4
Barriers to HIV Care

As noted in Chapter 3, people with HIV disease access HIV care through a number of federal programs (e.g., Medicaid, Medicare, and the Ryan White Comprehensive AIDS Resource Emergency [CARE] Act [CARE Act]), private insurance, or a combination of these programs. There is little question that these programs have provided coverage for services that have made the difference between extended life and rapid death for many with HIV/AIDS. However, several finance-related barriers associated with these sources of coverage encumber the ability of the system to respond to the HIV epidemic. In the next section, the barriers associated with each source of coverage are reviewed, and concluding observations are presented.

PRIVATE INSURANCE PROGRAMS

People with HIV/AIDS in the private insurance market face a number of obstacles in accessing and maintaining care. Even with the protections offered by the Health Insurance Portability and Accountability Act of 1996 (HIPAA), people with HIV/AIDS face barriers to accessing private insurance, particularly in the individual insurance market. First, there are no limits on insurance rates, so people can be priced out of the market when they are asked to pay high premiums. To address this problem, some states have adopted community rating;1 others have utilized

1  

Community rating refers to premium rates that are set for the community as a whole. Rates cannot be set based on an individual’s claim experience (experience rating), health status, or duration of coverage.



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Public Financing and Delivery of Hiv/Aids Care: Securing the Legacy of Ryan White 4 Barriers to HIV Care As noted in Chapter 3, people with HIV disease access HIV care through a number of federal programs (e.g., Medicaid, Medicare, and the Ryan White Comprehensive AIDS Resource Emergency [CARE] Act [CARE Act]), private insurance, or a combination of these programs. There is little question that these programs have provided coverage for services that have made the difference between extended life and rapid death for many with HIV/AIDS. However, several finance-related barriers associated with these sources of coverage encumber the ability of the system to respond to the HIV epidemic. In the next section, the barriers associated with each source of coverage are reviewed, and concluding observations are presented. PRIVATE INSURANCE PROGRAMS People with HIV/AIDS in the private insurance market face a number of obstacles in accessing and maintaining care. Even with the protections offered by the Health Insurance Portability and Accountability Act of 1996 (HIPAA), people with HIV/AIDS face barriers to accessing private insurance, particularly in the individual insurance market. First, there are no limits on insurance rates, so people can be priced out of the market when they are asked to pay high premiums. To address this problem, some states have adopted community rating;1 others have utilized 1   Community rating refers to premium rates that are set for the community as a whole. Rates cannot be set based on an individual’s claim experience (experience rating), health status, or duration of coverage.

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Public Financing and Delivery of Hiv/Aids Care: Securing the Legacy of Ryan White “rating bands”2 to limit the size of premium increases.3 Some states have also chosen to purchase new policies for people with HIV, using CARE Act funds or other programs that target low-income or uninsured people. Other features of private insurance plans that pose problems for individuals with HIV/AIDS are the annual or lifetime caps on benefits, copayments, and deductibles, and limits on services. Finally, the insurance market and insurance reforms vary significantly by state, thus presenting different options and limitations across the country (Kates, 2004; Levi et al., 1999). Results from the HIV Cost and Services Utilization Study (HCSUS), for example, indicate that private insurance coverage for HIV varied substantially by region. In the West, 51 percent of HIV patients had private insurance coverage, compared with only 19 percent in the Northeast (Shapiro et al., 1999). HIPAA protections do not improve access to the individual market for those without prior group coverage. Many individual health insurance applications, for example, ask questions about HIV diagnoses, treatment, or medication for AIDS; other immunological deficiency disorders; and whether the individual has ever had a positive test for HIV antibodies. Most carriers in the individual market generally consider HIV/AIDS an “uninsurable” condition, and applications for coverage are routinely denied (Kates, 2004). Texas insurance law, for example, now allows state-regulated insurers to exclude or deny coverage or cancel a policy based on a diagnosis of AIDS, HIV, or HIV-related illness. If other states follow suit, federal programs such as Medicaid and the CARE Act could play an even more important role as a safety net insurer.4 As their illness progresses, individuals with HIV often face difficulties maintaining coverage if they become unemployed due to illness. The Health Insurance Program (HIP) under Title II of the CARE Act provides funding for health insurance coverage for people with HIV disease by purchasing insurance services or by extending an individual’s existing health insurance coverage. This program, added under a provision to the CARE Act in 1996, 2   Rating bands are restrictions placed on the variation in premiums. 3   The impact of these strategies is controversial; conventional wisdom suggests that community rating actually reduces insurance coverage because young healthy consumers react to the higher premiums (than expected for their risk status) by dropping coverage and thus stimulating further increases in premiums. A study by Buchmueller and DiNardo (1999) examined the effect of community rating by contrasting the different reform approaches in three states: New York with pure community rating, Connecticut with moderate restrictions on insurer premiums, and Pennsylvania with no reform. The study found no evidence that community rating leads to adverse selection and dropping of coverage, but did see evidence of marked shift away from indemnity insurance toward HMOs. 4   Texas Consumer Choice of Benefits Health Insurance Plan Act, Health Maintenance Organizations. SB541, Legislative Session 78 (R).

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Public Financing and Delivery of Hiv/Aids Care: Securing the Legacy of Ryan White allows states to use CARE Act funds to help people with HIV/AIDS who are eligible for Consolidated Omnibus Budget Reconciliation Act (COBRA)5 health benefit provisions to pay their premiums or buy private insurance. Title II AIDS Drug Assistance Programs (ADAP) may also purchase health insurance services for clients that include a full range of HIV treatment and primary care services. HIP also allows funds to be used to pay family health insurance premiums to ensure insurance continuation for a family member and to pay for public or private copayments and deductibles for persons with HIV disease. MEDICAID Certain elements of the Medicaid program create access problems for people living with HIV/AIDS, most notably, the eligibility criteria (Boxes 4-1–4-5). Most adults, for example, are denied entry into the program until they become disabled, long after the standard of care would call for intervention and despite the availability of therapies that may prevent disability (Kates, 2004; Levi and Kates, 2000). To tackle this problem, some states have applied for a Medicaid research and demonstration waiver to expand Medicaid eligibility to low-income people with HIV prior to disability.6 However, waivers must be budget neutral, meaning that programs conducted under a demonstration should not cost the federal government more than would have been spent under the program absent the demonstration. This criterion has been difficult for many states to meet (Kahn et al., 2001; Schackman et al., 2001). Also, federal consideration and approval of waivers may take years. For example, an HIV waiver submitted by the state of Georgia in 2000 had not been approved as of November 2003. Medicaid beneficiaries often lose eligibility for Medicaid if they return to work. Access to life-saving antiretroviral therapy through the Medicaid program allows many HIV beneficiaries to feel well enough to return to work, but health improvement may be a double-edged sword. The return to work and income earned can place individuals at income levels above the Medicaid eligibility level for participation in the program. The Balanced Budget Act of 1997 gave states the option to allow low-income individuals to keep their Medicaid coverage while working and earning income up to 250 percent of poverty level. The Ticket to Work/Work Incentives Improvement Act (TWWIIA) of 1999 provides a similar option. TWWIIA expands 5   Enacted in 1986, COBRA amends the Employee Retirement Income Security Act, the Internal Revenue Code, and the Public Health Service Act to provide continuation of group health coverage that otherwise might be terminated. 6   Section 1115 waivers allow states to experiment with how their Medicaid programs cover and deliver services.

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Public Financing and Delivery of Hiv/Aids Care: Securing the Legacy of Ryan White BOX 4-1 Variation in Medicaid Programs: Joe and Nancy As discussed in this chapter, Medicaid is an important vehicle for paying for care for people with HIV/AIDS. The variation among Medicaid programs, however, is a significant challenge to ensuring access to comprehensive care without disparities. The Centers for Medicaid & Medicare Services (CMS, formerly known as the Health Care Financing Administration), the federal agency that oversees Medicaid, states that there are “essentially 56 Medicaid programs—one for each state, territory, and the District of Columbia” (HCFA, 2000.) As might be expected, the differing economics, politics, and attitudes among states have produced widely varying Medicaid programs. In general, individual states’ Medicaid policies have a profound impact on access to care for individuals with HIV/AIDS (Morin et al., 2002). In addition, if a state’s Medicaid program has narrow eligibility rules and a limited benefits package, other programs, particularly Ryan White, may be expected to fill the gaps in Medicaid coverage (Levi et al., 2000). Because Ryan White is allocated on a discretionary basis, the amount of funds does not expand automatically according to need; thus, the larger the gap, the more likely that Ryan White funds will not be adequate. When examined from a national perspective, these variations in policies create disparities and discontinuities in care that are at odds with the stated federal goal to reduce HIV infection (Kates, 2004). To illustrate the implications of variations in state Medicaid programs at an individual level, a series of text boxes will run throughout this chapter on the experiences of Joe and Nancy, two fictional individuals with HIV. Their experiences in five states—Florida, Georgia, Illinois, New York, and Texas—as they move through the Medicaid system show the gaps and disparities in coverage caused by the variation among Medicaid programs. Medicaid varies not just among the states but within them, sometimes from county to county. In addition, eligibility and benefits rules change from year to year, particularly during times of economic downturn. Therefore, any representation of the experience of accessing HIV health care through Medicaid, no matter how nuanced, would fall short. Unless otherwise cited, the information in these text boxes is drawn from an analysis of the five Medicaid programs contained in Lubinski et al. (2002). These scenarios were developed in 2003 and may not reflect recent changes in state Medicaid law or policies. Meet Joe and Nancy The characters of Joe and Nancy are representative of some individuals living with HIV/AIDS in the United States who do not have access to private insurance. Joe has developed AIDS and suffers from a serious mental illness, bipolar disorder. He is considered disabled, thus qualifying for a $546 per month Supplemental Security Income (SSI) payment. The SSI payment is his only income. Nancy is a single mother of two with asymptomatic HIV and active substance abuse disorder. Nancy’s HIV diagnosis does not qualify her for Medicaid, although receiving care now could prevent progression of the disease. Because she is the mother of two children, however, she does qualify for Temporary Assistance to Needy Families (TANF), which makes her eligible for Medicaid under specific circumstances.

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Public Financing and Delivery of Hiv/Aids Care: Securing the Legacy of Ryan White state options under Medicaid by creating new Medicaid buy-in options and extended Medicare coverage for working individuals with disabilities. The Act also authorized state demonstration programs 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. Few states have chosen to implement these options. Once eligible for services, some Medicaid beneficiaries with HIV disease encounter difficulties finding providers—especially experienced providers—who are willing to take them on as patients (Tuller, 2001; Levi and Kates, 2000; CMS, 1999). One reason is financial; adequate reimbursement has been consistently asserted as necessary to ensuring beneficiary access to health care services and more specifically to health care provider participation. By influencing provider participation, low reimbursement rates have been shown to affect access to care for Medicaid beneficiaries in particular (Perloff et al., 1995; Adams, 2001; Kaiser Commission on Medicaid and the Uninsured, 2001; Cunningham, 2002; GAO, 2002; Santerre, 2002). Federal law provides states with considerable discretion in determining the amount Medicaid will reimburse for services provided to beneficiaries on a fee-for-service basis. The limitation on state discretion is that payments must be “sufficient to enlist enough providers so that care and services are available under [the state’s Medicaid program] at least to the extent that such care and services are available to the general population in the geographic area” (CMS, 1999). Furthermore, reimbursement for HIV care in both fee-for-service and managed care settings does not always reflect the true cost of providing care that can be time consuming and resource intensive (Bartlett, 2002; Beronja et al., 2002; Norton and Zuckerman, 2000; Conviser and Murray, 2000). With the advent of more costly protease inhibitors as a mainstay of therapy for HIV, small managed care organizations have found it unprofitable to participate in Medicaid managed-care programs (Conviser et al., 1997). Low reimbursement rates have been suggested as a factor contributing to inferior patterns of care for some Medicaid enrollees with HIV/AIDS (Shapiro et al., 1999). It is instructive that the Medicare program, where reimbursement rates are set nationally at a higher level than Medicaid rates, has consistently higher physician participation, better patient access, and easier patient referrals than Medicaid (MedPAC, 2003). In many states, Medicaid beneficiaries are enrolled in managed-care organizations (MCO) (Westmoreland, 1999; Kaye and Cardona, 2002). A number of concerns have been raised about enrolling individuals infected with HIV in MCOs (Levi and Kates, 2000). At issue is the adequacy of capitation rates necessary to ensure that MCOs are able to maintain an “adequate provider network” that “includes providers who have both

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Public Financing and Delivery of Hiv/Aids Care: Securing the Legacy of Ryan White BOX 4-2 Variation in Medicaid Programs Eligibility for Joe Joe’s AIDS diagnosis does not guarantee that he will qualify for Medicaid or Supplemental Security Income (SSI) disability payments. First, he must obtain a Social Security Administration (SSA) determination of disability through a complex system that involves multiple organizations in determining whether a claimant is eligible for benefits. The definition applied by the SSA when making this determination is “a physical or mental impairment that keeps a person from performing any ‘substantial’ work and is expected to last 12 months or result in death” (SSA, 2004). If he is dissatisfied with the SSA’s initial decision, he can pursue a revised decision by appealing to three levels of administrative appeal that have their own procedures for evidence collection, review, and decision making. Once he has crossed this threshold, Joe is eligible for Medicaid in all five states. In Illinois, he would be allowed to earn up to 100 percent of the federal poverty level, or $738 per month in 2002. The other four states—Florida, Georgia, New York, and Texas—would require that he earn no more than the maximum disability payment, $546 per month. Because Joe’s Medicaid eligibility is based on receipt of SSI payments, he is required to enroll in managed care in Florida and Georgia. In New York, enrollment in managed care is voluntary. In Texas, managed-care enrollment is mandatory in Harris County (Houston), but voluntary where it is available throughout the rest of the state. If Joe were to enroll in managed care in Texas, he would not face the three-prescription drug limit that fee-for-service Medicaid beneficiaries do. Managed-care plans, however, are available in only 51 of the 254 counties in Texas. Eligibility for Nancy If Nancy qualifies for Temporary Assistance for Needy Families (TANF), she is automatically eligible for Medicaid. The income requirements for TANF vary; in Texas she must earn no more than $188 per month, while in New York she could earn up to $577 per month and still qualify. Federal law places a five-year lifetime limit on the receipt of TANF benefits; Florida and Georgia, however, impose a four-year limit. In addition, Florida limits TANF eligibility to two years within a five-year period for most individuals. This has serious implications for Nancy’s ability to receive stable lifetime care for her HIV. It is important to note that Nancy’s HIV diagnosis does not guarantee her access to medical care in any of the five states. If she makes too much money, for example, by working full time earning the minimum wage, she is ineligible for Medicaid coverage even in the states with the most generous eligibility requirements.

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Public Financing and Delivery of Hiv/Aids Care: Securing the Legacy of Ryan White experience with HIV and the capability to take new patients” (Ashman and Conviser, 1998; Kaye and Cardona, 2002). At this time there are no formal guidelines for determining whether a physician is qualified as a specialist in HIV care, and there is substantial debate about whether a generalist or a specialist for HIV/AIDS provides higher quality care (Lewis, 1997; Zuger and Sharp, 1997; Laine and Weinberg, 1999; Valenti, 2002). However, it is widely accepted that experience counts. There is evidence that physicians with more experience treating HIV have better patient outcomes (Levi et al., 2003; Gerbert et al., 2001; Stone et al., 2001; Kitahata et al., 1996). Research also shows that more experienced providers are more likely to provide care that is in accordance with rapidly changing HIV treatment guidelines (Kitahata et al., 2000; Brosgart et al., 1999). Moreover, the longer a physician has been treating patients for HIV infection and the higher the volume of these patients in the physician’s regular practice, the higher the physician’s confidence in assessing patient status, prescribing treatment regimens, and inter- BOX 4-3 Variation in Medicaid Programs: Prescription Drugs Joe’s bipolar disorder adds yet another dimension to his already complex AIDS care. It would not be unlikely that Joe would be prescribed three drugs for bipolar disorder as well as three antiretroviral medications and an opportunistic illness prophylactic. The three medications that Joe takes to control his bipolar disorder would be covered at various levels. In New York, Joe would face no copays and no limits on the number of prescriptions. In Florida, mental health drugs are excluded from the limit of four brand-name prescription drugs and there are no copays, so here Joe also would face no restrictions. If he lived in Georgia, Joe would be within the five-prescription drug limit (in treating only his bipolar disorder), but would face a copay of 50 cents to $3 per prescription, forcing him to spend as much as $9 a month on drugs. If Joe lived in Texas, there are two possibilities. If he lived in an area where managed care is available and he chose to enroll, then he would face no limits and no copays. If he lived in a county where managed care is unavailable—as it is in most counties—then prescription drug treatment for his bipolar disorder would exhaust his drug benefit of three prescriptions per month. To receive all of his medications, Joe might have to find coverage from other sources. In Texas, Joe would need to rely upon the AIDS Drug Assistance Program (ADAP) to fill the gap between his needs and Medicaid coverage. In Georgia, Medicaid has a five-drug limit and ADAP has a waiting list; Joe would need to either pay for two of his prescriptions out-of-pocket—an unthinkable expense considering his income—or go without, choosing between treating his HIV infection or his bipolar disorder.

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Public Financing and Delivery of Hiv/Aids Care: Securing the Legacy of Ryan White preting new research findings (Gerbert et al., 2001). To address the problem of access to experienced providers, the Health Care Financing Administration (which is now the Centers for Medicare & Medicaid Services, or CMS) issued guidance to state Medicaid directors to work to “ensure access to experienced HIV providers in both the fee-for-service program and managed care” (CMS, 1999). Another concern associated with capitation rates centers on the extent to which rates meet the cost of providing care for HIV disease (Conviser et al., 2000; Kates, 2004). To address this problem, some states have begun to apply risk adjustment strategies in determining capitation rates for patients with HIV disease (Lubinski et al., 2002; Kaye and Cardona, 2002). An evaluation of Maryland’s Medicaid HealthChoice Program, which pays managed-care organizations risk-adjusted capitation rates to ensure that plans are adequately compensated while serving a wide range of beneficiaries, provides some lessons from Maryland’s experience. Evaluation findings indicate that the HealthChoice program greatly expanded eligibility and services to a larger and more diverse population than previously was served. Financial performance levels of the HealthChoice plans were consistent with commercial HMO performance. However, the evaluation left unclear whether differential enrollment based on patient risk would be sufficient to justify the resources needed to make such adjustments (Chang et al., 2003). State Medicaid programs are also experimenting with other strategies to mitigate inadequate provider reimbursement, including health-based payment systems that set capitation rates based on health status and “carveout” programs that exclude some expenses from the capitation rate (Conviser et al., 1998, 2000). In New York’s Medicaid program, for example, those physicians who meet the state-set criteria as HIV specialists receive an enhanced Medicaid reimbursement rate that comes closer to covering the actual cost of care (New York State Department of Health, 2003). Perhaps the most troubling aspect of the Medicaid program is the tremendous variation in state Medicaid programs, which in turn results in different levels of services for individuals with HIV disease (Table 4-1). States vary in income eligibility thresholds and in the existence of medically needy programs, home and community-based services (HCBS) waiver programs,7 Section 1115 waiver programs, and Ticket to Work Programs that can help to expand access to services. States also vary tremendously in 7   Home and Community-Based Services Waivers (Section 1915(c)) allow states to bypass certain federal requirements that limit the development of Medicaid-financed, community-based treatment alternatives (Westmoreland, 1999).

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Public Financing and Delivery of Hiv/Aids Care: Securing the Legacy of Ryan White BOX 4-4 Variation in Medicaid Programs: Treatment for Mental Illness In each of the five states, Joe could see a psychiatrist at a mental health clinic. In Florida, he would have a copay of $2 for each visit. In Texas, he would be limited to 30 visits per year. To help him manage the requirements of treating his illness, Joe could also have access to case management services in Illinois and New York. In Florida and Georgia, Joe would have access to a case manager only if he were deemed to be at immediate risk for hospitalization or had just been released from a hospital. This service would be limited to 30 days, however. If Joe resided within the Dallas area in Texas and enrolled in the NorthSTAR Behavioral Pilot Program, it is possible, but not guaranteed, that he would receive some case management. If Joe were outside of the Dallas area but enrolled with one of the two health maintenance organizations in Texas’s Medicaid program, he may be eligible for case management, but again this benefit is not automatic. BOX 4-5 Variation in Medicaid Programs: Substance Abuse Treatment Even though as a recipient of TANF Nancy is eligible for Medicaid, her active substance abuse presents a barrier to her seeking and remaining in HIV care. Not surprisingly, her opportunities to receive substance abuse treatment within the differing Medicaid programs would vary. In Illinois and New York, Nancy would have access to substance abuse services, including outpatient visits (there is a limit to the number of visits covered per year) and inpatient detoxification. In Illinois, she would also receive priority admission to community-based substance abuse services as part of the program’s target populations (TANF eligible, HIV positive, and a woman with children). In Texas, if Nancy lived in Dallas or its surrounding counties, she would be eligible for a pilot program that provides a comprehensive set of services. These include Day treatment programs for acute needs and skills training, Intensive crisis residential services, Supportive housing, Medication services, and Specialized chemical dependency services for women with dependent children that includes child care. If Nancy lived outside of the Dallas area, no substance abuse services would be covered under Medicaid.

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Public Financing and Delivery of Hiv/Aids Care: Securing the Legacy of Ryan White TABLE 4-1 Select State Variation in Medicaid Coverage State/Territory SSI Eligibility, % Federal Poverty Level, 20001 Pregnant Women Eligibility, %FPL, 20001 Medically Needy Program (Eligibility), 20011,2 209(b) State, 20021,2 Prescription Limitations Per Month: No. Per Month, 20013,4 HIV-Specific Waivers: 1115, TWWIIA, HCBS, 20025,6 California 74 300E Yes (83%) — 6 HCBS District of Columbia 74 200 Yes (53%) — — 1115, TWWIIA, HCBS Florida 74 185 Yes (25%) — 4 HCBS Georgia 74 235 Yes (44%) — 5 — Illinois 41 200 Yes (40%) Yes — HCBS Mass. 74 200 Yes (NA) — — 1115 New York 74 200 Yes (87%) — Yes: annual limit — Ohio 64 150 — Yes — — Texas 74 185 Not for disabled — 3 — West Virginia 74 150 Yes (28%) — 10 —   SOURCE: Kates, 2004.

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Public Financing and Delivery of Hiv/Aids Care: Securing the Legacy of Ryan White the benefits they provide under Medicaid. Across states, there are differences in the limits on some Medicaid services, such as the number of prescriptions allowed per month, the length of hospital inpatient services, the number of physician visits per month, and prior authorization requirements (however, these limits cannot be applied selectively to one group of beneficiaries). With respect to adults, states may also impose “nominal” cost-sharing requirements on mandatory or optional services (with the exception of emergency and prenatal care). States also vary in special provisions for HIV/AIDS; some states require access to experienced providers, targeted case management, dental care, transportation, and vision coverage, while others do not (Conviser, 2002; Kaye and Cardona, 2002). MEDICARE People with HIV/AIDS, as well as people with disabling conditions in general, face certain challenges in accessing Medicare or needed benefits through the Medicare program once they become eligible. Medicare has relatively high deductibles relative to Medicaid and no limits on out-of-pocket spending, which means that some individuals may not be able to afford services. Furthermore, at this time Medicare does not cover outpatient prescription drugs, so Medicare beneficiaries with HIV/AIDS must find other means to pay for highly active antiretroviral therapy (HAART), which is critical for the treatment and control of HIV/AIDS. Some individuals with HIV/AIDS may receive limited prescription drug benefits by enrolling in a Medicare managed-care plan. However, in recent years, reductions in managed-care plan service areas and plan withdrawals from the market have affected beneficiaries’ access to Medicare services (Kaiser Family Foundation, 2002). Medicare is also quite limited in its support for nonmedical services that are important elements of HIV care (e.g., social case management, preventive services, and other support and enabling services) (Levi and Kates, 2000). One option that may allow Medicare beneficiaries with HIV/AIDS to obtain prescription drugs is to purchase a private Medicare Supplemental Insurance policy—also referred to as a “Medigap” policy. However, these policies do not completely solve beneficiaries’ problems in obtaining needed medications. Drug benefits under these policies generally have a deductible and may cover only a percentage (e.g., 50 percent) of the drug costs up to a maximum level per year. Furthermore, the premiums associated with these policies may place them out of reach for low-income beneficiaries and some create hardships for middle-income beneficiaries. People with HIV/AIDS who cannot afford prescription drugs must rely on Medicaid or ADAP to obtain medications (Kates, 2004).

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Public Financing and Delivery of Hiv/Aids Care: Securing the Legacy of Ryan White not be explained by differences in the desire to receive such therapies (Gifford et al., 2002). Blacks, Hispanics, women, the uninsured, and Medicaid beneficiaries also had less favorable patterns of use of hospitals, emergency departments, and ambulatory office or clinic settings (Shapiro et al., 1999). Patients in rural areas were also less likely to receive antiretroviral therapy (Cohn et al., 2001). Additional compelling evidence supporting the hypothesis that improved financing of HIV care would reduce disparities in access is offered in the recent study using HCSUS data conducted by Bhattacharya and Goldman (2003). Data from this study show that patients with public health insurance (Medicaid) have much lower death rates than uninsured patients (controlling for severity illness). The authors estimate that expanding public insurance coverage for HIV/AIDS patients could reduce HIV/AIDS-related deaths among the uninsured up to 66 percent. The researchers also found that states with Medicaid programs with less restrictive eligibility rules and more generous drug coverage had significantly lower death rates than states with more restrictive eligibility rules and less generous drug coverage. Demographic variables and comorbidities also play an important role in accessing HAART. Additional HCSUS analyses found that women, blacks, those with less education, and injection drug users were least likely to have received early access to HAART (Andersen, 2000). The results of a study of service claims data from four states (California, New York, Florida, and Texas) supports racial and ethnic differentials found in the HCSUS study. Significant racial/ethnic disparities were found in the reduction of AIDS-related mortality and in reduction of AIDS-related mortality by state. AIDS-related mortality was reduced by 64 percent in California compared with 52 percent in Texas (Morin et al., 2002). Mortality reductions for Latinos and African Americans were found to be lower than for non-Latino whites. These disparities were associated in part with policy barriers, such as limits on Medicaid eligibility based on disability requirements and state-imposed income and benefit limits on ADAP, as well as social barriers (HIV-related stigma). Marcus and colleagues (2000) analyzed HCSUS data to assess access to dental services. He found that perceived unmet need was greatest among those on Medicaid in states that did not provide dental coverage through the Medicaid program, and for others lacking dental insurance. Persons with low incomes (under $5,000) and those with less than a high school education also had higher odds of having perceived unmet needs (Marcus et al., 2000). Case management services have been found to support individuals’ access to care. Katz et al. (2000) found a high level of unmet need for supportive services among persons in care. Unmet need was significantly higher among nonwhites and persons with less education. Those with a

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Public Financing and Delivery of Hiv/Aids Care: Securing the Legacy of Ryan White case manager were less likely to have unmet needs in these areas (Katz et al., 2000). In a follow-up study, Katz and colleagues (2002) found that receipt of case management services was associated with a higher rate of HAART use, but not with increased inpatient or ambulatory services utilization. Cunningham et al. (1999) also found a high rate of competing subsistence needs among persons in care for HIV. More than one-third of subjects postponed care or went without it because of need for food, clothing, or housing; lack of transportation; or being too sick or unable to take off from work. In addition, nearly 8 percent went without food or appropriate clothing in order to pay for medical care. Delays of care for these reasons were greatest among those with less education, low income, and no health insurance and among nonwhites (Cunningham et al., 1999, 2000). Other studies have shown that receiving treatment for mental illness is associated with a higher probability of receiving antiretroviral treatment; thus, the barriers to receiving care for mental illness are relevant when considering access to HIV care (Turner et al., 2001; Cook et al., 2002; Sambamoorthi et al., 2000). These barriers are substantial, as indicated by the high proportion of those who need treatment for mental illness but do not receive it. Many barriers to receiving treatment for mental illness are similar to those that are present for receiving treatment for HIV. Two Surgeon General reports have analyzed the barriers that deter more than half of those with diagnosable mental disorders from receiving care (DHHS, 1999, 2001). Three overarching barriers to care were identified: the stigma attached to mental illness, the cost of mental health services, and the fragmentation of services. The third barrier refers to the patchwork of programs and settings of care (e.g., hospital, community clinic, private office, school) and the myriad of financing streams that make it difficult for people to obtain care and remain in care. Members of ethnic and racial minority groups face not only these three barriers, but also a host of others, including fear and mistrust of mental health care providers, providers’ lack of awareness of cultural concerns, and language barriers for immigrants (DHHS, 2001). Rates of both access to and utilization of mental health care are lower for minorities than for whites (DHHS, 2001). Individuals with comorbid mental illness and HIV can face additional barriers to receiving care for both illnesses even if they have been brought into the treatment system for one. The barriers stem partly from the complexity of coordinating care among overlapping yet distinct service systems—mental health, substance abuse, and general medical care. People with mental illness, regardless of severity, are seen by specialty mental health providers or by general medical providers (e.g., primary care) (DHHS, 1999). People with HIV are seen in primary medical care or by infectious disease specialists. To complicate matters, substance abuse treatment providers do not always diagnose mental disorders (Zweben, 2000).

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Public Financing and Delivery of Hiv/Aids Care: Securing the Legacy of Ryan White Understanding Differences in Access to Care Policy analysts and researchers posit that the combination of financing structures and individual characteristics such as race/ethnicity and low-income level interact to exacerbate disparities in health care. Rice (2003) and Rosenbaum (2003) identified a number of federal program elements that may contribute to racial and ethnic disparities in access to care. Rice (2003) explains that higher cost sharing requirements (a cost containment strategy designed to lower utilization of services) are a greater financial burden on those with low income because they result in more income being spent on services or fewer services being purchased. On average, racial and ethnic minorities have lower incomes than whites; thus, they tend to be more adversely affected. Rice supports this relationship with findings from the RAND Health Insurance Experiment (Manning et al., 1987; Newhouse and Insurance Experiment Group, 1993). Researchers from that study found that co-payments had a substantial impact on whether or not patients sought care for an illness, but little effect on how much care they received once they sought care. As Rice states more simply, “…its major impact is on reducing the number of episodes of care for which care is sought rather than the cost of care per episode” (Rice, 2003, p. 702). Rice notes that the RAND study also found some instances in which lower cost sharing (free care) improved health outcomes among low-income families and persons (Brook et al., 1983; Valdez, 1986; Shapiro et al., 1986). Wong et al. (2001), using data from the Medical Outcomes Study, a study designed to examine the impact of different systems of care on health outcomes, found that in a chronically ill adult population, the low- and high-copayment groups were less likely to seek care for minor symptoms in comparison to a no copayment group, but only the high-copayment group had a lower rate of seeking care for serious symptoms. The study found no difference in follow-up physical and mental health status scores among the three groups. Rosenbaum (2003) and Rice (2003) also considered the impact of administrative choices made in payment of Medicaid providers and racial and ethnic disparities in health care. According to Rosenbaum (2003), low payment rates (e.g., Medicaid payment rates) discourage all but core safety net provider participation because the loss of revenues as a result of steep contractual allowances cannot be supported by other small classes of providers. Rice (2003), on the other hand, draws upon the “price discriminating monopolist” model (Sloan et al., 1978) to explain provider behavior that has a disproportionate impact on minority patients. Under this model, physicians can receive different amounts of revenue from different groups of patients (e.g., private insurers, Medicare, Medicaid). Physicians would be more inclined to treat the most lucrative patients first, then those who

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Public Financing and Delivery of Hiv/Aids Care: Securing the Legacy of Ryan White are less lucrative. Physicians would tend not to treat those groups of patients whose costs exceed revenue. The differential coverage of whites and minorities under the Medicaid program places minority patients at a higher risk of having less access to providers, except for those minority patients who are heavily dependent on Medicaid revenues (Rice, 2003). COMMITTEE OBSERVATIONS AND CONCLUSIONS In assessing the current factors that affect access to HIV care, the Committee recognized that there are many actors in the care system—including people living with HIV, providers of medical care, Ryan White planning councils, and policy makers at the federal, state, and local levels—and these actors do not view themselves or act as interrelated elements of a complex whole. Each has different goals and objectives, which at times are complementary but often are conflicting. At the most fundamental level, the goal of HIV therapy is to increase the level of functioning in the patient, or at least halt its decline, and to slow or halt the progression of the disease. Combination antiretroviral therapy accomplishes this by inhibiting viral replication, thereby maintaining effective immune system response for an indefinite period of time. The goal of providers caring for people living with HIV/AIDS is to provide effective HIV therapy, including HAART when appropriate, to maintain the patient’s health for as long as possible, and to provide comfort and palliative care when necessary. But providers also face the pressures of maintaining an adequate income for themselves and the staff they employ; without adequate reimbursement they can be forced to curtail the services they offer or leave the practice of HIV care altogether. At its simplest, the goal of people living with HIV is to obtain effective HIV therapy. However, complications abound in trying to achieve this simple goal. An untreated comorbidity, such as substance use disorder, can introduce a competing objective that is often at odds with receiving effective HIV treatment. An underlying social condition such as poverty can be the source of multiple competing objectives as the individual struggles to obtain necessities such as food and shelter. As the circle of care widens, the actors and their goals grow even more complex. At the local level, Ryan White planning councils have the objective of appropriately and effectively allocating federal grant dollars to the areas of greatest need within the community. But existing recipients of funds may become entrenched interests who resist needed changes as the epidemic evolves, putting pressure on the planning councils to maintain the existing infrastructure within the care community. Federal, state, and local government agencies are charged with serving the greatest number of people possible with limited resources. Often, how-

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Public Financing and Delivery of Hiv/Aids Care: Securing the Legacy of Ryan White ever, and perhaps inevitably, they attempt to shift costs and responsibilities to one another in an effort to free up resources for other programs or priorities. Policy makers at every level are faced with developing and implementing fiscally responsible and politically viable policies that meet the needs of their constituencies. That all of these various individuals and the organizational entities they represent would have differing goals is not always inappropriate. Each has a role to play and may be required to provide a balance to some other element of the system. However, it is important to remember that individual elements are parts of a whole. What are the goals of the whole—the publicly funded HIV/AIDS care system itself? Defining the goals of the HIV/AIDS care system is a crucial step toward improving it. There must be a system-level set of objectives that integrates the needs and interests of the various elements into a common cause, in order to provide rationality to the system. Goals for the HIV/AIDS Care System The Committee believes the primary goal of the publicly funded system of HIV care should be to improve the quality and duration of life for those with HIV and promote effective management of the epidemic by providing access to comprehensive care to the greatest number of individuals with HIV infection. The Committee defined four secondary objectives of the system around the essential concepts of access, quality, efficiency, and accountability: Ensure HIV-infected individuals early and continuous access to an appropriate, comprehensive set of medical and ancillary services that meet the standard of care (access). Promote the delivery of high-quality services (quality). Facilitate the provision of services with a minimum of administrative costs (for payers and providers) and a minimum of duplication of effort (efficiency). Ensure accountability of the financing and service delivery system for meeting established standards of treatment and health outcomes for all eligible individuals (accountability). The financial portion of this goal will be discussed in Chapter 6. These four objectives define the goals of an integrative chronic care system that can appropriately meet the needs of both individuals with HIV/AIDS and the providers who serve them. With these goals and objectives as a backdrop, the Committee asked the following questions: Does the financing system described in this and

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Public Financing and Delivery of Hiv/Aids Care: Securing the Legacy of Ryan White previous chapters ensure access to the standard of care for HIV? Does the system promote delivery of high-quality services? Does the system facilitate efficiency and ensure accountability? Based on the data presented in previous chapters, the Committee offers the following observations and conclusions. While the third decade of HIV/AIDS offers unprecedented technological and clinical advances in its treatment and epidemiological management, the structural barriers in the financing and delivery of care have undermined the effective application of these advances. As discussed in preceding chapters of this report, effective HIV/AIDS management results in (1) people with HIV/AIDS experiencing substantial reductions in mortality and disability, (2) people with HIV/AIDS experiencing improved quality of life, and (3) with continued HIV prevention, the rates of new infection declining significantly, protecting the health of the public. As a clinical and scientific matter, the improvement in the individual health of those with HIV/AIDS and the protection of the public’s health are inextricably linked. The link between individual health and the protection of the public’s health is reflected in three overarching clinical and epidemiological realities. First, with sustained comprehensive treatment, mortality from the disease can be reduced significantly, with commensurate reductions in disability and health care costs. Second, receiving sustained comprehensive treatment can help to prevent transmission of HIV to others because drug therapies reduce viral load, thus potentially rendering the individual less infectious (Vernazza et al., 1999; Staszewski et al., 1999; Barroso et al., 2000). Yet there is some evidence that receiving HAART can cause an increase in unsafe behaviors, thus emphasizing the importance of prevention counseling as a routine part of clinical care (Katz et al., 2002). Third, people who receive drug therapies on a nonsustained or intermittent basis are more likely to develop and transmit resistant strains of HIV, creating substantial new risks for individuals and the community at large. The Committee finds that the current system of HIV/AIDS care is characterized by substantial financial and structural barriers to critical elements of care, including HAART, and by interruptions in care and drug therapies that pose serious risks to both individual and community health. These barriers include limited access to private insurance and constrained eligibility for public programs with benefit packages that vary from state to state. The result is continued preventable death and disability and little decline in the rate of new infections each year (CDC, 2002). Based on its analysis of the trends in HIV infection, demographics of the disease, treatment advances, and the current systems of financing and delivering care, the Committee concludes the following: Conclusion 1: Current public financing strategies for HIV care have provided care and extended the lives of many low-income individuals.

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Public Financing and Delivery of Hiv/Aids Care: Securing the Legacy of Ryan White However, significant disparities remain in assuring access to the standard of care for HIV across geographic and demographic populations. Conclusion 2: The current federal–state partnership for financing HIV care is unresponsive to the fact that HIV/AIDS is a national epidemic with consequences that spill across state borders. State Medicaid programs that provide a significant proportion of coverage for HIV care are dependent upon widely varying resources and priorities that produce an uneven and therefore ineffective approach to managing the epidemic. Conclusion 3: Under the current patchwork of public programs that finance HIV care, many HIV-infected individuals have no access or limited access to the standard of care for HIV. Fragmentation of coverage, multiple funding sources with different eligibility requirements that cause many people to shift in and out of eligibility, and significant variations in the type of HIV services offered in each state prevent comprehensive and sustained access to quality HIV care. Conclusion 4: The lack of sustained access to HAART, in particular, is an indicator of poor quality care. Without access to HAART, individuals face increased illness, disability, and death. Conclusion 5: Low provider reimbursement in Medicaid and managed-care delivery systems has the potential to discourage experienced physicians from treating patients with HIV infection and to undermine the quality of HIV care. Conclusion 6: The lack of nationwide data on the unduplicated number of individuals served and the services they received under the Ryan White CARE Act hinders accountability, quality monitoring, and outcomes evaluation, and impedes the improvement of the program. Conclusion 7: The majority of HIV care is publicly financed, providing a strong incentive and opportunity for the federal government to finance and deliver care more effectively. The Committee’s conclusions serve as the backdrop for considering a number of alternative options for the public financing and delivery of HIV care. These alternative options are discussed in Chapter 5. REFERENCES Adams EK. 2001. Factors affecting physician provision of preventive care to Medicaid children. Health Care Financing Review 22(4):9–26.

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Public Financing and Delivery of Hiv/Aids Care: Securing the Legacy of Ryan White Andersen R, Bozzette S, Shapiro M, St. Clair P, Morton S, Crystal S, Goldman D, Wenger N, Gifford A, Leibowitz A, Asch S, Berry S, Nakazono T, Heslin K, Cunningham W. 2000. Access of vulnerable groups to antiretroviral therapy among persons in care for HIV disease in the United States. HIV Cost and Services Utilization Study Consortium. Health Services Research 35(2):389–416. Ashman DJ, Conviser R. 1998. HIV Capitation Risk Adjustments Conference Report. Menlo Park, CA: Kaiser Family Foundation. Bartlett J. 2002. Medical Management of HIV Infection, 2001–2002. Baltimore, MD: Johns Hopkins University School of Medicine. Beronja N, Menges J, Chang A, Murray M. 2002. Comparison of Medicaid Pharmacy Costs and Usage between the Fee-for-Service and Capitated Setting. Washington, DC: Center for Health Care Strategies, Inc. Bhattacharya J, Goldman D, Sood N. 2003. The link between public and private insurance and HIV-related mortality. Journal of Health Economics 22:1105–1122. 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):1897–1904. Brook RH, Ware JE Jr., Rogers WH, Keeler EB, Davies AR, Donald CA, Goldberg GA, Lohr KN, Masthay PC, Newhouse JP. 1983. Does free care improve adults’ health? Results from a randomized controlled trial. New England Journal of Medicine 309(23):1426–1434. Brosgart CL, Mitchell TF, Coleman RL, Dyner T, Stephenson KE, Abrams DI. 1999. Clinical experience and choice of drug therapy for human immunodeficiency virus disease. Clinical Infectious Disease 28:14–22. Buchmueller T, DiNardo J. 1999. Did Community Rating Induce an Adverse Selection Death Spiral? Evidence from New York, Pennsylvania, and Connecticut. Working Paper 6872. [Online]. Available: http://www.nber.org/papers/w6872 [accessed March 8, 2004]. CMS (Center for Medicare and Medicaid Services). 1999. Fact Sheet on Experienced HIV/AIDS Providers 9/30/99. [Online]. Available: www.cms.hhs.gov/statee/letters [accessed July 12, 2002]. Cohn SE, Berk ML, Berry SH, Duan N, Frankel MR, Klein JD, McKinney MM, Rastegar A, Smith S, Shapiro MF, Bozzette SA. 2001. The care of HIV-infected adults in rural areas of the United States. Journal of Acquired Immune Deficiency Syndrome 28(4):385–392. Conviser R. 2002, February 22. Presentation to the Institute of Medicine Committee on the Public Financing and Delivery of HIV Care, Washington, DC. Conviser R, Kerrigan D, Thompson S. 1997. The adequacy of reimbursement for HIV under section 1115 Medicaid waivers. AIDS Public Policy Journal 12(3):112–127. Conviser R, Murray, M, Lau, D. 2000. Medicaid managed care reimbursement for HIV and its implications for access to care. American Journal of Managed Care 6(9):990–999. Cook JA, Cohen MH, Grey D, Kirstein L, Burke JK, Anastos K, Palacio H, Richardson J, Wilson TE, Young M. 2002. Use of highly active antiretroviral therapy in a cohort of HIV-seropositive women. American Journal of Public Health 92(1):82–87. Cunningham PJ. 2002. Mounting Pressures: Physicians Servicing Medicaid Patients and the Uninsured, 1997–2001. Health System Change Tracking Report No. 6. Washington, DC: Center for Studying Health Systems Change. Cunningham WE, Andersen RM, Katz MH, Stein MD, Turner BJ, Crystal S, Zierler S, Kuromiya K, Morton SC, St. Clair P, Bozzette SA, Shapiro MF. 1999. The impact of competing subsistence needs and barriers on access to medical care for persons with human immunodeficiency virus receiving care in the United States. Medical Care 37(12):1270–1281.

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Public Financing and Delivery of Hiv/Aids Care: Securing the Legacy of Ryan White Cunningham WE, Markson LE, Andersen RM, Crystal SH, Fleishman JA, Golin C, Gifford A, Liu HH, Nakazono TT, Morton S, Bozzette SA, Shapiro MF, Wenger NS. 2000. Prevalence and predictors of highly active antiretroviral therapy use in patients with HIV infection in the United States. HCSUS Consortium. HIV Cost and Services Utilization. Journal of Acquired Immune Deficiency Syndrome 25(2):115–123. DHHS (U.S. Department of Health and Human Services). 1999. Mental Health: A Report of the Surgeon General. Rockville, MD: DHHS, Substance Abuse and Mental Health Services Administration, Center for Mental Health Services; National Institutes of Health, National Institute of Mental Health. DHHS. 2001. Mental Health: Culture, Race and Ethnicity. A Report of the Surgeon General. Rockville, MD: DHHS, Substance Abuse and Mental Health Services Administration, Center for Mental Health Services; National Institutes of Health, National Institute of Mental Health. Eichner J. 2001. Medicare Brief, Coordination of Health Coverage for Medicare Enrollees: A Case Study of HIV/AIDS. Washington, DC: National Academy of Social Insurance. GAO (General Accounting Office). 2000. HIV/AIDS: Use of Ryan White CARE Act and Other Assistance Grant Funds. Report to Congressional Requesters. GAO/HEHS-00-54. Washington, DC: GAO. GAO. 2002. Medicare Physician Payments: Spending Targets Encourage Fiscal Discipline, Modifications Could Stabilize Fees. GA-02-441T. Washington, DC: GAO. Gerbert B, Moe JC, Saag MS, Benson CA, Jacobsen DM, Feraios A, Hill ME, Bronstone A, Caspers N, Volberding PA. 2001. Toward a definition of HIV expertise: a survey of experienced HIV physicians. AIDS Patient Care STDs 15(6):321–330. Gifford AL, Cunningham WE, Heslin KC, Andersen RM, Nakazono T, Lieu DK, Shapiro MF, Bozzette SA. 2002. Participation in research and access to experimental treatment by HIV-infected patients. HIV Cost and Services Utilization Study Consortium. New England Journal of Medicine 346(18):1373–1382. HCFA (Health Care Financing Administration). 2000. A Profile of Medicaid: Chartbook 2000. Washington, DC: HCFA. IOM (Institute of Medicine). 2003. Measuring What Matters: Allocation, Planning and Quality Assessment for the Ryan White CARE Act. Washington, DC: The National Academies 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):1464–1473. Kaiser Commission on Medicaid and the Uninsured. 2001. Medicaid and Managed Care. Washington, DC: Kaiser Family Foundation. Kaiser Family Foundation. 2002. Medicare + Choice Withdrawals: Understanding Key Factors. Washington, DC: Kaiser Family Foundation Kates J. 2004. Financing HIV/AIDS Care: A Quilt with Many Holes. Paper prepared for the Committee on Public Financing and Delivery of HIV Care, Institute of Medicine. Washington, DC: Kaiser Family Foundation. Katz MH, Cunningham WE, Mor V, Andersen RM, Kellogg T, Zierler S, Crystal SC, Stein MD, Cylar K, Bozzette SA, Shapiro MF. 2000. Prevalence and predictors of unmet need for supportive services among HIV-infected persons: pmpact of case management. Medical Care 38(1):58–69. Katz MH, Schwarcz SK, Kellogg TA, Klausner JD, Dilley JW, Gibson S, McFarland W. 2002. Impact of highly active antiretroviral treatment on HIV seroincidence among men who have sex with men: San Francisco. American Journal of Public Health 92(3):388–394. Kaye N, Cardona A. 2002. Trends in Serving People with HIV/AIDS through Medicaid Managed Care. 3rd edition. Portland, ME: National Academy for State Health Policy.

OCR for page 107
Public Financing and Delivery of Hiv/Aids Care: Securing the Legacy of Ryan White Kitahata MM, Koepsell TD, Deyo RA, Maxwell CL, Dodge WT, Wagner EH. 1996. Physicians’ experience with the acquired immunodeficiency syndrome as a factor in patients’ survival. New England Journal of Medicine 334(11):701–706. Kitahata MM, Van Rompaey SE, Sheilds AW. 2000. Physician experience in the care of HIV-infected persons is associated with earlier adoption of new antiretroviral therapy. Journal of Acquired Immune Deficiency Syndrome 24(2):106–114. Laine C, Weinberg DS. 1999. How can physicians keep up-to-date? Annual Review of Medicine 50:99–110. Levi J, Kates J. 2000. HIV: challenging the health care delivery system. American Journal of Public Health 90(7):1033–1036. Levi J, Sogocio K, Gambrel A, Jones K. 1999. Can Access to the Private Individual Insurance Market be Increased for People Living with HIV? Washington, DC: George Washington University. Levi J, Hidalgo J, Wyatt S. 2000. The Impact of State-by-State Variability in Entitlement Programs on the Ryan White CARE Act and Access to Services for Underserved Populations. Washington, DC: Health Resources and Services Administration. Levi J, Parrish B, Miller V. 2003. Report of the December 10–11, 2002, Quality of Care—Closing the Gap Workshop. Washington, DC: George Washington University Center for Health Services Research and Policy. Lewis CE. 1997. Management of patients with HIV/AIDS: who should care? Journal of the American Medical Association 278(14):1133–1134. Lubinski C, Weddle A, Grayer C. 2002. Medicaid Financing of HIV Care: An analysis of Five State Programs. Paper prepared for the Committee on the Public Financing and Delivery of HIV Care, Institute of Medicine. Washington, DC: Unpublished. Manning WG, Newhouse JP, Duan N, Keeler EB, Leibowitz A, Marquis MS. 1987. Health insurance and the demand for medical care: Evidence from a randomized experiment. American Economic Review 77(3):251–277. Marcus M, Freed JR, Coulter ID, Der-Martirosian C, Cunningham W, Andersen R, Garcia I, Schneider DA, Maas WR, Bozzette SA, Shapiro MF. 2000. Perceived unmet need for oral treatment among a national population of HIV-positive medical patients: social and clinical correlates. American Journal of Public Health 90(7):1059–1063. MedPAC (Medicare Payment Advisory Commission). 2003. Assessing payment adequacy and updating payment for physician services. In: Report to the Congress: Medicare Payment Policy. Washington, DC: Medicare Payment Advisory Commission. Pp. 105–118. Meyerson B, Chu BC, Mills MV. 2003. State agency policy and program coordination in response to the co-occurrence of HIV, chemical dependency, and mental illness. Public Health Reports 118(5):408–414. Morin SF, Sengupta S, Cozen M, Richards TA, Shriver MD, Palacio H, Kahn JG. 2002. Responding to racial and ethnic disparities in the use of HIV drugs: analysis of state policies. Public Health Reports 117(3):263–272. NASTAD (National Alliance of State and Territorial AIDS Directors). 2003. National ADAP Monitoring Project: Annual Report April 2003. [Online]. Available: http://www.nastad.org/ADAP/adap2003.pdf [accessed March 5, 2004]. Newhouse JP and the Insurance Experiment Group. 1993. Free for All? Lessons from the RAND Health Insurance Experiment. Cambridge, MA: Harvard University Press. New York State Department of Health, AIDS Institute. 2003. Designated AIDS Center Program Description and AIDS Intervention Management System, Program Description. New York: New York State Department of Health. Norton S, Zuckerman S. 2000. Trends in Medicaid physician fees, 1993–1998. Health Affairs 19(4):222–232. Perloff JD, Kleteke P, Fossett JW. 1995. Which physicians limit Medicaid participation, and why. Health Services Research 30(1):7–26.

OCR for page 107
Public Financing and Delivery of Hiv/Aids Care: Securing the Legacy of Ryan White Rice T. 2003. The impact of cost containment efforts on racial and ethnic disparities in healthcare: a conceptualization. In: Smedley BD, Stith AY, Nelson AR, eds. Unequal Treatment: Confronting Racial and Ethnic Disparities in Healthcare. Washington, DC: National Academy Press. Pp. 699–721. Rosenbaum S. 2003. Racial and ethnic disparities in healthcare: Issues in the design, structure, and administration of federal healthcare financing programs supported through direct public funding. In: Smedley BD, Stith AY, Nelson AR, eds. Unequal Treatment: Confronting Racial and Ethnic Disparities in Health Care. Washington, DC: National Academy Press. Pp. 664–698. Sambamoorthi U, Walkup J, Olfson M, Crystal S. 2000. Antidepressant treatment and health services utilization among HIV-infected Medicaid patients diagnosed with depression. Journal of General Internal Medicine 15(5):311–320. Santerre RE. 2002. The inequity of Medicaid reimbursement in the United States. Applied Health Economics and Health Policy 1(1):25–32. Schackman BR, Goldie SJ, Weinstein MC, Losina E, Zhang H, Freedberg KA. 2001. Cost-effectiveness of earlier initiation of antiretroviral therapy for uninsured HIV-infected adults. American Journal of Public Health 91(9):1456–1463. Shapiro MF, Ware JE Jr, Sherbourne CD. 1986. Effects of cost sharing on seeking care for serious and minor symptoms. Results of a randomized controlled trial. Annals of Internal Medicine 104(2):246–251. 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):2305–2315. Sloan FJ, Cromwell J, Mitchelle, J. 1978. Private Physicians and Public Programs. Lexington, MA: D.C. Heath and Co. SSA (Social Security Administration). 2004. Supplemental Security Income (SSI): Understanding Supplemental Security Income If You Are Disabled or Blind. [Online]. Available: http://www.ssa.gov/notices/supplemental-security-income/text-disable-ussi.htm [accessed February 3, 2004]. Stone VE, Mansourati FF, Poses RM, Mayer KH. 2001. Relation of physician specialty and HIV/AIDS experience to choice of guideline-recommended antiretroviral therapy. Journal of General Internal Medicine 16(6):360–368. Tuller D. 2001, November 6. HIV practices face grim financial times. The New York Times. p. F6. Turner BJ, Fleishman JA, Wenger N, London AS, Burnam MA, Shapiro MF, Bing EG, Stein MD, Longshore D, Bozzette SA. 2001. Effects of drug abuse and mental disorders on use and type of antiretroviral therapy in HIV-infected persons. Journal of General Internal Medicine 16(9):625–633. Valdez RO. 1986. The Effects of Cost Sharing on the Health of Children. Santa Monica, CA: RAND Corporation. Valenti WM. 2002. The HIV specialist improves quality of care and outcomes. AIDS Reader 12(5):202–205. Westmoreland T. 1999. Medicaid and HIV/AIDS Policy: A Basic Primer. Washington, DC: Henry J. Kaiser Family Foundation. Wong MD, Andersen R, Sherbourne C, Hays RD, Shapiro MF. 2001. Effects of cost sharing on care seeking and health status: results from the Medical Outcomes Study. American Journal of Public Health 91(11):1889–1894. Zuger A, Sharp VL. 1997. ‘HIV specialists’: the time has come. Journal of the American Medical Association 278(14):1131–1132. Zweben JE. 2000. Severely and persistently mentally ill substance abusers: clinical and policy issues. Journal of Psychoactive Drugs 32(4):383–389.