5
Context of Services for Women and Children Affected by HIV/AIDS

The committee's recommendations must reflect the complex health care system within which they might be implemented. Nations with a more integrated system of health care, universal health insurance, and/or a central organizational body that promulgates and enforces regulations might develop different approaches to the reduction of perinatal HIV transmission than those available in the United States. But in this country, women and children, including those at risk for or with HIV/AIDS, receive their health care from a variety of sources, depending in large part on their economic situation, the availability of providers, and their understanding of and comfort with the health care system in their community. Their care is financed by a mixture of public and/or private insurance and public funds; its content and quality are influenced by public and professional organizations; and oversight and regulation are achieved through a combination of national, state, and local authorities. These characteristics (see Table 5.1) and the fact that the health care system in the United States is undergoing rapid change, contribute to the challenges inherent in implementing the committee's recommendations.

This chapter first examines the community-level sites where women of child-bearing age receive health care and how that care has been supplemented to meet the additional needs of women and children at risk for or with HIV/AIDS. This is followed by a review of the mechanisms for financing health care and of the organizations responsible for developing and implementing policies concerning maternity and HIV services. The chapter analyzes current trends in health care and social services to determine how they may affect access to services important for reducing the risk of perinatal HIV transmission and treating those already



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--> 5 Context of Services for Women and Children Affected by HIV/AIDS The committee's recommendations must reflect the complex health care system within which they might be implemented. Nations with a more integrated system of health care, universal health insurance, and/or a central organizational body that promulgates and enforces regulations might develop different approaches to the reduction of perinatal HIV transmission than those available in the United States. But in this country, women and children, including those at risk for or with HIV/AIDS, receive their health care from a variety of sources, depending in large part on their economic situation, the availability of providers, and their understanding of and comfort with the health care system in their community. Their care is financed by a mixture of public and/or private insurance and public funds; its content and quality are influenced by public and professional organizations; and oversight and regulation are achieved through a combination of national, state, and local authorities. These characteristics (see Table 5.1) and the fact that the health care system in the United States is undergoing rapid change, contribute to the challenges inherent in implementing the committee's recommendations. This chapter first examines the community-level sites where women of child-bearing age receive health care and how that care has been supplemented to meet the additional needs of women and children at risk for or with HIV/AIDS. This is followed by a review of the mechanisms for financing health care and of the organizations responsible for developing and implementing policies concerning maternity and HIV services. The chapter analyzes current trends in health care and social services to determine how they may affect access to services important for reducing the risk of perinatal HIV transmission and treating those already

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--> TABLE 5.1 Sources of Care for Pregnant Women Provider Source of Funding for Service Eligibility for Service Oversight/Reporting by Provider HIV Guidance Practicing physicians and nurse practitioners Patient fees; insurance; Medicaid Determined by provider and/or MCO State licensing authority; MCO CDC; professional organizations; sometimes MCOs Health department clinics (state and local) Federal (especially MCHSBG), state, local governments; Medicaid; patient fees; sometimes insurance Usually all within jurisdiction, with some limits based on income Federal, state, and local governments or boards of health CDC; state health departments; some local health departments Community, migrant, and homeless health centers Largely federal (BPHC); some state and local governments Medicaid; patient fees; insurance May restrict to catchment area Federal (BPHC), state, local governments; boards of directors CDC: BPHC; state and local governments Public and non-profit hospital outpatient facilities Some state and local subsidies; Medicaid; patient fees; insurance Public: usually all within community served Public: governmental unit       Non-profit: usually no restriction Non-profit: board of directors   Family planning clinics, and women's health centers Federal (especially family planning funds), state, local governments; Medicaid; patient fees Usually no restrictions Federal (Office of Population Affairs, DHHS), state, and local governments or boards of health; boards of directors Office of Population Affairs (DHHS); CDC, state health departments, and some local health departments Drug treatment facilities Federal (especially SAMHSA), state, local governments Few restrictions Federal (SAMHSA), state, and local governments SAMHSA Prisons Federal and state funds; ADAP for some county systems All inmates Federal, state, and county prison systems Federal prison system; some state systems NOTE: ADAP: AIDS Drug Assistance Program; BPHC: Bureau of Primary Health Care; CDC: Centers for Disease Control and Prevention; DHHS: Department of Health and Human Services; MCHSBG: Maternal and Child Health Services Block Grant; MCO: managed care organization; and SAMHSA: Substance Abuse and Mental Health Services Administration.

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--> infected. This information provides the background for an understanding of the rationale for the committee's recommendations and should assist in their implementation. Appendix B contains more details on the issues covered here and full references. Community-Level Sources Of Care For Women, Children, And Adolescents The current mix of service delivery structures available on the community level can be organized into two somewhat arbitrary categories—public and private nonprofit providers and private providers—neither of which is purely private nor exclusively public. Some private providers receive differing amounts of public funding for their patients, and many public and nonprofit providers use a combination of public and private providers to deliver services. The majority of women of childbearing age and their children receive their health care, and, potentially, testing for and treatment of HIV/AIDS, in a private provider's office (Weisman, 1996). While most of these providers are physicians, including obstetricians, family physicians, internists, and pediatricians, a significant number of women receive care from nurse practitioners and nurse midwives. Private providers may be in a solo or group practice, and a large and growing percentage are affiliated with managed care organizations. Some women and children are not served by private providers because they do not have health insurance, there are no private providers locally, or those available do not accept public insurance. These women and children rely on a variety of public and private, nonprofit facilities, often referred to as ''the safety net." These facilities include clinics operated by state or local health departments, community or migrant health centers, public and private, nonprofit hospitals, and family planning clinics operated by Planned Parenthood affiliates and other private nonprofit groups. Safety net facilities may provide maternity, family planning, STD (sexually transmitted disease), nutrition, and other non-reproductive-related services to women, as well as well-child supervision and illness and specialty care to children. Many of those served in these facilities are at high risk for HIV infection because they are poor and come from disadvantaged communities with a high rate of HIV infection. Most adolescents receive their health care at community teen clinics, school-based clinics, community family practices, private family practices, and private pediatric practices (Blum et al., 1996). More than 900 school-based or school-affiliated health centers provide a range of preventive and primary care services to adolescents. A number of other programs serving women of childbearing age and young children offer opportunities for reducing the risk of perinatal transmission of HIV. At any point in time, approximately 120,000 women are inmates in prisons and jails throughout the country and have access to limited care within these facilities. Increasingly, prisons and jails also contract with private or public providers

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--> in the community for primary and specialty care, often arranged through university medical centers and correctional health care companies, the latter on a capitated basis. Community mental health centers and substance abuse treatment facilities offer specialized care to women and sometimes to children. Drug treatment is funded primarily through the Substance Abuse, Prevention, and Treatment Block Grant. States receiving this funding are required to set aside a minimum of 5% of the funds for treatment of pregnant women, and to give pregnant women priority in enrolling for treatment services. States are also required to provide primary care, prenatal care, and child care to the women served under the set-aside. In common with prison system, substance abuse treatment facilities often contract with community providers for primary and specialty health care services. The Special Supplemental Nutrition Program for Women, Infants, and Children (WIC) offers food supplements, nutritional counseling, and referrals to maternity and child health care for pregnant women and children at approximately 10,000 sites, often at locations where they receive other care. Many public and nonprofit providers receive funding to provide specific HIV- and AIDS-related care to women and children. In addition, there is a network of facilities to provide such care exclusively. These include HIV testing and counseling centers, community-based nonprofit AIDS service organizations, and clinic settings. Financing Health Care Services For Women, Children, And Adolescents Health care for women of reproductive age and for children is financed by private and public insurance and by a wide range of other funding mechanisms that support community-based public and not-for-profit agencies. The number of Americans who do not have health insurance coverage continues to grow. Nearly 41 million persons under age 65 were without public or private health insurance in 1996. Approximately 19% of women of childbearing age (18–34 years) and 10% of children under 18 are uninsured (Kaiser Commission on Medicaid and Uninsured, 1998a). There are a number of reasons for this growth in the uninsured, not the least of which is the cost of coverage for the employer, the employee, and the individual purchaser. The number of persons without health insurance coverage puts a strain on public and private, nonprofit community-level agencies that offer health care. If the patient has health insurance, these agencies receive reimbursement from the insurer, including Medicaid. If the patient does not have insurance, these agencies must cover patient care through grants and contracts and/or other types of support from multiple federal, state, and local sources, both public and private, including philanthropy.

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--> Private Insurance The majority of women of childbearing age (70%) and children (66%) have their health care paid for through private insurance (Kaiser Commission on Medicaid and Uninsured, unpublished). Private insurance is usually obtained through employment directly or as a dependent of an employed person. Private health insurance on an individual basis is much more expensive, and the percentage of women and children with private insurance has declined steadily over the past decade (EBRI, 1997). A number of issues about private insurance coverage for HIV/AIDS remain unresolved at this time. These issues include whether health plans can exclude from coverage individuals who have received a diagnosis of HIV infection before coverage; whether an employer can restructure a health plan to reduce benefits for a specific type of illness after a claim has been filed; and whether specific services will be considered "medically necessary" and therefore covered under insurance plans (Gostin and Webber, 1998). In June 1998, the Supreme Court, ruled in Bragdon v. Abbott, that individuals with asymptomatic HIV infection meet the legal definition of having a physical impairment under the Americans with Disabilities Act (ADA). The impact of this ruling on discrimination in insurance, as well as in employment and services offered by business and government, remains to be seen (Kaiser Family Foundation, 1998a). The Health Insurance Portability and Accountability Act (HIPAA), passed in 1996, addressed private insurance coverage for people with pre-existing conditions, including those with HIV/AIDS. The law prohibits group health plans, insurers, and managed care organizations from denying coverage because of pre-existing conditions if the person had been insured for an uninterrupted 12 months prior to the application. In addition, the law: limits to 12 months the time a person can be subject to a pre-existing medical condition exclusion if the individual had no previous health care coverage; guarantees the availability of individual health insurance policies for those who leave jobs and have maintained previous coverage; prohibits denial of coverage in group plans to persons in poor health; and requires insurers to sell plans to small employers and guarantees renewal for both small group and individual coverage. Although the HIPAA provides protections for those affected by HIV, it does not address the cost of premiums that insurers may impose, an important issue related to access.

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--> Public Insurance Medicaid covers 32% of low-income women of childbearing age and 49% of low-income children under 18 (Kaiser Commission on Medicaid and Uninsured, 1998b). Medicaid is the second largest public financing mechanism for health care and the largest single payer of direct medical services for people with AIDS. Over 61.5% of women in care for HIV are insured by Medicaid (Rand, 1998). Medicaid also pays for the care of about 90% of children with AIDS (DHHS, 1998). In 1996 only 15% of women in care for HIV with an asymptomatic HIV diagnosis (CD4 count of 500 or above) had private insurance, 60% had public insurance (Medicaid and Medicare), and 25% had no insurance. As the disease progresses to AIDS (CD4 counts below 200), those with public insurance increased to 70% (Rand, 1998). Under Medicaid, all states are required to cover maternity services through 60 days postpartum for pregnant women with incomes below 133% of the Federal Poverty Level (FPL) and, at state option, the income cut-off for pregnant women can be raised to 185% FPL (and the federal match still maintained). States are also required to cover infants born to Medicaid-eligible pregnant women through the first year of life. In addition, states must cover children through age 5 who live in families below 133% FPL, and children ages 6 to 13 whose family income falls below 100% FPL. Older children with family income below 100% FPL are to be gradually phased in until 18 year olds are covered in 2002. States have the option of expanding coverage for children beyond the minimum requirement, and as of October 1997, a total of 27 had chosen this option (Weil, 1997; Fine, 1997). Under the new, federal-state Child Health Insurance Program (CHIP), federal funds are available to states that choose to expand Medicaid coverage to children whose family incomes are up to 200% of poverty. Under CHIP, states may choose to expand Medicaid eligibility, or they may use the new federal funds to develop their own coverage programs for children. The full range of services identified in a state Medicaid plan must be provided to all recipients, including those with HIV disease. In addition, some states offer optional services such as targeted case management, preventive health services, and hospice care. Not all physicians accept Medicaid as payment, however, because rates may be low, payment slow, and paperwork cumbersome. All public and private, nonprofit sites accept Medicaid payments, with the difference between the Medicaid reimbursement and the actual costs of the services provided at these sites often covered by grants, usually from the federal government to a community-based organization or to a state agency. Medicaid currently covers all Food and Drug Administration (FDA) approved prescribed drugs, including those used for prophylactic treatment of AIDS-related opportunistic infections, and drugs for treatment of HIV disease and prevention of perinatal transmission. Although states are required to cover those

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--> drugs for people on Medicaid who participate in Medicaid's drug rebate contract, many states have imposed limitations by restricting the number of prescriptions a patient can purchase in a month, the number and terms of refills, a requirement for prior authorization, and a determination of "medical necessity." In June 1996, in response to reports that some managed care organizations did not include all FDA-approved drugs for HIV in their formulary, the Medicaid program issued a directive to states requiring that those which include drugs and cover the HIV population in managed care assure that those drugs are available in managed care formularies. The federal Social Security program offers two types of benefits for which women and children with HIV/AIDS may be eligible. For persons with an employment history, Social Security Disability Insurance (SSDI) provides monthly benefits to those disabled with a medical condition that is expected to last a year or end in death and is serious enough to prevent them from doing substantial work. The monthly benefit depends upon how much was earned while working. After 24 months on SSDI, the recipient becomes eligible for Medicare. The Supplemental Security Income (SSI) program is intended for those with a disability who have not worked long enough to qualify for Social Security or whose benefits are low and resources limited. Children with disabilities who live in low-income families may qualify for the SSI Disabled Children's Program (SSIDCP). In most states, eligibility for SSI makes one eligible for Medicaid coverage. Grants and Contracts The range of funding mechanisms for primary and specialty care that existed prior to the HIV/AIDS epidemic has been supplemented by funding specifically for HIV/AIDS patients. Primary and Specialty Care Federal funds for primary and specialty care are authorized and appropriated by Congress and distributed primarily from the Department of Health and Human Services (DHHS) through the Maternal and Child Health Bureau (MCHB) and the Bureau of Primary Health Care (BPHC) of the Health Resources and Services Administration (HRSA); the Office of Population Affairs (OPA); the Centers for Disease Control and Prevention (CDC); and Substance Abuse and Mental Health Services Administration (SAMHSA). Federal money flows into the community either directly through grants to public and private providers in the community, or indirectly through state agencies, which then allocate funds in a manner specific to their mandate. State funding consists of matching contributions required by specific programs, shared funding, or supplemental funds used to expand service support. Local health agencies, especially ones serving large populations, may also fund primary and secondary health services. State and local health agencies frequently receive grants from private foundations for special initiatives.

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--> HIV/AIDS In addition to funding primary and specialty care, the federal, state, and sometimes local governments, as well as foundations, charitable agencies, and other groups, allocate funds exclusively to provide HIV- and AIDS-related care to women and children. The most important source of federal funding for HIV/AIDS care is the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act, administered by HRSA's HIV/AIDS Bureau. In addition, CDC supports community programs. Under the Ryan White CARE Act, funds are awarded to eligible metropolitan areas under Title I to provide outpatient health care, support services, and inpatient case management. Title II funds go to states for homeand community-based health care and support services, continuation of health insurance coverage, and drug treatment through the AIDS Drug Assistance Program (ADAP). Title III provides funds to community agencies for early intervention services. Title IV funds community-based agencies for coordinated HIV services and access to research for children, youth, women, and families, and funds a smaller program that focuses specifically on reducing perinatal HIV transmission. Title V funds a dental reimbursement program, education and training centers, and demonstration projects that address hard-to-reach populations. A major source of concern for HIV/AIDS patients and their providers is the cost of the drugs used for treatment. Many private insurance polices cover these medications. Medicaid also covers pharmaceuticals, but may impose limits. The ADAP, operating under Title II of the Ryan White CARE Act, is the second largest source of funding for HIV/AIDS drugs after Medicaid and is the payment of "last resort" (i.e., ADAP funds may be used only after all other public and private insurance sources have been exhausted). The program provides funds to all 50 states, the District of Columbia, Puerto Rico, the Virgin Islands, and Guam to make protease inhibitors and other therapies available to the uninsured and underinsured individuals with HIV. Administered by the state AIDS directors, each state determines its own financial and medical eligibility criteria, the type and number of drugs covered, and their purchase and distribution. The demand for ADAP funds has increased dramatically as the number of persons with HIV has grown and new therapeutic regimens have been developed. In 1996, 83,000 persons with HIV disease were served and $52 million in supplemental funds were appropriated to supplement the $53 million committed by states from their Title II awards. The FY 1997 ADAP budget had a 221% increase over FY 1996, with the majority of funds coming from federal sources (Doyle et al., 1997). Fifteen states have waiting lists for ADAP enrollment and/or for access to protease inhibitors (AIDS Policy Center for Children, Youth and Families, 1998). In 1997, four state programs did not cover protease inhibitors and two states covered only one. Five states did not cover any of the prophylactic drugs

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--> strongly recommended in the 1997 guidelines and only two states had the full complement recommended (CDC, 1997f; Doyle et al., 1997). The CDC's Division of HIV/AIDS Prevention enters into cooperative agreements with states and territories to support more than 10,000 counseling and testing sites and health education and risk reduction activities. The Division of STD Prevention funds 3,000 STD clinics, the primary source of HIV testing in public facilities. CDC's Division of Adolescent and School Health supports the development and implementation of HIV-related school policies and curricula to prevent HIV infection. As a result of these programs, all states and territories have an AIDS program funded by both state and federal governments. The bulk of funding for HIV/AIDS testing, counseling, and outreach services comes from HRSA and the CDC. Although some testing and counseling centers are run directly by the state, most other services are arranged through grants and contracts with community-based providers. The National Institutes of Health (NIH) funds HIV clinical research in institutions across the country through three diverse clinical trials networks, the AIDS Clinical Trials Group (ACTG), the Pediatric AIDS Clinical Trials Groups (PACTG), and the Terry Beirn Community Programs for Clinical Research on AIDS (CPCRA). Although the primary purpose of these networks is research, they provide important opportunities for women and children affected by HIV who meet the protocol criteria to access health care services. The Ryan White Title IV program assists in linking women and children to NIH research protocols. Organizations Responsible For Developing And Implementing Policies Most of the agencies that fund primary and specialty services and HIV/AIDS-specific services also exercise general or specific authority over those who provide these services, whether in the private or the public sector. Private providers are responsible to licensing boards, must follow Medicaid requirements if Medicaid-certified, must consider the recommendations of their professional organization regarding standards of care if they are to avoid litigation, and must respond to the standards of the hospitals or managed care organizations with which they are affiliated. State and local public and private, nonprofit agencies frequently have multiple sources of funds and must meet the requirements established by each of these funders, as well as state and local governing bodies and boards. By law and custom, responsibility in health affairs is shared by federal, state, and local authorities. Federal and state entities often try to avoid issuing too many regulations or might be perceived by their respective constituents as "excessive" guidance. Many of these authorities "recommend" rather than ''require." The degree

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--> to which responsibility or authority is shared among these authorities often shifts over time. The locus of responsibility for many public benefit programs has shifted during the 1990s, with some responsibility "devolving" from the federal to the state level and, in many states, to the local level. This shift has increased the variability that has always existed from community to community in the organization, structure, and funding of health care services, creating important challenges to mounting an effective effort to reduce HIV perinatal transmission. Implementation of the committee's recommendations will require changes in the policies developed by federal, state, and local government groups, managed care organizations, and professional groups, as well as broad dissemination of those policies. Recent Changes In Health Care And Social Services Several recent changes in federal policies will affect women and children at risk for or already infected with HIV/AIDS. Welfare Reform The 1996 welfare reform legislation—the Personal Responsibility and Work Opportunity Reconciliation Act of 1996 (PRWORA)—mandated changes in a number of areas, including cash assistance, Medicaid, SSI, and access to federal means-tested benefits. PRWORA repealed the AFDC (Aid to Families with Dependent Children) program and replaced it with the Temporary Assistance for Needy Families (TANF) block grant, imposing limits on the amount of time a family can receive economic support, sanctioning those that do not comply with work requirements or requiring recipients to seek work or training first before applying for assistance, and restricting cash assistance to citizens and certain categories of legal immigrants. In addition, persons convicted of drug felonies are prohibited from receiving cash assistance. It is important to note that there has been a significant increase in the criminal prosecution of substance-abusing pregnant women over the past several years (Chavkin et al., 1998), thereby increasing the likelihood that these women will not be eligible for cash assistance during treatment. PRWORA essentially bars many legal immigrants from receiving a range of federal means-tested benefits, including TANF, Medicaid, SSI, Food Stamps, and Social Service Block Grant services. It does, however, distinguish between "current" qualified immigrants—those residing in the United States on August 22, 1996—and "future" qualified immigrants—those arriving after that date. Current qualified immigrants are eligible for emergency Medicaid, may receive non-emergency Medicaid and/or TANF at the state's option, and may retain SSI if they were receiving benefits on August 22, 1996. Future qualified immigrants may receive emergency Medicaid only, are banned for five years from receiving

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--> Medicaid and TANF benefits, and are ineligible for SSI until citizenship. Undocumented and "unqualified" immigrants are eligible for emergency Medicaid, but are barred from all other federal means-tested benefits. Under PRWORA, Medicaid is maintained as a federal entitlement for low-income citizens. Medicaid eligibility is not linked with TANF; instead, families are eligible if they meet AFDC eligibility requirements that were in effect as of July 16, 1996. Children with disabilities are also affected by PRWORA in that they must meet a narrower definition of disability to become eligible for assistance through the SSI Disabled Children's Program (SSIDCP), a common entry point for Medicaid eligibility and enrollment. The Balanced Budget Act of 1997 restores Medicaid for children who were receiving SSI on August 22, 1996, but lost it due to changes in the welfare law. These and other changes have a complex and significant impact on access to care and, therefore, primary and secondary prevention opportunities for reducing perinatal transmission. Most women with or at risk for HIV have low-incomes, are uninsured, and/or often rely on government programs to support their access to health care. Women with HIV disease may become impoverished because the disease itself prevents them from working or because of the expenses associated with it. The traditional linkage of women with the Medicaid program often came with their enrollment in AFDC (the former welfare program). With reduced access to welfare due to changes in eligibility and the imposition of time limits and sanctions, women may not be aware of their potential eligibility for Medicaid or how to access the program. Although many states have attempted to ease access to Medicaid for those applying for TANF benefits by creating a single application for TANF and Medicaid, access has been made more complicated for those not eligible or interested in TANF benefits because separate routes to Medicaid have not been effectively established in many jurisdictions. With access to both welfare and health care services restricted to certain categories of legal immigrants and unavailable for the undocumented, opportunities for prevention and treatment are more limited. Many undocumented women are fearful of accessing care because of Immigration and Naturalization Service reporting requirements. Recent reports indicate that, at least in some states, applications for Medicaid (and therefore presumably Medicaid enrollment) have dropped precipitously among households headed by non-citizens, even though many non-citizens and/or their children remain eligible (Lewis et al., 1998). Another potential problem is that even though transitional Medicaid is maintained under welfare reform, many women who move from welfare to work may eventually secure employment that places them above Medicaid income eligibility cut-offs, but do not provide private insurance. In some cases, newly found jobs may offer insurance but former welfare recipients may find it too expensive to cover themselves or their dependents. Beyond any impact from welfare reform, there is also an ongoing problem of

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--> continuity of Medicaid coverage. Due to Medicaid recertification processes and/or temporary or permanent changes in a recipient's eligibility status, about half of the Medicaid population is continuously enrolled for less than 12 months. This means that many women and children are without coverage for medical care for varying periods of time, an issue critical to continuity of care, counseling, testing for HIV, and the ability to comply with complex HIV drug regimens. Access to care is also affected by the reduction in the disproportionate share hospital (DSH) payments enacted in the Balanced Budget Act of 1997. DSH payments compensate hospitals serving a large volume of uninsured and Medicaid patients. This program supports such safety net providers as outpatient HIV clinics at public and nonprofit hospitals across the nation. This legislation also provided states with the option of expanding access to Medicaid by creating a "buy-in" for persons whose income was under 250% of poverty and who would be eligible for SSI, but whose income was too high. This option has important implications for women with HIV (Families USA Foundation, 1997). Managed Care Managed care has become a major strategy to control health care costs in both the public and the private sectors. Although managed care arrangements can take different forms, they all include enrollment of individuals, contractual agreements between the provider and a payor, and varying degrees of gatekeeping and utilization control (Kaiser Commission on the Future of Medicaid, 1996). Because it is responsible for delivering care to a defined group of enrollees, managed care makes possible, for the first time, accountability for the quality of care of populations, including access to care and health outcomes (IOM, 1996a). Enrollment in managed care arrangements has increased dramatically in both the public and the private sector over this decade. Not only has the percentage of employees enrolled in managed care plans increased from 48% in 1992 to 85% in 1997 (EBRI, 1998) but federal law now allows states to mandate the enrollment of Medicaid beneficiaries in managed care organizations (MCOs). Almost half of Medicaid recipients were enrolled in managed care in 1997 (HCFA, 1997). Women, children, and youth are moving most quickly into managed care. This population as a whole, particularly those with or at risk for HIV/AIDS, has unique and complex needs requiring a broad array of multidisciplinary medical and support services. For example, relationships have to be built between the MCOs and the type of providers that adolescents seek—teen clinics, school health clinics, community family practice sites, and family planning clinics. Some of the problems encountered by persons with HIV enrolled in MCOs include reduced access to specialty care providers, including HIV specialists; reduced access to specific drug formularies and specific services; clinical decisions apparently made on the basis of cost; limitations placed on the information providers can provide; and insufficient time with providers. MCOs have difficulty

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--> setting appropriate capitation rates for those with HIV/AIDS. Also, many of the providers who do have experience in providing HIV/AIDS care do not have experience working within managed care environments (Kaiser Family Foundation, 1998b). More time is needed to gain experience providing HIV specialty services and to build systems that can monitor and evaluate the quality of care in the managed care setting and provide oversight. One strategy chosen by some states is to "carve out" or exclude specific services or populations from the managed care contract and allow them to be provided as they were before the affected individuals were placed in the managed care program. Some MCOs deal with HIV/AIDS care in this way. Medicaid managed care arrangements compete with public providers and private community-based providers serving the uninsured and publicly insured. Before the advent of managed care, these providers were frequently the only ones who served the poor or near-poor patient. Reimbursement from Medicaid for eligible populations allowed these providers to cross-subsidize the uninsured or underinsured patient (Davis, 1997). Now, competition for Medicaid funds is threatening the ability of these providers to support services to those without adequate insurance coverage. In addition, "many public hospitals and … providers of care to the poor with a mission to render care to the uninsured are being sold to private, for-profit organizations without a comparable mission to provide uncompensated care" (Wehr et al., 1998). Managed care contracts, like traditional insurance contracts, do not typically identify specific conditions, and services are limited to what the purchaser specifies. In 1996, 18 states covered counseling and testing for HIV in their Medicaid managed care contracts, usually in the context of family planning services only. Access to the ACTG 076 protocol was assured through specific language only in Florida, but specific clinical services are often not mentioned in these contracts (Wehr et al., 1998). Conclusions Improvements in the prevention and treatment of HIV/AIDS in women and children and the efforts to promote the application of these new procedures have taken place in the context of a health care system that is undergoing a revolution in structure and funding. Major changes in Medicaid and welfare programs, the growing number of uninsured, and the growing presence of managed care in both the public and the private sector, are having a significant impact on the health care system, affecting not only the availability of quality services, but access to those services. An array of federal, state, and local laws, regulations, policies, institutions, and financing mechanisms shapes the services in any given locality and determines who has access to those services. The current mix of public and private services and funding streams not only varies significantly from state to state and

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--> community to community, but is undergoing rapid change and is financially vulnerable. The ability of public programs and private sector programs using public funds to provide care has been significantly challenged, not only by the growing number of uninsured and the reduction in public funding of health care services, but by the rapid growth of managed care arrangements. The complex patterns of sources of medical care, financing mechanisms, program authorities, and organizations that influence care make it difficult to institute policies for reducing perinatal HIV transmission. Local, state, and federal agencies have made many efforts to inform providers and the public, and to promote counseling and testing of pregnant women wherever services are offered, especially in states and communities with a high incidence of HIV infection. But more needs to be done to maximize opportunities for prevention of perinatal transmission. The fact that our health care system is itself undergoing dramatic changes in structure, funding, and service delivery presents both challenges and opportunities. The chain leading to perinatal transmission of HIV infection described in Chapter 1 (Figure 1.1) can be broken in a number of ways, including encouraging pregnant women to seek prenatal care, informing them about HIV testing and urging them to be tested, having all pregnant women tested, and providing treatment to those who test positive. The complexity of the U.S. health care system is often an impediment to the achievement of these goals. Among the many possible obstacles inherent in the current health care system are: financial and access barriers that may discourage women from seeking prenatal care; time constraints imposed by managed care that may discourage physicians from counseling pregnant patients about the importance of testing; prenatal care sites that may not have the staff to overcome the language and cultural barriers that may cause women to refuse testing; financial and logistical problems that may make testing difficult; and financial barriers to treatment of the HIV-positive woman. In addition, the multiple lines of funding responsibility and accountability have made it extremely difficult to educate providers and to convince them of the necessity of testing all pregnant women.