Public Financing and Delivery of HIV/AIDS Care Securing the Legacy of Ryan White (2005) / Chapter Skim
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Appendix D: Financing HIV/AIDS Care: A Quilt With Many Holes
Appendix D: Financing HIV/AIDS Care: A Quilt With Many Holes
Pages 268-312
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From page 268... ...
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.
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From page 269... ...
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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From page 270... ...
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)
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From page 271... ...
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.
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From page 272... ...
272 PUBLIC FINANCING AND DELIVERY OF HIV/AIDS CARE Medicaid 44% None 20% Medicare 6% Private 31% FIGURE D-2 Estimated insurance coverage of people living with HIV/AIDS in care, United States, 1996. Includes those with other coverage, primarily Medicare.
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From page 273... ...
APPENDIX D 273 Medicaid* Medicare Private None 32% 44% 39% 50% 59% 61% 7% 6% 6% 3% 44% 5% 31% 23% 36% 3% 14% 14% 20% 22% 24% 17% 19% 21% All Whites African Latinos Men Women Americans FIGURE D-3 Estimated insurance coverage of people living with HIV/AIDS in care by race/ethnicity and sex, United States, 1996.
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From page 274... ...
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.
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From page 275... ...
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]
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From page 276... ...
.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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From page 277... ...
SOURCE: Kaiser Family Foundation, Federal HIV/AIDS Spending: A Budget Chartbook, FY 2002, September 2003. 28% Discretionary 72% Mandatory FIGURE D-6 Federal spending on HIV/AIDS care by type (mandatory or discretionary)
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From page 278... ...
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.
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From page 279... ...
Thirty-six states offer this optional program, 35 of which make it available to those who are disabled.57 Given the high costs of HIV care, the medically needy program can be an important option available to people with HIV/AIDS.54,57 The Omnibus Budget Reconciliation Act of 1986 (OBRA 86) gave states the option to provide full Medicaid benefits to all aged and disabled persons with incomes up to 100% of the federal poverty level (FPL)
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From page 280... ...
280 PUBLIC FINANCING AND DELIVERY OF HIV/AIDS CARE TABLE D-1 Major Sources of Coverage and Care for HIV/AIDS Financing, with Benefits and Challenges Source of Coverage/Care (funding source) Eligibility Benefits Medicaid Individuals must have income and assets Mandatory services (Federal and at or below a state's standard and meet include state categorical eligibility criteria Inpatient/outpatient funding)
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From page 281... ...
APPENDIX D 281 Challenges Eligibility "Catch-22" -- SSI eligibility based on being disabled although therapies exist that can prevent disability, early care recommended Returning to work/entering workforce makes continuation of coverage uncertain Variation across states in eligibility, benefits, and other aspects of program Access to experienced HIV providers may be issue, particularly in Medicaid managed care context Need to ensure adequate capitation/reimbursement rates and services; historically low payment rates for providers and institutions HIV/AIDS drug prices higher than for other government purchasers Eligibility "Catch-22" -- SSDI eligibility based on being disabled although therapies exist that can prevent disability, early care recommended Must also have sufficient work history to be eligible 29-month waiting period from determination of SSDI eligibility before coverage begins High cost-sharing requirements No cap on out-of-pocket spending Lack of outpatient prescription drug benefit currently; prescription drug coverage benefit as of January 1, 2006 Prescription drug benefit may present new challenges, particularly to the dually eligible, for whom Medicaid prescription drug benefits will end. Challenges may include difficulty navigating the enrollment process; the potential for temporary lapse in coverage; variation and limitation in formularies; out-of-pocket expenses, which may be higher than those paid under Medicaid; and denial of prescription drugs if co-payment cannot be met continued
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From page 282... ...
Most people with HIV/AIDS who are Physician visits privately insured obtain group coverage Prescription drugs through employer Lab tests, x-rays, and durable medical equipment Inpatient and outpatient mental health services Individual plans vary from policy to policy Department of Any veteran of the armed services, Outpatient, inpatient, Veterans Affairs including disabled veterans long-term care, (Federal prescription drugs, funding) and range of other services VA operates AIDS service for veterans with HIV/AIDS Community Varies by type of provider Services vary by type Health Centers Primarily serve low-income individuals, of provider but can and Other including uninsured or underinsured include Safety Net individuals and families; also serve Physician/clinic visits Providers many Medicaid beneficiaries Inpatient/outpatient (Federal, state, hospital care and local Emergency care funding)
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From page 283... ...
APPENDIX D 283 Challenges Discretionary grant program dependent on annual appropriations by Congress and in some cases, states and municipalities Funding does not necessarily match need for or cost of care Variation in programs and services across the country More CARE dollars needed to fill gaps in jurisdictions with less generous access to other programs Allocation of most CARE Act dollars based on AIDS cases, not HIV infection and may not reflect current burden and recent trends Medical underwriting in the individual market may lead to denial of or limits on coverage -- HIV generally considered uninsurable condition Premiums for individual policies often too high to afford Annual or lifetime caps on benefits may limit care for people with HIV/AIDS and other chronic conditions Limits may be placed on specific services (e.g., number of prescriptions filled, number of physician visits) May be other co-pays or deductibles Disability must be service-related and/or veteran must be poor to receive subsidized care, otherwise must pay share of costs Not all veterans live near VA facilities Most are discretionary grant funded and dependent on annual appropriations by Congress, states, and municipalities Funding does not necessarily match need for or cost of services Access to experienced HIV providers may be issue
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From page 284... ...
284 PUBLIC FINANCING AND DELIVERY OF HIV/AIDS CARE TABLE D-2 State Variation in Insurance Coverage and Care Programs for People with HIV/AIDS: Select Programs, Both HIV-Specific and General HIV Medically Specific Pregnant Needy Prescription Waivers: SSI Women Program Limitations 1115, Eligibility Eligibility, Eligibility, 209B per Month TWWIIA, State/ %FPL, %FPL, %FPL States, # per month HCBS, Territory 20001 20001 20011,2 20021,2 20033 20024,5 United States -- -- 36 states 11 14 states 20 states (Total number (35 for states (17 of states) disabled)
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APPENDIX D 285 State Pharmacy Assistance Programs for Non Seniors- Ryan Subsidy State Number White (S) & Sponsored of Drugs Waiting Health Discount High-Risk Eligi- on List or Insurance (D)
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From page 286... ...
286 PUBLIC FINANCING AND DELIVERY OF HIV/AIDS CARE TABLE D-2 Continued HIV Medically Specific Pregnant Needy Prescription Waivers: SSI Women Program Limitations 1115, Eligibility Eligibility, Eligibility, 209B per Month TWWIIA, State/ %FPL, %FPL, %FPL States, # per month HCBS, Territory 20001 20001 20011,2 20021,2 20033 20024,5 Kentucky 74 185 Yes (30) -- -- - Louisiana 74 133 Yes (14)
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APPENDIX D 287 State Pharmacy Assistance Programs for Non Seniors- Ryan Subsidy State Number White (S) & Sponsored of Drugs Waiting Health Discount High-Risk Eligi- on List or Insurance (D)
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The Tennessee Comprehensive Health Insurance Pool ceased operations on June 30, 1996.
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APPENDIX D 289 State Pharmacy Assistance Programs for Non Seniors- Ryan Subsidy State Number White (S) & Sponsored of Drugs Waiting Health Discount High-Risk Eligi- on List or Insurance (D)
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. 6 National Alliance of State and Territorial AIDS Directors/Kaiser Family Foundation/ AIDS Treatment Data Network, National ADAP Monitoring Project, Annual Report, April 2003.
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While analyses have shown that additional, non-Medicaid savings will accrue through such expansions (e.g., to SSI, SSDI, Medicare, and the Ryan White AIDS Drug Assistance Program) , these savings cannot be included in budget neutrality calculations under current policy.17,30 · The Ticket to Work/Work Incentives Improvement Act of 1999.
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From page 292... ...
292 PUBLIC FINANCING AND DELIVERY OF HIV/AIDS CARE The Ticket to Work/Work Incentives Improvement Act (TWWIIA) included an option for states to launch demonstration projects to provide Medicaid to workers with potentially severe disabilities, including HIV/AIDS, who are not yet disabled but whose health conditions could be expected to cause disability.
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From page 293... ...
These strategies may limit beneficiary access to Medicaid, including for beneficiaries with HIV/AIDS, and limit the revenue flows to experienced HIV providers, including individual practitioners, clinics, and hospitals.70,71 Medicare: Coverage for Disabled and Elderly Persons with HIV/AIDS Also created in 1965 and administered by CMS, Medicare (Title XVIII of the Social Security Act) is the nation's federal health insurance program for the elderly and disabled.
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From page 294... ...
In addition, federal law requires a 5-month waiting period after disability determination to receive SSDI benefits and then a 24-month waiting period before an SSDI beneficiary can join Medicare, resulting in a total of 29 months before receipt of health benefits.73 For those Medicare beneficiaries with HIV who are low income, Medicaid coverage is critical, filling in the gaps in coverage for these beneficiaries. Depending on income, Medicaid provides varying levels of coverage to low-income Medicare beneficiaries including payment of premiums, some cost-sharing, and coverage of services during the 29-month waiting period.
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APPENDIX D 295 coverage to the dually eligible will be eliminated when the new law goes into effect in 2006 (see discussion below)
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From page 296... ...
For example, people with HIV/AIDS who cannot afford prescription drugs have had to rely either on Medicaid or the AIDS Drug Assistance Program of the Ryan White CARE Act in order to receive medications. Others may receive prescription drug benefits by purchasing a private "Medigap" policy or by enrolling in a Medicare managed care plan, although these benefits are severely limited and the recent withdrawals, service area reductions, and benefit limitations by Medicare plans in many markets have affected Medicare beneficiary access.77,78 While the recently enacted Medicare legislation adds a drug benefit for the more than 40 million seniors and people with disabilities who have Medicare, a number of questions and concerns have been raised about certain provisions of the legislation, its implementation, and its costs, including particular concerns for dual eligibles:74,79 · Range of drugs offered.
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From page 297... ...
Ryan White CARE Act: A Payer of Last Resort for People with HIV/AIDS First enacted in 1990 and reauthorized in both 1996 and 2000, the Ryan White CARE Act provides funding to cities, states, and other public and private nonprofit entities to develop, coordinate, and operate systems for the delivery of health and support services to medically underserved individuals and families affected by HIV disease. The Ryan White CARE Act is administered by the Health Resources and Services Administration (HRSA)
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From page 298... ...
For example, the number of drugs covered by state AIDS Drug Assistance Programs varies from a low of 18 to a high of 463. Another reason for variation across states is that Ryan White dollars are sometimes inadequate to fill the gaps in states with less generous Medicaid or other programs.66 Eligibility CARE Act services are available to uninsured or underinsured individuals and families living with HIV/AIDS, and eligibility for services is determined by states and municipalities.
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From page 299... ...
ADAPs began serving clients in 1987, when Congress first appropriated funds to help states purchase AZT, the only approved antitretroviral at that time. In 1990, Congress incorporated ADAP into Title II of the Ryan White CARE Act and, since 1995, Congress has specifically earmarked funding for ADAP, and states are permitted to spend some of their general Title II funds to support these programs.
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The 2000 reauthorization of the CARE Act calls for the incorporation of reported HIV cases into the Title I and II formulas as early as FY 2005, if accurate and reliable data exist (a recently released Institute of Medicine report found, however, that HIV case reporting is not yet reliable enough for this purpose. See: Institute of Medicine, Measuring What Matters: Allocation, Planning, and Quality Assessment for the Ryan White CARE Act, 2004)
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From page 301... ...
.85 Those who have limits in their private coverage may need to rely on safety net programs, such as the Ryan White CARE Act, to fill the gaps. Some states have implemented insurance reforms to enhance access to the individual insurance market, although these reforms vary and have different implications for people with HIV.85,86 If recent trends indicating reductions in employer-sponsored health insurance coverage continue,87 people with HIV/AIDS may increasingly need to rely on other safety net programs for care.
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From page 302... ...
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.
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From page 303... ...
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.
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From page 304... ...
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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From page 305... ...
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.
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From page 306... ...
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.
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From page 307... ...
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.
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From page 308... ...
, 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.
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From page 309... ...
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.
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From page 310... ...
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.
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From page 311... ...
81. National Alliance of State and Territorial AIDS Directors, FY 2002 Ryan White CARE ACT Title II HIV Care Grants (Proposed)
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From page 312... ...
97. Achman, L., Chollet, D., Insuring the Uninsurable: An Overview of State High-Risk Health Insurance Pools, The Commonwealth Fund, August 2001.
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