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--> Appendix B Context Of Services For Women And Children Affected By HIV/AIDS Barbara Aliza The development of new opportunities to substantially reduce the risk of perinatal HIV transmission and more effectively treat those already infected not only has significant implications for improving maternal, fetal, and infant health, but places new demands on the health care system with respect to how services are funded and delivered. The introduction of new, more potent drugs, more effective therapeutic regimens, new tools for monitoring and assessment, and knowledge of how and when perinatal HIV transmission takes place has brought intensified efforts in both the public and private sector to reach out to all women of reproductive age with information, counseling, testing, and treatment services. At the same time that the need to simplify access to these services has become critical to maximizing prevention and treatment opportunities, the organization and funding of needed services has grown even more complex. This appendix identifies the range of services available on the community level to women and children affected with HIV disease in order to provide a framework for understanding the opportunities for treatment and prevention. After describing the population of women and children affected by HIV and discussing what we know about where women and children go for care, the appendix profiles a variety of providers offering services to this population. It then discusses the major sources of funding for HIV-related services and the implications of a number of policy issues, including welfare reform, changes in Medicaid, public and private sector managed care, the Health Insurance Portability and Accountability Act, and the Americans with Disabilities Act.
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--> Source Of Care For Women, Children, And Adolescents Women's access to the health care system varies by income, ethnicity, and education (Wyn et al., 1996). How and where women seek health care reflects both the structure and the organization of the health care system, as well as women's awareness or knowledge of health care practices and their satisfaction with health care professionals (Falik, 1996). The majority of women and children in the United States receive care in a private provider's office. The more affluent and educated a woman is, the more likely she is to use two providers—an obstetrician—gynecologist and an internist or family care practitioner (Weisman, 1996). Most adolescents receive health care at community teen clinics, school-based clinics, community family practices, private family practices, and private pediatric practices (Blum et al., 1996). The poor or nearly poor, the population most affected by HIV infection, is more likely to use publicly funded providers or programs (public and nonprofit hospitals, community health centers, family planning clinics, and public health clinics (Lyons et al., 1996). Most children, youth, and families affected by AIDS depend on these "safety net" programs for their care. While more than 61% of women in care for HIV (Rand, 1998) and 90% of children (under 18) with AIDS (DHHS, 1998) receive care paid for through the Medicaid Program, the rapid growth of public managed care programs for those on Medicaid is moving service delivery into the managed care setting. The significant developments in prevention and treatment for women and children and the efforts to promote the application of these developments have taken place in the context of a health care system that is undergoing a revolution in structure and funding. Significant changes in Medicaid and welfare programs, the growing presence of managed care in both the public and private sector, the growing number of uninsured, and the recently introduced Children's Health Insurance Program are having a significant impact on our health care system, affecting not only the availability of quality services, but also access to services. The lack of a unified set of goals or policies that guides how health care services in the United States are organized challenges our ability to respond optimally to an epidemic as complex and challenging as HIV/AIDS. An array of federal, state, and local laws, regulations, policies, institutions, and funding mechanisms not only shapes the services in any given locality (Hess, 1994) but 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 community to community, but is undergoing rapid change and is financially vulnerable. In addition to a growing number of uninsured and a reduction in public funding of health care services, the rapid growth of managed care is competing for clients in both the public and the private sector and reduces the ability of public programs, and private sector programs using public funds, to subsidize care through Medicaid reimbursement (Davis, 1997).
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--> TABLE B.1 Community-Level Health Care Providers Private Providers Public and Nonprofit Providers Obstetricians/gynecologists State and local public health clinics Pediatricians Public and nonprofit hospitals Family practice practitioners Community health centers Nurse midwives Family planning clinics Nurse practitioners WIC clinics Managed care organizations STD clinics AIDS service organizations Healthy Start sites Home testing/counseling School-based health centers Prisons Drug treatment facilities State HIV testing/counseling centers NOTE: STD = sexually transmitted disease; WIC = Special Supplemental Nutrition Program for Women, Infants, and Children. Women and children with, or at risk for HIV/AIDS must rely on a broad array of preventive, diagnostic, treatment, and support services to maximize their health and quality of life. The current mix of service delivery structures available on the community level can be organized into two somewhat arbitrary categories: public and nonprofit providers and private providers, neither of which is purely private or 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. This section describes community-level providers listed in Table B.1. Public and Nonprofit Providers State and Local Public Health Services and Clinics Local Health Departments1 These administrative and service units of local and/or state governments employ at least one full time person and carry some responsibility for the health of an area smaller than the state. The estimated total local health department (LHD) expenditure is $8 billion. Most of the nearly 3,000 LHDs are located in 47 states and fall under the authority of local government and health boards rather than state public health infrastructure. As the locus of public health and prevention services in a community, the majority of LHDs play an important role in providing or assuring maternal and child health services and 1 Data in this section from the National Profile of Local Health Departments, Washington, D.C., 1993 and 1995.
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--> TABLE B.2 Percentage of Local Health Departments Providing Specific Services Services Percentage Services Percentage WIC services 78 HIV/AIDS treatment 33 Prenatal care 64 Well-child clinics 79 Obstetrical care 33 EPSDT services 72 STD testing and counseling 71 Child sick care 39 Family planning 68 Children with special needs services 65 STD treatment 66 School health services 60 HIV counseling and testing 68 NOTE: EPSDT = Medicaid's Early Periodic Screening, Diagnostic, and Treatment Program; STD = sexually transmitted disease; WIC = Special Supplemental Nutrition Program for Women, Infants, and Children. many provide services that target communicable diseases such as HIV, tuberculosis, and sexually transmitted diseases (STDs). Population served: By definition, the population served by an LHD includes all persons within the unit's jurisdiction. The provision of personal health services varies considerably from community to community; 68% offer such services to all persons in their jurisdiction, while 32% limit those services to a target population. Services provided: Services offered directly or by contract include such population-based services as health education and risk reduction, community outreach and education, and communicable disease screening. Services relevant to maternal and child health are listed in Table B.2. Funding: Local health departments access a variety of funding sources, including, for example, state funds (including maternal and child health program funds), local community funds, Medicaid, federal government program grants, patient fees, and private foundations. State Title V Maternal and Child Health and Children with Special Health Care Needs Clinics and Service: These clinics and services are operated directly by the State Title V Maternal and Child Health (MCH) Program, which is funded by the Title V Maternal and Child Health Services Block Grant (Title V of the Social Security Act). Although some state Title V MCH programs directly run clinical services in a community or on a regional basis, most support care indirectly through grants and contracts to local health departments and community-based providers and facilities. For this reason the program is an important source of funding for services for women and children and is detailed in the discussion of funding sources.
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--> Public and Nonprofit Hospitals Public Hospitals There are more than 100 public hospitals and health systems in large metropolitan areas, mostly under the authority of state or local governments or agencies. The exact number of public hospitals in smaller towns and communities is unknown. Public hospitals are referred to as "safety net providers" and are major referral centers, teaching hospitals, and providers of care for low-income populations and populations who are poor and uninsured. Population served: More than 90% of patients served are either Medicaid recipients, Medicare beneficiaries, or the uninsured. Although public hospitals traditionally serve many patients that other hospitals will not serve, they have experienced a reduction in obstetrical patient volume in recent years, owing in great part to competition from public and private sector managed care. Services provided: These include preventive and primary care, specialized health services, emergency and trauma care, high-risk pregnancy services, HIV/AIDS care and neonatal intensive care. Many of the public hospitals have created a network of primary care clinics through the community and sometimes provide mobile health units and outpatient hospital units. Funding: Funding sources include Medicaid, state and local subsidies, private insurance, and foundations. Nonprofit Hospitals. In many communities without public hospitals, nonprofit hospitals, especially university-affiliated facilities, serve the poor, providing the same safety net as public hospitals. In 1996, there were over 3,000 nonprofit hospitals across the country with more than 2.6 million births.2 These facilities often provide the same range of health care services to women and children, including those affected by HIV/AIDS, and experience many of the same pressures as public hospitals related to adequate reimbursement by public and private third party payers and the burden of uncompensated care. Nonprofit hospitals are under the authority of community boards and are open to all residents of a community. Funding: Funding sources often include Medicaid, state and local grants, private insurance, and grants from foundations. Community Health Centers3 These public and private nonprofit community-based organizations directly or indirectly, through contracts and cooperative agreements, provide primary 2 Data from the American Hospital Association (1998). 3 Data provided in this section come from the Analyses from the 1996 Uniform Data System conducted by MDS Associates, Inc. and Stickgold and Associates. Principal authors were Deborah Lewis-Idema and Beverly Wiaczek.
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--> health and related services to residents of a defined geographic area, specifically a medically underserved area. Located in 55 states and territories, there are more than 685 federally qualified community-based organizations receiving federal money that serve more than 10 million people a year with a network of 5,500 primary care providers. Under the authority of the Federal Bureau of Primary Health Care and community boards, these organizations fund 3,032 service delivery sites, including freestanding health clinics (1,889), shelters (298), schools (195), social service centers (123), health departments (106), mobile vans (80), substance abuse treatment facilities (71), HIV/AIDS clinics (41), mental health clinics (38), migrant camps (37), hospitals (37), and public housing (36). There are more than 100 clinics that meet the statutory requirements for a health center but do not receive federal funds. These clinics qualify for the same cost-based reimbursement from Medicaid and are referred to as federally qualified health center (FQHC) "look-alikes." There are an additional 200 nonprofit community-based clinics that do not receive federal money and have not applied for "look-alike" status. Population served: Although this varies from community to community, the target populations are the medically underserved, the poor, and disadvantaged, including minorities, women of childbearing age, infants, persons with HIV infection, substance abusers and/or homeless individuals and their families. Women of childbearing age constitute almost one-third of the population served; children account for 42%. In 1966, 10% of females (age 13–44) served were known to be pregnant with less than 1% known to be HIV-positive; 65% were below the federal poverty level and 20% fell between 100% and 200% of poverty. Services provided: These also vary according to the needs of the community. The most common services are those that target mothers and children, including the provision of such enabling services as case management, education, outreach, interpretation, transportation, child care, and discharge planning. Obstetrical and gynecological care is provided by 90% of grantees; 75% provide perinatal services and less than 50% provide labor and delivery services. Less than 1% of patient encounters included HIV testing, although 85% of grantees report providing this service. Funding: Sources of funding for community, migrant, and homeless health centers include, in order of frequency, the Bureau of Primary Health Care, Medicaid, the Ryan White CARE Act, state and local grants, private insurance, Medicare, patient fees, and foundation grants and contracts. Family Planning Clinics4 Under the authority of the Office of Population Affairs (OPA), Department of Health and Human Services (DHHS), this national network of clinics is funded 4 Data from the National Family Planning and Reproductive Health Association (1998).
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--> by Title X of the Public Health Service Act through grants to approximately 80 public and private nonprofit grantees for the provision of family planning information and services. In 1994 the health department was the sole grantee in 27 states and seven territories and a primary grantee in another ten states (Kaesar et al., 1996). Clinic sites include state and local health departments, hospitals, university health centers, Planned Parenthood affiliates, independent clinics, and other public and nonprofit agencies. Title X clinics are community-based, located in every state and in three-fourths of U.S. counties. They serve as an important entry point into care and, for some, the only source of service. Population served: Among those served are approximately 4 million women of reproductive age. The majority of clients are young, have never borne a child (Kaeser et al., 1996), have incomes below 150% of the federal poverty level (FPL), are uninsured, and do not qualify for Medicaid. Services provided: These include community education and outreach, contraceptive information and services, pregnancy testing, gynecological examinations, basic lab tests, and other screening services for STDs and HIV, high blood pressure, anemia, and breast and cervical cancer. Title X clinics operate under uniform federal regulations and guidelines that "often serve as the blueprint for state family planning programs." A 1987 directive from the federal OPA, requires clinics to "offer, at a minimum, education on HIV infection and AIDS, counseling on risks and infection prevention, and referral services." They may also provide risk assessment, counseling, and tests. The directive further notes that if testing is done, it should be targeted. It emphasizes the importance of "offering effective methods of family planning to sexually active HIV-infected women who run a high risk of perinatal transmission in pregnancy and who run a significant risk of transmitting HIV to other sexual partners." Guidelines for Title X grantees are currently under development, in collaboration with the Centers for Disease Control and Prevention (CDC). Funding: Sources of funding for family planning clinics may include Title X funds, state funds (including state maternal and child health program funds), Medicaid, private insurance, and patient fees. There is no charge for patients under 100% of the FPL and a sliding scale fee for patients up to 250% FPL. Special Supplemental Nutrition Program for Women, Infants, and Children 5 Supplemental foods, nutrition education, and health care referrals provided to low-income pregnant, postpartum, and breast-feeding women, and to infants and children up to their fifth birthday. Administered on the federal level by the 5 Data in this section were provided in the fact sheet, WIC: Building a Better future for America's Children, National Association of WIC Directors and from the WIC Program Office, Food and Nutrition Service, U.S. Department of Agriculture (1997).
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--> Food and Nutrition Service, U.S. Department of Agriculture (USDA), funds are provided directly to state health agencies which, in turn, distribute them to local agencies. Special Supplemental Nutrition Program for Women, Infants, and Children (WIC) programs are located in every state, most Indian Reservations and in all U.S. territories. There are 1900 local agencies and approximately 10,000 clinic sites. Local agencies often have multiple satellite sites throughout the community. Population served: Eligibility is based on nutritional risk and an income less than or equal to 185% of FPL. This includes 7.4 million to 7.5 million infants, children, and women, of whom approximately 1.7 million were pregnant or postpartum women. Approximately 20% of all pregnant women in the United States are in WIC, 40% of whom enroll within the first trimester of pregnancy. Two-thirds of participants live at or below the poverty line and one-third do not participate in other federal assistance programs. Services provided: These include a food package determined by the participants' specific needs and designed to provide high levels of protein, iron, calcium, and vitamins A and C. For women who cannot or should not breast-feed, iron-fortified infant formula is available for their infants. WIC also provides nutrition education and counseling, and referrals for pre- and postnatal health care (such as HIV testing), drug abuse education, and promotion of immunizations. The USDA is expecting to issue formal (written) directives on working with HIV-positive women sometime this year, in addition to a policy document issued by the USDA and DHHS in November 1997 on the contraindications to breast-feeding. The National Association of WIC Directors (NAWD) is also in the final stages of drafting a policy paper on working with HIV-positive women and is expecting to finalize it in the fall of 1998. New York and New Jersey have established specific guidelines related to HIV for WIC programs in their state that have been used as models in a recent conference for WIC programs. Both the guidelines developed by USDA and NAWD will suggest that WIC agencies advise women to know their HIV status, and if HIV-positive, not to breast-feed. Sexually Transmitted Disease Clinics Funded in partnership between CDC's Division of Sexually Transmitted Disease (STD) Prevention and state and local health agencies, more than 3,000 clinics provide dedicated services to prevent and treat STDs. Although some are located at family planning clinics and hospitals, most are located in state and local public health departments. These clinics are the primary source of HIV testing in public facilities. Authority is shared by CDC and state and local health agencies. Population served: This includes both men and women, although men use these clinics in far greater numbers than women. The population is most often poor, uninsured, and experiencing symptoms.
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--> Services provided: Among these are pre- and post-test counseling for HIV and safe sex, testing and treatment for a variety of STDs, partner notification, and education and training for community providers. Healthy Start Sites Funded by the Maternal and Child Health Bureau in the Department of Health and Human Services, this national demonstration program was founded in 1991 to reduce infant mortality and low birth-weight, especially in high-risk populations. The program was founded on the principle that strategies developed by the community were needed to address the causes of these problems. Located in 60 selected communities, the program focuses on (1) increasing community awareness (2) coordinating services between public and private agencies, and (3) building partnerships. There are no available data on the numbers of women served who have been counseled and/or tested for HIV or who are HIV-positive. Although some individual sites may have developed policies related to HIV counseling, testing, and risk reduction, there is no formal guidance from the federal agency related to HIV perinatal transmission, except for the Public Health Service (PHS) guidelines. School-Based Health Centers6 Found in more than 900 schools across the country, school-based health centers provide a comprehensive range of physical and mental health services to children and adolescents. Although they vary from community to community, all centers are located in schools and operated by health professionals, usually a multidisciplinary core team of primary care professionals—often a nurse practitioner or physician assistant, possibly a part-time pediatrician or family practitioner, and a social worker. Centers focus on assuring that patients are linked to a continuum of care, as needed, often establishing a network with community providers. Population served: School-age children are served, although individual schools may limit or target specific age groups. Usually about half the students in a school use the services, especially those with limited access to care. Services provided: These include a range of preventive and primary care, counseling, and linkage to a continuum of care in the community. There is no available information on what percentage of these health centers provides HIV counseling and/or linkage to testing and treatment services, but these centers are often the first and may be the only contact with medical services for adolescents. 6 Data provided by ''School-Based Health Centers. Making the Grade." Washington, D.C., George Washington University, 1998.
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--> Data for 1993 indicate that 16% of services are for reproductive health and 23% are for preventive health. Funding: Funding sources may include the state maternal and child health program, other state funding, local funds, foundations, and reimbursement from public and private insurance. Prisons7 A range of health care services is available through the prison system to the 1.725 million persons in prisons and jails throughout the country at any one time. Approximately 5% to 7% of prisoners are women (120,000). AIDS incidence among state and federal prisoners is 20 times the rate in the population at large. Ninety-two percent of female prisoners are of childbearing age (under 45) and a greater percentage of female prisoners are HIV-positive. Access to health care services and testing, counseling, and therapeutic regimens for HIV varies significantly from jurisdiction to jurisdiction. The fact that roughly 700,000 women are released from prisons each year highlights both the importance and the difficulty in establishing and maintaining good access to needed HIV services. Services provided: Services provided in the city and county jail systems and the state and federal prison systems are difficult to characterize because of their variability. While many prisons directly provide health care services by their own staff, the practice of contracting with outside agencies is rapidly increasing. Contracts generally are arranged with university medical schools and correctional health care companies, the latter on a capitated basis. The policy for HIV testing of pregnant females is the same as for other inmates in most systems. Seven state systems and the federal prison system have mandatory or routine testing of incoming pregnant women, but provide voluntary or on-request testing for other inmates. There are no data about routine counseling of pregnant inmates regarding testing. A survey conducted by ABT Associates, Inc. revealed that 90% or more of prisons report the availability of prenatal care, ZDV therapy and combination therapies. Information on how accessible these services are to inmates is not available, nor is there any information about follow-up and referral once a prisoner is identified and/or treated and then released. Drug Treatment Facilities8 Funded primarily through the Federal Substance Abuse, Prevention, and Treatment Block Grant, totaling $1.3 billion, and state and local funds, this public 7 Much of the data in this section was obtained in an interview with Theodore Hammett, ABT Associates, Boston, MA, April 9, 1998. 8 1995 funding sources obtained from state Resources and Services Related to Alcohol and Other Drug Problems: Fiscal Year 1995, National Association of State Alcohol and Drug Abuse Directors, Inc.
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--> system of drug treatment facilities consists of approximately 10,000 treatment sites. Funds are distributed to 60 entities, including all states, the District of Columbia, Puerto Rico, the Virgin Islands, and the Pacific Trust, for the purpose of planning, carrying out, or evaluating related activities. States distribute the funds through a county or regional intermediary, which in turn distributes the funds to treatment facilities. The state is almost always a purchaser of care and sometimes a manager, but rarely provides the service directly, especially within a community. Population served: 28% to 30% of those served are women. States are required to set aside a minimum of 5% of the funds for treatment of pregnant women and women with children. Pregnant women are also given priority enrollment in all treatment services, and states are required to maintain spending for treatment at the FY 1994 levels. All states with ten or more AIDS cases per 100,000 population must carry out one or more projects that make early intervention services for HIV infection available on-site. Services provided: States are required to provide primary care, prenatal care, and child care to the women served under the 5% set-aside. Most grantees contract with primary care providers for such care. There is no requirement to do HIV testing and counseling, although many conduct risk assessments for tuberculosis (TB) and HIV as part of their protocol. In addition to the regular block grant activities, there are 54 demonstration projects specifically targeting pregnant and postpartum women, and in these projects, pre- and post-test counseling are required. Most of these projects are ending this fiscal year and the remaining 18 end in FY 1999. The Substance Abuse and Mental Health Services Administration (SAMHSA) has disseminated guidance regarding screening and assessment issues for projects focusing on specific populations. The Center for Substance Abuse Treatment (CSAT) has disseminated guidance related to HIV counseling and testing through a protocol developed for treatment providers and primary care providers (Series 11), a protocol for screening for infectious disease for patients in treatment (Series 6), and for a protocol improving treatment for drug-exposed infants (Series 5). The movement of Medicaid recipients into managed care has resulted in a reduction of coverage for substance abuse treatment services. There has also been an increase in cases of criminal prosecution for pregnant women who are substance abusing and in mandatory testing, reporting, and treatment (Chavkin et al., 1998). Funding: Additional funding comes from Medicaid, other federal programs (Ryan White CARE Act and the Department of Justice), and private insurance. State Testing/Counseling Centers Administered by state AIDS directors, approximately 10,000 testing and counseling centers (including anonymous testing sites) throughout the country receive the bulk of their funding from the CDC through a cooperative agreement
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--> Division of HIV/AIDS Prevention18 Located in the National Center for HIV, STD, and TB Prevention, the division has 65 cooperative agreements (CAs), totaling $250 million, with all states, territories, the District of Columbia, and Puerto Rico, and with six cities (New York City, Houston, Chicago, San Francisco, Los Angeles, and Philadelphia). These projects fund 10,000 counseling and testing sites. Part I of the CA provides funds for counseling, testing, referral, and partner notification; Part II supports health education and risk reduction, including street and community outreach, risk reduction counseling, prevention case management and linkage to other services, and community-level intervention to change perceptions of risk. The CAs require a community planning process whereby health departments, affected communities, providers, and scientists get together to plan the health department's application to the CDC. In addition to cooperative agreements with states, the CDC offers competitive funding grants and demonstration grants. Examples of these vehicles are: (1) 20–40 grants to minority organizations within communities to provide services to meet unmet needs related to HIV/AIDS; and (2) 5–6 demonstration project grants to health departments that emphasize prevention and linkage to care with a particular focus on reducing perinatal transmission. Division of STD Prevention19 Located in the National Center for HIV, STD, and TB Prevention, this division has 65 funded projects totaling $80 million dollars, with all states, territories, the District of Columbia, Puerto Rico, and with six cities (New York City, Chicago, Los Angeles, Philadelphia, San Francisco, and Baltimore). These projects fund 3,000 STD clinics, most of which are located in state and local public health departments. Other sites include some family planning clinics and hospitals. These clinics are the primary source of HIV testing in public facilities, although the population using these clinics is primarily male, poor, uninsured, and experiencing symptoms of an STD. Every patient using clinic services gets pre- and post-test counseling for HIV and education concerning safe sex practices. Because of the demand for services, most of the effort in providing follow-up involved those who test positive; 82% of those who test positive are brought back for follow-up. There are three sources of funding for STD clinics: (1) CDC funds can be used for management, consultation, technical assistance, some staff, and travel; 18 Information provided by the Division of HIV/AIDS Prevention, CDC. 19 Information provided by the Division of STD Prevention, CDC.
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--> (2) state funds can be used for medical supplies, laboratory services, disease intervention, and some staff; and (3) local funds usually provide the facilities and primary staff for the clinic. Division of Adolescent and School Health In addition to monitoring the incidence and prevalence of risks among youth, this division supports every state and territorial education agency and 18 local education agencies that serve cities with the highest number of reported AIDS cases. Division of Adolescent and School Health's (DASHs) efforts in this area focus on assisting these agencies to develop and implement HIV-related school policies and student curricula and training teachers to carry out prevention efforts. Substance Abuse and Mental Health Services Administration Programs An agency under the Department of Health and Human Services, Substance Abuse and Mental Health Services Administration (SAMHSA) has three centers that provide substance abuse and mental health services, with a FY 1997 budget of approximately $1.4 billion. The three centers include: the Center for Mental Health Services (CMHS), the Center for Substance Abuse Prevention (CSAP), and the Center for Substance Abuse Treatment (CSAT). There are two offices within the agency that coordinate services related to women and AIDS—the Office for Women's Services and the Office on AIDS. CSAT administers the block grant program supporting the 10,000 substance abuse treatment facilities throughout the country that receive federal funds, and is responsible for residential and treatment programs for pregnant and postpartum women; demonstration projects that target special populations, including those with HIV; and programs that address the needs of people under the criminal justice system. CSAP has a number of projects focused on women that are ending this year. No new targeted programs are planned. The Prevention and Treatment of Substance Abuse Block Grant Program is funded at $1.3 billion and is intended to address substance abuse in states and cities. It requires that 35% of funds be spent on alcohol prevention and treatment; 35% on drug prevention and treatment; 20% on supporting primary prevention; and 10% for pregnant and postpartum women and women with dependent children. State AIDS Programs State agency staff have programmatic responsibility for administering HIV/AIDS health care, prevention, education, and supportive service programs funded by the state and federal governments. All 50 states, the District of Columbia, Puerto Rico, the U.S. Virgin Islands, and the U.S. Pacific Islands have AIDS
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--> programs at the state or territorial level. The bulk of funding for HIV/AIDS services administered through state AIDS directors comes from the CDC. CDC prevention dollars are provided for testing, counseling, and outreach; Ryan White Title II dollars are provided with the requirement that community planning groups determine how funds are to be distributed; and state funds are provided at state discretion. State AIDS programs fund testing and counseling services, education, and outreach services in existing community-based service settings through grants and contracts; some testing and counseling centers are run directly by the state. National Institutes of Health Research Programs20 One of eight health agencies of the PHS, DHHS, the National Institutes of Health (NIH) is comprised of 24 separate institutes, centers, and divisions. In addition to supporting intramural research, NIH uses 81% of its funding to support the research of non-federal scientists in 1,700 research settings throughout the country and abroad, including universities, medical schools, hospitals, and research institutions. Extramural research grants related to HIV are provided to institutions across the country to conduct peer-reviewed research. These research efforts offer women and children affected by HIV, who meet the protocol criteria, important opportunities to access care through participation in research protocols. One of the Ryan White Title IV program mandates is to assist women and children with HIV in accessing research protocols. The three major clinical trial networks are the Pediatric AIDS Clinical Trials Group (PACTG), the AIDS Clinical Trials Groups (ACTG), and the Terry Beirn Community Programs for Clinical Research on AIDS (CPCRA). ACTG research focuses translating basic research discoveries into clinical research, while the PACTG evaluates interventions to prevent perinatal transmission and to improve the quality of life of HIV-infected infants, children, and adolescents. The CPCRA enrolls adults to studies in primary care settings. The two institutes noted below work closely together and provide the bulk of NIH-supported ACTG research for women and children. National Institute of Child Health and Human Development In FY 1997, the National Institute of Child Health and Human Development (NICHD) budget dedicated almost $23 million to pediatric ACTG research in an independent network of 30 to 40 clinical centers located in 15 states, the District of Columbia, and Puerto Rico. A subset of eleven centers specifically conducts 20 Information provided by the National Institute of Child Health and Human Development, National Institute of Allergy and Infectious Diseases, and the Office of AIDS Research, National Institutes of Health.
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--> research that includes obstetric and newborn patients in addition to pediatric patients. Research funds support individual clinic budgets for staff and patients and care-related services, including enhancement of recruitment and retention of patients. Pregnant women access clinical trials research through the PACTG arm; there are limited opportunities to access treatment unrelated to pregnancy (e.g., cervical dysplasia). Grantees are almost all university, hospital-based clinics and some community-based providers. There is currently a new collaboration with the Ryan White Title IV grantees to establish linkages to research sites related to nutrition research. National Institute of Allergy and Infectious Diseases National Institute of Allergy and Infectious Diseases (NIAID) is the institute that expends the majority of NIH funding for extramural PACTG research. In FY 1997, NIAID dedicated $32 million to PACTG research (32% of which was targeted specifically to women), and $69.6 million to adult ACTG research (approximately 22.5% of which was specifically targeted to women). NIAID has 21 clinical sites (or main units) with multiple subunits, located in 14 states, the District of Columbia, and Puerto Rico. Research dollars are provided in the form of long term cooperative agreements, and grants and are expended for a core of fixed costs related to staffing based on the number of patients in a given period. NIAID conducts the CPCRA described above. Authority For Policy Decisions And Oversight A description of the agencies and bodies that may exercise general or specific authority over some or all of the services provided by providers profiled on the community level accurately reflects the complexity of our health care system. An individual provider may have one or many agencies and/or government and community bodies that have oversight responsibilities and guide policies for service delivery. Providers in the private practice setting are responsible to their licensing boards and the policies and oversight of the organizations with whom they contract to deliver services. Public providers tend to use multiple funding streams and so must respond to the authority of each of the funders, as well as state and local governing bodies. By law and custom, responsibility in health affairs is shared by federal, state, and local authorities. As a result, there is often an effort on the part of federal and state entities to avoid from issuing too many regulations or offering what might be perceived by their respective constituents as "excessive" guidance. Many of these authorities "recommend" rather than "require." The degree to which responsibility or authority is shared among these authorities has fluctuated. The locus of responsibility for decisions about public benefits has clearly shifted over this decade. Recent welfare legislation embodies this fundamental change in how
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--> and where decisions are made about public benefits. Decisions on who should get what benefits and for how long has devolved from the federal to the state level and, in many states, to the local level to varying degrees. The variability that has always existed from community to community in the organization, structure, and funding of health care services has increased accordingly, creating important challenges to mounting an effective effort to reduce HIV perinatal transmission. Important Issues Affecting Services There are a number of important issues that significantly affect the structure, funding, and the delivery of services to women, children, and youth affected by HIV. Although some of these issues have been briefly touched on in the sections that describes the health care system and funding mechanisms, they can be examined as part of the larger picture of significant public policy and health care system changes that have taken place during this decade. Welfare Reform Welfare reform legislation is probably the most sweeping of the changes that have important implications for the health of women and children affected by HIV. The Personal Responsibility Work Opportunity Reconciliation Act (PRWORA), referred to as welfare reform, passed in 1996 and included changes not only to welfare but to the SSI program, food stamps, Medicaid, and immigrant eligibility for means-tested benefits. The welfare program, which almost exclusively served women and children, was replaced by the Temporary Assistance to Needy Families (TANF) block grant program, effectively ending the Aid for Families with Dependent Children (AFDC) entitlement to a guarantee of cash assistance to all eligible individuals. Briefly, recipients may receive benefits for no more than five years over a lifetime and must adhere to work requirements; states may apply even stricter limits. TANF recipients who would have qualified under former AFDC rules are guaranteed Medicaid and pregnant women retain Medicaid eligibility during pregnancy, even if they lose their eligibility for TANF benefits. although states have the option of serving ''current" qualified legal immigrants (those residing in the United States on August 22, 1996), the definition of "qualified immigrants" has been narrowed as has their access to certain benefits; disabled and elderly immigrants who fall in this category and were receiving SSI and derivative Medicaid benefits on the above date may maintain those benefits; new immigrants (those entering the country after passage of the bill) will not be eligible for "federal means-tested public benefits" such as food stamps, TANF, or Medicaid, for their first five years in the United States, but may be
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--> served in community health centers and state MCH programs and receive public health assistance (not Medicaid) for immunizations and testing and treatment of the symptoms of communicable disease; undocumented immigrants are barred from federal public benefits, and from state and local programs, and their presence must be reported to the Immigration and Naturalization Service (INS); and cash assistance is not available to individuals convicted of drug felonies, even if they are seeking drug treatment (Children's Defense Fund, 1997; San Francisco AIDS Foundation, 1997). The impact of these changes on access to care and, therefore, primary and secondary prevention opportunities for reducing perinatal transmission is significant and complex. 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. Women's traditional linkage 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 INS reporting requirements. Women seeking drug treatment may not have the financial support they need because of the prohibition on benefits for those with a prior conviction. While there are still opportunities for many women to access health services, the PRWORA is new and so sweeping that there is still much confusion on the part of potential recipients and those administering the new law. States are just beginning to develop the capacity and systems needed to appropriately inform and educate staff and reach out to potential recipients with information and mechanisms for linkage to appropriate services. Medicaid Some important policy changes affect this program's relationship to HIV prevention and treatment services for women and children. As previously noted, Medicaid plays a critical role in providing health care for low-income people
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--> living with HIV/AIDS, with more than 61.5% of women in care for HIV (Rand, 1998) and 90% of children with AIDS (DHHS, 1998) relying on this program for health care coverage. The costs associated with Medicaid have been rising and there have been several efforts to change the entitlement status of the program, impose per capita caps, and change the structure of payments to providers. While the program remains an entitlement, passage of the Balanced Budget Act of 1997 resulted in several important changes: Medicaid has experienced funding cuts in two important areas that affect HIV services. In response to abuses by states, the disproportionate share hospital (DSH) payments, which compensate hospitals serving a large volume of uninsured and Medicaid patients, have been curbed and reporting requirements imposed. The DSH program is important to health care access for people with HIV and AIDS by supporting such safety net providers as outpatient HIV clinics at public and nonprofit hospitals across the nation. The second cut in Medicaid comes from repeal of the Boren Amendment, which established a standard for reimbursement to hospitals and nursing homes. States must now provide public notice of their rates and how they were calculated. States now have the authority to mandate that beneficiaries enroll in managed care plans without application to the federal government; plans can consist of only Medicaid beneficiaries, and states can impose cost sharing charges allowed under fee for service plans. These changes may well affect the ability of persons with HIV to access services needed for their care (see comments in following section, below.) States now have the option to extend Medicaid coverage for 12 months for all children, whether or not they continue to meet income eligibility tests. This provision is expected to expand coverage by up to one million children. States have the option of creating a Medicaid "buy-in" for persons whose income is under 250% of poverty and who would be eligible for SSI, if their income were not too high. This has important implications for increasing access to Medicaid for women with HIV (Families USA Foundation, 1997). Managed Care Enrollment in managed care arrangements has increased dramatically in this decade. The percentage of employees enrolled in managed care plans increased from 48% in 1992 to 855 in 1997 (Employee Benefit Research Institute, 1998). Almost 50% of Medicaid recipients were enrolled in managed care in 1997, with two states reporting 100% enrollment and five states reporting more than 80% enrollment (HCFA, 1997). The movement into managed care represents a fundamental change in the way health care services are delivered in both the public and the private sector, raising issues of access to care and quality of care. Through public sector managed care arrangements, women, children, and
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--> youth are the population moving most quickly into managed care. This population as a whole and those with or at risk for HIV/AIDS have unique and complex needs requiring a broad array of multidisciplinary medical and support services. Many of the managed care organizations (MCOs) may not have the experience or expertise necessary to work with low-income populations or populations with the complex medical and social needs of those with HIV. They also may not have experience working with multiple public and private providers to assure access to specific services. 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 with the appearance of cost as the dominant factor; limitations placed on the information providers can provide; and insufficient time to meet with providers. Relationships need to be built with the type of providers that adolescents seek out—teen clinics, school health clinics, community family practice sites, and family planning clinics. 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 that some states have chosen is to carve out specific services or populations, such as those with disabilities, so as to ensure a focus on the multiple and special needs of the population. Medicaid managed care arrangements compete for 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 providers for the poor or nearly poor patient. Reimbursement from Medicaid for eligible populations gave these providers the ability to cross-subsidize the uninsured or underinsured patient (Davis, 1997). Medicaid competition is threatening the ability 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). The movement towards managed care has important implications for all those served, particularly for those who have a high level of need. Work is in progress on the national level to establish a patient's bill of rights for managed care settings and to establish oversight mechanisms that include monitoring and evaluation.
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--> Health Insurance Portability and Accountability The Health Insurance Portability and Accountability Act (HIPAA), passed in 1996, attempts to address a number of issues 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 month period 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 they had no previous health care coverage; guarantees the availability of individual health insurance policies for those who leave jobs and maintain 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. The law did not specify what benefits a health plan must include and did not guarantee that health insurance coverage would provide adequate care or be affordable. In addition, there are a number of issues involving AIDS and private insurance coverage that remain unresolved at this time. These include questions about 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. Americans with Disabilities Act The Americans with Disabilities Act (ADA) of 1990 protects against discrimination in the workplace, housing, and public accommodations for people with disabilities, including people living with HIV/AIDS. On June 25, 1998 the decision by the U.S. Supreme Court has important implications for anti-discrimination protections for individuals with asymptomatic HIV disease in employment, insurance, and services offered by business and government (AIDS Action Council, 1998a). The ruling determined that "HIV infection satisfies the statutory and regulatory definition of physical impairment during every stage of the disease." This means that persons with asymptomatic HIV cannot be excluded under the ADA and should have access to non-discriminatory and high quality health care. The decision also determined that reproduction was a major life activity for the purposes of the ADA and that HIV infection limits the ability to reproduce.
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--> Conclusion The current revolution that is taking place in our health care system, as well as the complexities in its structure and funding, both challenge our efforts to institute effective policies for reducing perinatal HIV transmission and provide new opportunities. While multiple efforts have been made to inform providers and promote strategies for reducing perinatal transmission, more needs to be done. There is a need for a broader dissemination of more explicit guidance, the development of incentives for prevention efforts, and identification and maximization of opportunities for intervention. References AIDS Action Council. Bragdon v. Abbott: an HIV Civil Rights Case. 1998a. AIDS Action Council. Medicaid and HIV/AIDS. 1998b. Aliza B, Brown T, Fine A, Lynch L. Partnerships for Healthier Families: Principles for Assuring the Health of Women, Infants, Children, and Youth Under Managed Care Arrangements. Association of Maternal and Child Health Programs. November 1996. Blum RW, Beuhring T, Wunderlich M, Resnick MD. Do not ask, they won't tell: The quality of adolescent health screening in five practice settings. American Journal of Public Health 86:12, 1768, 1996. Brown T, Aliza B. A Changing Epidemic: How State Title V Programs Are Addressing the Spread of HIV/AIDS in Women, Children, and Youth. The Association of Maternal and Child Health Programs, 1995. CDC. 1997 USPHS/IDSA guidelines for the prevention of opportunistic infections in persons infected with human immunodeficiency virus. MMWR 46(RR-12), 1997. Chavkin W, Breitbart V, Elman D, Wise P. National survey of the states: policies and practices regarding drug using pregnant women. American Journal of Public Health 88(1):117–119, 1998. Children's Defense Fund. Health Provisions in the Welfare Law (April 25, 1997). Davis K. Uninsured in an era of managed care. Health Services Research 31:641–649, 1997. Department of Health and Human Services. Fact sheet: Medicaid and acquired immune deficiency syndrome (AIDS) and human immunodeficiency virus (HIV) infection. March 1998. [available on-line: http://hiv.hcfa.gov/medicaid/obs11.htm] Doyle A, Jefferys R, Kelly J. State AIDS Drug Assistance Programs: A National Status Report on Access. Menlo Park, CA: Henry J. Kaiser Family Foundation, 1997 Employee Benefits Research Institute (EBRI). Fact sheet: Characteristics of individuals with employment-based health insurance, 1987–1995. 1997. [www document] URL http://www.ebri.org/facts/0797fact.htm. EBRI. Issues of quality and consumer rights in the health care market. EBRI Issue Brief 196, April 1998. Falik M. Introduction: Listening to women's voices, learning from women's experiences. In Falik MM, Collins KS, eds. Women's Health: The Commonwealth Survey. Baltimore, Md.: Johns Hopkins University Press; 4, 1996. Families USA Foundation. Field report: balanced budget bill enacted. August 1997 George Washington University. School-Based Health Centers. Making the Grade. Washington, D.C.: George Washington University, 1998.
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--> Health Care Financing Administration (HCFA). Managed care trends. National Summary of Medicaid Managed Care Programs and Enrollment. June 30, 1997. [available on-line http://www.hcfa.gov/medicaid/ome1997.htm] HRSA (Health Resources and Services Administration). HIV/AIDS Bureau (December 1997). HRSA. HIV/AIDS Programs (August 1997). Hess C. The organization of maternal and child health services. In Maternal and Child Health Practices. eds., H Wallace, R Nelson, and P Sweeney. Third Party Publishing Co. 4th Edition, 1994. Home Access Health Corporation. Home Access: HIV Counseling and Testing Report. 1997 Kaeser L, Gold R, and Richards C. Title X at 25. Washington, DC.: The Alan Guttmacher Institute, 1996. Kagan J and Aliza B. Opportunities for Reducing Transmission to HIV to Infants: Guidelines for State Title V Program Leadership. 1995. Kaiser Commission on the Future of Medicaid. Fact Sheet: Medicaid's Role for Persons with HIV/AIDS, 1996. Kaiser Commission on Medicaid and Uninsured. Uninsured in America: A Chart Book. Menlo Park, CA: The Henry J. Kaiser Family Foundation, June 1998. Kaiser Family Foundation. Fact Sheet: Medicaid and Managed Care, 1998. Kaiser Family Foundation. Uninsured in America: Key Facts About Gaps in Health Insurance Coverage Today. 1998. Lyons B, Salganicoff A, Rowland D. Poverty, access, and health care, and the Medicaid's critical role for women. In Falik MM, Collins KS, eds. Women's Health: The Commonwealth Survey. Baltimore, Md.: Johns Hopkins University Press, 1996. National Association of WIC Directors. WIC: Building a Better Future for American's Children . Washington, D.C.: WIC Program Office, Food and Nutrition Service, USDA, 1997. RAND. Unpublished data from HIV Cost and Services Utilization Study. 1998. San Francisco AIDS Foundation. Renewing the Commitment: A New Era for HIV/AIDS Care, Treatment and Services. 1997. Wehr E, Fagan M, Blake S, Rosenbaum S. HIV/AIDS Related Provisions of Medicaid Managed Care Contracts. Menlo Park, CA: Henry J. Kaiser Family Foundation. 1998. Weisman, C. Women's use of health care. In Falik MM, Collins KS, eds. Women's Health: The Commonwealth Survey. Baltimore, Md.: Johns Hopkins University Press, 1996. Wyn R, Brown ER, Yu H. Women's use of preventive health services." In Women's Health: The Commonwealth Survey. eds. MM Falik and K Scott Collins. Baltimore, Md.: Johns Hopkins University Press, 1996, 50.
Representative terms from entire chapter: