Appendix D
Financing HIV/AIDS Care: A Quilt with Many Holes1

Jennifer Kates

Kaiser Family Foundation

INTRODUCTION

There are multiple sources of insurance coverage and care for people with HIV/AIDS in the United States. Insurance coverage is important to help promote access to regular and high-quality care. Of those who are insured and in the care system, most are covered by public sector insurance programs (primarily Medicaid or Medicare or both). The uninsured and the underinsured rely on an array of safety net programs including the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act, community and migrant health centers, private “free clinics,” and public hospitals. Some people with HIV/AIDS have private insurance but may still need to rely on the Ryan White CARE Act to fill in the gaps.

These multiple sources of coverage and care for people with HIV, however, are not well coordinated across programs, making it difficult for patients, their advocates, and providers to navigate access. Moreover, these programs often vary by state, resulting in differential access across the country. As such, the current system of financing for HIV care represents a complex patchwork that leaves some outside the system and presents others with financial barriers to accessing needed care.2,3,4,5

Indeed, despite the existence of national treatment guidelines6 calling for early access to medical care and treatment, including highly active antiretroviral therapy (HAART), an estimated 42% to 59% of the almost one million people living with HIV/AIDS in the U.S. are not in regular care7 (see Figure D-1). While a proportion of these individuals may not know



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Public Financing and Delivery of Hiv/Aids Care: Securing the Legacy of Ryan White Appendix D Financing HIV/AIDS Care: A Quilt with Many Holes1 Jennifer Kates Kaiser Family Foundation INTRODUCTION There are multiple sources of insurance coverage and care for people with HIV/AIDS in the United States. Insurance coverage is important to help promote access to regular and high-quality care. Of those who are insured and in the care system, most are covered by public sector insurance programs (primarily Medicaid or Medicare or both). The uninsured and the underinsured rely on an array of safety net programs including the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act, community and migrant health centers, private “free clinics,” and public hospitals. Some people with HIV/AIDS have private insurance but may still need to rely on the Ryan White CARE Act to fill in the gaps. These multiple sources of coverage and care for people with HIV, however, are not well coordinated across programs, making it difficult for patients, their advocates, and providers to navigate access. Moreover, these programs often vary by state, resulting in differential access across the country. As such, the current system of financing for HIV care represents a complex patchwork that leaves some outside the system and presents others with financial barriers to accessing needed care.2,3,4,5 Indeed, despite the existence of national treatment guidelines6 calling for early access to medical care and treatment, including highly active antiretroviral therapy (HAART), an estimated 42% to 59% of the almost one million people living with HIV/AIDS in the U.S. are not in regular care7 (see Figure D-1). While a proportion of these individuals may not know

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Public Financing and Delivery of Hiv/Aids Care: Securing the Legacy of Ryan White FIGURE D-1 Estimated number of people living with HIV/AIDS and proportion not in care, United States, 2000. SOURCE: Fleming, P., et al., HIV Prevalence in the United States, 2000, 9th Conference on Retroviruses and Opportunistic Infections, Abstract #11, Oral Abstract Session 5, February 2002. their HIV status (up to one-third of those living with HIV/AIDS8), others do not have access to insurance coverage (or face limits in their coverage) or care programs to help them afford the high cost of HIV treatment and services. The costs of HIV care present significant financial barriers to access for people with HIV/AIDS and strain the systems that serve them. THE COST OF HIV CARE: A CONTINUING CONCERN Financing care for people with HIV/AIDS has been of concern since early in the epidemic when people with HIV/AIDS often required expensive hospital inpatient and end-of-life care.9,10,11 The introduction of antiretroviral drug treatment in 1987 did not allay cost concerns—the very first FDA-approved AIDS drug, AZT, carried an initial pricetag of $10,000 a year.12 The current standard of care—combination antiretroviral therapy or HAART—calls for the use of expensive antiretrovirals in combinations of three, four, or even more medications.6 HAART has been largely responsible for significant declines in HIV-related deaths and improved health status for many.13,14 Combination therapy alone costs between $10,000

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Public Financing and Delivery of Hiv/Aids Care: Securing the Legacy of Ryan White and $12,000 per patient per year depending on the regimen and payer (newer formulations of more than one antiretroviral drug may be priced as high as their component parts).15,16,17,29 When additional medical expenses for doctor’s visits, laboratory tests, and drugs to prevent or treat HIV-related opportunistic infections are taken into account, average annual costs rise to approximately $18,000 to $20,000 per patient, with even higher expenses for those with more advanced HIV-related illness.17,18,19,20,21 HIV is increasingly affecting people who are poor, outside the workforce, and have a history of barriers to access.14,22 Even among those individuals who have resources, the costs of HIV care can quickly exhaust their assets and may leave them impoverished. In addition, despite improvements in treatment, HIV/AIDS is often a disabling condition that forces individuals to leave the workforce (or be unable to enter the workforce) thereby losing access to both income and, eventually, private insurance. Indeed, many people with HIV in care are low-income (an estimated 46% have incomes below $10,000 a year) and unemployed (63%).19 Because of these factors, people with HIV rely heavily on the public sector for care.11,23,24 Expenditures for HIV/AIDS care, including public expenditures, have risen significantly over time.23,24 Spending increases largely reflect growing numbers of people living with HIV/AIDS in need of services and increasing health care costs, particularly for prescription drugs. A recent analysis by the National Institute for Health Care Management (NIHCM) Foundation, for example, found that national retail drug expenditures for antiretrovirals totaled $2,572.4 million in 2001, representing an almost 21 percent increase over 2000, compared to a 17% increase for all retail prescription drug sales over the same period.25 Analysis prepared for the Kaiser Family Foundation indicates that Medicaid spending on antiretrovirals increased significantly between 1991 and 1998, particularly after the introduction of HAART.26 Spending on HIV/AIDS treatments by AIDS Drug Assistance Programs (ADAPs) has also increased significantly over time.49 Despite the high costs to patients and the payers and programs that serve them, spending on HIV care (an estimated $6.1 billion in 1998)20 represents only a very small proportion—less than 1%—of estimated spending on overall direct personal health care expenditures in the United States.27 In addition, several studies have demonstrated the cost effectiveness of HIV care when compared to the treatment of many other disabling conditions.17,28,29,30 For example, a recent study found that the cost-effectiveness ratios of combination therapy for HIV infection ranged from $13,000 to $23,000 per quality-adjusted year of life gained (vs. no therapy) compared to $150,000 per quality-adjusted year of life gained for dialysis patients.29

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Public Financing and Delivery of Hiv/Aids Care: Securing the Legacy of Ryan White INSURANCE COVERAGE OF PERSONS WITH HIV/AIDS There are several challenges to assessing insurance coverage of persons with HIV/AIDS. These include difficulties in accessing the population of people with HIV/AIDS, given that a significant proportion is not in the care system and many do not know their HIV status, as well as limitations in data systems, methodological complexities, and the lack of capacity by major purchasers of care (e.g., state Medicaid programs) to perform client-level payer status analysis. Coverage of Those in Care The HIV Cost and Services Utilization Study (HCSUS), the only nationally representative study of people with HIV/AIDS in care, found that one-third to one-half of all people with HIV/AIDS were in regular care in 1996.19,31 More recent estimates from the Centers for Disease Control and Prevention (CDC) place this range slightly higher, between 41% and 58%.7 Most of those in care rely on public sector insurance programs or are uninsured, estimated to range between approximately 70%32 and 83%.33 HCSUS found that one-half are estimated to depend on the Medicaid (44%) or Medicare (6%) programs for coverage and one in five (20%) are uninsured32 (comparatively, among American adults overall, 6% are estimated to be covered by Medicaid, 2% by Medicare, and 19% are uninsured).34 Almost one-third have private insurance, a much smaller percentage than the U.S. adult population overall (31% of people with HIV compared to 73% of American adults overall).34 (See Figure D-2.) It is important to note that people with HIV/AIDS in care who are uninsured may be receiving care from Ryan White CARE Act programs or other safety net providers. Many people with HIV/AIDS obtain their financing for care through multiple sources. For example, approximately 15% of those with Medicaid coverage also have other sources of coverage, primarily Medicare. About 12–13% of people with HIV/AIDS in care are estimated to be dual Medicaid and Medicare beneficiaries (called “dual eligibles” or “dual enrollees”).19,32,35 Viewed this way, Medicare covers approximately 19% of people with HIV/AIDS in care, including those also covered by Medicaid (6% with Medicare only and 12–13% with both Medicare and Medicaid). More recent data on insurance coverage of people with HIV/AIDS in care are available from the HIV Research Network (HIVRN), a collaborative effort between the Agency for Healthcare Research and Quality (AHRQ), several other federal agencies, and the Johns Hopkins School of Medicine.36 While not national in scope, the HIVRN includes data from 1999 for 15 medical practices around the country, representing approximately 9,500 patients. Insurance coverage data were available for 42% of

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Public Financing and Delivery of Hiv/Aids Care: Securing the Legacy of Ryan White FIGURE D-2 Estimated insurance coverage of people living with HIV/AIDS in care, United States, 1996. Includes those with other coverage, primarily Medicare. SOURCE: Fleishman, J., Personal communication, Analysis of HCSUS Data, January 2002. HIVRN patients. Of the full sample, including those for whom coverage data were not available, 30% had Medicaid coverage, 5% had Medicare coverage, 4% were uninsured, and 3% were privately insured. Of the 42% for whom coverage data were available, 70% were covered by Medicaid, 13% by Medicare, 10% were uninsured, and 7% were privately insured.36 There are important differences in coverage by race, ethnicity, and sex (see Figure D-3). HSCUS found32 that African Americans and Latinos with HIV are much more likely to depend on Medicaid than whites (59% and 50% respectively, compared with 32% of whites). Minority Americans with HIV also are more likely to be uninsured than whites (22% of African Americans and 24% of Latinos compared with 17% of whites). Whites with HIV have the highest rate of private insurance across all racial and ethnic groups (44%). Women with HIV are also much more likely to rely on public insurance than their male counterparts, particularly Medicaid (61% of women compared with 39% of men), and less likely to be covered through the private sector (14% of women compared with 36% of men). This may be due in part to the fact that women are more likely to qualify for Medicaid as parents of dependent children or when pregnant. The intersection of race/ethnicity and sex is important here—most women newly infected with HIV and living with AIDS are women of color.13,37 Persons in care do not fare equally in the health care system. Analysis of data from HCSUS found that people with HIV who were covered by

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Public Financing and Delivery of Hiv/Aids Care: Securing the Legacy of Ryan White FIGURE D-3 Estimated insurance coverage of people living with HIV/AIDS in care by race/ethnicity and sex, United States, 1996. *Includes those with other coverage, primarily Medicare; May not total 100% due to rounding. SOURCE: Fleishman, J., Personal communication, Analysis of HCSUS Data, January 2002. Medicaid or were uninsured, and women and minority groups, fared more poorly on a range of access measures than those who were privately insured, male, and white.38 Other studies have found disparities as well.39,40,41,42 The reasons for this variation are not well understood but are likely due to a range of factors including the existence of historical barriers to access, disease stage at time of HIV diagnosis and at entrance into care, and HIV-related stigma.40,43,44 More recent analyses, including longitudinal analyses of the HCSUS national probability sample, have found that some of these differences have narrowed over time.38,40,41,42 In addition, findings related to differences in care vary by type of access measure. For example, while HCSUS findings indicate that those covered by Medicaid did not fare as well as those who were privately insured according to some measures of access (e.g., receipt of combination therapy, hospitalization rates),38 Medicaid coverage was also found to be a protective factor against delay in obtaining initial medical

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Public Financing and Delivery of Hiv/Aids Care: Securing the Legacy of Ryan White care after HIV diagnosis, compared to other payers.45,46 Similarly, analysis of insurance coverage at time of initial HIV diagnosis indicates that those covered by Medicaid or by other public payers were less likely to be diagnosed late in illness than those who were privately insured (see discussion below).47 COVERAGE OF THOSE NOT YET IN CARE Little is known about insurance coverage of people with HIV/AIDS who are not yet in regular HIV care. Recent analysis of the CDC’s HIV/AIDS Surveillance System (HARS) database provides the first assessment of payer status at time of initial HIV diagnosis, before entrance into HIV care.47 HARS data from 1994 through 1999 from 25 states with integrated HIV and AIDS surveillance were analyzed. Of the 104,780 persons diagnosed with HIV, data on insurance coverage were available for approximately half (52%). Of the full sample, including those for whom no coverage data were available, private coverage was the most common payer (17%); slightly more than one-third had public coverage or were uninsured—11% had Medicaid coverage, 10% had other public/government coverage, and 14% were uninsured. Of the 52% for whom insurance coverage data were available, 32% were privately insured, 22% had Medicaid coverage, 19% had other public coverage, and 27% were uninsured.47,48 (See Figure D-4.) Insurance coverage varied by race/ethnicity, sex, and exposure category at time of diagnosis. For example, while similar proportions of men and women were uninsured, women were more than twice as likely to be covered by Medicaid at time of diagnosis. African American and Latino women were more likely to be covered by Medicaid than white women. Latinos were least likely to be insured.47 In addition, insurance coverage and timing of initial HIV diagnosis (e.g., whether or not a diagnosis was “late,” defined as having an AIDS diagnosis made within one year of the first reported HIV diagnosis) appear to be related. For example, between 34% and 54% were diagnosed late, depending on coverage. Those with private insurance were more likely to receive a late diagnosis (54%) than not (46%), while those with Medicaid, other public insurance, and the uninsured were more likely to receive an HIV diagnosis more than 12 months before their AIDS diagnosis.47 FEDERAL SPENDING ON HIV/AIDS CARE Data on federal spending on HIV/AIDS care are derived from analysis of funds specifically earmarked in appropriations legislation for HIV/AIDS care and from agency estimates.24 Actual HIV/AIDS care expenditures for the two largest care programs for people with HIV/AIDS, Medicaid and

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Public Financing and Delivery of Hiv/Aids Care: Securing the Legacy of Ryan White FIGURE D-4 Insurance coverage of persons with HIV/AIDS at time of diagnosis, 1994–1999. SOURCE: Kates, J., Levi, J., Neal, J., Gallagher, K., “Learning More About the HIV-Infected Population Not IN Care in the United States: Using Public Health Surveillance Data to Inform Current Policy Challenges in Enhancing Access,” Poster TuPeG 5690, XIV International AIDS Conference, Barcelona, Spain, July 2002. Medicare, are not available, and data presented here are based on actuarial estimates provided by the Centers for Medicare and Medicaid Services (CMS), the Department of Health and Human Services (DHHS) Agency that has responsibility for the Medicaid and Medicare programs. This is primarily due to the difficulties of assessing actual expenditures for people with HIV/AIDS within these two programs, since such spending data are not routinely collected; rather, to assess actual spending for people with HIV/AIDS, Medicaid and Medicare claims data would need to be analyzed using an algorithm specifically designed to identify claims for HIV-related care. Such algorithms have been developed, but are expensive and complex to implement at a national level and most states do not have the capacity to carry out these analyses on their own for their Medicaid programs. The advent of managed care presents additional challenges to collecting and analyzing actual spending data for people with HIV/AIDS. In FY 2002, federal spending on HIV/AIDS-related medical care, research, prevention, and other activities was estimated to total $14.7 billion.23,24 Of that, more than half ($8.7 billion or 59%) was spent on health care and related support services for people with HIV/AIDS (an additional $1.6 billion was spent on disability income support provided through the Supplemental Security Income [SSI] and Social Security Disability Insurance

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Public Financing and Delivery of Hiv/Aids Care: Securing the Legacy of Ryan White [SSDI] programs and housing assistance provided through the Housing Opportunities for Persons with AIDS [HOPWA] program). Not included in these care spending estimates is spending by state and local governments, although such spending represents an important component of public sector spending on HIV/AIDS care (for example, in FY 2002, the state share of Medicaid spending on AIDS was estimated by CMS to be $3.5 billion;23,24 in addition, in FY 2002, states reported that they provided $160 million to their AIDS Drug Assistance Programs).49 Medicaid is estimated to account for the federal government’s single largest expenditure on HIV/AIDS (29%). It also represents the largest amount of federal spending on health care for people with HIV/AIDS (48%), followed by Medicare (24%), and the Ryan White CARE Act (22%). The Department of Veterans Affairs accounts for another 4% of HIV/AIDS care spending, and remaining spending is spread among other agencies at the Department of Health and Human Services (e.g., the Substance Abuse and Mental Health Services Administration) and the Departments of Defense and Justice.24 (See Figure D-5.) More than two-thirds (72% in FY 2002) of estimated federal spending on HIV/AIDS care is entitlement or mandatory spending, through the Medicaid and Medicare programs. (See Figure D-6.) This is in large part because many people with HIV/AIDS become low-income (or are already low-income) and disabled and qualify for the nation’s health insurance entitlement programs. Twenty-eight percent is discretionary spending, primarily through the Ryan White CARE Act, which is the third largest source of federal funding for HIV/AIDS care. These distinctions are important since most entitlement spending changes each year (increases or decreases) based on the need for and cost of services while discretionary spending is dependent on annual appropriations by Congress and may not correspond to the number of people who need care or the costs of that care. Between FY 1995 and FY 2002, mandatory spending on HIV/AIDS care increased markedly (by 152%). Discretionary spending for HIV/AIDS care programs also increased significantly over this period (by 140%).24 As mentioned above, these increases largely reflect the advent of antiretroviral combination therapy, the rising cost of prescription drugs, and the growing numbers of people living with HIV/AIDS in need of care. Between FY 2001 and FY 2002, estimated mandatory spending on AIDS care increased by approximately 13% percent; it grew by 14% between FY 2002 and FY 2003.24,50,51 Federal funding for the Ryan White CARE Act increased by 6% between FY 2001 and FY 2002; it also grew by 6% between FY 2002 and FY 2003.24,52

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Public Financing and Delivery of Hiv/Aids Care: Securing the Legacy of Ryan White FIGURE D-5 Federal spending on HIV/AIDS care by program, FY 2002. SOURCE: Kaiser Family Foundation, Federal HIV/AIDS Spending: A Budget Chartbook, FY 2002, September 2003. FIGURE D-6 Federal spending on HIV/AIDS care by type (mandatory or discretionary), FY 2002. SOURCE: Kaiser Family Foundation, Federal HIV/AIDS Spending: A Budget Chartbook, FY 2002, September 2003.

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Public Financing and Delivery of Hiv/Aids Care: Securing the Legacy of Ryan White HOW IS HIV/AIDS CARE FINANCED: MAJOR SOURCES OF COVERAGE AND CARE There are several sources of coverage and care for people with HIV/AIDS, including insurance mechanisms such as Medicaid, Medicare, and private insurance, and publicly supported sources of care, such as the Ryan White CARE Act, the Veterans Health Administration, and community health centers. The availability and accessibility of these programs vary significantly across the country. Eligibility depends on a variety of factors—including an individual’s health/disease status, family status, income, and assets—each of which may vary for a given individual over time. An individual may be eligible for more than one program in some states or none in others, and not all coverage and care programs are available in every state. Some programs are specifically designed for people with HIV/AIDS, such as those funded by the Ryan White CARE Act and HIV-specific Medicaid waivers. Others are more general coverage or care programs that are important for people with HIV/AIDS, particularly Medicaid and Medicare. Major sources of coverage and care are described below, and summary descriptions, as well as challenges, are provided in Table D-1. Table D-2 provides state-by-state data on variation in eligibility and other key characteristics for select programs. Medicaid: Coverage for Low-Income Persons with HIV/AIDS Medicaid (also known as Title XIX of the Social Security Act) is the largest source of public financing for HIV/AIDS care in the United States. Created in 1965, Medicaid is a jointly funded, jointly administered federal–state health insurance program for certain low-income people who meet one or more of several categorical eligibility requirements, including disability. Because many people with HIV/AIDS are low income—or become low-income—and disabled, Medicaid is a vital source of coverage for people with HIV. The program is estimated to cover approximately 44% of people with HIV, including those with AIDS, who are receiving care.32 As people progress in their illness, it is more likely they will become eligible for Medicaid. Among persons living with AIDS, 55% are estimated to be enrolled in Medicaid. Medicaid is also estimated to cover the health costs of up to 90% of children with AIDS.53 Among those recently diagnosed with HIV (for whom coverage data were available), more than one-fifth (22%) were already covered by Medicaid.47 CMS estimates that approximately 218,000 persons with AIDS were Medicaid beneficiaries in FY 2002 (due to the methodological challenges described above, the actual number of Medicaid beneficiaries with HIV/

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Public Financing and Delivery of Hiv/Aids Care: Securing the Legacy of Ryan White However, HIPAA does not prohibit an insurer from charging a higher premium to an employer based on the health status of workers. Nondiscrimination protections do not apply to individual policies. Guaranteed issue. Insurers must offer all of their small-group policies to any small employer that wants to purchase coverage for their workers. While HIPAA does not extend guaranteed issuance to the nongroup market, it does require that each state have in place a policy that permits individuals losing coverage in the group market to get access to a non-group policy, either through an insurer or through another mechanism such as the state’s high-risk pool. Although HIPAA does not limit the premiums that can be charged, many states do. Guaranteed renewal. Insurers must allow all policies—group and individual—to be renewed. Those individuals who lose private group coverage in firms with more than 20 employees can continue that coverage for a specified period of time under the terms of the Consolidated Omnibus Budget Reconciliation Act of 1986 (P.L. 99-272), also known as COBRA. For those who are disabled, coverage can be extended for up to 29 months, designed to provide coverage until Medicare eligibility begins.86,90 Employers are required to notify workers who are eligible for COBRA coverage and workers have 60 days to exercise their benefits. People who exercise their COBRA benefits must pay a monthly premium. A number of states apply COBRA-like laws to group plans that are exempt from COBRA. Under a provision added to the Ryan White CARE Act in 1996, states can use Ryan White funds to help people with HIV/AIDS who are eligible for COBRA pay their premiums or buy private insurance. In addition, since 1993, Medicaid has given states the option to receive federal matching funds for the costs of COBRA premiums for individuals with incomes at or below 100 percent of the federal poverty level and countable resources under $4,000. Challenges Even with the protections offered by HIPAA, people with HIV face barriers to accessing private insurance, particularly in the individual insurance market. First, HIPAA does not include any limits on insurance rates and people can effectively be priced out of the market. Some states—most notably New York, New Jersey, Maine, and Vermont—have adopted community rating; others have utilized “rating bands” to limit the size of premium increases. Some states have also chosen to purchase new policies for people with HIV, using Ryan White CARE Act funds or broader programs that target low-income or uninsured people. Second, HIPAA does not

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Public Financing and Delivery of Hiv/Aids Care: Securing the Legacy of Ryan White improve access to the individual market for those without prior group coverage and, as noted above, HIV is generally considered an “uninsurable” condition by most carriers in the individual market. In addition, private insurance plans often have annual or lifetime caps on benefits, copayments and deductibles, and limits on services that may limit access in the private market. Finally, the insurance market and insurance reforms vary significantly by state, presenting different options and limitations across the country.85,86 Department of Veterans Affairs Acting as both insurer and provider of care, the VA is the largest single provider of comprehensive HIV/AIDS care in the United States. In FY 2001, the VA provided care to approximately 18,500 veterans with HIV/AIDS; since 1982, the agency has served a total of 50,000 persons with HIV/AIDS.91,92 In FY 2002, the VA spent $348 million on HIV/AIDS care, representing 4% of federal spending on HIV care.23,24 VA HIV/AIDS care is financed through annual appropriations out of general tax revenues. Any veteran of the armed services is eligible to receive HIV/AIDS care through the Veterans Health Administration. Under VA guidelines, private insurers must pay for care where appropriate, and veterans contribute based on a system of service-based ranking and means-testing screens. Disabilities, including HIV-related disability, must be service-related or a veteran must be low-income to receive subsidized care; otherwise, veterans must pay a share of costs. HIV/AIDS care is provided at the VA’s 163 hospitals, more than 850 primary care clinics, 137 nursing homes, 43 domiciliary centers, 73 home care programs, and 206 Vietnam Veteran Outreach Centers.91,92,93 The VA has an HIV/AIDS Coordinator at every VA hospital and the VA’s AIDS Service coordinates HIV/AIDS care throughout the VA system. In addition to providing care, the VA provides HIV prevention services to veterans, providing approximately 50,000 HIV tests per year, and conducts clinical research on HIV/AIDS.92 Not all veterans, however, live near a VA facility, which could inhibit access. Community Health Centers and Other Safety Net Providers Those who are uninsured and underinsured also rely on an array of other safety net providers for care. These include community and migrant health centers, public hospitals, private “free clinics,” and individual health care providers who offer free care. Services vary across these different types of providers. Community health centers serve a large number of people living with

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Public Financing and Delivery of Hiv/Aids Care: Securing the Legacy of Ryan White HIV, with both CARE Act dollars and community health center grant funding.4 They can also directly bill Medicaid for eligible beneficiaries. In 2000, community health centers provided almost 250,000 HIV-related encounters to more than 48,000 people. In addition, they provided more than 270,000 HIV tests to approximately 231,000 people.94 Most of these safety net programs are funded through discretionary grants, and are dependent upon annual appropriations for funding. As such, funding does not necessarily match the need for or cost of care. In addition, people with HIV/AIDS may not always have access to experienced HIV providers through these mechanisms. Other Sources of Coverage and Care While there are several other mechanisms available for coverage and care, they provide access to only limited numbers of people with HIV/AIDS. These include high-risk pools, designed for people with significant health risks who have been denied coverage in the private market85,86,95,96,97 and pharmacy assistance programs offered by states98,99,100 and pharmaceutical manufacturers101 to low-income individuals (with varying other eligibility requirements). Twenty-nine states currently operate high-risk pools95 and 14 states have state pharmacy assistance programs available to non-seniors, either through subsidies or discounts.99,100 Finally, the Department of Defense provides care to a small number of active duty service personnel69 and the federal government, as an employer, provides care to federal employees with HIV/AIDS through the Federal Employee Health Benefits program.24,51 POLICY CHALLENGES The patchwork of financing for HIV/AIDS care presents barriers to accessing care. As policymakers search for ways to improve access, they face several important challenges, many of which cut across the multiple sources of financing and care, including Reaching Those Not in Care A significant proportion (42% to 59%) of people living with HIV/AIDS are not in regular care. While some may not know their HIV status, many face financial and other barriers to access. More research is needed to identify the barriers to care. Outreach is also needed both to help bring people who know their HIV status into care early and to encourage others to get tested and learn their status. This will require better linkages between HIV testing and treatment facilities and services.

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Public Financing and Delivery of Hiv/Aids Care: Securing the Legacy of Ryan White Enhancing Care for Those Who Are Uninsured or Publicly Insured, Minority Americans, and Women Recent data indicate that although quality of HIV care has improved over time, there are still differences in quality and access by insurance status, race/ethnicity, and sex. These findings call for further research to understand better the underlying causes of these differences and identify ways to enhance access to and quality of care for different populations. Improving Insurance Coverage Current eligibility rules for Medicaid and Medicare make it difficult for many people with HIV to gain coverage before their health status worsens and they are disabled. Most people with HIV become eligible for Medicaid through SSI, after they are disabled, yet national treatment guidelines call for early access to treatment to prevent or delay disability (this eligibility limitation also present barriers to Medicare access, through SSDI). A few states are attempting to address this through Medicaid 1115 waivers and provisions of the TWWIIA, but most will need to continue to rely on discretionary grant funding, particularly the AIDS Drug Assistance Program and other parts of the CARE Act, to do so. Medicaid and Medicare eligibility may also be jeopardized for those beneficiaries with HIV who have benefited from new treatments and wish to enter or re-enter the workforce. The BBA and TWWIIA each had provisions designed to address some of these concerns, but challenges still remain and few states have exercised these options. The 29-month waiting period for Medicare eligibility also presents a challenge to coverage for people with HIV/AIDS. Finally, the current lack of a prescription drug benefit in the Medicare program and potential limitations of the new Medicare prescription drug law could present new challenges for people with HIV/AIDS. Reducing Variation in Access Across States Many of the programs that provide care to people with HIV have significant variation in eligibility, benefits, and other program components across states. This is particularly true for the Ryan White CARE Act and Medicaid, two of the most important sources of financing for HIV care. As a result, people with HIV face highly uneven access to coverage across the country. Enhancing Coordination Across Programs There is limited coordination across the multiple funding streams that finance HIV care. Yet these programs greatly impact one another and the

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Public Financing and Delivery of Hiv/Aids Care: Securing the Legacy of Ryan White level of access available to people with HIV across the country. More information is needed to understand how these financing systems interact and how they can better work together to increase program efficiency and enhance access to care for people with HIV. A recently proposed “HIV/AIDS Integrated Services Project,” a joint initiative of HRSA, CMS, and CDC, will explore ways to blend federal funding streams and better coordinate care for people with HIV/AIDS on a demonstration basis; however, when exploring options to blend federal funding streams, it is important to maintain the level of individual entitlement to coverage for basic health services that each Medicaid or Medicare beneficiary now has. Addressing the Cost of Prescription Drugs Prescription drugs are one of the fastest growing components of health care spending. They also represent a key component of HIV/AIDS care. As such, rising prescription drug costs will continue to present challenges to people with HIV and the programs that provide for their care, especially Medicaid and the AIDS Drug Assistance Program, which have already seen sharp rises in expenditures for AIDS drugs. As a result, some state Medicaid programs and ADAPs have taken steps to control drug expenditures, which could limit access (e.g, Medicaid prescription drug limits and cost controls, ADAP waiting lists). Analysis indicating that Medicaid, the largest public purchaser of HIV/AIDS drugs, is paying higher prices for these drugs than other government purchasers also presents challenges for policymakers seeking to balance cost containment and access. It is also unclear how incentives in the new Medicare prescription drug law will impact drug prices over the long-term, particularly for breakthrough drugs for which there is little competition, and if the new law will affect the price paid for drugs by Medicaid (as it stands to lose purchasing power after prescription drug benefits for dual eligibles are transferred to Medicare in 2006). Financing Prevention Services Current care financing mechanisms do not offer clear incentives to provide prevention services in the clinical setting. Yet an estimated 40,000 people still become infected with HIV each year in the United States, indicating the importance of continued prevention efforts targeting those at risk. In addition, people already infected with HIV need access to prevention services to help prevent the further spread of HIV, which is the focus of the CDC’s Serostatus Approach to Fighting the Epidemic (SAFE) and the CDC’s new prevention initiative, Advancing HIV Prevention. A recent study showing that a significant proportion of people with HIV are already covered by Medicaid or other public payers at time of diagnosis underscores

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Public Financing and Delivery of Hiv/Aids Care: Securing the Legacy of Ryan White the important role public payers can play in the delivery of prevention services within the care setting.47 These policy issues are often heightened in the context of the HIV/AIDS epidemic due to shifting demographics and rapidly changing clinical standards of care. People with HIV/AIDS are increasingly likely to be members of already disadvantaged groups who are more likely to rely on the public sector for financing their care and face historical barriers to access. African Americans and Latinos, for example, represent the majority of new HIV infections and women now comprise almost a third (30%) of new HIV infections in the United States; most women newly infected are minority women.37 In addition, HIV care has grown increasingly complex, requiring rapid dissemination of new standards to diverse groups of providers. Moreover, to support receipt of and adherence to complex treatment and help them navigate the financing and health care delivery systems, people with HIV/AIDS need access to a comprehensive continuum of care and experienced providers. Yet some needed services, such as case management or prevention, are not always financed through the same mechanism as medical care or may not be financed at all. Together, these aspects of the epidemic mean that policymakers will be faced with continued challenges to financing HIV-related care in the future, particularly as the number of people with HIV/AIDS continues to grow, as do health care costs. These challenges may be exacerbated during tough economic times. CONCLUSION Despite the existence of multiple sources of financing, many people with HIV/AIDS are not in regular care and a significant proportion does not know they are infected. Even among those who are in care, numerous barriers may impede their access to needed treatments. The high cost of care poses challenges for individuals and caregivers, as well as state and federal governments. Eligibility rules create barriers to coverage and care. Existing programs vary significantly across the states and are often poorly coordinated. As the HIV epidemic continues to shift towards those who have always had a more difficult task gaining access to and paying for care, these policy challenges are certain to grow. ENDNOTES 1.   This paper is an update of: Kates, J. and Sorian, R., Financing HIV/AIDS Care: A Quilt with Many Holes, prepared for the Kaiser Family Foundation, October 2000. 2.   Institute of Medicine, No Time to Lose: Getting More for HIV Prevention, 2000. 3.   Presidential Advisory Council on HIV/AIDS, AIDS: No Time to Spare: The Final Report to the President of the United States, 2000.

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Public Financing and Delivery of Hiv/Aids Care: Securing the Legacy of Ryan White 4.   Levi, J. and Kates, J., “HIV: Challenging the Health Care Delivery System,” American Journal of Public Health, Vol. 90, No. 7, 2000. 5.   Kates, J., Sorian, R., Crowley, C., Summers, T., “Critical Policy Challenges in the Third Decade of the HIV/AIDS Epidemic,” American Journal of Public Health, Vol. 92, No.7, July 2002. 6.   Department of Health and Human Services/Kaiser Family Foundation, Guidelines for the Use of Antiretroviral Agents in HIV-infected Adults and Adolescents, February 2002, http://www.hivatis.org. 7.   Fleming, P., et al., HIV Prevalence in the United States, 2000, 9th Conference on Retroviruses and Opportunistic Infections, Abstract #11, Oral Abstract Session 5, February 2002. 8.   It is estimated that between 19% and 33% of those infected with HIV in the United States do not know their status. See Fleming, P. et al., note #7. 9.   Scitovsky, A. and Rice, D., “Estimates of the Direct and Indirect Costs of Acquired Immunodeficiency Syndrome in the United States, 1985, 1986, 1991,” Public Health Reports, Vol. 102, No. 1, 1987. 10.   Sisk, J., “The Costs of AIDS: A Review of The Estimates,” Health Affairs, Summer 1987. 11.   Green, J. and Arno, P., “The ‘Medicaidization’ of AIDS: Trends in the Financing of HIV-Related Medical Care,” Journal of the American Medical Association, Vol. 264, No. 10, 1990. 12.   Arno, P. and Feiden, K., Against the Odds: The Story of AIDS Drug Development, Politics, and Profits, Harper Collins, New York, 1992. 13.   Centers for Disease Control and Prevention, HIV/AIDS Surveillance Report, Vol. 13, No. 2, 2002. 14.   Centers for Disease Control and Prevention, “Update: AIDS—United States, 2000,” MMWR, Vol. 51, No. 27, July 2002. 15.   This is based on average wholesale price (AWP). The price Medicaid pays for prescription drugs includes a rebate off the average manufacturers price (AMP), which itself is less than the AWP. The rebate received is defined as the greater of 15.1% of AMP or AMP minus the Best Price (BP) for brand name drugs. The rebate for generic drugs is 11% of AMP. 16.   Bartlett, J., Medical Management of HIV Infection, 2001-2002 Edition, 2001. 17.   Kahn, J., Haile, B., Kates, J., Chang, S., “Health and Federal Budgetary Effects of Increasing Access to Antiretroviral Medications for HIV by Expanding Medicaid,” American Journal of Public Health, Vol. 91, No. 9, September 2001. 18.   This represents an average estimate across all payers and all HIV disease stages, based on several studies. Personal communication, James G. Kahn, January 2003. 19.   Bozzette, S., et al., “The Care of HIV Infected Adults in the United States,” New England Journal of Medicine, Vol. 339. No. 26, December 1998. 20.   Bozzette, S., et al., “Expenditures for the Care of HIV-Infected Patients in the Era of Highly Active Antiretroviral Therapy,” New England Journal of Medicine, Vo. 334, No. 11, March 2001. 21.   University of Alabama (UAB), Press Release: UAB Announces Results of First HIV Patient Care Cost Analysis, July 2002. In the UAB study, the average annual cost of patient care ranged from $14,000 for those at early stage HIV infection to $34,000 for those with advanced-stage disease. 22.   Karon, J. et al., “HIV in the United States at the Turn of the Century: An Epidemic in Transition,” American Journal of Public Health, Vol. 91, No. 7, July 2001. 23.   Kaiser Family Foundation, Federal HIV/AIDS Spending: A Budget Chartbook, Fiscal Year 2002, September 2003.

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Public Financing and Delivery of Hiv/Aids Care: Securing the Legacy of Ryan White 24.   Alagiri, P., Summers, T., Kates, J., Trends in U.S. Spending on HIV/AIDS, Kaiser Family Foundation, July 2002. 25.   National Institute for Health Care Management Foundation, Prescription Drug Expenditures in 2001: Another Year of Escalating Costs, Revised May 2002. 26.   Kaiser Family Foundation, unpublished data. 27.   Centers for Medicare & Medicaid Services, Office of the Actuary, National Health Statistics Group, National Health Expenditures, 2002 (www.cms.hhs.gov/statistics/nhe/historical/ (Accessed January 18, 2003). 28.   GAO, HIV/AIDS Drugs: Funding Implications of New Combination Therapies for Federal and State Programs, GAO/HEHS-99-2, 1998. 29.   Freedberg, et al., “The Cost Effectiveness of Combination Antiretroviral Therapy For HIV Disease,” New England Journal of Medicine, Vol. 344, No. 11, March 2001. 30.   Shackman, et. al., “Cost-Effectiveness of Earlier Initiation of Antiretroviral Therapy for Uninsured HIV-Infected Adults,” American Journal of Public Health, Vol. 91, No. 9, September 2001. 31.   Data are for those ages 18 and older. 32.   Fleishman, J., Personal communication, Analysis of HCSUS Data, January 2002. 33.   Nakashima AK. “Who Will Pay for HIV Treatment? Health Insurance Status of HIV-Infected Persons.” In: Proceedings of the 1997 Meeting of the Infectious Diseases Society of America; September 13-16, 1997; San Francisco, CA. Abstract 293. 34.   Kaiser Family Foundation, State Health Facts Online, Health Coverage & Uninsured, Distribution of Adults, 19-64 by Insurance Status, 2000-2001, www.statehealthfacts.org (Accessed February 7, 2004). 35.   A small number may have other forms of coverage, such as private coverage. 36.   HIVnet, HIV Resource Utilization Data Coordinating Center (DCC) project, July 2002. Agency for Healthcare Research and Quality, Rockville, MD. www.ahrq.gov/data/HIVnet.htm (Accessed January 18, 2003). Data are for those ages 18 and older. 37.   Centers for Disease Control and Prevention, HIV/AIDS Update: A Glance at the Epidemic, 2002. 38.   Shapiro, et al., “Variations in the Care of HIV-Infected Adults in the United States,” Journal of the American Medical Association, Vol. 281, No. 24, June 1999. 39.   Sambamoorthi, U., et. al., “Use of Protease Inhibitors and Non-Nucleoside Reverse Transcriptase Inhibitors Among Medicaid Beneficiaries with AIDS,” American Journal of Public Health, Vol. 91, No. 9, September 2001. 40.   Health Resources and Services Administration, Press Release: HRSA Welcomes HIV/AIDS Health Care Providers to Biennial Conference; Studies Find that While Patients in Federal Programs are Mostly Minorities, Those Groups Still Face Barriers to Accessing HIV/AIDS Care, August 2002. 41.   Keruly, J., Conviser, R, and Moore, R., “Association of Medical Insurance and Other Factors With Receipt of Antiretroviral Therapy,” American Journal of Public Health, Vol. 92, No. 5, May 2002. 42.   Cunningham, W. et al., “Prevalence and Predictors of Highly Active Antiretroviral Therapy Use in Patients with HIV Infection in the United States,” Journal of Acquired Immune Deficiency Syndromes, Vol. 25, No. 2, October 2000. 43.   Campsmith, M., Burgess, D., “Race/Ethnicity and Gender Differences in Late HIV Testing—Results from a Supplemental HIV/AIDS Surveillance Project,” HIV Prevention Conference, August 2001. 44.   Neal, J., Fleming, P., “Frequency and Predictors of Late HIV Diagnosis in the United States, 1994 through 1999,” 9th Conference on Retroviruses and Opportunistic Infections, Abstract #474M, February 2002.

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Public Financing and Delivery of Hiv/Aids Care: Securing the Legacy of Ryan White 45.   Cunningham, W., et al., “Delayed Medical Care After Diagnosis in a U.S. National Probability Sample of Persons Infected With Human Immunodeficiency Virus,” Archives of Internal Medicine, Vol. 160, September 2000. 46.   It is important to note that the HCSUS analysis of variation in care by insurance status included analysis of those covered by Medicaid only. Those who were dual Medicaid/Medicare beneficiaries were counted in the Medicare category. See, Shapiro, et al., 1999 note 38. 47.   Kates, J., Levi, J., Neal, J., Gallagher, K., “Learning More About the HIV-Infected Population Not IN Care in the United States: Using Public Health Surveillance Data to Inform Current Policy Challenges in Enhancing Access,” Poster TuPeG 5690, XIV International AIDS Conference, Barcelona, Spain, July 2002. Data are for those ages 13 and older. 48.   It is important to note that the insurance profile of those for whom such data are not available may differ from the insurance profile of those for whom data are available. 49.   National Alliance of State and Territorial AIDS Directors/Kaiser Family Foundation/AIDS Treatment Data Network, National ADAP Monitoring Project, Annual Report, April 2003. 50.   Centers for Medicare &Medicaid Services, Office of the Actuary, personal communication, February 2003. 51.   Department of Health and Human Services, Office of Budget, Total Federal Government Spending (by Function), February 2004. 52.   U.S. Congress, Consolidated Omnibus Bill & Conference Report, February 2003. 53.   Centers for Medicare & Medicaid Services, Fact Sheet: Medicaid and Acquired Immunodeficiency Syndrome (AIDS) and Human Immunodeficiency Virus (HIV) Infection, January 2002. 54.   Kaiser Family Foundation, Medicaid and HIV/AIDS Policy: A Basic Primer, 1999. 55.   Kaiser Commission on Medicaid and the Uninsured, Medicaid: A Primer, March 2001. 56.   Kaiser Commission on Medicaid and the Uninsured, Fact Sheet: Medicaid’s Role for the Disabled Population Under Age 65, April 2001. 57.   Analysis prepared for the Kaiser Commission on Medicaid and the Uninsured by Jeff Crowley, Georgetown University, 2003. 58.   National Association of State Medicaid Directors, Aged, Blind, and Disabled Medicaid Eligibility Survey, www.nasmd.org/eligibility/optional.asp (Accessed June 2003). 59.   FDA-approved prescription drugs. 60.   Centers for Medicare & Medicaid Services, Personal communication, August 2002. 61.   Kaiser Commission on Medicaid and the Uninsured, Medicaid Outpatient Prescription Drug Benefits: Findings from a National Survey, 2003, December 2003. 62.   Kaiser Family Foundation, State Health Facts Online, HIV/AIDS, Status of State Medicaid Expansion Efforts for People with HIV, www.statehealthfacts.org (Accessed January 18, 2003). 63.   The Breast and Cervical Cancer Prevention and Treatment Act of 2000 (P.L. 106-354). 64.   Kaiser Commission on Medicaid and the Uninsured, Medicaid Related Provisions in the Ticket To Work and Work Incentives Improvement Act of 1999, 2000. 65.   Kaiser Commission on Medicaid and the Uninsured, The Medicaid Resource Book, July 2002. 66.   Levi, J., Hidalgo, J., Wyatt, S., “The Impact of State-by-State Variability in Entitlement Programs on the Ryan White Care Act and Access to Services for Underserved Populations,” Prepared for the Health Resources and Services Administration, March 2000. 67.   Rowland, D. and Tallon, J., Medicaid: Lessons From a Decade, 2002. 68.   National Association of People with AIDS, Building Strong Medicaid Managed Care Programs: A Guide to Help Consumer Advocates Participate in Strengthening HIV/AIDS Provisions in Managed Care Contracts, 2000.

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Public Financing and Delivery of Hiv/Aids Care: Securing the Legacy of Ryan White 69.   Department of Health and Human Services, Office of Inspector General, Cost Containment of Medicaid HIV/AIDS Drug Expenditures, OEI-05-99-00611, July 2001. 70.   Kaiser Commission on Medicaid and the Uninsured, State Budgets Under Stress: How are States Planning to Reduce The Growth in Medicaid Costs?, July 2002. 71.   Kaiser Commission on Medicaid and the Uninsured, Medicaid Spending Growth: A 50 State Update for FY 2003, December 2002. 72.   Centers for Medicare & Medicaid Services, Office of the Actuary, Personal communication, September 2002. 73.   Schietinger, H. and Schecter, C., Medical Coverage for Medicare Beneficiaries with HIV/AIDS: Issues and Implications, Academy for Educational Development, 1998. 74.   Kaiser Commission on Medicaid and the Uninsured, Fact Sheet: Dual Eligibles: Medicaid’s Role for Low-Income Medicare Beneficiaries, January 2004. 75.   Kaiser Family Foundation, Fact Sheet: Medicare at a Glance, April 2003. 76.   Kaiser Family Foundation, Prescription Drug Coverage for Medicare Beneficiaries: An Overview of the Medicare Prescription Drug, Improvement, and Modernization Act of 2003 (Public Law 108-173). Prepared by Health Policy Alternatives, Inc., January 2004. 77.   Kaiser Family Foundation, Medicare+Choice Withdrawals: Understanding Key Factors, June 2002. 78.   Kaiser Family Foundation, Medicare+Choice Fact Sheet, April 2003. 79.   Kaiser Commission on Medicaid and the Uninsured, Implications of the New Medicare Law for Dual Eligibles: 10 Key Questions and Answers, December 2003. 80.   Health Resources and Services Administration, HIV/AIDS Bureau website, Care Act Overview, http://hab.hrsa.gov/programs/factsheets/programfact.htm (Accessed January 18, 2003). 81.   National Alliance of State and Territorial AIDS Directors, FY 2002 Ryan White CARE ACT Title II HIV Care Grants (Proposed), February 2002. 82.   Health Resources and Services Administration, HIV/AIDS Bureau website, http://hab.hrsa.gov (Accessed January 18, 2003). 83.   National Alliance of State and Territorial AIDS Directors, ADAP Watch, September 2003. 84.   National Alliance of State and Territorial AIDS Directors/Kaiser Family Foundation/AIDS Treatment Data Network, Issue Brief: Trends in Opportunistic Infection Drug Coverage and Spending, February 2003. 85.   Kaiser Family Foundation, How Accessible is Individual Health Insurance for Consumers in Less-Than-Perfect Health?, June 2001. 86.   Levi, J,. et al., Can Access to the Private Individual Insurance Market be Increased for People Living With HIV?, George Washington University Medical Center, 1999. 87.   Kaiser Family Foundation and HRET, 2002 Employer Health Benefits Survey, September 2002. 88.   Pollitz, K. et al., “Early Experience with ‘New Federalism’ in Health Insurance Regulation,” Health Affairs, July/August 2000. 89.   Kaiser Family Foundation, How Private Insurance Works: A Primer, April 2002. 90.   U.S. Department of Labor, Pension and Welfare Benefits Administration, Health Benefits Under the Consolidated Omnibus Budget Reconciliation Act, COBRA, www.dol.gov/pwba/pdf/cobra99.pdf. 91.   Department of Veterans Affairs, Veterans Health Administration, The VA HIV Prevention Handbook: A Guide for Clinicians, January 2002. 92.   Veterans Administration, Public Health Strategic Health Care Group, HIV/AIDS Program Fact Sheet, 2002. 93.   Veterans Health Administration, Overview, Department of Veterans Affairs, August 2002.

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Public Financing and Delivery of Hiv/Aids Care: Securing the Legacy of Ryan White 94.   Health Resources and Services Administration, Bureau of Primary Health Care, 2000 Uniform Data System, data extracted in August 2002. 95.   Kaiser Family Foundation, State Health Facts Online, Managed Care and Health Insurance, State Sponsored High Risk Insurance Pools, 2001, www.statehealthfacts.org (Accessed January 18, 2003). 96.   Communicating for Agriculture & the Self Employed, Comprehensive Health Insurance for High-Risk Individuals: A State-by-State Analysis, Fifteenth Edition, 2001/2002, 2001. 97.   Achman, L., Chollet, D., Insuring the Uninsurable: An Overview of State High-Risk Health Insurance Pools, The Commonwealth Fund, August 2001. 98.   GAO, State Pharmacy Programs: Assistance Designed to Target Coverage and Stretch Budgets, GAO/HEHS-00-162, 2000. 99.   Kaiser Family Foundation, State Health Facts Online, Medicare, State Pharmaceutical Assistance Programs, 2001, www.statehealthfacts.org (Accessed January 18, 2003). 100.   National Conference of State Legislatures, State Pharmaceutical Assistance Programs, January 2003, www.ncsl.org/programs/health/drugaid.htm (Accessed January 18, 2003). 101.   Pharmaceutical Research and Manufacturers of America, Directory of Prescription Drug Patient Assistance Programs, 2002.