2
Overview of the HIV/AIDS Epidemic and the Ryan White CARE Act

This chapter provides abrief overview of the HIV/AIDS epidemic, the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act (RWCA) in the context of other federal spending programs for HIV/AIDS care, and the history and current structure of the CARE Act and its allocation formulas.

OVERVIEW OF THE HIV/AIDS EPIDEMIC

Natural History of HIV Infection

The AIDS epidemic was first recognized in June of 1981, when the Centers for Disease Control and Prevention (CDC) received reports of clusters of diseases that are not seen in persons with normally functioning immune systems (Pneumocystis carinii pneumonia and Kaposi’s sarcoma) among mostly young, otherwise healthy gay men (CDC, 1981). Epidemiologic studies showed that the virus was transmitted from infected persons through sexual contact, exposure to infected blood or blood products, sharing of contaminated needles and syringes, transplantation of infected organs or tissue, and from mother to child during pregnancy, at delivery or through breastfeeding (IOM/NAS, 1988). In 1983 and 1984, two groups of investigators identified a retrovirus, now known as human immunodeficiency virus (HIV), as the etiologic agent of AIDS (Barre-Sinoussi et al., 1983; Gallo et al., 1984).

Most people have no symptoms at the time of HIV infection. Some



The National Academies | 500 Fifth St. N.W. | Washington, D.C. 20001
Copyright © National Academy of Sciences. All rights reserved.
Terms of Use and Privacy Statement



Below are the first 10 and last 10 pages of uncorrected machine-read text (when available) of this chapter, followed by the top 30 algorithmically extracted key phrases from the chapter as a whole.
Intended to provide our own search engines and external engines with highly rich, chapter-representative searchable text on the opening pages of each chapter. Because it is UNCORRECTED material, please consider the following text as a useful but insufficient proxy for the authoritative book pages.

Do not use for reproduction, copying, pasting, or reading; exclusively for search engines.

OCR for page 41
Measuring What Matters: Allocation, Planning, and Quality Assessment for the Ryan White CARE Act 2 Overview of the HIV/AIDS Epidemic and the Ryan White CARE Act This chapter provides abrief overview of the HIV/AIDS epidemic, the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act (RWCA) in the context of other federal spending programs for HIV/AIDS care, and the history and current structure of the CARE Act and its allocation formulas. OVERVIEW OF THE HIV/AIDS EPIDEMIC Natural History of HIV Infection The AIDS epidemic was first recognized in June of 1981, when the Centers for Disease Control and Prevention (CDC) received reports of clusters of diseases that are not seen in persons with normally functioning immune systems (Pneumocystis carinii pneumonia and Kaposi’s sarcoma) among mostly young, otherwise healthy gay men (CDC, 1981). Epidemiologic studies showed that the virus was transmitted from infected persons through sexual contact, exposure to infected blood or blood products, sharing of contaminated needles and syringes, transplantation of infected organs or tissue, and from mother to child during pregnancy, at delivery or through breastfeeding (IOM/NAS, 1988). In 1983 and 1984, two groups of investigators identified a retrovirus, now known as human immunodeficiency virus (HIV), as the etiologic agent of AIDS (Barre-Sinoussi et al., 1983; Gallo et al., 1984). Most people have no symptoms at the time of HIV infection. Some

OCR for page 41
Measuring What Matters: Allocation, Planning, and Quality Assessment for the Ryan White CARE Act people experience the acute retroviral syndrome, which is flu-like illness characterized by nonspecific symptoms such as fever, fatigue, rash, musculoskeletal pain, sore throat, swollen lymph nodes, arthralgias or myalgias, pharyngitis, and lymphadenopathy (Fauci et al., 1996). During this time, test for HIV antibody tests are usually negative and infection can only be diagnosed by testing the blood for viral products such as HIV RNA (viral load) or proteins (P24 antigen) (Pantaleo et al., 1993; Fauci et al., 1996). After the acute phase of infection, the amount of viral products in the blood is reduced, and tests for HIV antibody become positive. Patients then enter a prolonged period, usually 10 or more years, during which they have no (or perhaps few) symptoms despite the fact that HIV continues to actively multiply. Because of this, persons can still transmit the virus to others during the asymptomatic phase, allowing HIV to spread unnoticed (IOM/NAS, 1988; Pantaleo et al., 1993). The ongoing multiplication of HIV causes progressive damage to a person’s immune system through destruction of specific white blood cells known as CD4+ T-lymphocytes. With the progressive decline in CD4+ cell count, most infected persons eventually begin to develop symptoms which can include syndromes such as fever, unexplained weight loss, diarrhea, and dementia (Pantaleo et al., 1993). The damage to their immune system predisposes them to a wide range of unusual diseases. These so-called opportunistic conditions include infections with nonaggressive microorganisms and certain cancers. When these conditions occur in the presence of HIV infection or when the CD4+ cell count drops below 200 cells/µL, the patient is said to have developed AIDS. In the absence of treatment, the disease is nearly always fatal with the median time from a CD4+ count < 200 cells/µL to death of 3.7 years in an untreated patient (Pantaleo et al., 1993). To date, no cure or vaccine has been developed for HIV disease, although recent treatment advances in combination antiretroviral therapy have resulted in slowing of the progression of the disease, and often temporary restoration of immune functioning, in infected individuals. Current Trends The AIDS epidemic, now entering its third decade, has had an enormous impact in terms of morbidity and mortality. By the end of 2001, 816,149 AIDS cases and 467,910 deaths had been reported in the United States to the CDC (CDC, 2002). AIDS prevalence has increased steadily over time; at the end of 2001, an estimated 362,827 people were living with AIDS (CDC, 2002). Globally, an estimated 40 million people are living with HIV/AIDS and three million people have now died from AIDS (CDC, 2002).

OCR for page 41
Measuring What Matters: Allocation, Planning, and Quality Assessment for the Ryan White CARE Act Following the introduction of combination antiretroviral therapy in the 1990s, the number of deaths and new AIDS cases in the United States began to decline for the first time in the history of the epidemic (Karon et al., 2001). Between 1995 and 1998, the annual number of new AIDS cases fell by 38 percent (from 69,242 to 42,832) and deaths by 63 percent (from 51,760 to 18,823). These declines in morbidity and mortality have stabilized in more recent years (CDC, 2003a). HIV incidence and total HIV prevalence cannot be measured directly because many newly infected persons either do not seek or are not offered an HIV test. CDC estimates, however, that approximately 40,000 new HIV infections occur per year and that between 850,000 and 950,000 people are infected with HIV (Fleming et al., 2002). An estimated 25 percent of individuals infected with HIV do not know their status (Fleming et al., 2002). Racial and ethnic minorities, particularly African Americans and Hispanics, have been disproportionately affected by the HIV/AIDS epidemic. In 2001, more than 70 percent of newly diagnosed AIDS cases in the United States were among racial/ethnic minority groups (CDC, 2002) and 63 percent of all persons living with AIDS were among racial/ethnic groups (CDC, 2003a). Women have also been disproportionately affected by HIV/AIDS. From 1986 to 2002, the proportion of AIDS cases in women and adolescent girls increased from 8 to 26 percent (CDC, 2003b). HIV disease is also increasingly affecting people who are poor, unemployed, and confront a variety of barriers to care (Bozzette et al., 1998; Kaiser Family Foundation, 2000). The HIV Costs and Services Utilization Study (HCSUS), a nationally representative study of people with HIV/AIDS in care, found that in 1996, 46 percent of adults under medical supervision for HIV infection reported incomes of less than $10,000 per year and 63 percent were unemployed (Bozzette et al., 1998). Providing treatment and care for people with HIV has become increasingly costly and complex. Combination antiretroviral therapy typically costs $10,000–$12,000 per individual per year (Kahn et al., 2001). The recently FDA-approved drug, Fuzeon (enfuvirtide), or T-20, the first in a new class of anti-HIV drugs known as fusion inhibitors, offers options to those who have failed other treatments.1 However, the new drug costs $20,000 for each person annually—over and above the cost of other antiretroviral treatments (Brown, 2003). The presence of comorbid conditions, such as substance abuse, mental illness, or hepatitis, adds another layer of 1   The drug has shown some success in treating drug-resistant strains of HIV (Brown, 2003). Recent studies estimate that a sizable proportion of recently infected individuals (11–27 percent in the years 1999-2001) have some resistance to antiretroviral drugs (Weinstock et al., 2000; Grant et al., 2002; Little et al., 2002; Simon et al., 2002).

OCR for page 41
Measuring What Matters: Allocation, Planning, and Quality Assessment for the Ryan White CARE Act complexity to the care of HIV-infected patients, as they can be paths to infection and/or barriers to care (IOM, 2001). PAYING FOR HIV/AIDS CARE The HCSUS estimated about one-half and as many as two-thirds of all people with HIV/AIDS were not in regular care (Bozzette et al., 1998). More recent estimates suggest that range may be between 42 and 59 percent (Fleming et al., 2002). Some of these people are not aware of their status; others do not have access to insurance programs, are underinsured, or face other barriers in accessing care. There are multiple sources of insurance coverage and care for people living with HIV/AIDS in the United States. Most individuals with HIV/ AIDS who have insurance and are in the care system, are covered by public-sector programs, namely Medicaid and Medicare. HIV-infected individuals without insurance or adequate coverage rely on a variety of safety-net programs, such as CARE Act providers, community and migrant health centers, free clinics, and public hospitals. CARE Act funds may also be used to fill gaps for individuals with inadequate private or public insurance. These sources of coverage are poorly coordinated and constitute a substantial barrier for people with HIV/AIDS to obtaining appropriate care (Kaiser Family Foundation, 2000). Medicaid accounts for the largest amount of federal spending on health care for people with HIV/AIDS (48 percent, or $4.2 billion in fiscal year [FY]2002), followed by Medicare (24 percent, or $2.1 billion in FY2002), and the CARE Act (22 percent, or $1.9 billion in FY2002). The Department of Veterans Affairs, other programs in the Department of Health and Human Services (HHS), Department of Defense, and the Department of Justice account for the remainder (Kaiser Family Foundation, 2002) (Figure 2-1). Medicaid and Medicare are entitlement programs which means that spending automatically expands or contracts with the need for benefits. Individuals who meet eligibility requirements are legally entitled to services, and federal and state budgets automatically appropriate funds to pay for them. Discretionary spending programs, in contrast, such as RWCA, are capped; each year Congress sets the overall level of spending through the appropriation process. Eligibility for or coverage of services may be limited if the costs of their care exceed the appropriated funds (Foster et al., 2002). Sources of insurance coverage vary substantially by state contributing to differential access across geographic areas. Considerable differences in coverage by race, ethnicity, and sex also exist (Kaiser Family Foundation, 2000). The HCSUS found that African Americans and Latinos

OCR for page 41
Measuring What Matters: Allocation, Planning, and Quality Assessment for the Ryan White CARE Act FIGURE 2-1 Federal spending on HIV/AIDS care by program, FY2002 (Total = $8.7 billion). SOURCE: Kaiser Family Foundation, 2002. were more likely to depend on Medicaid and to be uninsured than whites. Whites were more likely to have private insurance than other racial and ethnic groups. Women were also more likely to rely on public insurance, especially Medicaid, than men. HCSUS also found disparities in access to care according to type of insurance coverage and other demographic characteristics. Individuals with HIV who were on Medicaid or uninsured, along with women and racial/ethnic minority groups, did more poorly on a variety of access measures than individuals who were privately insured, male, and white (Bozzette et al., 1998; Shapiro et al., 1999; Kaiser Family Foundation, 2000). HISTORY OF THE CARE ACT The CARE Act was authorized by Congress and signed into law on August 18, 1990 as Title XXVI of the Public Health Service Act (Ryan White CARE Act of 1990. P.L. 101-381). Since the initial authorization, the bill has been reauthorized and amended in 1996 (Ryan White CARE Act Amendments of 1996. P.L. 104-146) and 2000 (Ryan White CARE Act

OCR for page 41
Measuring What Matters: Allocation, Planning, and Quality Assessment for the Ryan White CARE Act Amendments of 2000. P.L. 106-345). The purpose of the Act is “to provide emergency assistance to localities disproportionately affected by the HIV epidemic and to make financial assistance to States and other public and private nonprofit entities to provide for the development, organization, coordination, and operations of more effective and cost-efficient systems for the delivery of essential services to individuals and families with HIV disease” (Ryan White CARE Act of 1990. P.L. 101-381 § 2 Purpose). Numerous grant programs were included in the structure of the Act to address the varying effect of HIV disease on government agencies, health care providers and institutions, and persons and family members with HIV disease. Although modifications have been made to the Act as a result of reauthorization bills, the original structure and function have remained relatively intact. Authorization of the Ryan White CARE Act (1990) Several efforts within Congress and the Administration to assist localities and states in addressing the rapidly escalating cost of HIV care preceded the authorization of the Act. Congress had previously provided federal grant relief for highly affected areas and to states through various demonstration projects funded via appropriations bills, such as those under the Health Omnibus Programs of 1988 (P.L. 100-607) and HIV treatment demonstration projects.2 These projects provided funds to highly affected communities in order to establish home and community-based health care services as an alternative to more expensive inpatient hospital care. Several other discretionary grant programs provided support to states for the purchase of HIV medications and to provide access to research and care among HIV-infected pregnant women and children. Although these efforts were effective, these federal grants had a limited authorization and were unable to provide support to the growing number of localities being affected by the epidemic. In 1987, Congress began discussion toward developing a comprehensive federal relief program. Relieving the disproportionate effect of HIV/ AIDS on specific urban settings and providers became one of the primary objectives for the development and implementation of the initial federal CARE Act program. Congressional hearings in the late 1980s highlighted the need for a stable long-term federal assistance program. Public health officials, health care providers (primarily representatives from public hospital systems), and persons with HIV disease provided testimony on the economic and personal burdens of the HIV epidemic (U.S. Congress, 2   Funds for grants to states to provide therapeutics appropriated to the Public Health Emergency Fund authorized by section 319 of the Public Health Services Act.

OCR for page 41
Measuring What Matters: Allocation, Planning, and Quality Assessment for the Ryan White CARE Act 1990). Public hospitals located in highly affected urban centers, such as New York, Miami, and San Francisco, reported being overwhelmed with the costs of providing medical care for under- and uninsured persons with complex medical problems related to AIDS (U.S. Congress, 1990). Persons with AIDS were reported as having lost access to private insurance coverage because of poor health, termination of employment, and ineligibility for Medicaid. After extensive debate, Congress finally supported the idea of a federal program to address the disproportionate nature of the epidemic. The authorized CARE Act established a discretionary program based on a multigrant structure designed to address the needs of state and local communities, health care providers, and persons and family members with HIV disease. The CARE Act was organized into four title programs. Title I grants were targeted to highly affected urban centers, known as Eligible Metropolitan Areas (EMAs), for purposes of providing “emergency relief” to highly affected communities. EMAs were defined in the statute as any metropolitan area with a cumulative total of more than 2,000 AIDS cases or a per capita incidence of cumulative cases of AIDS equal to or greater than 25 cases per 100,000 persons reported to the CDC. Congress intended for the greatest proportion of funding to be directed to EMAs with the greatest HIV epidemic and economic and social burdens related to the epidemic. Congress created two distinct Title I grant awards, the base grant and the supplemental grant. The base grant award provided EMAs with direct and immediate access to federal support based on the cumulative AIDS cases. The base grant federal allocation formula included the cumulative number of AIDS cases in the EMA divided by the sum of all cumulative cases in all eligible areas for the base award. A per capita incidence rate of cumulative cases was included in the formula to adjust for the demand for services within the local community (Ryan White CARE Act 1990. P.L. 101-381. § 2603[a][3]). The Title I supplemental grant provided funds through a separate application process. Congress provided the Secretary of HHS, through the supplemental award process, the authority to direct one-half of the total appropriation to eligible Title I grantees based on the following: the number of persons with AIDS who needed care, demographic data such as poverty levels, the average cost of providing each category of services and the extent to which third-party payer coverage is available, and the aggregate amounts expended on services (Ryan White CARE Act 1990. P.L. 101-381. § 2603[b][3] and § 2605[b]). Title II grants were provided to all 50 states, the District of Columbia, and U.S. territories. These awards established the role of the state or territory as the primary entity responsible for the development and operation of a “comprehensive service delivery system.” This included the estab-

OCR for page 41
Measuring What Matters: Allocation, Planning, and Quality Assessment for the Ryan White CARE Act lishment and support of provider networks (consortia), giving assistance for private health insurance coverage (but not to replace state Medicaid programs), and directing the purchase and distribution of HIV treatments. Grant awards were authorized to states and territories based on a defined distributional factor. This factor was the product of the cumulative AIDS cases reported to CDC during the two most recent years and the relation between average per capita income in the United States compared to that of the state. Finally, the Act established various direct federal grant programs, Title III and IV, to support community-based providers and institutions delivering direct early intervention services, primary care, women’s and family health, and social services. Title III(a) provided grants to states for early intervention service programs, such as HIV counseling, testing, referral, and treatment. Title III(b) provided grants directly to public and nonprofit eligible entities to provide early intervention services. Preference for such awards was given to providers experiencing an increase in burden in providing HIV services or lacking availability of primary health services. Title IV allowed for grants directed to a wide range of research and demonstration activities. This included the Demonstration Grants for Research and Services for Pediatric Patients with AIDS (Ryan White CARE Act 1990. P.L. 101-381. § 2671). Title IV continued previously funded federal grants, and provided support for clinical care and research on pediatric patients and pregnant women with HIV disease. First Reauthorization of the CARE Act (1996) When preparing for the first reauthorization, Congress had received input from key constituent groups regarding several apparent limitations to the existing federal allocation formula (U.S. Congress, 1995). One primary issue of concern was the significant interlocal or intergrantee variations in amount of awards per case. Given this input, Congress requested in 1995 a General Accounting Office (GAO) investigation of the equity of distributions in federal funding through CARE Act Title I and II. In April 1995, GAO testified to Congressional committees on the results of its study. This testimony, and a report released later in the year, identified several problems in the federal allocation formulas methodology that contributed to inequities between inter-local funding levels. In addition, the GAO identified several issues of equitable distribution of federal funding based on criteria of “beneficiary equity” and “tax equity” (GAO, 1995a,b). The GAO found that significant differences existed between grantees in the per AIDS case award amounts. These existed for two reasons. First, the use of cumulative AIDS case counts included those who were de-

OCR for page 41
Measuring What Matters: Allocation, Planning, and Quality Assessment for the Ryan White CARE Act ceased. This resulted in an overestimation of the numbers of persons in need of services in certain EMAs, particularly, those that were heavily affected during early periods of the epidemic. As a result, the 1996 reauthorization instituted new formulas based on estimated living cases (ELCs). Second, AIDS cases were included in both Title I and Title II formulas, resulting in a double counting of EMA cases in states with EMAs. This resulted in an inflation of the numbers of cases within states (GAO, 1995a,b). A second set of issues, “beneficiary equity” and “tax equity,”3 was identified in the report. Neither Title I nor Title II formulas accounted for the variations in the cost of services or economic levels in the community. Regarding this, the GAO recommended the use of the Medicare Hospital Wage Index to adjust for labor costs and the cubed root of per capita personal income to adjust for the local tax base. The GAO recommended that both adjustments be applied simultaneously to Titles I and II formulas. Based on the GAO’s recommendations, Congress made several modifications to the Title I and II allocation formulas in 1996 to adjust for identified inequities. Changes were made to both base and supplemental grant awards, and provisions were enacted to protect Title I and II grantees against significant losses in federal CARE Act funds. In order to better estimate the numbers of persons living with AIDS, Title I and II allocation formulas were amended to include only AIDS case counts reported to CDC for the most recent ten years. The data were further weighted for the likelihood of deaths based on nationally devised mortality rates. Although the Senate bill included an adjustment for service costs (U.S. Congress, 1995), Congress could not reach final agreement on the use of cost data or funding capacity with regard to the base formula award. Thus, Congress did not reauthorize the use of average per capita income for the states in the Title II allocation formula. Neither the Title I nor Title II base formulas were amended to adjust for costs of services or the funding capacity of the local jurisdiction. The process for allocating the Title I supplemental award was amended by Congress in 1996 to include new factors related to the additional severity of need in the community. Costs and demands for services were included as a component in the supplemental award. The Secretary of HHS was directed to consider the ability of the qualified applicant to expend funds efficiently, and the effect on the cost and complexity of delivering health care and support to individuals with HIV disease in the eligible areas (Ryan White CARE Act Amendments of 1996. P.L. 104-146. 3   Defined as an absence of cost measures and an inappropriate fiscal capacity measure.

OCR for page 41
Measuring What Matters: Allocation, Planning, and Quality Assessment for the Ryan White CARE Act § 2602[b][2][B]). No specific statutory language was included to indicate the types of cost data that would be included as part of the supplemental application. The reauthorized Title II base formula included the allocation formula as indicated for Title I base awards, but was adjusted to address the funding differences between states because of EMAs. Congress adopted a formula with two separate components. The first component was the number of persons living with AIDS in the state respective of all states, and this constituted 80 percent of the award. The second component was the number of persons living with AIDS in non-EMA areas, and constituted 20 percent of the award. The 1996 reauthorization also included several provisions to limit the loss of Title I funding to eligible EMAs. A hold-harmless provision was established to assure that no entity received less than 92.5 percent of its 1995 base award amount. This provision was phased in over five years “to avoid disruption of services to beneficiaries, while still allowing for the redistribution on funds” (U.S. Congress, 1995). In addition, Title I eligibility criteria were modified to exclude the case rate factor and to specify the size of the metropolitan area as those with more than 500,000 people. The Second Reauthorization of the CARE Act (2000) When preparing for the second reauthorization in 2000, Congress revisited the issue of interlocal equity but expanded its inquiry to include local planning activities. In doing so, it requested a series of GAO studies to assess the use of CARE Act funds for the coverage of HIV services (GAO, 1995c) as well as the opportunities to enhance funding equity (GAO, 2000), as previously examined. In addition to these studies, Congress examined several other research studies on the access and use of HIV services in the United States (Bozzette et al., 1998; Shapiro et al., 1999). Congress continued to investigate the federal allocation formula and the influence of the hold-harmless provisions on resolving the inequities in per-case funding levels between Title grantees. GAO reported that minorities and women had used CARE Act services in proportion to the effect of AIDS within these populations. Yet, the GAO (2000) found, similar to the previous study (GAO, 1995c), that wide disparities continued to exist in the per-case funding levels between Title grantees. GAO explained this was most likely occurring because of two factors: a lack of appropriate data, specifically HIV surveillance data, to estimate numbers of HIV-infected persons in eligible areas, and the application of the hold-harmless provisions to EMA grant awards. However, the GAO reported that

OCR for page 41
Measuring What Matters: Allocation, Planning, and Quality Assessment for the Ryan White CARE Act only 60 percent of states had operative HIV surveillance data available, as reported by the CDC. Some of those without such data were states that had been heavily affected by HIV, namely California and New York (GAO, 2000). Based on the outcome of these studies and input from the Administration, grantees, and consumer representatives, Congress pursued a strategy to enhance the use of HIV surveillance data in the Title I and II allocation formulas, as well as in local planning activities. This was based on the perception that HIV data were becoming available in most areas and that HIV case reporting could be a more accurate measure of the number and unmet needs of persons with HIV disease (U.S. Congress, 2000). (Ryan White CARE Act Amendments of 2000. P.L. 106-345. § 2603[a][D]). Legislative changes related to the equitable distribution of resources were not limited to the federal allocation formulas. Such changes were applied to the local level in planning and allocating CARE Act funds within communities. Congress established an extensive list of duties to be incorporated in the planning and allocation processes for EMAs and states. The aim of these provisions was to develop a comprehensive plan for all HIV-infected persons in the local community. Congress also intended to enhance the ability of the existing local planning process to establish and support services for newly infected persons and persons from historically underserved communities (Ryan White CARE Act Amendments of 2000. P.L. 106-345. § 2602 [a][B][4][C][v] and [D][i]). The chief vehicle for accomplishing these planning changes was to be a comprehensive plan developed by EMA and state grantees. The plan was expected to be based on the epidemiologic profile of the community, the unmet needs of persons eligible for CARE Act services, and the service capacity needs of local providers. Congress established duties related to determining “unmet needs” of communities, particularly for HIV-infected persons not in care and historically underserved communities and affected subpopulations. Additionally, such data were to be used in the “severity of needs” profiles of the competitive Title I supplemental grant program. Within the supplemental application, the “severity of need” measure was expanded to include one-third of the grant award. Grantees were required to assess and plan for capacity development activities related to services for historically underserved communities (e.g., minorities and women) and affected subpopulations (e.g., persons with substance abuse and mental health problems). Acknowledging that the availability of demographic and unmet needs information would be determined by the existence and reliability of the state and local HIV surveillance system, Congress allowed for a phase-in of the use of such data for states and EMAs without active HIV surveillance systems.

OCR for page 41
Measuring What Matters: Allocation, Planning, and Quality Assessment for the Ryan White CARE Act BOX 2-2 Overview of Formula Features The National Research Council (NRC) Panel on Formula Allocations released two reports that provide an overview of the features of the formulas (NRC, 2001, 2003). Many of these features apply to RWCA formulas. The NRC panel identified four elements commonly used in the formulas: Need: The resources a jurisdiction needs will depend, in part, on the number of individuals eligible for service. Need measures might include the number of individuals with HIV/AIDS who are uninsured or underinsured, or the changing rates of infection. Generally, different conceptions of need for resources have different implications for the allocation of those resources. Under any conception, the true level of need must be estimated (NRC, 2001, 2003). Cost: Resources needed by a jurisdiction will also depend on the cost of providing services to eligible individuals. If possible, formulas should account for cross-jurisdictional variations in the costs of care stemming from factors such as differences in prevailing wages. Costs may also vary with the severity of cases and the complexity of providing services. Many public programs do not account for cost variations because of the difficulty of developing reliable estimates. Including cost measures in a formula may also create perverse incentives if recipients can influence allocations by overstating their costs (NRC, 2001, 2003). Fiscal Capacity: Fiscal capacity is the ability of a jurisdiction to meet an identified need. Per capita income and total taxable resources are examples of common fiscal capacity measures (Tannenwald, 1999; NRC, 2001; Downes and Pogue, 2002). Measures of capacity require estimation (NRC, 2003). Effort: Effort reflects the amount of available resources actually devoted to meeting the need. Total eligible medical expenditures is an example measure of effort (NRC, 2001). Including such measures in grant formulas may provide an incentive for recipients to overstate their effort. Although they vary widely among programs, most formulas combine two or more of these elements of need, cost, fiscal capacity, and effort. The NRC panel provides examples of how various measures are combined and discusses how errors Supplemental Award12 Supplemental awards are determined by a competitive application process, rather than by a formula. Reviewers score the application according to criteria laid out by HRSA. Either HRSA staff or external reviewers score applications. The supplemental award is divided among all EMAs 12   The process for awarding Title I supplemental funds is discussed in Chapter 5.

OCR for page 41
Measuring What Matters: Allocation, Planning, and Quality Assessment for the Ryan White CARE Act in the measurement or estimation of various formula elements may interact and lead to discrepancy between actual and desired allocations (NRC, 2003). Special Features of Formulas Formulas may also include special features such as hold-harmless provisions, thresholds, and limits that prompt funding allocations to depart from basic formulas (NRC, 2003). Hold harmless: Hold-harmless provisions curtail the extent to which grants can decline from one period to the next, usually according to fiscal years. Hold-harmless provisions limit unpredictable changes in funding or service delivery within jurisdictions, but they also diminish a program’s ability to respond to changing needs (NRC, 2003). The influence of hold-harmless provisions on funding depends on two factors: the allowed rate of reduction from year to year, and annual changes in total appropriations. A program with a 100 percent hold-harmless provision combined with no change in appropriation will result in no adjustment to the previous year’s allocations, regardless of whether a jurisdiction’s needs or other factors in the formulas have changed (NRC, 2003). Thresholds: Some allocation formulas include eligibility thresholds that require jurisdictions to demonstrate some minimum level of need in order to qualify for the grant (NRC, 2001). With a threshold, a small change in estimated need—whether owing to a statistical error or a change in true need—can significantly affect a jurisdiction’s funding (Zaslavsky and Schirm, 2002). The NRC panel recommends that evaluations explore how errors in estimated need affect jurisdictions’ funding, and how variations in estimated need over time affect the allocations over time. Eligibility thresholds may also raise the potential for gaming by grant recipients (NRC, 2003). Limits—minimums and caps: Some formula-based allocations ensure that no jurisdiction will receive less than a specified dollar amount or share of the total allocation. Other programs, however, impose a cap on individual awards. These upper and lower limits constrain the outcomes that would result if an allocation were determined solely by a basic formula or need (NRC, 2003). taking into account the score as well as the proportion of all ELCs that an EMA has. Three different “smoothing” algorithms are applied to see which distributes the money most appropriately. In general, no grantee is given less than 80 percent of their base formula award (HRSA, 2001). Title I Minority AIDS Initiative Award MAI grant awards are divided among all EMAs according to a formula based on their proportion of racial and ethnic minorities AIDS

OCR for page 41
Measuring What Matters: Allocation, Planning, and Quality Assessment for the Ryan White CARE Act TABLE 2-1 Description of Formula Grants for Titles I and II of the Ryan White CARE Act Title Formula Grant Description Input Data Title I Base Award Base award is divided among all EMAs based on the EMA’s proportion of ELCs of the total ELCs in all EMAs. 10 most recent years Title I Minority AIDS Initiative (MAI) MAI award is divided among all EMAs based on the EMA’s proportion of non-white1 reported AIDS the most recent Cumulative reported nonwhite AIDS cases in cases for most recent 2-year period. 2 years (adjusted for reporting delays) Title II Base Award 80% of the base award is divided among states/territories based upon each state/territory’s proportion of the total ELC in all states territories. 20% is based on each state’s proportion of ELCs in all states and territories that are located outside the EMAs within a state. 10 most recent years of ELCs Title II AIDS Drug Assistance Program (ADAP) Base ADAP award is divided among all states/territories based upon the state/territory’s proportion of the total ELCs in all states and territories. There is no 80-20 split like base award. 10 most recent years of ELCs Title II AIDS Drug Assistance Program (ADAP) Supplemental ADAP supplemental award is divided among qualifying** states/territories based upon the qualifying state/ territory’s proportion of the total ELCs in qualifying states and territories. 10 most recent years of ELCs

OCR for page 41
Measuring What Matters: Allocation, Planning, and Quality Assessment for the Ryan White CARE Act Threshold Minimum Award Hold-Harmless Match Requirement MSAs with a population ≥500,000 and with 2000 reported AIDS cases in most recent 5 years No Base year is FY2000 appropriation. FY2001 = 98%; FY2002 = 95%; FY2003 = 92%; FY2004 = 89%; FY2005+ = 85% No For jurisdictions with >0 reported AIDS cases among racial and ethnic minorities No No No No $200,000 for states with <90 cases; $500,000 for states with ≥90 cases; $50,000 for territories Base year is FY2000 appropriation. FY2001 = 99%; FY2002 = 98%; FY2003 = 97%; FY2004 = 96%; FY2005+ = 95% For states2 with >1% of national total reported AIDS cases in most recent 2 years. Match rate schedule: FY1: $1 state: $5 federal FY2: $1 state: $4 federal FY3: $1 state: $3 federal FY4+: $1 state: $2 federal No No Base year is FY2000 appropriation. FY2001 = 99%; FY2002 = 98%; FY2003 = 97%; FY2004 = 96%; FY2005+ = 95% No To qualify, states must meet specified criteria.** No No $1 state: $4 federal

OCR for page 41
Measuring What Matters: Allocation, Planning, and Quality Assessment for the Ryan White CARE Act Title Formula Grant Description Input Data Title II Emerging Communities Funding for the EC award is divided in half. Half of the money is divided among MSAs2 with 1000–1999 AIDS cases. The other half is divided among MSAs with 500–999 AIDS cases. Each half is divided among qualifying MSAs, based upon the MSA’s proportion of the total AIDS cases for all qualifying MSAs. Cumulative reported AIDS cases for most recent 5 years Title II Minority AIDS Initiative (MAI) MAI award is divided among all states based on the state’s proportion of reported AIDS cases in the most recent 2 year period among racial and ethnic minorities. Cumulative reported nonwhite AIDS cases for most recent 2 years (adjusted for reporting delays) SOURCE: HRSA, 2001. Special formula features: Threshold: A minimum level of need required before an area is eligible for any funds under the program. Minimum: A minimum amount to be received by each state or jurisdiction. Hold-harmless: A provision which limits decrease in amounts received by areas from one time period (generally fiscal year) to the next. Match requirement: The minimum amount or rate a state must provide in non-federal funds on in-kind contributions according to the schedule established in the CARE Act. SOURCE: NRC, 2003. cases—including African Americans, Hispanics, Asian/Pacific Islanders, and Native Americans/Alaska Natives—diagnosed during the most recent two years for which data are available, and adjusted for reporting delays. For instance, data from 1998 and 1999 were used to calculate the FY2001 MAI award (HRSA, 2001). Title II Awards to States and Territories Base Award Title II base awards are determined by a formula. Eighty percent of the base grant is based on each state’s proportion of the total number of

OCR for page 41
Measuring What Matters: Allocation, Planning, and Quality Assessment for the Ryan White CARE Act Threshold Minimum Award Hold-Harmless Match Requirement For MSAs (areas with >50,000 population) not eligible for Title I AND that have 500–1,999 cumulative reported AIDS cases in most recent 5 years Minimum of $5 million for each tier No No For jurisdictions with >0 reported AIDS cases among racial and ethnic minorities No No No **Qualifying Criteria for ADAP Supplemental Award: A state or territory must meet one of the following “severe need” criteria, as defined by the Secretary of HHS: (1) Financial eligibility requirement (number of eligible individuals at or below 200% of the official poverty line to whom the state is unable to provide therapeutics); (2) Medical eligibility restrictions (e.g., CD4 T-cell count ≤500; specific viral load); (3) Limited formula compositions for antiretrovirals; (4) < 10 medications to treat opportunistic infections. SOURCE: National Alliance of State and Territorial AIDS Directories, Kaiser Family Foundation, AIDS Treatment Data Network (2003). NOTES: 1Metropolitan Statistical Areas (MSAs) include all communities in the U.S. with a population of 50,000 or greater. 2Puerto Rico is legislatively exempt from this requirement. ELCs = Estimated Living AIDS Cases ELCs. The remaining 20 percent is based on the number of ELCs in each state outside any EMAs, in proportion to the total number of such cases nationwide13 (HRSA, 2001). The base award also includes a minimum award: $200,000 for states with fewer than 90 ELCs, $500,000 for states with more than 90 ELCs, and $50,000 for all U.S. territories, regardless of the number of AIDS cases (HRSA, 2001). The base award formula includes a hold-harmless provision that declines annually according to a schedule established in the legislation. 13   This provision was enacted under the 1996 reauthorization to provide an extra boost to states without EMAs.

OCR for page 41
Measuring What Matters: Allocation, Planning, and Quality Assessment for the Ryan White CARE Act States must match a portion of the Title II base award if they report more than 1 percent of the total number of AIDS cases for the two preceding fiscal years. The number of years that a state has been matching determines the percentage that it must match (20 percent the first year, 25 percent the second year, 33 percent the third year, and 50 percent in the fourth year and thereafter). Puerto Rico is exempt from this requirement (HRSA, 2001). AIDS Drug Assistance Program Award The ADAP award is based on a state’s proportion of the total ELCs in all states and territories. Unlike the Title II base award, this award does not include an 80–20 split. The formula includes a hold-harmless provision that declines annually according to a schedule established in the legislation (HRSA, 2001). ADAP Supplemental Award Before the ADAP award is calculated, 3 percent of the appropriated earmark is set aside for the ADAP Supplemental Award, given to states in severe need (HRSA, 2002e). A state’s supplemental ADAP award is based on its proportion of the total ELCs in qualifying states and territories. A state must match 25 percent of these federal funds to receive the award. If a qualifying state does not agree to do so, HRSA runs the formula again after deleting the nonparticipating states (HRSA, 2001). Title II Minority AIDS Initiative Award This award is based on each state’s proportion of all African Americans, Hispanics, Asian/Pacific Islanders, and Native Americans/Alaska Natives diagnosed during the previous two calendar years, adjusted for reporting delays. If a state or territory has no diagnosed nonwhite AIDS cases during the past two years, it does not receive an award (HRSA, 2001). Montana, North Dakota, American Samoa, Marshall Islands, Northern Marianas, Republic of Palau, and the Federated States of Micronesia did not qualify for this award in FY2002 (HRSA, 2002k). Emerging Communities Award ECs are MSAs—a community with a population greater than 50,000—that do not meet the eligibility criteria to qualify as a Title I EMA, but that have 500–1,999 reported AIDS cases in the most recent five-year period.

OCR for page 41
Measuring What Matters: Allocation, Planning, and Quality Assessment for the Ryan White CARE Act Half the available funding goes to MSAs with 1,000–1,999 AIDS cases, while the other half is divided among MSAs with 500–999 AIDS cases. Each award is based on the area’s proportion of the total number of AIDS cases among all qualifying MSAs (HRSA, 2001). REFERENCES Barre-Sinoussi F, Chermann JC, Rey F, Nugeyre MT, Chamaret S, Gruest J, Dauguet C, Axler-Blin C, Vezinet-Brun F, Rouzioux C, Rozenbaum W, Montagnier L. 1983. Isolation of a T-lymphotropic retrovirus from a patient at risk for acquired immune deficiency syndrome (AIDS). Science 220:868–71. 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. Brown D. 2003, March 14. FDA Approves First in Class of AIDS Drugs; ‘Fusion Inhibitor’ Will Help People Whose Bodies Resist Current Medications. The Washington Post. P. A2. CDC (Centers for Disease Control and Prevention). 1981. Pneumocycstis Pneumonia–Los Angeles. Morbidity and Mortality Weekly Report 30:250–2. Atlanta, GA: CDC. CDC. 2002. HIV/AIDS Surveillance Report, Year-End Edition. 13(2). Atlanta, GA: CDC. CDC. 2003a. HIV/AIDS Surveillance in Women. L264 slide series through 2001. Slide 1 of 8. [Online]. Available: http://www.cdc.gov/hiv/graphics/images/l264/l264-1.htm [accessed August 2, 2003]. CDC. 2003b. Advancing HIV Prevention: New Strategies for a Changing Epidemic—United States, 2003. Morbidity and Mortality Weekly Report 52(15):329–32. Atlanta, GA: CDC. Downes T, Pogue T. 2002. How Best to Hand Out Money: Issues in the Design and Structure of Intergovernmental Aid Formulas. Journal of Official Statistics 18(3):329-52. Fauci AS, Pantaleo G, Stanley S, Weissman D. 1996. Immunopathogenic mechanisms of HIV infection. Annals of Internal Medicine 124(7):654–63. 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. Kaiser Family Foundation. Gallo RC, Salahuddin SZ, Popovic M, Shearer GM, Kaplan M, Haynes BF, Palker TJ, Redfield R, Oleske J, Safai B, et al. 1984. Frequent detection and isolation of cytopathic retroviruses (HTLV-III) from patients with AIDS and at risk for AIDS . Science 224:500–3.

OCR for page 41
Measuring What Matters: Allocation, Planning, and Quality Assessment for the Ryan White CARE Act GAO (General Accounting Office). 1995a. Statement of William Scanlon, GAO. Testimony before the Subcommittee on Health and Environment, Committee on Commerce, House of Representatives. April 5, 1995. GAO/T-HEHS-95-126. Washington, DC: GAO. GAO. 1995b. Ryan White CARE Act of 1990: Opportunities Are Available to Improve Funding Equity. GAO/T-HEHS-95-91. Washington, DC: GAO. GAO. 1995c. Ryan White CARE Act of 1990: Opportunities to Enhance Funding Equity. GAO/HEHS-96-26. Washington, DC: GAO. GAO. 2000. Ryan White CARE Act: Opportunities to Enhance Funding Equity. GAO/ T-HEHS-00-150. Washington, DC: GAO. Grant RM, Hecht FM, Warmerdam M, Liu L, Liegler T, Petropoulos CJ, Hellmann NS, Chesney M, Busch MP, Kahn JO. 2002. Time trends in primary HIV-1 drug resistance among recently infected persons. Journal of American Medical Association 288(2):181–8. HRSA (Health Resources and Services Administration). 2001. A Primer on Title I and Title II Formula Allocation Calculations. 2001. (Email communication, Steven Young, HRSA, November 11, 2001). HRSA. 2002a. AIDS Education and Training Centers Program. [Online]. Available: ftp://ftp.hrsa.gov/hab/aetcfact.pdf [accessed May 22, 2003]. HRSA. 2002b. HIV/AIDS Dental Programs [Online]. Available: http://ftp.hrsa.gov/hab/drpfact.pdf [accessed May 22, 2003]. HRSA. 2002c. Special Projects of National Significance Program. [Online]. Available: ftp://ftp.hrsa.gov/hab/spnsfact1.pdf [accessed May 22, 2003]. HRSA. 2002d. Title I: Grants to Eligible Metropolitan Areas. [Online]. Available: http://ftp.hrsa.gov/hab/titleifact.pdf [accessed May 22, 2003]. HRSA. 2002e. Title II: AIDS Drug Assistance Program. [Online]. Available: ftp://ftp.hrsa.gov/hab/adap1.pdf [accessed May 22, 2003]. HRSA. 2002f. Title II: Grants to States and Territories. [Online]. Available: http://ftp.hrsa.gov/hab/titleiifact.pdf [accessed May 22, 2003]. HRSA. 2002g. Title III: Planning Grant Program. [Online]. Available: ftp://ftp.hrsa.gov/hab/titleiiiplan.pdf [accessed May 22, 2003]. HRSA. 2002h. Title IV: Services for Women, Infants, Children, Youth, and Their Families. [Online]. Available: ftp://ftp.hrsa.gov/hab/titleiv.htm [accessed May 22, 2003]. HRSA. 2002i. National HIV CARE Program Resource Allocations. [Online]. Available: ftp://ftp.hrsa.gov/hab/allfigures.pdf [accessed July 14, 2003]. HRSA. 2002j. FY2002 Ryan White CARE Act Title I Emergency Relief Grants. (Email communication, Steven Young, HRSA, July 22, 2002). HRSA. 2002k. FY2002 Ryan White CARE Act Title II Emergency Relief Grants. (Email communication, Steven Young, HRSA, July 22, 2002). HRSA. 2003a. CARE Act Overview and Funding History. [Online]. Available: ftp://ftp.hrsa.gov/hab/fundinghis03.xls [accessed October 9, 2003]. HRSA. 2003b. Special Initiatives: Minority HIV/AIDS Initiatives (MAI). [Online]. Available: http://www.hab.hrsa.gov/special/mai.htm [accessed August 4, 2003].

OCR for page 41
Measuring What Matters: Allocation, Planning, and Quality Assessment for the Ryan White CARE Act HRSA/HAB (Health Resources and Services Administration/ HIV/AIDS Bureau). 2001. The Ryan White Comprehensive AIDS Resources Emergency (CARE) Act: Title II HIV Emergency Relief Program. Division of Service Systems. FY 2001 Supplemental Treatment Drug Grants For AIDS Drug Assistance Programs (ADAP) Application Guidance. Rockville, MD: HRSA. IOM (Institute of Medicine). 2001. No Time To Lose. Ruiz MS, Gable AR, Kaplan EH, Stoto MA, Fineberg HV, Trussell J, Eds. Washington, DC: National Academy Press. IOM/NAS (Institute of Medicine and the National Academy of Sciences). 1988. Confronting AIDS, Update 1988. Washington, DC: National Academy Press. Kahn JG, Haile B, Kates J, Chang S. 2001. Health and federal budgetary effects of increasing access to antiretroviral medications for HIV by expanding Medicaid. American Journal of Public Health 91(9):1464–73. Kaiser Family Foundation. 2000. Financing HIV/AIDS Care: A Quilt with Many Holes. Capital Hill Briefing Series on HIV/AIDS. Kaiser Family Foundation. Kaiser Family Foundation. 2002. Trends in U.S. Spending on HIV/AIDS. A Three Part Series: Spending on the HIV/AIDS Epidemic. Karon JM, Fleming PL, Steketee RW, De Cock KM. 2001. HIV in the United States at the turn of the century: An epidemic in transition. American Journal of Public Health 91(7):1060–8. Little S, Holte S, Routy JP, Daar ES, Markowitz M, Collier AC, Koup RA, Mellors JW, Connick E, Conway B, Kilby M, Wang L, Whitcomb JM, Hellmann NS, Richman DD. 2002. Antiretroviral drug resistance among patients recently infected with HIV. New England Journal of Medicine 347(6):385. National Alliance of State and Territorial AIDS Directors (NASTAD), Kaiser Family Foundation (KFF), AIDS Treatment Data Network (ATDN). 2003. National ADAP Monitoring Project. Annual Report: April 2003. NRC (National Research Council). 2001. Choosing the Right Formula. Washington, DC: National Academy Press. NRC. 2003. Statistical Issues in Allocating Funds by Formulas. Louis TA, Jabine TB, Gerstein MA, Eds. Washington, DC: The National Academies Press. Pantaleo G, Graziosi C, Fauci AS. 1993. New concepts in the immunopathogenesis of human immunodeficiency virus infection. New England Journal of Medicine 328(5):327–35. 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. Simon V, Vanderhoeven J, Hurley A, Remratnam B, Louie N, Dawson K, Parkin N, Boden D, Markowitz M. 2002. Evolving patterns of HIV-1 resistance to antiretroviral agents in newly infected individuals. AIDS 16:1511–9. Tannenwald R. 1999. Fiscal disparity among the states revisited. New England Economic Review July/August:3–25. U.S. Congress, House of Representatives. Committee on Commerce. 2000. Report on Ryan White CARE Act Amendments of 2000 (106-788). 106th Cong., 2d Sess. July 25, 2000.

OCR for page 41
Measuring What Matters: Allocation, Planning, and Quality Assessment for the Ryan White CARE Act U.S. Congress, Senate. Committee on Labor and Human Resources. 1990. Report on HIV Emergency Relief Grant Program (101-273). 101st Cong., 1st Sess. April 24, 1990. U.S. Congress, Senate. Committee on Labor and Human Resources. 1995. Report on Ryan White CARE Reauthorization Act of 1995 (104-25). 104th Cong., 1st Sess. April 3, 1995. Weinstock J, Respess R, Heneine W, Petropoulos CJ, Hellmann NS, Luo CC, Pau CP, Woods T, Gwinn M, Kaplan J. 2000. Prevalence of mutations associated with reduced antiretroviral drug susceptibility among human immunodeficiency virus type 1 seroconverters in the United States, 1993-1998. Journal of Infectious Diseases 182:330–3. Zaslavsky A, Schirm A. 2002. Interactions between survey estimates and federal funding formulas. Journal of Official Statistics 18(3):371–91.