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Suggested Citation:"4 Barriers to HIV Care." Institute of Medicine. 2005. Public Financing and Delivery of HIV/AIDS Care: Securing the Legacy of Ryan White. Washington, DC: The National Academies Press. doi: 10.17226/10995.
×

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.

Suggested Citation:"4 Barriers to HIV Care." Institute of Medicine. 2005. Public Financing and Delivery of HIV/AIDS Care: Securing the Legacy of Ryan White. Washington, DC: The National Academies Press. doi: 10.17226/10995.
×

“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).

Suggested Citation:"4 Barriers to HIV Care." Institute of Medicine. 2005. Public Financing and Delivery of HIV/AIDS Care: Securing the Legacy of Ryan White. Washington, DC: The National Academies Press. doi: 10.17226/10995.
×

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 4-14-5). 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.

Suggested Citation:"4 Barriers to HIV Care." Institute of Medicine. 2005. Public Financing and Delivery of HIV/AIDS Care: Securing the Legacy of Ryan White. Washington, DC: The National Academies Press. doi: 10.17226/10995.
×

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.

Suggested Citation:"4 Barriers to HIV Care." Institute of Medicine. 2005. Public Financing and Delivery of HIV/AIDS Care: Securing the Legacy of Ryan White. Washington, DC: The National Academies Press. doi: 10.17226/10995.
×

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

Suggested Citation:"4 Barriers to HIV Care." Institute of Medicine. 2005. Public Financing and Delivery of HIV/AIDS Care: Securing the Legacy of Ryan White. Washington, DC: The National Academies Press. doi: 10.17226/10995.
×

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.

Suggested Citation:"4 Barriers to HIV Care." Institute of Medicine. 2005. Public Financing and Delivery of HIV/AIDS Care: Securing the Legacy of Ryan White. Washington, DC: The National Academies Press. doi: 10.17226/10995.
×

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.

Suggested Citation:"4 Barriers to HIV Care." Institute of Medicine. 2005. Public Financing and Delivery of HIV/AIDS Care: Securing the Legacy of Ryan White. Washington, DC: The National Academies Press. doi: 10.17226/10995.
×

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).

Suggested Citation:"4 Barriers to HIV Care." Institute of Medicine. 2005. Public Financing and Delivery of HIV/AIDS Care: Securing the Legacy of Ryan White. Washington, DC: The National Academies Press. doi: 10.17226/10995.
×

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.

Suggested Citation:"4 Barriers to HIV Care." Institute of Medicine. 2005. Public Financing and Delivery of HIV/AIDS Care: Securing the Legacy of Ryan White. Washington, DC: The National Academies Press. doi: 10.17226/10995.
×

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.

Suggested Citation:"4 Barriers to HIV Care." Institute of Medicine. 2005. Public Financing and Delivery of HIV/AIDS Care: Securing the Legacy of Ryan White. Washington, DC: The National Academies Press. doi: 10.17226/10995.
×

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).

Suggested Citation:"4 Barriers to HIV Care." Institute of Medicine. 2005. Public Financing and Delivery of HIV/AIDS Care: Securing the Legacy of Ryan White. Washington, DC: The National Academies Press. doi: 10.17226/10995.
×

RYAN WHITE CARE ACT

Although the CARE Act is designed specifically for people with HIV disease, clients face challenges in accessing CARE Act services. Access to life-extending comprehensive antiretroviral therapy and primary care, for example, varies significantly by state and city of residence (Table 4-2). In North Carolina, people with HIV and incomes up to 125 percent of the federal poverty level (FPL) are eligible for ADAP services, while residents in New Jersey may qualify with incomes up to 500 percent of the FPL. Other states have specific income eligibility limits, such as less than $50,000 in Massachusetts and less than $30,000 in Pennsylvania (Kates, 2004).

Primary care access may vary from city to city and state to state depending on planning council and state funding allocations. Likewise, substantial state variation occurs in the types of drugs covered, the number of prescriptions provided through ADAP, and the capacity of the ADAP program to assist individuals who need HAART. States such as Louisiana, Nebraska, and Utah provide access to fewer than 20 drugs. Other states—including New York (463 drugs), Missouri (270), Connecticut (170), and California (144)—provide access to a larger number of drugs through their ADAP formularies, while Massachusetts and New Jersey have open or unrestricted ADAP formularies.

Limitations in ADAP formularies may have important health consequences. The care of HIV disease often requires numerous medications for complicating conditions or symptoms, in addition to antiretroviral drugs. Ceilings on the number and type of prescription drugs allowed may force dangerous choices concerning this essential element of care. With antiretroviral drugs, effective continuation of clinical benefit often requires replacing drugs in the regimen because of complex patterns of resistance and intolerance. Optimum outcome can be seriously compromised if the provider is limited in choosing among these crucial drugs because delays in controlling viral growth can allow rapid resistance and, ultimately, clinical failure.

The number of people living with HIV/AIDS continues to grow, as does the cost of care and the demand for CARE Act services. As a discretionary grant program, the CARE Act depends on annual appropriations by Congress (and often by states and municipalities). CARE Act dollars do not necessarily match the need for services, and many grantees have been unable to serve all those in need. This is a particular problem for ADAP. In June 2003, many Ryan White-funded ADAP programs reported budget shortfalls and had to develop or implement plans to restrict access through waiting lists (nine states) or caps on enrollment (four states) and/or limit benefits available to individuals already in the program (three states) (NASTAD, 2003).

Suggested Citation:"4 Barriers to HIV Care." Institute of Medicine. 2005. Public Financing and Delivery of HIV/AIDS Care: Securing the Legacy of Ryan White. Washington, DC: The National Academies Press. doi: 10.17226/10995.
×

CARE Act programs and services vary across the country because of local flexibility in program design, different levels of CARE Act funding, and access to other programs such as Medicaid (see Table 3-2). All states receive Title II HIV Care formula grants for ADAP and health care and support services, but some states receive additional CARE Act funding through other CARE Act programs. Nearly all states also receive some Title III Early Intervention Services (EIS) discretionary grants to expand the service capacity of organizations providing primary care services, but some states have more than one grantee (New York, 41 grantees; California, 30; Florida, 19; Texas, 9; Michigan, 4). Twenty-eight states/territories have a number of Eligible Metropolitan Areas (EMAs) and receive additional funding under the Title I Emergency Relief Grant program. Some states are home to some of the 90 grantees who receive funding under Title IV for coordinated services and access to research for women, infants, children, and youth (not shown in Table 3-2). Furthermore, residents with HIV in 37 states have an opportunity to continue health coverage that otherwise might be terminated under the Ryan White Health Insurance Continuation Program (Kates, 2004).

Available CARE Act funds vary in different areas of the country; thus, there is wide variation in the state per capita allocation of CARE Act dollars, a variation that has raised important issues about funding equity. In 2000, a General Accounting Office study found substantial differences in funding among states. In particular, per capita allocations differed significantly between states with an EMA and those without one. States with no eligible EMA received an average of $3,340 per capita for persons with HIV. States with more than 75 percent of their AIDS cases in an EMA averaged $4,954 per AIDS case, nearly 50 percent more than those states without an EMA (GAO, 2000). States with even higher numbers of AIDS cases (more than 90 percent) in EMAs, such as California and New York, received nearly $5,240 per case. States with EMAs receive more funding because AIDS cases are counted twice under Title I and Title II formulas. GAO called for Congress to phase out the “double counting” of EMA AIDS cases to improve equity in the distribution of CARE Act funds. Subsequent changes in the formula have reduced these inequities, but others remain.8

8  

In allocating CARE Act funds, the Health Resources and Services Administration (HRSA) currently uses a “hold harmless” provision that curtails the extent to which CARE Act funds can decline from one period to the next within an EMA. Note that all funds retained by EMAs under such provisions are in effect funds denied to other EMAs and their HIV-infected populations. According to a recent Institute of Medicine (IOM, 2003) report, EMAs would observe a 2.6 percent increase in their allocation if the “hold-harmless” provision currently in effect for San Francisco was removed.

Suggested Citation:"4 Barriers to HIV Care." Institute of Medicine. 2005. Public Financing and Delivery of HIV/AIDS Care: Securing the Legacy of Ryan White. Washington, DC: The National Academies Press. doi: 10.17226/10995.
×

TABLE 4-2 State Variations in Ryan White Programs

State/Territory

Eligibility, %FPL, June 2003,

ADAP Number of Drugs on Formulary, June 2001

Waiting List or Other Restriction, June 2001 16 states

Other Ryan White Title I EMA, 2001, 28 states, (51 EMAs)

Title III EIS Site, 2001, 50 States (310 EIS)

Health Insurance Program, 2001, 37 States

Alabama

250

26

Waiting list

Yes

Alaska

300

62

Capped enrollment

Yes

Yes

Arizona

300

27

Yes

Yes

Arkansas

300

43

Capped enrollment

Yes

California

400

144

Yes

Yes

Yes

Colorado

300

40

Waiting list

Yes

Yes

Yes

Connecticut

400

170

Yes

Yes

Delaware

500

137

Yes

Yes

District of Columbia

300

65

Yes

Yes

Florida

350

53

Yes

Yes

Yes

Georgia

300

47

Yes

Yes

Yes

Hawaii

400

85

Yes

Yes

Idaho

200

35

Capped enrollment

Yes

 

Illinois

400

67

Yes

Yes

Yes

Indiana

300

67

Waiting list

Yes

Yes

Iowa

200

32

Yes

Yes

Kansas

300

47

Yes

Yes

Yes

Kentucky

300

30

Waiting list

Yes

Yes

Louisiana

200

18

Yes

Yes

Yes

Maine

300

38

Yes

Maryland

400

85

Yes

Yes

Yes

Massachusetts

<$50,000/yr

Open

Yes

Yes

Yes

Michigan

450

160

Yes

Yes

Yes

Minnesota

300

112

Yes

Yes

Yes

Suggested Citation:"4 Barriers to HIV Care." Institute of Medicine. 2005. Public Financing and Delivery of HIV/AIDS Care: Securing the Legacy of Ryan White. Washington, DC: The National Academies Press. doi: 10.17226/10995.
×

Mississippi

400

43

Yes

Missouri

300

270

Yes

Yes

Yes

Montana

300

49

Waiting list

Yes

Yes

Nebraska

200

18

Waiting list

Yes

Yes

Nevada

400

55

Yes

Yes

Yes

New Hampshire

300

32

Yes

Yes

New Jersey

500

Open

Yes

Yes

Yes

New Mexico

300

60

Yes

Yes

New York

<$44,000/yr

463

Yes

Yes

Yes

North Carolina

125

51

Capped enrollment

Yes

North Dakota

400

86

Ohio

300

69

Yes

Yes

Yes

Oklahoma

200

65

Other

Yes

Oregon

200

56

Waiting list

Yes

Yes

Yes

Pennsylvania

<$30,000/yr

69

Yes

Yes

Rhode Island

400

57

Yes

Yes

South Carolina

300

48

Yes

Yes

South Dakota

300

41

Waiting list

Yes

Yes

Tennessee

300

43

Yes

Yes

Texas

200

36

Antiretroviral restrictions

Yes

Yes

Yes

Utah

200

18

Yes

Yes

Vermont

200

69

Yes

Yes

Virginia

300/333

51

Yes

Yes

Wash.ington

300

137

Other

Yes

Yes

Yes

West Virginia

250

27

Waiting list

Yes

Yes

Yes

Wisconsin

300

43

Yes

Yes

Yes

Wyoming

200

51

Other

Puerto Rico

Certified as indigent

115

Yes

Yes

Virgin Islands

200

26

Yes

Guam

200

26

SOURCE: Kates, 2004 .

Suggested Citation:"4 Barriers to HIV Care." Institute of Medicine. 2005. Public Financing and Delivery of HIV/AIDS Care: Securing the Legacy of Ryan White. Washington, DC: The National Academies Press. doi: 10.17226/10995.
×

An Institute of Medicine (IOM) Committee on the Ryan White CARE Act: Data for Resource Allocation, Planning, and Evaluation, recently reported on the continuing inequities in Ryan White funding by state, as noted earlier by GAO (IOM, 2003). Based on an analysis of characteristics associated with Fiscal Year (FY) 2001 CARE Act funding, the Committee found that the presence of an EMA is associated with a significant reduction in Title II funding, but a significant increase in overall CARE Act funding. For example, a state with 1,000 estimated living cases entirely concentrated in an EMA receives approximately $1,814,000 more than an otherwise comparable non-EMA state with the same number of estimated living cases of HIV/AIDS. The Committee also found that Southern states receive about $318 less per case of HIV/AIDS than non-Southern states.

Because the Ryan White CARE Act program wraps around other federal and state programs, Medicaid in particular, CARE Act spending is highly influenced by state Medicaid programs. A review of the impact of state-by-state variability in entitlement programs on the CARE Act and access to services found that the relative generosity of a state’s Medicaid program affects the spending priorities made by states with Title I programs. States with generous Medicaid programs tend to spend greater levels of CARE Act funds on support services and less on primary care than states with less generous Medicaid programs (Levi et al., 2000). Moreover, states with Medicaid programs that have restrictive eligibility and/or low generosity rankings were more likely to have non-income-related restrictions on access to ADAP. A correlation between ADAP income eligibility criteria and Medicaid income criteria was not found. The study also found that state Medicaid programs had little impact on Title II spending in part because ADAP funds dominate their grants.

Program Data and Accountability

One of the Committee’s primary objectives was to understand the accomplishments of the Ryan White CARE Act program as it is currently configured, and to identify areas for improvement, such as gaps in ensuring medical care to persons living with HIV. However, the Committee found substantial difficulties in gaining an adequate level of understanding of the current program, especially for Title I spending. After nearly 15 years and billions of dollars spent in the program, an unduplicated count of beneficiaries does not exist except for HRSA’s Client Demonstration Project, which collects unduplicated data for 33,000 of the 500,000 clients estimated to be served by the program. Current HRSA data collection efforts on EMA spending rely on broad categories of reporting (e.g., primary care, substance abuse services, case management services), which do not allow for a precise understanding of how Title I dollars are spent. In testimony before

Suggested Citation:"4 Barriers to HIV Care." Institute of Medicine. 2005. Public Financing and Delivery of HIV/AIDS Care: Securing the Legacy of Ryan White. Washington, DC: The National Academies Press. doi: 10.17226/10995.
×

the Committee, it was noted that EMAs may not use consistent approaches in classifying service programs by these HRSA categories, thus frustrating attempts to compare spending priorities among EMAs. Furthermore, meaningful or systemic outcome measures have not yet been developed for the CARE Act program.

The IOM Committee on the Ryan White CARE Act: Data for Resource Allocation, Planning, and Evaluation explored a number of data issues as part of its review. Among its findings, the Committee noted that not all states were equally capable of providing high-quality data on HIV infection for planning purposes as required by the 2000 reauthorization of the CARE Act. The Committee also found significant variability in the data sources and measures, and the quality of those data sources and measures, used by grantees to describe their severity of need as part of the Title I Supplemental award application. This part of the application is intended to assist HRSA direct funds to areas in the greatest need of financial assistance. More troubling, however, was the Committee’s finding that the Title I supplemental awards are highly correlated with their Title I formula base award, which is based on cumulative AIDS cases (87 percent correlation). The Committee recommended that the severity of need portion of the supplemental award application should be based primarily on a small number of quantitative measures and that the locally defined need be described in a short narrative by the applicant. The Committee also recommended that the quantitative measures receive greater weight.

As part of its review, the Committee also assessed data efforts to measure quality. Based on its review, the Committee found that HRSA and Ryan White CARE Act-funded clinics and programs are doing an admirable job defining, assessing, and attempting to improve the quality of care received by HIV-infected individuals. Some clinics had established quality management and improvement programs or were in the process of doing so. The Committee made a number of recommendations to further enhance these initiatives (IOM, 2003).

Challenges Faced by Ryan White Planning Bodies

Ryan White Planning Councils and Consortia, the bodies responsible for developing a comprehensive network of services for people with HIV/AIDS, face their own challenges in conducting comprehensive planning for allocating CARE Act funds (Box 4-6). Many of these challenges stem from the inherent difficulties in coordinating with external programs and providers, while others stem from factors intrinsic to the process (Meyerson et al., 2003). The Committee heard testimony on the experience of Ryan White planning bodies from a number of individuals reflecting numerous perspectives (HRSA, state AIDS directors, clients served, planning council

Suggested Citation:"4 Barriers to HIV Care." Institute of Medicine. 2005. Public Financing and Delivery of HIV/AIDS Care: Securing the Legacy of Ryan White. Washington, DC: The National Academies Press. doi: 10.17226/10995.
×

BOX 4-6
Observations on the Day-to-Day Planning Experience

“Replicate this room in your mind over and over and over with people who are very busy, whose pagers are going off constantly, consumers who are ill and have to trot off to the bathroom on a regular basis and so on. That is the environment, and there are always deadlines that have to be met. The needs assessment has to be approved. Has anyone read it? No. Well, let’s go read it really quick. We have to find out the latest epidemiologic data so that we can make our decisions. A few slide shows, well, okay, we kind of think we understood what they said, but no one trained us in epidemiologic analysis, but tell us what we are supposed to do.

“We have to get the money out. It is going to take X number of weeks for a city to get the money through the pipeline. So, we have to hurry, hurry, hurry. Oh, we don’t have enough money. We have to shift our priorities. Somebody didn’t take the money we have offered. We have to realign everything quickly, a tremendous amount of deadlines. Lots of key representatives not showing up to help inform the process, to be able to say, oh, in Medicaid such and such is happening.

“That is the sort of normal day-to-day planning process. It is very time consuming. It has become increasingly politicized.

“I guess the other thing to know is, you [the Committee] heard about Title I principally, and some Title II planning. Many of those planning processes sort of run in parallel, but don’t interconnect very well. Particularly in states with lots of Title I planning processes going on, it is very hard to coordinate that, to build a system that makes sense, [where] you can finance it with a public financing system that will work, that you can get funded in the larger legislative environment.

“So, as you can see, this sort of systemic planning process is complicated. What has resulted is an incredibly widely divergent patchwork soup, a conglomeration, muddle, of different priorities, allocation strategies from state to state, from city to city. Even adjoining and very closely located communities will set priorities for fairly similar populations that are widely divergent.”


SOURCE: Researcher, Testimony before the Institute of Medicine, April 17, 2002.

members, and researchers).9 Some of the key challenges raised included managing coordination among the various service providers and payers. Coordination with the state Medicaid program was identified as a specific problem, as was the coordination with substance abuse providers. Coordination among the different Ryan White program Titles (e.g., coordination between Title I and Title II) was also noted as difficult. Other areas that posed problems were the varying degrees of participation of planning body

9  

Testimony was provided to the Committee on Public Financing and Delivery of HIV Care at an April 2002 meeting.

Suggested Citation:"4 Barriers to HIV Care." Institute of Medicine. 2005. Public Financing and Delivery of HIV/AIDS Care: Securing the Legacy of Ryan White. Washington, DC: The National Academies Press. doi: 10.17226/10995.
×

members, the choice by some planning bodies to allocate funds in areas that are not consistent with assessed needs, institutional inertia in changing a planning body’s past allocation decisions, and perceived conflict of interest among planning council members whose agencies receive CARE Act funding.

Consistent with these challenges, the Committee notes that although the needs of people with HIV have changed dramatically, especially after the advent of HAART in 1996, the allocations by category of funds in the Title I program have largely remained the same. Health care services have not received a substantial increase in Title I funding, even though many people with HIV are not covered by Medicaid, Medicare, or private insurance and lack access to basic HIV primary care and medications. Title I funding for health care services actually decreased from 49 percent in 1996 to 44 percent in 2000, despite rapid advances in HIV care. The Title II ADAP has filled the need for prescription drugs, albeit with a thoroughness that varies among states. Antiretroviral therapy alone, however, is not helpful unless patients have access to experienced physicians who prescribe and manage the therapy. Illustrative comments on some of these challenges are included in the following testimony excerpts.

External Coordination

“Medicaid, the state substance abuse treatment agency, and the Title II consortia do not fully coordinate their programs or their funding as outlined in the EMA’s plan. So, here we are, writing plans that are, I hope, realistic most of the time and evidence based, as much as we can, and calling for other systems and other players and other parties to do things. They say they will. We know they have the plan. We train them on it. We shared it with them and maybe trained them on it and maybe helped with it, but then nothing happens with it on their side” (planning council representative).


“Issues related to HIV service delivery and financing are not commonly a major consideration in the planning, design, and implementation of broader public financing. Broad policy issues are also not within the authority of HIV planning bodies or CARE Act grantees” (researcher).

Internal Planning Body Collaboration and Functioning

“They [council members] come to the table with varying degrees of planning experience. Some are quite sophisticated and professional and they do it every day. A third are consumers, who are living with HIV and have varying degrees of experience and exposure to planning, to all

Suggested Citation:"4 Barriers to HIV Care." Institute of Medicine. 2005. Public Financing and Delivery of HIV/AIDS Care: Securing the Legacy of Ryan White. Washington, DC: The National Academies Press. doi: 10.17226/10995.
×

kinds of activities that are associated with this process” (planning council representative).


“Without levels of meaningful participation of all the mandated members, there are missed opportunities. Some voices aren’t at the table that really should be…. By meaningful, I mean anything from like a government official who doesn’t come to the meeting or [is] named to the planning council and [doesn’t] show up ever, or meaningful meaning that the person isn’t trained well enough and isn’t comfortable enough to really bring [his or her] expertise into the situation. That, I think, is more solvable than the other. The other is sort of more difficult. Lack of time, lack of data, lack of data on time. We are always feeling the ‘lack of data disease,’ I call it. That is a challenge that seems to be quite pervasive” (planning council representative).


“Participation in HIV care planning efforts [is] reported to be extremely time consuming, politicized, polarizing, [and] of limited direct benefit to the operations of HIV care programs, and distracts care providers from their patient or client responsibilities” (researcher).


“HIV planning tends to be specific to individual Titles, sometimes with poor communication between grantees of various Titles” (researcher).

Evaluation of Processes and Outcomes

“We have seen some variation [in allocation of funds], what goes to primary care, for medication, for case management. We have seen over the years some changes in home and community-based services, dental care, and even substance abuse treatment services. There are some EMAs where primary care is primarily paid by another source. So, they have decided—rightly so—not to focus CARE Act dollars to support primary care, but to focus those dollars on other supportive services that aren’t covered. Rightly or wrongly, the planning council has made those decisions to meet the needs of consumers. We have been, for the last several years, pushing people to provide more dollars toward primary care and medications because we now know they are a major benefit. That has met with some resistance from planning councils” (HRSA representative).


“We continue to look at what the results are [allocation decisions], and we will raise questions internally if we think that some of the results are way off base. Individual project officers who review applications on an annual basis, in fact, can and have gone back to planning councils and

Suggested Citation:"4 Barriers to HIV Care." Institute of Medicine. 2005. Public Financing and Delivery of HIV/AIDS Care: Securing the Legacy of Ryan White. Washington, DC: The National Academies Press. doi: 10.17226/10995.
×

asked, ‘Why did you make this decision or how did you get there?’ When we have looked at some of our applications in a comprehensive way, we find that, even when there is a needs assessment and there are good epidemiologic data that say the epidemic is here, they [project officers] may see a result [an allocation decision] that is way out in left field. That may be simply because there is resistance to change the current system because of where dollars are flowing and who is getting what, and we recognize that that may be happening in several places” (HRSA representative).

Impact on Clients

“The biggest concerning gap is the disjointment in all services. Whenever I had to implement another service, if it wasn’t through a case manager, it started a process all over again. Once into care, I think the system should be single access (via one case manager). Then I would have one case manager instead of 18” (client).


“Comorbidity factors, as far as people on drugs…one of the biggest things I can remember, even in mental health, is that I was going through the ads in the papers and tearing out all the pharmaceutical ads that showed side effects, to take this to my psychiatrist so that we didn’t have a conflict between the medicines she was giving and my HAART medications…. She didn’t know what HAART was. I had to literally make a scrapbook and take it to my psychiatrist and say, ‘This is what I am taking.’ Eventually, even that, getting those two connected [mental health and HIV care providers] is something that is very well needed, that all parties talk together and education in [vocational] rehab and all of those services. It would ease the system tremendously” (client).

COORDINATION OF CARE

Previous sections of this report described the various programs that finance the care of individuals with HIV/AIDS and their requirements for eligibility and benefits. Earlier sections of this chapter identify a number of barriers associated with each program. This section briefly describes how these programs interact in very complex ways that create barriers for coordination of services and care management.

Eichner (2001), a researcher at the National Academy of Social Insurance, conducted a case study analysis that described the complexity of coordinating health coverage for Medicare enrollees with HIV/AIDS in the state of California. Eichner identified the four most common ways (there were many permutations) Medicare enrollees pay for their health care.

Suggested Citation:"4 Barriers to HIV Care." Institute of Medicine. 2005. Public Financing and Delivery of HIV/AIDS Care: Securing the Legacy of Ryan White. Washington, DC: The National Academies Press. doi: 10.17226/10995.
×

Scenario 1: Medicare + Medi-Cal10 (dual eligible)

Scenario 2: Medicare + Medi-Cal with share of cost11 +Ryan White ADAP

Scenario 3: Medicare + Medi-Cal + Private Insurance12 + Ryan White ADAP

Scenario 4: Medicare HMO13 + Ryan White ADAP


Findings from Eichner’s case study suggest that the multiple programs needed to provide complex health coverage result in a fragmented and complex conglomeration. From the standpoint of a Medicare beneficiary with HIV/AIDS, the Medicare benefit package is incomplete and services from other programs must be sought to build a more rounded package of benefits. However, lack of coordination can exacerbate the difficulties of navigating the “system.” Coordination was hampered by the following: (1) multiple program administration agencies: two federal agencies (CMS and HRSA) and the state, (2) some programs are managed by separate divisions within an agency (Medicare and Medicaid), (3) programs lack coordination with regard to eligibility requirements and benefits, (4) the roles of agencies managing a single program lack clarity as in the case of SSA and CMS regarding Medicare, (5) some individuals move among programs as their circumstances change, and (6) health coverage options are intertwined with income and other related benefits (Social Security Disability Income and Social Security Income).

Interviews with program staff and others from 37 sites located in San Francisco, Los Angeles, and Kern counties noted that benefits counseling was a crucial service for coordinating access to programs. This service was primarily provided by AIDS organizations and was funded in part by AIDs organizations’ general funds, Ryan White grants, and other grants.

The need for coordination is not a new issue for programs that provide service for individuals with HIV/AIDS. In 1996, amendments of the Ryan White CARE Act recognized that there was a need for coordination between the CARE Act program and Medicaid. Requirements for coordination were established that placed a representative from the state Medicaid agency on the Ryan White Planning Council associated with the Title I program. In a similar action to foster coordination, the Centers for Medicaid & Medicare (then the Health Care Financing Administration) directed a letter to State

10  

California’s Medicaid program.

11  

Medicare enrollees with incomes above the MediCal limits but who have high medical expenditures (within asset limits) must pay some share of cost.

12  

Private insurance associated with former employment or individually-purchased policy.

13  

Enrollees in a Medicare HMO that may provide limited HIV-related drugs or copayments for drugs.

Suggested Citation:"4 Barriers to HIV Care." Institute of Medicine. 2005. Public Financing and Delivery of HIV/AIDS Care: Securing the Legacy of Ryan White. Washington, DC: The National Academies Press. doi: 10.17226/10995.
×

Medicaid directors (CMS, 1998) to implement strategies to improve coordination between the two programs. As stated in the letter, “There are considerable opportunities for the Medicaid and CARE Act programs to work together to effectively coordinate the services each program provides. … Coordination between Medicaid and CARE Act programs and their providers can eliminate duplication of services, save the States’ and the Ryan White Program’s limited funds, and ultimately serve individuals with HIV more effectively and efficiently.”

Since the promulgation of the CARE Act Amendments and the CMS directive to state Medicaid directors, individuals with HIV/AIDS continue to wrestle with the coordination of multiple systems, programs, and benefits.

ACCESS BARRIERS

Barriers that reduce or restrict access to care are created by the financing and organization of care, characteristics of the individuals including comorbidities, and characteristics of the providers. These problems were examined by the HIV Cost and Services Utilization Study (HCSUS) conducted in the late 1990s. HCSUS remains the only nationally representative sample of HIV-infected individuals that can provide an overview of the problems faced in accessing HIV care. A number of other studies also address barriers to care (Morin et al., 2002; Cook et al., 2002; Turner et al., 2001; Sambamoorthi et al., 2000).

The HCSUS study found large variations in insurance coverage for HIV infection, in part reflecting the relative restrictions on the Medicaid programs in different states. Overall, 20 percent of adults in care for HIV lacked health insurance, 50 percent received care through Medicaid and Medicare (about 15 percent of these had both Medicare and Medicaid), and 31 percent received care through private insurance. Geographic differences were also quite striking: the proportion uninsured was 11 percent in the Northeast, compared to 30 percent in the South. In the Northeast, 50 percent of patients had Medicaid as primary payer, compared to 28 percent in the South (Bozzette et al., 1998).

HCSUS also demonstrated that there were substantial disparities in treatment across affected groups. Although disparities decreased as the decade progressed, blacks, women, the uninsured, and Medicaid beneficiaries all were less likely to receive protease inhibitor therapy when it became the standard of care (Shapiro et al., 1999). Medicaid insurance also continued to predict a lower likeliness of receiving HAART more than two years into its availability (Cunningham et al., 2000). With respect to access to experimental drug therapy, Gifford et al. (2002) found that blacks and Hispanics were less likely to have received experimental HIV therapy or to have participated in an HIV clinical drug trial, and that these findings could

Suggested Citation:"4 Barriers to HIV Care." Institute of Medicine. 2005. Public Financing and Delivery of HIV/AIDS Care: Securing the Legacy of Ryan White. Washington, DC: The National Academies Press. doi: 10.17226/10995.
×

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

Suggested Citation:"4 Barriers to HIV Care." Institute of Medicine. 2005. Public Financing and Delivery of HIV/AIDS Care: Securing the Legacy of Ryan White. Washington, DC: The National Academies Press. doi: 10.17226/10995.
×

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).

Suggested Citation:"4 Barriers to HIV Care." Institute of Medicine. 2005. Public Financing and Delivery of HIV/AIDS Care: Securing the Legacy of Ryan White. Washington, DC: The National Academies Press. doi: 10.17226/10995.
×
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

Suggested Citation:"4 Barriers to HIV Care." Institute of Medicine. 2005. Public Financing and Delivery of HIV/AIDS Care: Securing the Legacy of Ryan White. Washington, DC: The National Academies Press. doi: 10.17226/10995.
×

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-

Suggested Citation:"4 Barriers to HIV Care." Institute of Medicine. 2005. Public Financing and Delivery of HIV/AIDS Care: Securing the Legacy of Ryan White. Washington, DC: The National Academies Press. doi: 10.17226/10995.
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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

Suggested Citation:"4 Barriers to HIV Care." Institute of Medicine. 2005. Public Financing and Delivery of HIV/AIDS Care: Securing the Legacy of Ryan White. Washington, DC: The National Academies Press. doi: 10.17226/10995.
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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.

Suggested Citation:"4 Barriers to HIV Care." Institute of Medicine. 2005. Public Financing and Delivery of HIV/AIDS Care: Securing the Legacy of Ryan White. Washington, DC: The National Academies Press. doi: 10.17226/10995.
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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.

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Suggested Citation:"4 Barriers to HIV Care." Institute of Medicine. 2005. Public Financing and Delivery of HIV/AIDS Care: Securing the Legacy of Ryan White. Washington, DC: The National Academies Press. doi: 10.17226/10995.
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Page 138
Suggested Citation:"4 Barriers to HIV Care." Institute of Medicine. 2005. Public Financing and Delivery of HIV/AIDS Care: Securing the Legacy of Ryan White. Washington, DC: The National Academies Press. doi: 10.17226/10995.
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Page 139
Suggested Citation:"4 Barriers to HIV Care." Institute of Medicine. 2005. Public Financing and Delivery of HIV/AIDS Care: Securing the Legacy of Ryan White. Washington, DC: The National Academies Press. doi: 10.17226/10995.
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Page 140
Next: 5 Options for Financing and Delivering HIV Care »
Public Financing and Delivery of HIV/AIDS Care: Securing the Legacy of Ryan White Get This Book
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Each year it is estimated that approximately 40,000 people in the U.S. are newly infected with HIV. In the late 1990s, the number of deaths from AIDS dropped 43% as a result of highly active antiretroviral therapy. Unfortunately, the complex system currently in place for financing and delivering publicly financed HIV care undermines the significant advances that have been made in the development of new technologies to treat it. Many HIV patients experience delays in access to other services that would support adhering to treatment. As a result, each year opportunities are missed that could reduce the mortality, morbidity, and disability suffered by individuals with HIV infections.

Public Financing and Delivery of HIV/AIDS Care examines the current standard of care for HIV patients and assesses the extent the system currently used for financing and delivering care allows individuals with HIV to actually receive it. The book recommends an expanded federal program for the treatment of individuals with HIV, administered at the state level. This program would provide timely access and consistent benefits with a strong focus on comprehensive and continuous care and access to antiretroviral therapy. It could help improve the quality of life of HIV/AIDS patients, as well as reduce the number of deaths among those infected.

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