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Reducing the Odds: Preventing Perinatal Transmission of HIV in the United States (1999)

Chapter: B Context of Services for Women and Children Affected by HIV/AIDS

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Suggested Citation:"B Context of Services for Women and Children Affected by HIV/AIDS." Institute of Medicine and National Research Council. 1999. Reducing the Odds: Preventing Perinatal Transmission of HIV in the United States. Washington, DC: The National Academies Press. doi: 10.17226/6307.
×

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.

Suggested Citation:"B Context of Services for Women and Children Affected by HIV/AIDS." Institute of Medicine and National Research Council. 1999. Reducing the Odds: Preventing Perinatal Transmission of HIV in the United States. Washington, DC: The National Academies Press. doi: 10.17226/6307.
×

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).

Suggested Citation:"B Context of Services for Women and Children Affected by HIV/AIDS." Institute of Medicine and National Research Council. 1999. Reducing the Odds: Preventing Perinatal Transmission of HIV in the United States. Washington, DC: The National Academies Press. doi: 10.17226/6307.
×

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.

Suggested Citation:"B Context of Services for Women and Children Affected by HIV/AIDS." Institute of Medicine and National Research Council. 1999. Reducing the Odds: Preventing Perinatal Transmission of HIV in the United States. Washington, DC: The National Academies Press. doi: 10.17226/6307.
×

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.

Suggested Citation:"B Context of Services for Women and Children Affected by HIV/AIDS." Institute of Medicine and National Research Council. 1999. Reducing the Odds: Preventing Perinatal Transmission of HIV in the United States. Washington, DC: The National Academies Press. doi: 10.17226/6307.
×
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.

Suggested Citation:"B Context of Services for Women and Children Affected by HIV/AIDS." Institute of Medicine and National Research Council. 1999. Reducing the Odds: Preventing Perinatal Transmission of HIV in the United States. Washington, DC: The National Academies Press. doi: 10.17226/6307.
×

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).

Suggested Citation:"B Context of Services for Women and Children Affected by HIV/AIDS." Institute of Medicine and National Research Council. 1999. Reducing the Odds: Preventing Perinatal Transmission of HIV in the United States. Washington, DC: The National Academies Press. doi: 10.17226/6307.
×

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).

Suggested Citation:"B Context of Services for Women and Children Affected by HIV/AIDS." Institute of Medicine and National Research Council. 1999. Reducing the Odds: Preventing Perinatal Transmission of HIV in the United States. Washington, DC: The National Academies Press. doi: 10.17226/6307.
×

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.

Suggested Citation:"B Context of Services for Women and Children Affected by HIV/AIDS." Institute of Medicine and National Research Council. 1999. Reducing the Odds: Preventing Perinatal Transmission of HIV in the United States. Washington, DC: The National Academies Press. doi: 10.17226/6307.
×

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.

Suggested Citation:"B Context of Services for Women and Children Affected by HIV/AIDS." Institute of Medicine and National Research Council. 1999. Reducing the Odds: Preventing Perinatal Transmission of HIV in the United States. Washington, DC: The National Academies Press. doi: 10.17226/6307.
×

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.

Suggested Citation:"B Context of Services for Women and Children Affected by HIV/AIDS." Institute of Medicine and National Research Council. 1999. Reducing the Odds: Preventing Perinatal Transmission of HIV in the United States. Washington, DC: The National Academies Press. doi: 10.17226/6307.
×

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

Suggested Citation:"B Context of Services for Women and Children Affected by HIV/AIDS." Institute of Medicine and National Research Council. 1999. Reducing the Odds: Preventing Perinatal Transmission of HIV in the United States. Washington, DC: The National Academies Press. doi: 10.17226/6307.
×

with the state. In states with a high incidence of HIV, additional money is more likely to be provided. Thirty percent of the sites are dedicated, mostly anonymous, and are frequently linked to medical facilities; 30% are located in STD clinics, and the remainder are a mix of provider sites, including community health centers, hospitals, prisons, family planning clinics, drug treatment centers, and, occasionally, private providers.

Private Providers

The following providers are important sources of primary care and obstetrical care for women.

Obstetricians/Gynecologists

More than 37,000 physicians in the United States specialize in obstetrics and gynecology, 28,000 of whom are actively involved in providing obstetrical care. Obstetrician-gynecologists are often used by women for both specialty care related to reproductive health and primary care (Weisman et al., 1996). Ninety percent of obstetricians-gynecologists are affiliated with the American College of Obstetricians and Gynecologists (ACOG), a professional association.

ACOG has disseminated the PHS guidelines for counseling and antibody testing to prevent HIV infection and AIDS, as well as specific information to its members related to prevention of perinatal HIV transmission, including (1) an educational bulletin in January 1997 that discussed clinical, legal, and ethical issues and recommended that all pregnant women be counseled and encouraged to be tested by the provider; (2) ethical guidance for patient testing (October 1995); and (3) a Committee on Ethics "opinion" related to physician's responsibilities. ACOG has also produced patient education materials for providers, specifically recommending counseling and testing.9

Pediatricians

There are approximately 53,000 members of the American Academy of Pediatrics (AAP), an estimated 75% to 80% of board-certified pediatricians (not all of whom practice in the United States). Pediatricians are concerned with the physical and psychosocial growth, development, and health of the individual child beginning prior to birth throughout infancy, childhood, adolescence, and early adulthood. Surveys of academy membership indicate that 90% to 95% provide direct patient care and 75% provide health supervision or primary care for at least some of their practice time. Thirty-five percent of children visiting a

9  

Data and information provided by ACOG, April 10, 1998.

Suggested Citation:"B Context of Services for Women and Children Affected by HIV/AIDS." Institute of Medicine and National Research Council. 1999. Reducing the Odds: Preventing Perinatal Transmission of HIV in the United States. Washington, DC: The National Academies Press. doi: 10.17226/6307.
×

pediatrician in a typical week are 2 or under, while only 17% of the cases are adolescents (ages 12–21). No data are available to indicate what percentage of pediatricians are conducting HIV counseling and testing or what percentage of the cases seen are HIV-positive. 10

The AAP has issued several statements to its members that follow the lead of the PHS guidelines: (1) The Role of Pediatricians in Prevention and Intervention (1993); (2) Perinatal Human Immunodeficiency Virus Testing (1996); (3) Evaluation and Medical Treatment of the HIV-Exposed Infant (1997); and (4) a joint statement with ACOG on testing for HIV (1997).

Family Practice Practitioners11

There are more than 84,000 practicing family physicians, family practice residents, and medical students with an interest in family practice. Family physicians (FPs) and general practitioners (GPs) are responsible for more outpatient medical visits than any other specialty and place a high priority on preventive health services. More than 30% provide obstetrical care in their practice and more than 90% provide pediatric care. The National Ambulatory Medical Care Survey of 1993 revealed that 0.12% of all office visit conditions in family practice were for HIV; counseling in HIV transmission was given in 0.54% of visits by GPs-FPs; HIV testing was included in 0.13% of visits.

The American Academy of Family Physicians has adopted as its policy the section "Guidelines for Counseling and Testing for HIV Antibody" from the CDC's (1987) PHS guidelines. The academy recommends universal HIV counseling and voluntary testing for all pregnant women and supports the enactment of state laws providing for reporting HIV.

Nurse Midwives12

There are more than 5,000 nurse midwives in clinical practice in the country and more than half are employed in a hospital or physician practice. Nurse-midwifery practice is legal in all 50 states and the District of Columbia. Certified nurse midwives (CNMs) are educated in nursing and midwifery and provide primary care to women of childbearing age, including prenatal, labor, and delivery care, postpartum care; gynecological exams; newborn care; assistance with family planning decisions; preconception care; menopausal management; and counseling in health maintenance and disease prevention.

Nurse midwives attended more than 205,000 births in the United States in

10  

Data provided by the AAP.

11  

Information provided by the American Academy of Family Physicians.

12  

Information in this section provided by the American College of Nurse Midwives, Washington, DC.

Suggested Citation:"B Context of Services for Women and Children Affected by HIV/AIDS." Institute of Medicine and National Research Council. 1999. Reducing the Odds: Preventing Perinatal Transmission of HIV in the United States. Washington, DC: The National Academies Press. doi: 10.17226/6307.
×

1994, more than 5% of all the nation's births. Ninety percent of visits to CNMs are for preventive and primary care; 20% for care outside the maternity cycle. Seventy percent of women seen by a CNM are "considered vulnerable by virtue of their age, socioeconomic status, education, ethnicity, or location of residence."

The American College of Nurse Midwives first issued a statement on HIV/AIDS in 1991 with revisions in 1996 and 1997. The statement calls for all women to be counseled on HIV risk behaviors and risk reduction strategies and, following counseling, to be offered HIV testing with informed consent.

Nurse Practitioner13

There are approximately 50,000 nurse practitioners in the United States. A nurse practitioner is a registered nurse who has advanced education and clinical training in a health care specialty area, including women's health, neonatal/perinatal health, family practice, and pediatrics. Practice settings include private offices, community health centers, public health clinics, hospital clinics, and family planning clinics. Approximately 67% of nurse practitioners practice in a private setting and 33% work in a public setting. Many of their patients have incomes below the federal poverty level.

The American Academy of Nurse Practitioners published the PHS guidelines in its journal and disseminated a joint letter with CDC calling members' attention to the guidelines.

Managed Care Organizations

These organizations provide health services through a single point of entry and formal enrollment and manage patient care to assure an emphasis on preventive and primary care and a reduction in inappropriate utilization and costs (Aliza et al., 1996). A variety of managed care arrangements now play a major role in providing health care, including full risk plans (health maintenance organizations [HMOs] or health insurance organizations [HIOs]), limited risk prepaid health plans (PHPs) and fee for service primary care case management (PCCM). Managed care organizations (MCOs) either employ or contract with providers for patient care services. The number of persons enrolled in such plans is growing rapidly in both the public and the private sector, but especially among women, children, and youth enrolled in Medicaid, the predominant payer for the population affected by HIV. In 1996, 13.3 million Medicaid beneficiaries were enrolled in some form of managed care, a fourfold increase since 1991; 90% of HIV-positive mothers are covered by Medicaid (Kaiser Family Foundation, 1998).

13  

Information in this section provided by the American Academy of Nurse Practitioners, Washington, DC.

Suggested Citation:"B Context of Services for Women and Children Affected by HIV/AIDS." Institute of Medicine and National Research Council. 1999. Reducing the Odds: Preventing Perinatal Transmission of HIV in the United States. Washington, DC: The National Academies Press. doi: 10.17226/6307.
×

All states, except Alaska, are pursuing some type of managed care initiative. Enrollment of Medicaid recipients averages almost 50% across states, and ranges from less than 10% to 100%. The Balanced Budget Act of 1997 allows state Medicaid programs to: (1) convert to managed care without obtaining waivers; (2) require enrollment for most beneficiaries; and (3) permit MCOs easier entry into the Medicaid managed care market. Managed care contracts, like traditional insurance contracts, do not typically identify specific conditions. In 1996, 18 states referenced counseling and testing as a covered service, usually only in the context of family planning services, and one state (Florida), assured access to the AIDS Clinical Trials Group protocol number 076 (ACTG 076) (Wehr et al., 1998).

AIDS Service Organizations14

AIDS service organizations (ASOs) can be loosely defined as nonprofit community-based organizations offering a range of services to the affected population. Because of the range of services offered and funding received by these organizations, not only is it difficult to define them, but there is no precise count of the number of organizations. Most ASOs are located in cities receiving funds from the Ryan White Title I Emergency Relief Grant Program for Eligible Metropolitan Areas—areas with a high incidence of HIV/AIDS—although there are also many in smaller cities and towns throughout the country.

Population served: This generally includes the affected population as a whole, although some organizations may focus their efforts on a particular segment of the population (homosexual men, minorities, women).

Services provided: These range from referral to counseling and testing, and education, to the full range of comprehensive clinical and support services offered by a handful of organizations in major metropolitan areas. Approximately 90 ASOs receive funding directly from the CDC to provide health education/risk reduction services defined as outreach, risk reduction counseling, prevention case management, and community-level intervention to change perceptions of risk.

Home Testing/Counseling15

The first home collection HIV test was approved in 1996 and was available from two manufacturers until June 1997. There is currently only one manufacturer, Home Access Health Corporation, that provides testing kits. The kits costs $40–$50 and allow users to remain anonymous; results are obtained by telephone

14  

Information provided by the AIDS Action Council, Washington, DC.

15  

Data from Home Access Health Corporation (1996). Home Access: HIV Counseling and Testing Report. Home Access Health Corporation 1(1) September 1997.

Suggested Citation:"B Context of Services for Women and Children Affected by HIV/AIDS." Institute of Medicine and National Research Council. 1999. Reducing the Odds: Preventing Perinatal Transmission of HIV in the United States. Washington, DC: The National Academies Press. doi: 10.17226/6307.
×

BOX B.1 Data Reported by Home HIV Testing Kit Manufacturers

  • Tests submitted from 50 states, D.C., Puerto Rico, and the Virgin Islands;
  • 97% of users called for results, compared to 44% in STD clinics and 83% in voluntary counseling and testing clinics (CDC, 1997)
  • Prevalence rate of 0.9% was three times the general U.S. prevalence of 0.3%, but less than that of individuals tested at publicly funded test sites (1.6%);
  • 5% of samples were unsuitable;
  • Women comprised of 37% of home testing kit users, with 17% testing positive;
  • Home kits are being used by many individuals who have not been previously tested;
  • Many of those testing positive expected their tests to be negative;
  • 65% of HIV-positive clients received referrals for services;
  • 23% refused referrals citing an existing source of care, and 5% hung up upon receive a positive result; 10% called back for additional counseling; and 8% asked the counselor to discuss the results with their partner.

using a code number. The home user collects blood spots at home and sends the specimens by mail for laboratory testing. Users are required to telephone for recorded pre-test counseling and are offered the opportunity to speak with a trained counselor. Positive results are provided by a counselor and negative results are received through a recorded message, with the option to speak to a counselor.

Supporters of home testing expected that it would increase access to testing and encourage individuals who might not be tested otherwise. Manufacturers agreed to report data to the CDC. For home test data, see Box B.1.

Sources Of Funding For HIV/AIDS Services For Women, Children, And Adolescents

The number of Americans who do not have health insurance coverage has continued to grow. Nearly 41 million persons under age 65 were without public or private health insurance in 1996 (Kaiser Commission on Medicaid and the Uninsured, 1998). Approximately 19% of women of child-bearing age (18–34 years) and 10% of children under 18 are not insured (Kaiser Commission on Medicaid and Uninsured, 1998). 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 fact that an individual or family does not have health insurance significantly influences their access to health care services and, therefore, the ability to access important preventive health services such as counseling and testing for HIV. The uninsured are less likely to see a

Suggested Citation:"B Context of Services for Women and Children Affected by HIV/AIDS." Institute of Medicine and National Research Council. 1999. Reducing the Odds: Preventing Perinatal Transmission of HIV in the United States. Washington, DC: The National Academies Press. doi: 10.17226/6307.
×

doctor and three to four times more likely to report having problems accessing the health care they need. They are also more likely to delay or go without medical care, even if the lapse in coverage was only temporary. The uninsured are twice as likely as those with private insurance to be hospitalized for avoidable complications (Kaiser Family Foundation, 1998).

Maximizing prevention of HIV/AIDS and its transmission requires a broad array of services at the community level—outreach, education, counseling, testing, access to treatment and medications, and support services. Many services at the community level receive funding and/or support from multiple federal, state, and both public and private local sources, including philanthropy.

Private Insurance

Most women of childbearing age (70%) and children (66%) have their health care paid for through private insurance.16 Private insurance is usually obtained directly through employment or as a dependent of an employed person. Private health insurance on an individual basis is much more expensive, and the percentage has declined steadily over the past decade (EBRI, 1997). In 1996 only 15% of women in care 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 (Rand, 1998). The number with private insurance declined as the disease progressed to AIDS (CD4 count below 200), while the number with public insurance increased to 70% (Rand, 1998).

With developments in HIV prevention and treatment options and the promulgation of PHS guidelines by the CDC in 1994, local, state, and federal agencies have made multiple efforts, especially in states and communities with a high incidence of HIV infection, to inform providers and the public and to promote counseling and testing of pregnant women wherever services are offered. Federal monies flow into the community either directly through grants to public and private providers or indirectly, through state agencies, which in turn allocate funds in a manner specific to their mandate.

Federal funds consist of project or program dollars that support administrative and/or clinical and support services (e.g., Ryan White Comprehensive AIDS Resources Emergency (CARE) Act, Title V MCH, Community Health Centers), and reimbursement dollars for specific services (Medicaid) and pharmaceuticals (ADAP). State funding consists of matching fund contributions required by a specific program (e.g., Title V MCH services), shared funding (e.g., CDC programs) or supplemental funds used to expand service support. Community providers also often receive grants from foundations and local governments to provide

16  

Unpublished estimates from the Kaiser commission on Medicaid and Uninsured. Based on the March 1996 Current Population Survey, using ages 18-44 for women and under 18 for children.

Suggested Citation:"B Context of Services for Women and Children Affected by HIV/AIDS." Institute of Medicine and National Research Council. 1999. Reducing the Odds: Preventing Perinatal Transmission of HIV in the United States. Washington, DC: The National Academies Press. doi: 10.17226/6307.
×

services, and some engage in fund-raising from the individuals and businesses in their community.

The following discussion presents a brief description of the major sources of federal funding reaching the community. A number of smaller funding sources are scattered throughout federal agencies in the form of grants to the providers discussed in the previous section or in the form of demonstration grants.

Medicaid

Medicaid (Title XIX of the Social Security Act), the second largest publicly financed health care program, provided health and long-term care coverage to approximately 36.8 million Americans in 1996—the elderly, the disabled, women, and children (DHHS, 1998). 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). Medicaid is the largest single payer of direct medical services for people with AIDS, totaling approximately $3.5 billion in FY 1998 (DHHS, 1998).

Medicaid is an entitlement that guarantees eligible individuals access to a minimum level of benefits, established by the federal government, regardless of where they live, but individuals must meet state income and resource criteria and fall within specific categories. States have the option, however, of adding eligibles and services to their Medicaid program from a federally established list and still receiving a federal match. Thirty-four states offer a "medically needy" option that permits those with too much income to otherwise qualify by offsetting their excess income with medical or remedial expenses. Medicaid covers only 62% of the poor, and since the 1996 legislation, coverage for legal immigrants, children with disabilities, and individuals with substance abuse and alcoholism has been either eliminated or restricted (AIDS Action Council, 1998b). In most states, persons eligible for SSI disability benefits are automatically eligible for Medicaid.

States share the cost of the program with the federal government, paying between 20% and 50% of the cost. The full range of Medicaid services identified in a state plan must be provided to persons with HIV disease. Some states offer optional services, such as targeted case management, preventive services, and hospice care. 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 HIV transmission. Although states are required to cover these drugs for people on Medicaid and can 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." Medicaid has issued a directive to states requiring that those which include drugs and cover the HIV population in managed care, and to ensure that

Suggested Citation:"B Context of Services for Women and Children Affected by HIV/AIDS." Institute of Medicine and National Research Council. 1999. Reducing the Odds: Preventing Perinatal Transmission of HIV in the United States. Washington, DC: The National Academies Press. doi: 10.17226/6307.
×

those drugs are available in managed care formularies. Medicaid covers the provision of ZDV to HIV-positive pregnant women and their infants to prevent the transmission of HIV. Medicaid's Early and Periodic Screening, Diagnostic, and Treatment (EPSDT) Program provides services to children and adolescents (under 21) that are ''medically reasonable and necessary," whether they are identified in the plan or not.

The dramatic growth in Medicaid's use of managed care over the last decade has moved many of those with HIV into the managed care setting and placed increased demands on states to monitor and assure access to the full range of quality services needed for management of HIV within managed care organizations (see the discussion of Medicaid issues in the section Important Issues Affecting Services).

Social Security

Social Security has two programs that can offer benefits to eligible persons with HIV/AIDS. For persons who work, Social Security Disability Insurance (SSDI) provides monthly benefits to persons disabled by a medical condition that is expected to last at least a year or end in death and is serious enough to prevent them from doing substantial work. The amount of the monthly benefit depends upon how much was earned while working. After 24 months on SSDI, the recipient becomes eligible for Medicare, which helps pay for hospital and hospice care, lab tests, home health care, and other medical services.

Supplemental Security Income (SSI) is intended for those who have not worked 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.

Child Health Insurance Program

Recently enacted, Child Health Insurance Program (Title XXI-Social Security Act) (CHIP) is intended to enable states to expand health insurance coverage to low-income children up to age 19. About $40 billion in federal funds will be provided over the next 10 years with a requirement for matching state funds. States may expand the Medicaid program and/or create or expand a separate state health insurance program. States must submit a state plan (17 states had filed plans as of February 1998) that includes standards and methods for establishing and continuing eligibility and for finding and enrolling eligible children. Eligibility is limited to children whose families have incomes at or below 200% of the poverty level or 50% above the state's current Medicaid eligibility limit and who are not eligible for Medicaid or covered by other health insurance. States may choose how to determine family income.

Suggested Citation:"B Context of Services for Women and Children Affected by HIV/AIDS." Institute of Medicine and National Research Council. 1999. Reducing the Odds: Preventing Perinatal Transmission of HIV in the United States. Washington, DC: The National Academies Press. doi: 10.17226/6307.
×

States that choose to expand their Medicaid program must provide the same benefits under CHIP. States that do not expand Medicaid can either choose popular benefit packages or develop equivalent ones. In response to the information that 11 million infants, children, and adolescents were uninsured last year, 3 million of whom were estimated to be eligible for Medicaid, CHIP requires and supports outreach to Medicaid-eligible children.

There are important implementation issues that will affect eligibility and services for the HIV-infected population. If a state chooses to expand Medicaid with CHIP funds, the comprehensive Medicaid benefit package would be available to children and become an entitlement. Choosing a separate health insurance program that uses commercial plan packages may not meet the multiple special needs of a child with HIV/AIDS and the benefits can be capped by the state's allocation. A separate plan would also allow for premiums and cost sharing, while a Medicaid expansion would preclude passing on costs to families in the form of cost sharing. Some state Medicaid plans, however, have received waivers for cost sharing. No matter which plan a state chooses, it has considerable flexibility in determining family incomes and which groups of children to cover.

Health Resources and Services Administration17

Health Resources and Services Administration (HRSA) is located within the DHHS and contains four bureaus, three of which directly support services that benefit individuals and families affected by HIV/AIDS—the HIV/AIDS Bureau, the Bureau of Primary Health Care, and the Bureau of Maternal and Child Health. The following are the major HRSA programs supporting service delivery on the community level.

Ryan White Programs (Titles I, II, III, IV, and Part F)

The Ryan White CARE Act, administered by the HIV/AIDS Bureau, funds the delivery of HIV/AIDS care, services, and training. The purpose of the act was to improve the quality and availability of care for people with HIV/AIDS and their families. Total appropriations for the CARE Act for FY 1998 were $1.15 billion. Amendments to the Ryan White CARE Act in 1996 intensified the focus on prevention of perinatal HIV transmission and provided additional funding to states adopting the new CDC guidelines for offsetting costs related to such activities as outreach, voluntary testing for HIV, and mandatory testing of newborns.

Title I: HIV Emergency Relief Grant Program for Eligible Metropolitan Areas

Formula and supplemental grants to Eligible Metropolitan Areas (EMAs)

17  

Information on Ryan White titles from HRSA (1997a,b). Data provided by the HIV/AIDS Bureau.

Suggested Citation:"B Context of Services for Women and Children Affected by HIV/AIDS." Institute of Medicine and National Research Council. 1999. Reducing the Odds: Preventing Perinatal Transmission of HIV in the United States. Washington, DC: The National Academies Press. doi: 10.17226/6307.
×

disproportionately affected by the HIV epidemic. Grants are awarded to the chief elected official of the city or county that administers the health agency providing services to the greatest number of people living with HIV in the EMA. An HIV health services planning council representative of providers and people living with AIDS sets priorities for the allocation of funds. Services may include outpatient health care, support services, and inpatient case management. Providers may be public or nonprofit entities. There are 49 EMAs in 19 states, Puerto Rico, and the District of Columbia.

At a minimum, the city must allocate a percentage of grant funds for providing services to women, infants, and children, including treatment measures to prevent perinatal transmission of HIV, equal to the percentage of women, infants, and children with AIDS in the total AIDS population. HRSA FY 1995 data indicate that overall, 34% of those served by Title I grantees were women and children.

Title II: HIV Care Grants to States

Formula grants are given to states and territories for health care and support services. Grants are awarded to the state agency designated by the governor, usually the health department. Services may include home- and community-based health care and support services, continuation of health insurance coverage, and pharmaceutical treatments through the AIDS Drug Assistance Program (ADAP). HRSA data indicate that in 1995, 25% of those served by Title II grantees were women and children.

ADAP provides funds to states to make protease inhibitors and other therapies available to uninsured and underinsured individuals with HIV. These funds are available in all 50 states, the District of Columbia, Puerto Rico, the Virgin Islands, and Guam. Administered by state AIDS directors, each state sets its own financial and medical eligibility criteria, and determines the type and number of drugs covered and their purchase and distribution. In 1996, 83,000 persons with HIV disease were served; $52 million in supplemental funds were appropriated in 1996 to supplement the $53 million committed by states from their Title II awards. The total national ADAP budget for FY 1997 was $385 million, a 221% increase from FY 1996, with the majority of funds coming from federal sources, including the $167 million designated for ADAP (Doyle et al., 1997).

ADAP is the second largest source of payment for HIV/AIDS drugs and is a "last resort" payment program that varies significantly from state to state as to who has access. Fifteen states have waiting lists for ADAP enrollment and/or for access to protease inhibitors (AIDS Policy Center for Children, Youth, and Families, 1998). 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 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 strongly recommended in the 1997 guidelines, and only two states had the full complement recommended. (CDC, 1997; Doyle et al., 1997).

Suggested Citation:"B Context of Services for Women and Children Affected by HIV/AIDS." Institute of Medicine and National Research Council. 1999. Reducing the Odds: Preventing Perinatal Transmission of HIV in the United States. Washington, DC: The National Academies Press. doi: 10.17226/6307.
×
Title III: HIV Early Intervention Services

Grants are awarded for early intervention services for low-income, medically underserved people in existing primary care systems. To date, 166 facilities in 34 states, Puerto Rico, and the District of Columbia have been awarded funds. Nearly half of the funds have been given to community and migrant health centers; the other half have been distributed to homeless programs, local health departments, family planning programs, diagnostic and treatment centers for hemophilia, federally qualified health centers, and private nonprofits. In FY 1995, 39% of the programs targeted services to women and children.

Title IV: Coordinated HIV Services and Access to Research for Children, Youth, Women, and Families

Grants are awarded to (1) promote the development and operation of systems of primary health care, social services, and outreach that benefit children, youth, women, and families in a comprehensive, community-based, family-centered system of care; (2) emphasize prevention within systems to reduce the spread of HIV infection; and (3) link comprehensive systems of care with HIV/AIDS clinical research trials and other research activities, thereby increasing access to care. There are currently 65 projects funding 350 care sites in 27 states, Puerto Rico, and the District of Columbia, serving mostly poor, minority families with limited access to transportation and housing. Data from 1996 indicate that 11,200 adolescents were served, 14% of whom were pregnant. Approximately 100,000 adolescent and adult women were served through Title IV prevention, outreach, and education efforts.

In collaboration with the Special Projects of National Significance (SPNS) program, Title IV funds the Women's Initiative for HIV Care and Reduction of Perinatal HIV Transmission. Three-year cooperative agreements have been awarded to ten sites in ten states to develop models of care that enhance outreach and HIV counseling and testing services for women of childbearing age, especially during pregnancy. The program also offers perinatal ZDV prophylaxis and ongoing care for mothers with HIV and their children. Program goals include (1) facilitation of early identification through outreach, counseling, and voluntary testing; (2) facilitation of access to and utilization of a comprehensive system of care that includes ZDV prophylaxis to reduce perinatal HIV transmission; (3) promotion of consumer education; (4) training of providers; and (5) evaluation of the efficacy of strategies and models.

Title V (formerly Part F)

SPNS funding supports the development of models of HIV/AIDS care designed to address hard to reach populations and to be replicable. In 1996 there were 62 grantees focusing on a variety of issues—including, for example, managed care, infrastructure development, training, reduction of barriers for rural residents, women, adolescents, and children, integration of mental health and primary care services, and services for correctional populations.

Suggested Citation:"B Context of Services for Women and Children Affected by HIV/AIDS." Institute of Medicine and National Research Council. 1999. Reducing the Odds: Preventing Perinatal Transmission of HIV in the United States. Washington, DC: The National Academies Press. doi: 10.17226/6307.
×

Three of the grantees were women centered programs. The SPNS program has collaborated with the SAMHSA and the National Institute of Mental Health, to co-fund eleven mental health services demonstration projects for people living with HIV/AIDS.

The HIV/AIDS Dental Reimbursement Programs assist dental schools and post-doctoral dental programs with uncompensated costs incurred in providing oral health treatment to HIV-positive patients.

The AIDS Education and Training Centers is a national network of 15 centers that conduct education and training programs for health care providers who want to learn more about the counseling, diagnosis, treatment and management of care for individuals with or at risk for HIV/AIDS. These centers work with community-based HIV/AIDS organizations, health professions schools, hospitals, health departments, community health centers, medical societies, and other organizations.

Maternal and Child Health Services Block Grant

Administered by the Maternal and Child Health Bureau (MCH), the Title V (Social Security Act) MCH Services Block Grant enables state health agencies to establish a state-level program consisting of both the MCH and Children with Special Health Care Needs (CSHCN) programs to form the locus of responsibility in each state for health-related services to mothers and children. The State Title V MCH program is a federal–state partnership in which states are allowed considerable discretion in determining how to use federal funds to meet the unique needs of their respective jurisdictions. Although activities vary from state to state and depend upon how the state is organized, MCH and CSHCN programs engage in such core public health activities as assessment, policy development, and assurance. Assurance activities include, but are not limited to direct and indirect support of clinical and support services for women and children, including those affected by HIV/AIDS. While some states directly provide services in the community or on a regional level, the bulk of support for service delivery is provided indirectly through grants and contracts with community-based providers, including local health departments, community health centers, hospitals, university medical centers, school-based and school-linked health clinics and programs, public and private community agencies, and private providers. Total Title V appropriations for FY 1998 were $683 million, with $564.9 million allocated to states on a formula basis in the form of a block grant.

States must match federal funds $3 for every $4 and must dedicate 30% of block grant funding to preventive and primary care for children, and 30% for children with special health care needs. Most of the remaining funds are used for pregnant women and infants. Title V programs serve more than 17 million women of reproductive age, infants, children, and youth. Roughly one-third of all pregnant

Suggested Citation:"B Context of Services for Women and Children Affected by HIV/AIDS." Institute of Medicine and National Research Council. 1999. Reducing the Odds: Preventing Perinatal Transmission of HIV in the United States. Washington, DC: The National Academies Press. doi: 10.17226/6307.
×

women in the United States receive Title V-supported prenatal care. A 1995 survey of Title V programs (Brown and Aliza, 1995), indicated that children with HIV/AIDS are eligible for preventive and primary care services in all Title V MCH, programs and for CSHCN services, including case management, in 90% of the programs reporting. A high degree of collaboration related to HIV/AIDS was noted with family planning programs, state AIDS offices, STD programs, local health agencies, and Ryan White activities, particularly the Title IV program for women, children, youth, and families.

In November 1995, the Association of Maternal and Child Health Programs developed and distributed to all state Title V MCH and CSHCN programs, a document entitled Opportunities for Reducing Transmission of HIV to Infants: Guidelines for State Title V Program Leadership (Kagan and Aliza, 1995).

Federal Health Center Programs

Administered by the Bureau of Primary Health Care, the four federal health center programs (Section 330 of the Public Health Service Act) consist of the migrant health centers program, health care for the homeless, health services for residents of public housing, and the community health center program. These programs, formerly authorized under Sections 329, 330, 340, and 340A, have been consolidated under one section, Section 330, and are an important source of funding for services in specific geographical areas designated as underserved. The total appropriation for FY 1998 is $826 million.

Services required of health centers includes primary care services, diagnostic laboratory and radiologic services, preventive health services (prenatal and perinatal services, screening for breast and cervical cancer, well child services, immunizations, screening for communicable diseases, elevated blood lead levels and cholesterol, pediatric eye, ear, and dental screenings, family planning services, preventive dental services), emergency medical services, and pharmaceutical services. Health centers also are required to provide referrals to providers, including substance abuse and mental health services, patient case management services, support services, and education of patients and the general population.

Centers for Disease Control and Prevention Programs

The CDC is an agency of the DHHS. Its purpose is to promote health and quality of life by preventing and controlling disease, injury, and disability. The CDC encompasses eleven centers, institutes, and offices. The National Center for HIV, STD, and TB Prevention is the major locus for HIV prevention activities. The Center for Chronic Disease Prevention and Health Promotion also plays a role in HIV prevention and the Division of Adolescent and School Health supports counseling related to HIV/AIDS in the school health setting.

Suggested Citation:"B Context of Services for Women and Children Affected by HIV/AIDS." Institute of Medicine and National Research Council. 1999. Reducing the Odds: Preventing Perinatal Transmission of HIV in the United States. Washington, DC: The National Academies Press. doi: 10.17226/6307.
×
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.

Suggested Citation:"B Context of Services for Women and Children Affected by HIV/AIDS." Institute of Medicine and National Research Council. 1999. Reducing the Odds: Preventing Perinatal Transmission of HIV in the United States. Washington, DC: The National Academies Press. doi: 10.17226/6307.
×

(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

Suggested Citation:"B Context of Services for Women and Children Affected by HIV/AIDS." Institute of Medicine and National Research Council. 1999. Reducing the Odds: Preventing Perinatal Transmission of HIV in the United States. Washington, DC: The National Academies Press. doi: 10.17226/6307.
×

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.

Suggested Citation:"B Context of Services for Women and Children Affected by HIV/AIDS." Institute of Medicine and National Research Council. 1999. Reducing the Odds: Preventing Perinatal Transmission of HIV in the United States. Washington, DC: The National Academies Press. doi: 10.17226/6307.
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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

Suggested Citation:"B Context of Services for Women and Children Affected by HIV/AIDS." Institute of Medicine and National Research Council. 1999. Reducing the Odds: Preventing Perinatal Transmission of HIV in the United States. Washington, DC: The National Academies Press. doi: 10.17226/6307.
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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
Suggested Citation:"B Context of Services for Women and Children Affected by HIV/AIDS." Institute of Medicine and National Research Council. 1999. Reducing the Odds: Preventing Perinatal Transmission of HIV in the United States. Washington, DC: The National Academies Press. doi: 10.17226/6307.
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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

Suggested Citation:"B Context of Services for Women and Children Affected by HIV/AIDS." Institute of Medicine and National Research Council. 1999. Reducing the Odds: Preventing Perinatal Transmission of HIV in the United States. Washington, DC: The National Academies Press. doi: 10.17226/6307.
×

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
Suggested Citation:"B Context of Services for Women and Children Affected by HIV/AIDS." Institute of Medicine and National Research Council. 1999. Reducing the Odds: Preventing Perinatal Transmission of HIV in the United States. Washington, DC: The National Academies Press. doi: 10.17226/6307.
×
  • 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.

Suggested Citation:"B Context of Services for Women and Children Affected by HIV/AIDS." Institute of Medicine and National Research Council. 1999. Reducing the Odds: Preventing Perinatal Transmission of HIV in the United States. Washington, DC: The National Academies Press. doi: 10.17226/6307.
×
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.

Suggested Citation:"B Context of Services for Women and Children Affected by HIV/AIDS." Institute of Medicine and National Research Council. 1999. Reducing the Odds: Preventing Perinatal Transmission of HIV in the United States. Washington, DC: The National Academies Press. doi: 10.17226/6307.
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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.

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Suggested Citation:"B Context of Services for Women and Children Affected by HIV/AIDS." Institute of Medicine and National Research Council. 1999. Reducing the Odds: Preventing Perinatal Transmission of HIV in the United States. Washington, DC: The National Academies Press. doi: 10.17226/6307.
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Page 188
Suggested Citation:"B Context of Services for Women and Children Affected by HIV/AIDS." Institute of Medicine and National Research Council. 1999. Reducing the Odds: Preventing Perinatal Transmission of HIV in the United States. Washington, DC: The National Academies Press. doi: 10.17226/6307.
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Page 189
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Reducing the Odds: Preventing Perinatal Transmission of HIV in the United States Get This Book
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Thousands of HIV-positive women give birth every year. Further, because many pregnant women are not tested for HIV and therefore do not receive treatment, the number of children born with HIV is still unacceptably high. What can we do to eliminate this tragic and costly inheritance? In response to a congressional request, this book evaluates the extent to which state efforts have been effective in reducing the perinatal transmission of HIV. The committee recommends that testing HIV be a routine part of prenatal care, and that health care providers notify women that HIV testing is part of the usual array of prenatal tests and that they have an opportunity to refuse the HIV test. This approach could help both reduce the number of pediatric AIDS cases and improve treatment for mothers with AIDS.

Reducing the Odds will be of special interest to federal, state, and local health policymakers, prenatal care providers, maternal and child health specialists, public health practitioners, and advocates for HIV/AIDS patients. January

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