3
Current Financing and Delivery of HIV Care

People living with HIV/AIDS rely on a variety of private and public payment mechanisms to obtain care. Thirty-one percent of people living with HIV/AIDS are covered by private insurance; the remaining individuals are covered through federal programs such as Medicaid and Medicare or are uninsured (Kates, 2004) (see Figure 3-1).1 Programs such as the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act program, community and migrant health centers, private free clinics, and public hospitals provide a health care safety net for many individuals with HIV/AIDS who are uninsured and/or underinsured.

The federal programs that provide care to people living with HIV/AIDS operate through two financing mechanisms: mandatory spending programs, in the form of entitlements to the individual and to the states, and discretionary annual funding for specific services. These financing mechanisms have significant implications for individuals and governments in terms of stability of financing, access to care, durability of services, and costs. In 2002, 72 percent of the $8.7 billion spent on health care and related social support services for people with HIV/AIDS was spent under mandatory or entitlement programs. In fiscal year 2002, a total of $14.7 billion was spent by the federal government on HIV/AIDS medical care, research, prevention, and other activities (see Figure 3-2).

1  

Portions of this chapter draw heavily from a paper commissioned by the Institute of Medicine Committee on Public Financing and Delivery of HIV/AIDS Care. The paper was written by Jennifer Kates, Kaiser Family Foundation, and is included in its entirety in Appendix D.



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Public Financing and Delivery of Hiv/Aids Care: Securing the Legacy of Ryan White 3 Current Financing and Delivery of HIV Care People living with HIV/AIDS rely on a variety of private and public payment mechanisms to obtain care. Thirty-one percent of people living with HIV/AIDS are covered by private insurance; the remaining individuals are covered through federal programs such as Medicaid and Medicare or are uninsured (Kates, 2004) (see Figure 3-1).1 Programs such as the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act program, community and migrant health centers, private free clinics, and public hospitals provide a health care safety net for many individuals with HIV/AIDS who are uninsured and/or underinsured. The federal programs that provide care to people living with HIV/AIDS operate through two financing mechanisms: mandatory spending programs, in the form of entitlements to the individual and to the states, and discretionary annual funding for specific services. These financing mechanisms have significant implications for individuals and governments in terms of stability of financing, access to care, durability of services, and costs. In 2002, 72 percent of the $8.7 billion spent on health care and related social support services for people with HIV/AIDS was spent under mandatory or entitlement programs. In fiscal year 2002, a total of $14.7 billion was spent by the federal government on HIV/AIDS medical care, research, prevention, and other activities (see Figure 3-2). 1   Portions of this chapter draw heavily from a paper commissioned by the Institute of Medicine Committee on Public Financing and Delivery of HIV/AIDS Care. The paper was written by Jennifer Kates, Kaiser Family Foundation, and is included in its entirety in Appendix D.

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Public Financing and Delivery of Hiv/Aids Care: Securing the Legacy of Ryan White FIGURE 3-1 People living with HIV/AIDS in regular care: estimated insurance coverage, 1996. SOURCE: Bozzette et al., 1998. FIGURE 3-2 Federal spending on HIV/AIDS by type (mandatory or discretionary), 1995–2002. SOURCE: Kates, 2004.

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Public Financing and Delivery of Hiv/Aids Care: Securing the Legacy of Ryan White FEDERAL FINANCING OF HIV CARE Medicaid Medicaid, Title XIX of the Social Security Act, is the largest source of public financing for HIV/AIDS care in the United States. Created in 1965, Medicaid is a jointly funded, jointly administered federal–state health insurance program for low-income people who meet one or more of several categorical eligibility requirements, including disability. The program is administered through the Centers for Medicare & Medicaid Services (CMS). Through Medicaid, the federal government provides matching funds to states that meet certain minimum federal standards in operating their Medicaid programs. States have broad flexibility in designing their Medicaid programs, and consequently there is significant variation in eligibility, benefits, provider payments, and other aspects of the program at the state level (Westmoreland, 1999; Kaiser Commission on Medicaid and the Uninsured, 2001). State Medicaid policies vary considerably even among similar-sized and or adjacent states. Thus, a person who is eligible for Medicaid in one state might not be eligible in another state; and the services provided by one state may differ from those of another state.2 Because many people with HIV/AIDS are low income—or become low income—and disabled, Medicaid is an important source of coverage. In FY 2002, Medicaid spending on AIDS care totaled $7.7 billion, including $4.2 billion in federal dollars and $3.5 billion in state funds (see Figure 3-3). Overall, the program is estimated to cover approximately 44 percent of people with HIV and 55 percent of those living with AIDS (CMS, 2002). Medicaid is also estimated to cover the health care costs of up to 90 percent of children with AIDS (CMS, 2002).3 Among those recently diagnosed with HIV (for whom coverage data were available), more than one-fifth (22 percent) were already covered by Medicaid at the time of diagnosis (Kates et al., 2002). Eligibility To be eligible for Medicaid, a person must meet the categorical and financial eligibility criteria in his or her state’s Medicaid program. Most 2   Horizontal equity problems (across states) exist under the Medicaid program. Some federal policies have attempted to deal with this problem. Federal minimum-income eligibility thresholds for children in all states, for example, have increased interstate equity. However, some variation in eligibility criteria persist because some states exceed minimum standards while others do not (Pernice et al., 2001). 3   Data on federal spending on HIV/AIDS are actuarial estimates developed by CMS.

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Public Financing and Delivery of Hiv/Aids Care: Securing the Legacy of Ryan White FIGURE 3-3 Federal spending on care: Ryan White CARE Act, Medicare, and Medicaid, fiscal years 1995–2002 (in billions). adults with HIV/AIDS who qualify for Medicaid do so because they meet the disability and income and assets criteria of the federal Supplemental Security Income (SSI) program for persons who are aged, blind, or disabled. For purposes of SSI eligibility, a person is disabled if he or she is unable to engage in any gainful activity due to a medically determined physical or mental impairment expected to result in death or last for a continuous period of at least 12 months (Westmoreland, 1999).4 Some states, known as 209(b) states,5 may apply more restrictive eligibility rules under SSI. People with HIV may also qualify for Medicaid through a state’s medically needy program that enables those who meet categorical eligibility requirements, such as disability, to spend-down their incomes to meet their state’s income eligibility threshold, which varies among states. Individuals must also meet a state’s resource test. Benefits Federal rules require states participating in Medicaid to cover a set of mandatory services to eligible people in order to receive federal matching payments (Box 3-1). States may also choose to provide optional services 4   The Social Security Administration’s (SSA) criteria for evaluating HIV infection are not linked to the Centers for Disease Control and Prevention’s (CDC’s) definition of AIDS. SSA determines disability by inability to work; thus, a person with symptomatic HIV infection who can still work may not be eligible for disability (SSA, 2004). 5   States with a 209(b) designation may continue to use their pre-1972 eligibility standards rather than the current federal eligibility standards (Westmoreland, 1999).

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Public Financing and Delivery of Hiv/Aids Care: Securing the Legacy of Ryan White BOX 3-1 Services Provided Under Medicaid Mandatory Services States Must Provide to Qualify for Federal Matching Payments Under Medicaid and Selected Optional Services That May Be Provided Mandatory Services Selected Optional Services Hospital services (inpatient and outpatient) Physician services Laboratory and X-ray services EPSDT (early and periodic screening, diagnosis and treatment services for those under 21 years) Federally qualified health center services Rural health clinic services Family planning services Nursing facility services Home health services Nurse-midwife services Certified pediatric or family nurse practitioner services Prescription drugs Hospice services Case management services Clinic services Preventive services Tuberculosis-related services   SOURCE: Westmoreland, 1999. and receive matching payments. Food and Drug Administration- (FDA) approved prescription drugs are an optional benefit that all states have chosen to provide. Medicaid coverage of prescription drugs includes all FDA-approved highly active antiretroviral therapy (HAART) drugs, but coverage of these drugs is at state option and subject to amount, duration, and scope limits (e.g., limit on the number of prescriptions), nominal copayments for adults, and prior authorization controls. Other optional services that can be important for people with HIV/AIDS include case management, prevention services, tuberculosis-related services, and hospice services. States may also seek waivers to cover certain services that would not otherwise qualify for federal matching funds, and a number have done so (Kates, 2004). Medicare: Coverage for Disabled and Elderly Persons with HIV/AIDS Medicare (Title XVIII of the Social Security Act) is the nation’s federal health insurance program for the elderly and disabled. It was established in

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Public Financing and Delivery of Hiv/Aids Care: Securing the Legacy of Ryan White 1965 and is also administered by CMS. Medicare is an important source of coverage for people with HIV/AIDS who are disabled, have sufficient work history to qualify for disability insurance, and live long enough to qualify for Medicare. Medicare covers an estimated 6 percent of people with HIV/AIDS who are in care (CMS, 2002; Kates, 2004; Bozzette et al., 1998). As people with HIV/AIDS live longer, the number of people with HIV/AIDS on Medicare is expected to grow, and Medicare spending is also expected to increase. Today, Medicare is the second largest source of federal financing of HIV/AIDS care, accounting for $2.1 billion in FY 2002. Medicare spending on HIV/AIDS has roughly doubled since FY 1995, when it was $1 billion (IOM, 2001; CMS, 2002; Kates, 2004). Some individuals with Medicare coverage also qualify for Medicaid because they have low income levels; they are considered to be dual-eligible.6 For these individuals, Medicaid provides varying levels of coverage, including payment of premiums, some cost sharing, coverage of services during the waiting period (for those under 65 years), and coverage of prescription drugs. Eligibility Most Americans ages 65 and older are entitled to Medicare as soon as they are eligible for Social Security payments. People under age 65 who receive Social Security Disability Insurance (SSDI) benefits and individuals with end-stage renal disease may also qualify for Medicare. People with HIV/AIDS who meet SSDI eligibility criteria are eligible for Medicare benefits. The Social Security Administration defines disabled to mean that an individual 18 years or older is unable to engage in any substantial gainful activity due to any medically determinable physical or mental impairment(s) that can be expected to result in death or that has lasted or can be expected to last for a period of not less than 12 months (SSA, 2004). In addition, individuals must have paid Social Security taxes through their workplace for a minimum number of fiscal quarters. Federal law, however, requires a 5-month waiting period after disability determination to receive SSDI benefits and then a 24-month waiting period before an SSDI beneficiary can join Medicare, resulting in a total of 29 months before receipt of health benefits (SSA, 2004; Schietinger and Schecter, 1998). 6   Qualified Medicare Beneficiaries, Specified Low-Income Medicare Beneficiaries, Qualified Individuals, Qualified Disabled and Working Individuals, and Consolidated Omnibus Budget Reconciliation Act (COBRA) Continuation Beneficiaries are dual-eligible for Medicaid.

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Public Financing and Delivery of Hiv/Aids Care: Securing the Legacy of Ryan White Benefits Medicare as it currently exists is composed of three parts (KFF, 2004): Part A covers inpatient hospital services, skilled nursing facilities, home health services, and hospice care. Part B helps pay for the cost of physician services, outpatient hospital services, medical equipment and supplies, and other health services and supplies. Part C allows beneficiaries to choose to enroll in a health maintenance organization or other managed care plan, a preferred provider organization or to chose a medical savings account. Prescription drugs will not be a covered benefit under the Medicare program until January 1, 2006, when Medicare Part D takes effect as established by the Medicare Prescription Drug, Improvement and Modernization Act of 2003 (MPDIM) (PL. 108-173). A number of questions and concerns have already been raised about certain provisions of the legislation, its implementation, and its costs, including particular concerns for individuals who receive services as “dually eligible.” These concerns are related to the range of drugs offered, potential lapses in prescription drug coverage, difficulties navigating the enrollment process, out-of-pocket costs and the associated denial of prescription drugs if co-payment cannot be met. These issues are discussed in Kates (2004) in Appendix D. Ryan White CARE Act Administered by the Health Resources and Services Administration (HRSA), the Ryan White CARE Act was designed to address the gaps in financing care for people with HIV/AIDS and to provide financial support to cities that were bearing a disproportionate burden of the cost of care. The CARE Act is intended to function as payer of last resort—that is, to provide care to individuals who are uninsured or underinsured and cannot cover the costs of care on their own, and who do not have another source of payment for services, public or private, available to them (HRSA, 2002j). Through the CARE Act, cities, states, and other public and private non-profit entities receive funds to develop, coordinate, and operate systems for the delivery of health and support services to medically underserved individuals and families affected by HIV disease.7 The CARE Act has helped to create an AIDS care infrastructure across the country. 7   See Appendix B for an overview of CARE Act funding allocation formulas.

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Public Financing and Delivery of Hiv/Aids Care: Securing the Legacy of Ryan White Ryan White CARE Act Title I and II The CARE Act has several titles and components, which are described in Box 1-1. In FY 2003, federal spending for the CARE Act totaled $2.0 billion; it represents the third largest source of federal funding for HIV care in the United States (HRSA, 2003a). Title I ($626.7 million) and Title II ($1 billion) of the CARE Act provided the largest amount of grant funding to areas, states, and territories in FY 2003. The majority of Title I funds go to health care services, case management, and social support services (HRSA, 2002a). The majority of Title II funding is directed as an earmark to the AIDS Drug Assistance Progam (ADAP) ($714.3 million, a program that provides medications but can also be used to purchase private insurance with drug coverage benefits) (HRSA, 2002b). The remainder of ADAP funds is directed to states ($352.6 million) for services (HRSA, 2002c, 2003a). In recognition of the varying nature of the HIV/AIDS epidemic across the country, CARE Act grantees, including states and cities, are given broad discretion in designing local programs. As a result, there is significant variation in state funding, eligibility, services, and other aspects of CARE Act programs across the country. Other Ryan White CARE Act Programs That Provide Care Although much smaller in scope, three additional CARE Act programs provide funding for care services: Title III-Early Intervention Services, Planning and Capacity Grants (Title III); Title IV-Women, Children, Infants, and Youth (Title IV); and the HIV/AIDS Dental Reimbursement Program (Dental Reimbursement Program). In FY 2003, these programs had a cumulative appropriation of $288.8 million. Title III of the CARE Act funds early-intervention HIV services provided by public and non-profit groups. Early-intervention services include counseling, testing, medical evaluation, primary care, antiretroviral therapies, medical and mental health care, case management, and other services. A smaller proportion of the Title III funds help such groups plan for the development of early-intervention services (one-year grants of $50,000) or build their capacity to provide services (up to $150,000 over a three-year period (HRSA, 2002d). In FY 2003, $200.9 million was appropriated for this program (HRSA, 2003a). Title IV of the CARE Act addresses the specific needs of women, infants, and children and youth living with HIV. Title IV evolved from the Pediatric AIDS Demonstration Program which was established in 1988. The funds cover primary and specialty medical care, psychosocial services, logistical support and coordination, outreach, and case management (HRSA, 2002e). Title IV also provides clients with increased access to HIV/AIDS clinical

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Public Financing and Delivery of Hiv/Aids Care: Securing the Legacy of Ryan White trials and research. In FY 2003, $74.5 million was appropriated for this program (HRSA, 2003a). The Dental Reimbursement Program was added to the CARE Act in 1996. The program provides funding to improve access to oral health care for people with HIV/AIDS by providing reimbursement to educational programs. The funds help to offset the cost of uncompensated dental HIV care provided by the programs (HRSA, 2002f). The program was appropriated $13.4 million in FY 2003 (HRSA, 2003a). In addition to these programs, two additional Ryan White CARE Act programs are designed to assist in improving the quality of care provided by the Ryan White programs and to assist community providers in improving the delivery of care. A total of $60.6 million was appropriated to these programs in FY 2003. The AIDS Education and Training Centers (AETC) programs fund a network of 11 regional centers and associated sites that conduct multidisciplinary education and training for providers who care for persons with HIV/AIDS. The centers are designed to expand the number of providers who can counsel, diagnose, treat, and medically manage individuals with HIV, and who can help prevent high-risk behaviors that transmit HIV (HRSA, 2002g). The program disbursed $35.6 million in FY 2003 (HRSA, 2003a). The Special Projects of National Significance (SPNS) Programs were established to advance knowledge and skills needed to deliver health and support services to underserved populations with HIV infection. SPNS programs evaluate the effectiveness of models of care, support the design of innovative care programs, and help replicate effective models (HRSA, 2002h). Funding for this program is provided through a set-aside from Titles I–V that cannot exceed $25 million (HRSA, 2003). Clients Served by the Ryan White CARE Act CARE Act providers serve an estimated 533,000 individuals each year (HRSA, 2003a).8 CARE Act providers, compared to non-CARE Act providers, typically serve more women, minorities (Ashman et al., 2000), and persons with no insurance (GAO, 2000). CARE Act providers also provide some services to Medicaid-only and dual-eligible beneficiaries whose needs are not met by these programs. Data from HRSA’s Client Demonstration Project present similar findings. The project uses unique identifiers to track the service use of all HIV- 8   It is impossible for HRSA to determine the exact number of clients served because individuals may receive care under several parts of the CARE Act and most grantees do not report unduplicated client-level data.

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Public Financing and Delivery of Hiv/Aids Care: Securing the Legacy of Ryan White infected and -affected clients receiving services from Ryan White CARE Act-funded providers in specific Eligible Metropolitan Areas (EMAs) or states. More than 33,800 clients are tracked in five sites: Colorado; Michigan; Virginia; Orange County, CA; and Los Angeles, CA (HRSA, 2002i). Data from this tracking project indicate that the CARE Act served a much higher proportion of HIV-infected, African-American women than women from other racial/ethnic categories at these sites and that clients who received medical care services from Ryan White CARE Act providers were more likely to have no insurance coverage and less likely to have private insurance than clients who did not receive medical care from CARE Act providers. Eligibility CARE Act services are available to uninsured or underinsured individuals and families living with HIV/AIDS; states and municipalities determine eligibility for these services. Results from a 2000–2001 survey of Title I Planning Councils found that, in nearly all EMAs, medical eligibility required only that an individual be HIV positive. Some EMAs had additional medical eligibility criteria for specific services, for example, Social Security determination of disability to receive home health services. With respect to financial eligibility, at least 20 EMAs reported that they did not have income-related financial eligibility for Title I services. For those EMAs with financial eligibility criteria, the criteria tended to be higher than eligibility levels for Medicaid, and most were at least twice the federal poverty level (i.e., $8,980 for an individual in 2003). Some EMAs allowed client fees for some services. These were likely to be charged to individuals exceeding financial eligibility requirements. Client fees were typically based on a sliding-scale fee schedule (Buchanan, 2002). Benefits The CARE Act primarily funds outpatient care and support services and does not pay for hospitalizations and long-term institutional care (see Table 3-1). Services include outpatient medical and dental care, prescription drugs (through ADAP), case management, home health and hospice care, insurance continuation, and housing, transportation, and nutritional services. Table 3-2 presents the distribution of dollars for CARE Act Titles I and II for Fiscal Years (FY) 1996, 1998, 2000, and 2001. The most notable trends in Title I spending are the level expenditures on health care since 1998 at 44 percent, and fairly level expenditures on case management and support services. Under Title II, spending on support services and case

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Public Financing and Delivery of Hiv/Aids Care: Securing the Legacy of Ryan White TABLE 3-1 Services Available Through Ryan White CARE ACT Title I and II Health Care Services Available Through CARE Act Titles I and II Support Services Available Through CARE Act Titles I and II Ambulatory medical care Medications Dental care Health insurance purchase Home health and hospice care Mental health therapy, counseling Nutritional services Rehabilitation care Substance abuse treatment Treatment adherence and counseling Case management Adoption/foster care assistance Buddy/companion services Client advocacy Counseling Day/respite care Direct emergency assistance Food bank, home meals Health education, risk reduction Housing assistance Outreach Primary care referrals Transportation TABLE 3-2 Percentage Distribution of CARE Act Title I and Title II Funds, FY 1996, 1998, 2000, 2001 Service 1996 1998 2000 2001a Ryan White Program Title I Title II Title I Title II Title I Title II Title I Title II Funding ($ millions) 391.7 260.8 464.8 543.0 546.4 823.8 580.5 845.6 Percentage spent on service category Health care (outpatient medical, dental, home health, hospice care) 49 24 44 11 44 09 44 12 Case management 12 11 11 06 12 05 12 08 Support services 23 12 23 06 27 05 26 07 Medications/ADAP 07 46 12 67 07 71 07 68 Administration, planning, evaluation, and program support 09 07 10 10 10 09 11 07 a The most recent data available is for 2001 (Personal communication, Dr. Richard Conviser, HRSA, December 23, 2003).

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Public Financing and Delivery of Hiv/Aids Care: Securing the Legacy of Ryan White Case Management Services While there is no set definition for “case management,” the Ryan White CARE Act Title I Manual (HRSA, 2001) defines case management for the Title I and Title II programs as: A range of client centered services that link clients with health care, psychosocial and other services to insure timely, coordinated access to medically appropriate levels of health and support services, continuity of care, on-going assessment of the client’s and other family members’ needs and personal support systems, and inpatient case management services that prevent unnecessary hospitalizations or that expedite discharge, as medically appropriate, from inpatient facilities. Key activities include: initial comprehensive assessment of the client’s needs and personal support systems; development of a comprehensive, individualized service plan; coordination of the services required to implement the plan; client monitoring to assess the efficacy for the plan; and periodic re-evaluation and revision of the plan as necessary over the life of the client. May include client-specific advocacy and/or review of utilization of services. More simply put, the main purpose of case management is to coordinate care, decrease barriers to medical and support services, and increase quality of life (HRSA, 2001). Growing evidence shows that HIV-positive individuals who have case managers are more likely to use life-prolonging HIV medications and to have their needs met for income support, health insurance, home health care, and emotional counseling than those without case managers (Katz et al., 2001; McKinney and Marconi, 2002). Specifically, case management was found to have a positive effect on retaining people in appropriate HIV medical care (Conviser and Pounds, 2002; Ashman et al., 2002; Sherer et al., 2002; Messeri et al., 2002; Magnus et al., 2002). In one study, individuals who received case management were more than twice as likely to be retained in appropriate medical care than were those who did not (Messeri et al., 2002). A debate is ongoing, however, about how case management services are best delivered. In one delivery model, case management services are co-located or intensely related to medical care. In another model, services are established in community service organizations that lack tight ties to clinical providers. Many medical providers of HIV services prefer models in which case management services are closely related to primary care, so that these services can directly support treatment adherence. Case management service visits account for the largest number of visits made by Ryan White CARE Act clients under Title I and Title II non-ADAP services (HRSA, 2002j). Case management services are optional services under Medicaid.

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Public Financing and Delivery of Hiv/Aids Care: Securing the Legacy of Ryan White HIV Prevention Services Antiretroviral therapy can help prevent transmission of HIV because it reduces a person’s viral load and renders the person less infectious (Vernazza et al., 1999; Staszewski et al., 1999; Barroso et al., 2000). However, an HIV-infected person receiving antiretroviral therapy can still spread infection to others, thus risk reduction interventions among HIV-infected individuals is considered an important part of overall HIV prevention. The U.S. Preventive Services Task Force Guide to Clinical Preventive Services (1996) makes HIV prevention recommendations for providers in clinical care settings. Specifically, the task force recommends that clinicians take a complete sexual and drug history to help determine patient risk and the appropriate prevention intervention. The recommendations, though, do not target individuals who are already HIV infected and who may still engage in risky behavior. In 1997, a National Institutes of Health consensus statement concluded that there was a need to develop programs to help HIV-infected individuals avoid risky behavior over long periods of time (NIH, 1997). A 2001 Institute of Medicine report, No Time to Lose: Getting More from HIV Prevention, noted this deficiency and recommended that HIV prevention services for HIV-infected persons and those at high risk should be a standard of care in all clinical settings. There is no mandatory or optional Medicaid service category that specifically covers HIV prevention services in the clinical setting (IOM, 2001). More recently, CDC’s Advancing HIV Prevention: New Strategies for a Changing Epidemic identified preventing new infections among persons diagnosed with HIV and their partners as a key element of its new prevention strategy. CDC has made a commitment to publishing (along with other federal agency partners) Recommendations Incorporating HIV Prevention into the Medical Care of Persons with HIV Infection (CDC, 2003c). The literature reports at least two randomized trials for a risk reduction intervention for HIV-positive injection drug users (Kalichman et al., 2001; Margolin et al., 2003). In the first study, HIV-infected individuals were randomly assigned to an intervention to reduce the risk of HIV transmission. The risk reduction intervention resulted in less unprotected intercourse and greater condom use at follow-up. Transmission-risk behaviors with non-HIV-positive sexual partners and estimated HIV transmission rates were also significantly lower for the behavior risk-reduction intervention group. Authors of the second study (Margolin et al., 2003) found that enhancing methadone maintenance with interventions targeting HIV-seropositive injection drug users increases both harm reduction and health promotion behaviors. HRSA, under its CARE Act SPNS program, has two studies underway exploring prevention with HIV-infected persons seen in primary care settings and a demonstration project on prevention for HIV-positive persons (HRSA, 2003a).

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Public Financing and Delivery of Hiv/Aids Care: Securing the Legacy of Ryan White Primary Care Services HIV/AIDS is a complex multi-system illness. Patients with HIV/AIDS require a broad range of services and care from a number of providers. A primary care services approach to managing the complexity of services and providers who provide care to people with HIV infection has been an important foundation of the CARE Act and the federal Medicaid program. Generally, primary care is understood as the provision of integrated, accessible health care services by clinicians who are accountable for addressing a large majority of personal health care needs, developing a sustained partnership with patients, and practicing in the context of family and community (IOM, 1996). The elements of primary care include first contact care, continuity of care or one individual or team of associated individuals serving as the source of care over a defined period of time, comprehensiveness of services and the need to provide them directly or arrange for their provision when needed, and coordination of providers and referral services. The value of primary care for individuals is that it provides a place to which patients can bring a wide range of health problems for appropriate attention, guides patients through the health care system, provides opportunities for disease prevention and health promotion as well as early detection of problems, and helps to build bridges between personal health care services and providers and patients’ families and communities that can assist in meeting the health needs of the patient (IOM, 1996). Under the CARE Act, the primary care approach is used to provide and coordinate providers and such services as diagnostic testing, early intervention and risk assessment, preventive care and screening, practitioner examination, medical history taking, diagnosis and treatment of common physical and mental conditions, prescribing and managing medication therapy, education and counseling on health issues, well-baby care, continuing care and management of chronic conditions, and referral to and provision of specialty care (includes all medical subspecialties) (HRSA, 2003b, 2003c). Primary care services also include primary oral health care. The first signs of HIV infection are often found in the oral cavity. As the disease progresses and the immune system deteriorates, AIDS patients are more susceptible to mouth infections such as oral herpes, fungal diseases, and gum disease. Thus, primary oral care is a critical component of primary care for HIV/AIDS. Coverage for primary care services is mandatory under Medicaid. Primary care services are supported by the CARE Act but are available in varying degrees; services vary significantly from state to state and city to city depending on local resource allocation decisions. Acknowledging that HIV/AIDS patients suffer a high incidence of oral disease and many low-

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Public Financing and Delivery of Hiv/Aids Care: Securing the Legacy of Ryan White income people with HIV need assistance covering their dental costs, the Ryan White HIV/AIDS Dental Reimbursement Program was established in 2000. The program is directed at dental institutions (dental schools, dental hygiene schools, and postdoctoral dental education programs) to cover their non-reimbursed costs of providing oral health care to individuals with HIV. Where HIV/AIDS Patients Receive Care The most comprehensive source of information on the delivery of HIV care comes from the HIV Costs and Service Utilization Study. The survey is based on a representative sample of individuals receiving medical care for HIV infection in January and February of 1996.11 An analysis of survey data found that 30 percent of patients received care at major teaching hospitals, and the balance received care from office-based physicians and community hospitals and clinics. Data also show that one-third of patients made at least one visit to an emergency room and 20 percent were hospitalized every six months. One of the survey’s most disturbing findings underscored the lack of regular care by individuals with HIV infection. Survey results suggest that an estimated two-thirds of HIV-infected adults do not receive medical care on a regular basis. Furthermore, most infected adults who do not receive medical care on a regular basis are in the early stages of disease (Shapiro et al., 1999). With the spread of HIV infection outside large metropolitan areas, the delivery of care in smaller cities and less urbanized areas has become a growing concern. HCSUS data were analyzed to assess the delivery of care in rural areas. Results of the analysis revealed significant disparities between rural and urban areas. Patients in rural HIV care were more likely than patients in urban care to receive care from providers seeing few infected patients, and were also less likely than urban patients to have taken HAART (Cohn et al., 2001). This finding is significant given the recognition that greater physician and hospital experience with HIV/AIDS treatment has been linked to improved outcome—that is, longer survival after AIDS diagnosis (Laine et al., 1998). Other study findings have shown that patients in clinics with HIV expertise rely less on the emergency department for care (Markson et al., 1998). 11   The sample does not include individuals who receive care in the military, prisons, or emergency room departments.

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Public Financing and Delivery of Hiv/Aids Care: Securing the Legacy of Ryan White Findings: Government, through public insurance programs, is responsible for covering the care for half of all individuals with HIV/AIDS. Private insurance provides coverage for 31 percent of all individuals with the disease. A substantial proportion of all individuals with HIV/AIDS—20 percent—are uninsured. Private insurance covers 42 percent of individuals in the early stage of the disease, but only 26 percent of individuals with full-blown AIDS. The Ryan White CARE Act Program provides coverage to individuals who are uninsured or underinsured in other public and private programs. A major shift in the delivery of services, from inpatient hospital and end-of-life social support to outpatient and chronic care, occurred with the discovery of HAART and treatment of HIV/AIDS as a chronic disease. The standard of care for HIV/AIDS includes HAART, other drug therapies that prevent complications and that support retention in care, obstetrics and reproductive health services for HIV-infected women and pediatric care for infants with HIV, primary care services, substance abuse and mental illness treatment, case management services directly related to clinical care, and HIV prevention services. Two-thirds of HIV care takes place in physician offices, community hospitals, and clinics. Many HIV-infected adults do not receive medical care on a regular basis, and many of them are in the early stages of disease. The delivery of HIV care in rural areas may be compromised if physicians lack the expertise that comes with providing care to greater numbers of HIV patients. REFERENCES AHRQ (Agency for Health, Research and Quality). 2004. HCSUS: HIV Cost and Services Utilization Study. Fact sheet. Rockville, MD: Agency for Health Care Policy and Research. [Online]. Available: http://www.ahrq.gov/data/hcsus.htm [accessed January 3, 2004]. Altice FL, Friedland GH. 1998. The era of adherence to HIV therapy. Annals of Internal Medicine 129(6):503–505. APHA (American Public Health Association). 2002. Adherence to HIV Treatment Regimens: Recommendations for Best Practices. Pp. 126–130. [Online]. Available: http://www.apha.org/PPP/HIV/Best_Practices.pdf [accessed March 14, 2004]. Arici C, Ripamonti D, Maggiolo F, Rizzi M, Finazzi MG, Pezzotti P, Suter F. 2002. Factors associated with the failure of HIV-positive persons to return for scheduled medical visits. HIV Clinical Trials 3(1):52–57. Ashman JJ, Conviser R, Pounds MB. 2002. Associations between HIV-positive individuals’ receipt of ancillary services and medical care receipt and retention. AIDS Care 14(Suppl. 1):S109–S118.

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