource needs, and quality of care. The Committee reviewed RWCA programmatic efforts, as well as HIV/AIDS surveillance data collection and analysis. The Committee reviewed data from HRSA and CDC on Title I and II allocations and HIV and AIDS cases, and analyzed the potential impact of including HIV data and other changes in the formulas on allocations. It also reviewed the data sources and methods used by grantees in their Title I supplemental applications to document severity of need. The Committee also conducted a thorough review of quality measures used by RWCA grantees and other major HIV providers, recommended by authoritative groups, and contained in the research literature. The Committee heard testimony and received comments from many different stakeholders (see Acknowledgements). The Committee held public information-gathering sessions at its first three meetings to hear from CDC, HRSA, state and local HIV/AIDS programs, and clients. The Committee also met with groups of Title I and II grantees at the 2002 annual conference of the National Alliance of State and Territorial AIDS Directors (NASTAD) and the 2002 RWCA All-Titles conference, respectively, and held a conference call with state surveillance coordinators. Members of the Committee conducted site visits to CDC, HRSA, and to rural RWCA clinics and the state health department in Alabama. The Committee also examined information on states’ HIV surveillance funding. The Committee also commissioned papers on the history of public health surveillance and on the legislative history of RWCA. GUIDING PRINCIPLES The Committee agreed upon several guiding principles that could be used to assess alternative approaches to resource allocation and quality assessment. One overriding consideration for any CARE Act allocation strategy or quality assessment should be the extent to which it furthers the goal of equity in care for HIV-infected individuals. The CARE Act operates against a backdrop of significant inequalities in access to health care in the United States. More than 43 million Americans are uninsured (Mills and Bandhari, 2003), and millions more hold insurance policies that do not cover basic medications or treatments (IOM, 2001c). Congress enacted the CARE Act in 1990 at least in part to address this challenge regarding people with HIV infection. The Committee recognizes that resources allocated to the RWCA have at the outset been insufficient to address the unmet needs of all individu-
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Measuring What Matters: Allocation, Planning, and Quality Assessment for the Ryan White CARE Act als with HIV disease. In this context, a reasonable objective would be to assure that all individuals with HIV infection be provided with comparable levels of the highest possible quality of care. Pursuit of such an objective in the context of constrained resources inevitably leads to tradeoffs. The Committee recognizes that difficult choices are unavoidable and that competing views exist about what it means to manage such choices “fairly.” Thus, the Committee began its deliberations by considering broad principles of equity that bear on the allocation of health care resources and their relevance to the RWCA program. Measures of inequality usually focus on differential access to goods, services, and benefits. Not all inequalities or disparities, however, are inequities. Inequity refers to disparities in a given domain that are considered unfair or unjust. For example, disparities in income are measured by the extent to which individuals earn less or more than those who work an equivalent number of hours. A judgment of inequity would reflect an assessment that inequalities are not morally justifiable. There has been considerable controversy about how to measure inequalities in health care and which disparities constitute inequities. Disagreements exist over which clinical conditions, which interventions, provided under what circumstances, and with what attendant burdens should be of concern. The resolution of these questions has critical implications, given widespread acceptance of the moral claim that all citizens should have access to basic medical care, that need should dictate access, and that disparities in access to clinical care by those with similar medical conditions represents an inequity (President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research, 1983; Beauchamp and Childress, 2001). From this perspective, both the quantity and quality of services matter: equal access to clinical interventions of differing quality would not represent an equitable distribution. Settings or conditions that inhibit the use of needed services would also constitute inequities. Extended waiting time in clinics, the absence of psychologically or culturally appropriate settings, and the time required for travel may not be critical if they do not affect utilization. Some, however, would consider these conditions inequities because they erode the dignity of the individuals who require health services (Caplan et al., 1999). In the face of constrained resources, some rationing—either implicit or explicit—will occur, and such rationing may be more or less equitable (Churchill, 1987; Callahan, 1995; Epstein and Gutmann, 1997; Hall, 1997). The Committee recognizes that difficult choices and tradeoffs are unavoidable, and that stakeholders may hold diverse, ambiguous, and mutually incompatible conceptions of what is fair when facing difficult rationing decisions.
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Measuring What Matters: Allocation, Planning, and Quality Assessment for the Ryan White CARE Act Competing Views of Fairness Need-based allocation is perhaps the most intuitively powerful conception of equity or fairness. Humans are naturally predisposed to focus on identifiable lives in imminent peril, and to allocate whatever resources are required to sustain them. According to this view, individuals with the worst prognoses should receive the most vigorous interventions even if the outcomes fall short of those attained by individuals with less demanding needs. Allocations based on need often result in unequal spending per case. Perhaps more important, meeting the needs of selected individuals may limit resources available to others. A very different conception of fairness finds its roots in the philosophy of utilitarianism. In this view, society should allocate available resources to confer the greatest total good and the least amount of harm. According to this view, some segments of the population may justifiably receive limited services if they would derive little benefit, or if by withholding such services the system enables many others to enjoy a small incremental benefit. Such an efficiency-driven approach allocates health care resources to those for whom they will produce the greatest net improvement per unit spent. This view underpins cost-effectiveness analysis. Tension among these and other conceptions of equity is unavoidable (NRC, 2001). The Committee did not see its role as adjudicating among philosophies of justice. These are political decisions that should be made by Congress when determining how RWCA funds should be allocated. Although Congress has emphasized different priorities in reauthorization debates and language, standards of equity are usually implied. Public decision making must be transparent to be legitimate. Transparency requires that when rationing occurs it must be explicit and the grounds for decisions fully stated. In this report, the Committee highlights the pros, cons, and tradeoffs implicit in any allocation process, given that RCWA resources have from the outset been insufficient to address the unmet needs of all individuals with HIV and AIDS. Within the context of constrained resources, and cognizant of competing conceptions of equity, the Committee’s work was informed by the belief that all individuals with HIV infection should receive the highest-quality care possible regardless of where they live and their personal circumstances. Equity and the Undiagnosed A health care system that assures access only to those who are aware of their condition and of available services would fail some tests of equity. For clinical conditions that remain asymptomatic for long periods but for
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Measuring What Matters: Allocation, Planning, and Quality Assessment for the Ryan White CARE Act which early medical intervention can have a significant impact, such as HIV, this is an important matter. With the advent of highly active antiretroviral therapy, or HAART, in the mid-1990s, early diagnosis of HIV infection has become even more critical. Persons living with HIV/AIDS comprise three groups: those who are not yet diagnosed with HIV or AIDS and therefore are not receiving care; those who are diagnosed with HIV or AIDS but who are not in regular care; and those who are diagnosed with HIV or AIDS and are receiving regular care. RWCA is intended to serve a subset of all people with HIV/AIDS: those who are uninsured or underinsured. State HIV and AIDS reporting systems capture only individuals who have been diagnosed with HIV or AIDS, regardless of insurance status. Because RWCA primarily focuses on the diagnosed population, it does not address the extraordinary unmet needs of unidentified HIV-positive individuals. National estimates postulate that 850,000–950,000 individuals in the United States have HIV disease (Fleming et al., 2002). Of those, approximately 75 percent, or 670,000, know they are infected, and an estimated 450,000 are in care (Fleming et al., 2002). With the advent of HAART and the availability of a wide array of other support services and prevention efforts for HIV-infected individuals, it is essential to promote efforts to make individuals aware of their status and to facilitate their entry into care. Significant and continued improvements in long-term morbidity and mortality related to HIV will not occur unless these individuals are under appropriate care. Fiscal Federalism Fiscal federalism is another important issue that creates a moral quandary for funders. RWCA is funded and implemented with a complex local–state–federal partnership of HIV/AIDS care. The details of federal RWCA funding allocation impose important incentives on other government actors (NRC, 2003). One important concern is that federal RWCA policies may reduce incentives for states and localities to offer important medications, medical, and social services. While federal policy makers may wish to establish proper incentives for states and localities to fund HIV/AIDS care, some also want to ensure high-quality care even when states and localities fail to provide adequate resources. Knowing these preferences, state and local policy makers may limit funding for basic HIV medications, services, and care because federal funders will cover all or some of the resulting shortfall. If a state can attract greater federal subsidies by offering very limited services to people with AIDS, it may reduce the total pool of resources available for HIV/AIDS care. It may also take unfair advantage of the
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Measuring What Matters: Allocation, Planning, and Quality Assessment for the Ryan White CARE Act commitment, honored by other states, to provide adequate HIV/AIDS care. The Committee was mindful of the potential adverse incentives associated with current and potential alternative federal RWCA funding allocations. For example, potentially important incentive effects are created by including (or excluding) estimates of undiagnosed cases in determining resource allocation. Differences in the proportion of undiagnosed HIV cases are not an exogenous source of bias. They result from policy decisions about the aggressiveness of case finding and screening, and they are influenced by the availability of funds. If estimates of undiagnosed cases are included, there could be a perverse incentive for states and EMAs to avoid identifying cases in order to be able to provide more intensive services to cases already identified. By contrast, if estimates of undiagnosed cases are excluded, states and EMAs have an incentive to identify cases in order to maximize their funding. Under either scenario, quality measurements are required to monitor the rate at which new cases are identified, referred, and retained in care. The committee lacked specific data to measure the magnitude of these incentive effects. ORGANIZATION OF THE REPORT Chapter 2 provides an overview of the HIV/AIDS epidemic, financing of HIV/AIDS care, legislative history of RWCA, and its current structure. Chapter 3 provides background on public health and HIV/AIDS surveillance and provides context for how surveillance data are used in the allocation formulas. The ensuing chapters address the three components of the Committee’s charge. Chapter 4 evaluates the potential for data on HIV cases to be incorporated into the Title I and II allocation formulas. Chapter 5 examines data and methods for estimating severity of need and related resource needs, with particular attention to Title I supplemental grants. Chapter 6 reviews measures that can be used to assess the quality of HIV/AIDS care provided by the RWCA. Chapter 7 summarizes the Committee’s findings and recommendations. REFERENCES Beauchamp TL, Childress JF. 2001. Principles of Biomedical Ethics. 5th ed. New York: Oxford University Press. Bozzette S, Berry SH, Duan N, Frankel MR, Leibowitz AA, Lefkowitz D, Emmons CA, Senterfitt JW, Berk ML, Morton SC, Shapiro MF. 1998. The care of HIV-infected adults in the United States. HIV Cost and Services Utilization Study Consortium. New England Journal of Medicine 339(26):1897–904. Callahan D. 1995. Setting Limits: Medical Goals in an Aging Society. Washington, DC: Georgetown University Press.
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Measuring What Matters: Allocation, Planning, and Quality Assessment for the Ryan White CARE Act Caplan RL, Light DW, Daniels N. 1999. Benchmarks of fairness: A moral framework for assessing equity. International Journal of Health Services 29(4):853–69. CDC (Centers for Disease Control and Prevention). 2003. Current Status of HIV Infection Surveillance—April 2003. (Email communication, Patricia Sweeney, CDC, April 28, 2003). Churchill LR. 1987. Rationing Health Care: Perceptions and Principles of Justice. Notre Dame, IN: Notre Dame University Press. Epstein RA, Gutmann H, Eds. 1997. Mortal Peril: Our Inalienable Right to Health Care? Reading, MA: Addison-Wesley. Fleming P, Byers R, Sweeney P, Daniels D, Karon J, Janssen R. 2002. HIV Prevalence in the United States, 2000. Presented at the 9th Conference on Retroviruses and Opportunistic Infections, Seattle, WA. Abstract 11. Foster S, Niederhausen P, Westmoreland T. 2002. Federal HIV/AIDS Spending: A Budget Chartbook, Fiscal Year 2001. Washington, DC: Kaiser Family Foundation. GAO (General Accounting Office). 2000. Ryan White CARE Act: Opportunities to Enhance Funding Equity. Washington, DC: GAO. Hall MA. 1997. Making Medical Spending Decisions: The Law, Ethics, and Economics of Rationing Decisions. New York: Oxford University Press. HRSA (Health Resources and Services Administration). 2002a. Title I: Grants to Eligible Metropolitan Areas . [Online]. Available: http://ftp.hrsa.gov/hab/titleifact.pdf [accessed May 22, 2003]. HRSA. 2002b. Title II: AIDS Drug Assistance Program. [Online]. Available: ftp://ftp.hrsa.gov/hab/adap1.pdf [accessed May 22, 2003]. HRSA. 2002c. Title II: Grants to States and Territories. [Online]. Available: http://htp.hrsa.gov/hab/titleiifact.pdf [accessed May 22, 2003]. HRSA. 2002d. Title III: Capacity Building Grant Program. [Online]. Available: http://ftp.hrsa.gov/hab/titleiiicap.pdf [accessed May 22, 2003]. HRSA. 2002e. Title IV: Services for Women, Infants, Children, Youth, and Their Families. [Online]. Available: http://ftp.hrsa.gov/hab/titleiv.htm [accessed May 22, 2003]. HRSA 2002f. AIDS Education and Training Centers Program. [Online]. Available: ftp://ftp.hrsa.gov/hab/aetcfact.pdf [accessed May 22, 2003]. HRSA. 2002g. HIV/AIDS Dental Programs. [Online]. Available: http://ftp.hrsa.gov/hab/drpfact.pdf [accessed May 22, 2003]. HRSA. 2002h. Special Projects of National Significance Program. [Online] Available: ftp://ftp.hrsa.gov/hab/spnsfact1.pdf [accessed May 22, 2003]. HRSA. 2003a. CARE Act Overview and Funding History. [Online] Available: ftp://ftp.hrsa.gov/hab/fundinghis03.xls [accessed October 9, 2003]. HRSA. 2003b. The AIDS Epidemic and the Ryan White CARE Act Past Progress, Future Challenges 2002-2003. [Online]. Available: http://hab.hrsa.gov/tools/progressreport/ [accessed September, 2003]. HRSA. 2003c. Individuals served by the CARE Act. (Email communication, Steven Young, HRSA, June 2, 2003).
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Measuring What Matters: Allocation, Planning, and Quality Assessment for the Ryan White CARE Act HRSA. 2003d. Appendix 1: Glossary of Terms. Ryan White Comprehensive AIDS Resources Emergency (CARE) Act: Needs Assessment Guide 2003 Version. Rockville, MD: HRSA. IOM (Institute of Medicine). 1999. To Err Is Human: Building a Safer Health System. Washington, DC: National Academy Press. IOM. 2001a. Crossing the Quality Chasm: A New Health System for the 21st Century. Washington, DC: National Academy Press. IOM. 2001b. Envisioning the National Health Care Quality Report. Hurtado MP, Swift EK, Corrigan JM, Eds. Washington, DC: National Academy Press. IOM and NRC (Institute of Medicine and National Research Council). 1999. Hewitt M, Simone JV, Eds. Ensuring Quality Cancer Care. Washington, DC: National Academy Press. Mills RJ, Bhandari S. 2003. Health Insurance Coverage, 2002. Current Population Reports. Washington, DC: U.S. Census Bureau. Pp. 60–223. NRC (National Research Council). 2001. Choosing the Right Formula Initial Report. Washington, DC: National Academy Press. NRC. 2003. Statistical Issues in Allocating Funds by Formulas. Louis TA, Jabine TB, Gerstein MA, Eds. Washington, DC: National Academy Press. President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research. 1983. Securing Access to Health Care: A Report on the Ethical Implications of Differences in the Availability of Health Services. Washington DC: U.S. Government Printing Office. Shapiro MF, Morton SC, McCaffrey DF, Senterfitt JW, Fleishman JA, Perlman JF, Athey LA, Keesey JW, Goldman DP, Berry SH, Bozzette SA. 1999. Variations in the care of HIV-infected adults in the United States: Results from the HIV Cost and Services Utilization Study. Journal of the American Medical Association 281(24):2305–15. U.S. Congress, House of Representatives. Committee on Commerce. 2000a. Report on Ryan White CARE Act Amendments of 2000 (106-788). 106th Cong., 2d Sess. July 25, 2000. Pp. 24–6. U.S. Congress, House of Representatives. Committee on Commerce. 2000b. Report on Ryan White CARE Act Amendments of 2000 (106-788). 106th Cong., 2d Sess. July 25, 2000. P. 30. U.S. Congress. 2000c. Congressional Record. 146(123):S10031.
Representative terms from entire chapter: