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HIV Screening of Pregnant Women and Newborns APPENDIX A THE CONFERENCE: PROGRAM AND SUMMARY Appendix A contains, first, the program of the conference, "Prenatal and Newborn Screening for HIV Infection: Opportunities for Prevention and Treatment?" The second part of the appendix is a summary of the conference presentations and discussions. It is not intended to present a consensus of opinion on the range of issues pertinent to the development of perinatal HIV screening policy. Rather, the views expressed here are those of the speakers and do not necessarily correspond to the conclusions and judgments reached by the IOM committee. Because the committee drew on the conference presentations during its deliberations and the preparation of its report, portions of this summary may overlap with material covered in the main body of the report. The speakers who presented the material on which the summary is based are listed below by individual conference section. HIV Infection and AIDS in Women and Children: Diagnosis and Treatment —Alfred Saah, Marta Gwinn, James Oleske, and Rhoda Sperling Principles and Pitfalls of Mass Population Screening—Norman Fost and George Cunningham Who Should be Screened?—Larry Wissow, Howard Minkoff, and Claire Brindis Consent and Counseling—Ruth laden, Ann Sunderland, John Arras, and George Annas HIV Screening Policy Implementation—Hermann Mendez, Christine Grant, and Richard Schwarz Economic Considerations in Screening for Perinatal HIV Infection—Jesse Green, Peter Arno, and Sara Rosenbaum Evaluating the Effectiveness of HIV Screening—Milton Weinstein, Renata Kiefer, and Donald Francis
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HIV Screening of Pregnant Women and Newborns The Advocates' Voices: Thoughts on Prenatal and Newborn HIV Screening —Milagros Davila, Dazon Dixon, and Sallie Perryman HIV Screening: Are Human Rights Threatened?—Larry Gostin, Katherine Franke, and Patricia King CONFERENCE PROGRAM Auditorium, National Academy of Sciences 2101 Constitution Avenue, N.W., Washington, D.C. May 14-15, 1990 Monday, May 14 8:25 Welcome and Opening Remarks - Marie McCormick, Associate Professor of Pediatrics, Joint Program in Neonatology, Harvard Medical School and Chair, IOM Committee on Prenatal and Newborn Screening for HIV Infection 8:30 HIV Infection and AIDS in Women and Children Moderator: Kathleen Nolan, Associate for Medicine, The Hastings Center HIV Infection and AIDS in Women: Magnitude of the Problem - Tedd Ellerbrock, Medical Epidemiologist, Pediatric and Family Studies Section, Epidemiology Branch, Division of HIV/AIDS, Centers for Disease Control HIV Infection in Infants and Children: Magnitude of the Problem - Marta Gwinn, Medical Epidemiologist, Population Studies Section, HIV Seroepidemiology Branch, Division of HIV/AIDS, Centers for Disease Control HIV Diagnostic Technology: How Good Are the Tests? - Alfred Saab, Associate Professor of Epidemiology, Johns Hopkins University School of Hygiene and Public Health
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HIV Screening of Pregnant Women and Newborns Medical Management of HIV Infection in Children: How Good Is the Treatment? - James Oleske, Professor of Pediatrics, New Jersey Medical School and Medical Director, Children's Hospital of New Jersey AIDS Program Medical Management of HIV Infection in Pregnancy - Rhoda Sperling, Director of Obstetrics and Gynecology-Infectious Diseases, Mount Sinai Medical Center 9:55 General Discussion 10:45 Principles and Pitfalls of Mass Population Screening - Norman Fost, Professor and Vice Chairman, Department of Pediatrics, University of Wisconsin 11:15 Discussant - George Cunningham, Chief, Genetic Disease Branch, California State Department of Health Services 11:30 General Discussion 11:50 Who Should be Tested? What Could be Achieved? Moderator: James Curran, Director, AIDS Program, Centers for Disease Control Screening Newborns - Larry Wissow, Assistant Professor of Pediatrics, Johns Hopkins University School of Medicine Screening Pregnant Women - Howard Minkoff, Professor and Director, Division of Obstetrics and Maternal-Fetal Medicine, State University of New York Health Science Center at Brooklyn Screening Women of Childbearing Age - Claire Brindis, Co-director, Center for Reproductive Health Policy Research, University of California at San Francisco 12:45 General Discussion
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HIV Screening of Pregnant Women and Newborns 2:15 Consent and Counseling Moderator: Peter Selwyn, Assistant Professor of Epidemiology and Social Medicine, Albert Einstein College of Medicine Means and Ends of Informed Consent - Ruth Faden, Director, Program in Law, Ethics, and Health, and Professor of Health Policy and Management, Johns Hopkins University School of Hygiene and Public Health One HIV Counseling Program for Women of Reproductive Age - Ann Sunderland, Social Worker, HIV Perinatal Transmission Study, State University of New York Health Science Center at Brooklyn Directive vs. Nondirective Counseling - John Arras, Philosopher in Residence, Department of Epidemiology and Social Medicine, Albert Einstein College of Medicine - George Annas, Professor of Health Law and Director, Law, Medicine, and Ethics Program, Boston University Schools of Medicine and Public Health 3:25 General Discussion 4:10 HIV Screening Program Implementation: Providing the Services Moderator: Reed Tuckson, Senior Vice President for Programs, March of Dimes Providing Follow-Up Care for Women and Children with HIV Disease - Hermann Mendez, Assistant Professor of Pediatrics, State University of New York Health Science Center at Brooklyn Implementing an HIV Screening Program: New Jersey's Experience - Christine Grant, Deputy Commissioner of Health, New Jersey State Department of Health
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HIV Screening of Pregnant Women and Newborns Professional Education and Standards of Care in Obstetrics - Richard Schwarz, Provost and Vice President for Clinical Affairs, State University of New York Health Science Center at Brooklyn 5:05 General Discussion Tuesday, May 15 8:20 Economic Considerations in Screening for Perinatal HIV Infection Moderator: Molly Coye, Head, Division of Public Health Practice, Department of Health Policy and Management, Johns Hopkins University School of Hygiene and Public Health Current Costs and Services Utilization Associated with Pediatric AIDS - Jesse Green, Director for Health Policy Research, New York University Medical Center Economic Implications of Early Intervention in Women and Children - Peter Arno, Assistant Professor of Epidemiology and Social Medicine, Albert Einstein College of Medicine Financing Strategies for Screening and Follow-Up Care - Sara Rosenbaum, Director of Programs and Policy, Children's Defense Fund 9:15 General Discussion 10:00 Evaluating the Effectiveness of HIV Screening Moderator: Sandy Schwartz, Executive Director, Leonard Davis Institute of Health Economics, University of Pennsylvania Program Evaluation: Process and Outcomes - Donald Francis, Centers for Disease Control Regional AIDS Consultant, California State Department of Health Services
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HIV Screening of Pregnant Women and Newborns Cost-Effectiveness Analysis of Prenatal and Newborn HIV Screening: Methodologic Issues and Data Needs - Milton Weinstein, Henry J. Kaiser Professor of Health Policy and Management, Harvard School of Public Health A Cost-Effectiveness Analysis of Prenatal HIV Screening - Renata Kiefer, Fellow, Center for AIDS Prevention Studies, University of California at San Francisco 10:55 General Discussion 11:30 The Advocates' Voices: Thoughts on Prenatal and Newborn HIV Screening Moderator: Janet Mitchell, Chief of Perinatology, Department of Obstetrics and Gynecology, Harlem Hospital Center - Milagros Davila, Coordinator, Prenatal Care Guidance Program, Department of Health Services, San Diego County - Dazon Dixon, Director, Sister Love Women's AIDS Project - Sallie Perryman, Special Assistant to the Director of Policy, New York AIDS Institute 12:30 General Discussion 2:00 HIV Screening: Are Human Rights Threatened? Moderator: Carol Levine, Executive Director, Citizens Commission on AIDS for New York City and Northern New Jersey Confidentiality, Disclosure, and Discrimination - Larry Gostin, Executive Director, American Society of Law and Medicine Discrimination in Access to Reproductive Health Services - Katherine Franke, Supervising Attorney, Fair Housing and Public Accommodations Division, New York City Commission on Human Rights
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HIV Screening of Pregnant Women and Newborns Judicial Intervention in Obstetrical Medicine - Patricia King, Professor of Law, Georgetown University Law Center 2:55 General Discussion 3:45 Developing Policy: Moving Toward Consensus Moderator: Neil A. Holtzman, Professor of Pediatrics, Johns Hopkins University School of Medicine - Edward Connor, Associate Director, Division of Allergy, Immunology, and Infectious Diseases, Children's Hospital of New Jersey - Sheldon Landesman, Associate Professor of Medicine and Director, AIDS Study Group, State University of New York Health Science Center at Brooklyn - Kristine Gebbie, Secretary, Department of Health, State of Washington - Ronald Bayer, Associate Professor, Department of Sociomedical Sciences, School of Public Health, Columbia University 5:30 Summary and Closing Remarks - Neil A. Holtzman, Professor of Pediatrics, Johns Hopkins University School of Medicine
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HIV Screening of Pregnant Women and Newborns CONFERENCE SUMMARY PRENATAL AND NEWBORN SCREENING FOR HIV INFECTION: OPPORTUNITIES FOR PREVENTION AND TREATMENT? HIV INFECTION AND AIDS IN WOMEN AND CHILDREN: DIAGNOSIS AND TREATMENT Assessment of proposals for HIV screening of pregnant women and newborns requires an examination of thc technology currently available to diagnose HIV infection in women and children. It also requires consideration of the treatment options and possible drug therapy that can be offered to those in whom infection is identified. Part of the challenge of developing rational perinatal HIV screening policy lies in the fact that HIV diagnostic technology and medical therapy are evolving. Therefore, present screening policies need to be flexible to respond to future technological developments. HIV Diagnostic Technology The serological tests most commonly used for the diagnosis of HIV infection are the Enzyme-linked Immunosorbent Assay (ELISA) combined with the Western Blot. The ELISA is reliable, relatively inexpensive, easy to perform—and therefore appropriate for screening purposes. The Western Blot is used to confirm the results of the ELISA. The ELISA, which detects antibodies to virus antigens (i.e., HIV viral proteins), is performed first on the patient's serum specimen. If the test is positive, it is repeated on the same blood sample. If positive again, the specimen is referred to as ''repeatedly reactive'' on the ELISA. This test should not be considered (or be reported as) truly positive, however, until the specimen is subjected to a more specific confirmatory test (usually the Western Blot), which is used to validate the ELISA result (i.e., to determine whether the ELISA-reactive specimen is a true or false-positive result). A "repeatedly reactive" ELISA test that is confirmed positive by a Western Blot is generally diagnostic of HIV infection and can be reported as positive. In some cases, the Western Blot results will be "indeterminate" or considered nondiagnostic of infection. This nonspecificity can be reduced
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HIV Screening of Pregnant Women and Newborns to a minimum by using more robust Western Blot interpretive criteria, such as those currently recommended by the Association of State and Territorial Public Health Lab Directors or the American Red Cross. In many cases, indeterminate Western Blot results can be resolved by additional antibody tests, particularly the new assays that employ recombinant or synthetic peptide HIV antigens. These assays could be inserted in the current ELISA/Western Blot algorithm either before or after the Western Blot. Although these HIV antibody tests are useful in screening pregnant women for HIV infection, they are not diagnostic of infection in newborns; that is, they are unable to distinguish between infected and uninfected infants. (All babies are born with passively acquired maternal antibodies, which may persist for up to 15 months; consequently, all infants born to HIV-infected mothers will test HIV-antibody positive at birth using these serological tests.) Several tests (e.g., assays for IgM and IgA HIV antibodies, which do not cross the placenta and therefore reflect infant status; in vitro antibody production; polymerase chain reaction) currently under development may prove useful in the diagnosis of infection in young infants. The polymerase chain reaction (PCR) in particular appears promising. To enhance the ability to detect the virus, PCP, amplifies specific viral nucleic acid sequences (e.g., HIV proviral DNA) in an individual's peripheral blood mononuclear cells, a capability of particular interest in neonates, given the difficulty of distinguishing infants who are infected rather than merely seropositive. Because of PCR's high level of technical sensitivity, however, inadvertent laboratory contamination or presence of maternal cells can lead to false-positive results. Moreover, the technique's sensitivity and specificity in diagnosing infection in young infants have yet to be determined. For the moment, it appears that it is not sufficiently sensitive to diagnose infection in infants who do not develop AIDS within the first year of life. PCR requires further evaluation before wide-scale use is considered and should, at this point, be regarded as a research rather than a diagnostic tool. Medical Management and Treatment of HIV Infection in Children The manifestations and course of HIV disease in children are distinct from those in adults. For example, the tempo of disease progression from asymptomatic infection to AIDS is generally more rapid: children with perinatally acquired infection most often develop signs and symptoms of disease within the first year of life, although the true median age at diagnosis is probably closer to two years. (Overall, about half of all
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HIV Screening of Pregnant Women and Newborns pediatric AIDS cases reported to date were diagnosed before their first birthday; some children, however, did not develop HIV-related conditions until they were seven, eight, nine, or even ten years of age.) Infants diagnosed within the first year of life tend to have the poorest prognosis: fewer than half survive for 12 months. In contrast, about two-thirds of children diagnosed at one year of age or older were still alive 12 months after diagnosis. HIV infection in children is a multisystem disease, characterized by progressive immunologic deterioration and thus susceptibility to opportunistic infections and other HIV-related illnesses. The most common opportunistic infection among perinatally infected children is Peneumocystis carinii pneumonia (PCP), which usually appears in the first year of life and is associated with a grim prognosis. Other common HIV-associated conditions or infections include failure to thrive, recurrent bacterial infections, persistent oral thrush, and lymphoid interstitial pneumonia. In addition, the majority of infected children experience some degree of neurodevelopmental delay, and some will ultimately develop progressive encephalopathy. Because the manifestations of HIV infection in children are many and varied, the medical management and treatment of these children are fairly complicated. Such care can include multiple therapeutic interventions, nutritional and psychosocial support, and even pain management. Early identification of infected children allows anticipatory management and the consequent vigorous treatment of bacterial infections and other opportunistic diseases. In addition, it permits modification of routine pediatric vaccination practices—for example, inactivated rather than oral poliovirus vaccine can be administered. Early identification of children who are at risk for infection but have not yet been diagnosed as infected allows medical caregivers to carefully monitor the child's condition for evidence of immunologic impairment and signs and symptoms of HIV disease. Despite the apparent rationality of these approaches, there is little evidence to confirm that such aggressive care and management makes a difference over the course of the disease. As a result, some pediatric experts question whether these treatment and care measures actually prolong life. Others speculate that quality of life may be improved, but this, too, is unsubstantiated by anything except anecdotal evidence. Notwithstanding this uncertainty regarding the benefits of intervention, the tendency of most caregivers has been to assume that early recognition of infection in children can lead to more effective medical management and treatment. As noted earlier, perinatally infected children often present with symptomatic disease within the first year of life, and they frequently experience an accelerated decline. This rapid progression creates a narrow
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HIV Screening of Pregnant Women and Newborns "window" of opportunity for early therapeutic intervention—for example, antiretroviral therapy and prophylaxis against opportunistic infection. Yet the effectiveness of primary PCP prophylaxis in HIV-infected infants is uncertain. Clinical experience with HIV-infected children seems to suggest that it may be beneficial in preventing pneumonia and may even help prevent other bacterial infections. Nevertheless, most pediatric experts agree that PCP prophylactic therapy should not be administered to all seropositive infants. This regimen should still be reserved for children with known HIV infection. Questions also remain regarding early intervention with antiretroviral therapy such as zidovudine. Evidence suggests that zidovudine therapy in children with symptomatic HIV infection or AIDS leads to improvements in neurological function and weight and growth parameters, and may even prolong life. Some clinicians argue that early intervention with antiretroviral therapy may help reverse or prevent the neurodevelopmental deterioration commonly seen among HIV-infected children. It is as yet unclear, however, whether such therapy will ultimately be of benefit to asymptomatic HIV-infected children. Medical Management of HIV-Infected Pregnant Women Appropriate prenatal management of HIV-infected pregnant women includes assessing maternal immunologic function, treating HIV-related complications and infections, and safeguarding and monitoring the intrauterine environment. Some guidance in the management of HIV-infected pregnant women can be gleaned from experience in the management of HIV-infected nonpregnant adults. For example, among HIV-infected nonpregnant adults, immunologic function is now generally monitored through serial CD4+ cell counts to predict disease progression and indicate when to initiate antiretroviral therapy and prophylaxis against opportunistic infection. There is good evidence of effectiveness of such regimens among nonpregnant infected adults: trials of zidovudine in nonpregnant adults (with CD4+ cell counts of less than 200 and counts between 200 and 500) have demonstrated its effectiveness in delaying the progression of disease, and PCP prophylaxis has been successful in delaying or preventing the onset of Pneumocystis pneumonia (one of the most common HIV-related opportunistic infections) in nonpregnant adults with CD4+ cell counts below 200. Many obstetrical experts concur that zidovudine therapy should be administered to those pregnant women who are at highest risk of disease progression (i.e., those with CD4+ cell counts of less than 200). Although the safety of zidovudine therapy during pregnancy is still relatively
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HIV Screening of Pregnant Women and Newborns TABLE A-3 Cost per Averted Birth of an HIV-Infected Infant Using Selective or Universal Screening at Various Prevalence Levels and with Two Counseling Scenarios Universal Screening Prevalence Selective Screening with Counseling for All Counseling for All Counseling for HIV-Infected Women Only 0.02 $ 3,300 $ 7,000 $ 3,300 0.002 26,000 62,700 24,700 0.0002 253,200 619,800 239,000 infected infant. If the lifetime cost of HIV-related care for an infected infant were $50,000, then both selective screening and universal screening with counseling for infected women only would result in a net gain at an overall HIV prevalence of 2 infected women per 1,000 women. If counseling costs were to increase beyond the conservative estimates used in this analysis, however, then all screening strategies would be more costly than under the current assumptions. Other outcomes of prenatal HIV screening that should be considered when selecting a particular screening strategy are the possibility of reduced maternal and infant morbidity as a result of early diagnosis and treatment, facilitation of health resources planning, potential reduction of vertical HIV transmission, and possible reduction of horizontal HIV transmission to partners (which will depend to some extent on the capacity of the program to identify and counsel infected women). Additional benefits can be pursued by counseling seronegative women who continue to be at risk for infection, particularly women in selective screening programs. Policymakers must decide the most efficient use of resources. In areas of high prevalence, universal screening with posttest counseling for all women screened may be the most appropriate option. Program Design and Evaluation The design of a screening program and its evaluation require that the program's overall goals be clearly defined at the outset. (For example, the objectives of a prenatal HIV screening program might be to prolong, through early medical intervention, the productive lives of infected individuals identified by screening, to prevent further (vertical or horizontal)
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HIV Screening of Pregnant Women and Newborns transmission of HIV, and to minimize the social costs of HIV disease.) Decisions must also be made regarding the target population to be screened and the site(s) at which such screening is to be conducted. If a majority of infected pregnant women are to be identified and offered treatment, it may be most appropriate to offer voluntary HIV testing to all pregnant women prenatally or at the time of delivery, in a given geographic area. Reaching women at increased risk for infection means that HIV testing services need to be available in settings where these women frequently receive care—prenatal, family planning, and sexually transmitted disease clinics, as well as substance abuse treatment centers. As mentioned earlier, HIV screening confined to the prenatal care setting may miss a substantial proportion of at-risk pregnant women because those women who receive little or no prenatal care are often at greatest risk of infection. Consideration must also be given to the development of a follow-up system of care for infected individuals who are identified through screening. Indeed, some health officials have questioned the wisdom of instituting screening in the absence of an adequate system of follow-up services for infected women and their children. Others have suggested that only when infected individuals are identified through screening will the necessary services be developed. Once an individual has been identified as infected, there should be a two-stage system of early intervention. The first stage would be oriented toward prevention and would include behavioral intervention, adequate psychosocial support services to minimize the social disorder that accompanies the lives of many HIV-infected women, and couple (or partner) counseling. Such intervention may facilitate behavioral change to limit further HIV transmission. (Prevention efforts can also be targeted at the community level in areas where HIV infection is highly concentrated.) The second stage would focus on early medical intervention—for example, continuing medical surveillance, drug therapies, acute hospitalization (if necessary), community-based care, and substance abuse treatment (if needed), as well as clinical, psychosocial, and practical support services. Any HIV screening effort relies heavily on laboratory services, and as a result laboratory quality assurance and performance evaluation are critical components of a screening program. Considerable variation across laboratories in the costs of test performance is an important factor in selecting laboratories to process specimens collected through the screening program. Other crucial elements of screening programs are a mechanism for contacting and notifying individuals of their test results and posttest counseling services (particularly for HIV-infected individuals).
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HIV Screening of Pregnant Women and Newborns In developing and performing an evaluation of a prenatal HIV screening program, several aspects of the program may be assessed. For example, one can evaluate whether the program has been implemented as intended and whether program components are in place. To assess the acceptance and use of screening services among pregnant women, one might compare the estimated number of infected women expected to be reached through screening with the number of seropositive women actually identified. Examination of the proportion of these women who are receiving appropriate medical monitoring, treatment, and other support services can also provide some sense of the adequacy and accessibility of the system of follow-up care. Evaluation of prenatal HIV screening will undoubtedly present a challenge, in part because the HIV epidemic continues to evolve and new information continues to accumulate regarding the effectiveness of therapy. Ongoing evaluation will therefore be necessary to assess program effectiveness and to adjust program design in response to evaluation findings and technological developments. THE ADVOCATES' VOICES: THOUGHTS ON PRENATAL AND NEWBORN HIV SCREENING The epidemic of HIV infection and AIDS among women (and children) has disproportionately affected minority populations, particularly those in large urban areas of the United States. In developing prenatal HIV screening policy with the goal of early identification and treatment of infected women, this fact—and the implications it brings—must be taken into consideration. Screening policy cannot be developed in a vacuum, that is, without reference to the populations it is meant to serve. In the case of HIV, the social circumstances, culture, and character of these populations will shape their members' acceptance of and degree of participation in the screening process. Screening policy development must consider variations among ethnic communities as well as among individuals with respect to educational level, prior experience with the health care system, attitudes, values, and fears, and the extent to which there are social and familial support systems. For example, women in different areas of the country may have received varying levels of information about HIV infection and testing, depending on whether the area has a high or low prevalence of infection. A woman's level of awareness about HIV may affect what she understands during the informed consent procedure and how much information must be provided by the counselor to secure an informed consent. Eliciting informed consent may be particularly problematic with women who have limited education or who are functionally illiterate and to whom the meaning and
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HIV Screening of Pregnant Women and Newborns intent of the forms and, indeed, the whole process may be unclear and confusing. Diversity with respect to previous experience with the health care system may affect the way women respond to offers of HIV testing. Pregnant women who have had experience with preventive or prenatal care are familiar with medical testing. They may not necessarily understand the specific details of such testing, but they believe the tests are being performed for the benefit of their unborn child. Many minority women, however, have had little contact with the health care system. For example, about 20 percent of Latinos nationally lack a regular source of health care. In 1988, at least 12 percent of all Latino mothers received late or no prenatal care, compared with 4 percent of white mothers.21 At the same time, the birth rate was 24.1 births per 1,000 persons for Latinos and 15.7 per 1,000 for non-Latinos.22 Latinos as a population appear to be relatively unfamiliar with the health care system, for reasons that go beyond the lack of available services or accessibility of care. Some individuals, for example, recent immigrants, are concerned about their legal status and the effect that use of the system may have on them and their families (e.g., the potential for deportation). Others may be unaware of existing resources. Even when it is known that services are available, people may be reluctant to enter a system that is unfamiliar, intimidating, and characterized by long waits for care and overcrowded, understaffed facilities. This relative lack of use of health care resources is an important factor that must be considered when formulating policy that will ultimately be implemented in physicians' offices and prenatal care facilities. Policymakers also need to recognize the diversity of values, cultures, and social circumstances among individuals within a minority group as well as among minority groups. For example, there is a wide range of opinion among minority women about whether screening should be mandatory. There are contextual differences among women as well. Some pregnant women face drug abuse problems, some are coping with the effects of poverty, and some have empowerment concerns. Some women, in fact, confront all of these issues. The implications of a positive HIV test result may differ depending on the particular individual involved. A woman's reality is not limited to the medical facts of her situation, which may or may not be fully understood. It also includes psychological and social components often associated with unemployment, undermined self-esteem, perceptions of locus of control, poverty, and drug addiction. HIV 21 In 1988, 11 percent of black mothers received late or no prenatal care. 22 National Center for Health Statistics, "Advance Report of Final Natality Statistics, 1988," Monthly Vital Statistics Report 39(1990):1-48.
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HIV Screening of Pregnant Women and Newborns infection often compounds these existing problems. Moreover, adequate support mechanisms may simply not be available for many women. Will the institution of a screening policy lead to immediate and long-term emotional and practical support? Will it assist in the implementation of support systems that will facilitate behavioral change? (These range from additional treatment slots for intravenous drug users to child care.) Additionally, the counseling that accompanies HIV testing should be sensitive to differences among the women participating in the screening program and the varying cultural contexts of their lives, especially the way that context may shape their perceptions of risk and their ultimate decisions or behavior. For example, women who live in a high-risk environment may not view a roughly 30 percent perinatal HIV transmission rate as high. Those who begin life with very little must take risks to survive; to them, a 70 percent chance of having a healthy baby may seem to be a reasonable risk. In many ethnic communities, particularly the Latino community, the family is extremely important, and decisions are often discussed with family members. For example, before signing a consent form, a woman might want an opportunity to confer with her family and other members of her support system about HIV testing and its ramifications. Any attempt to deal with the management of HIV infection and its prevention should integrate the family in that process and use it as an emotional resource. Male partners of infected women should be involved in any behavioral change efforts. Indeed, because economic and social dependence on men is largely responsible for the lack of empowerment many minority women experience, the successful implementation of behavioral changes depends on the involvement of men. Reaching minority pregnant women to encourage them to enter care (providing services are actually available) is another consideration in the development of screening policy. Prenatal HIV screening programs must find a way to identify women early in their pregnancy, which is not an easy task. In addition to the difficulties presented by early identification, some of these women will not enroll in prenatal care, some will discontinue care, and others, such as the substance abuser who is afraid that her child will be taken away from her, will only receive care in the emergency or delivery room. An HIV screening program must also facilitate and support the reproductive choices a woman makes after being informed she is HIV-antibody positive. Contraception, sterilization, and abortion may have different meanings to different women—and different meanings to health care providers. Many women are afraid that screening will be used to subtly convince or pressure them to be sterilized after delivery. Mandatory
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HIV Screening of Pregnant Women and Newborns or recommended HIV testing may, in fact, deter women from much needed prenatal services. Other factors affecting a woman's reproductive decisions are the relevance that this pregnancy or this child may have for that woman, her religions and spiritual beliefs, and her sense of empowerment. Issues of empowerment and self-esteem have a substantial impact on why some women choose to participate in risky behavior and on their inability to extricate themselves from their predicaments. Some have questioned whether positive attitudes about wellness and disease prevention can exist among individuals (e.g., poor women of color) whose energies must be devoted to confronting the exigencies of a marginalized existence. An important concern in prenatal HIV screening is whether health practitioners are aware of their own feelings and attitudes about minority patients. Some practitioners may have formed judgments and developed biases about pregnancy and HIV infection in the ethnic patient. Prejudice among practitioners, however, is only part of a much broader problem of racism. Unlike prejudice, racism is systematic, and to the extent that it is part of U.S. society, it will also be part of the nation's medical centers. Finally, although funding for AIDS is a politically sensitive issue, for the black and Hispanic community to embrace HIV disease as a political issue is problematic for two reasons. One is the potential for discrimination and stigmatization of the communities involved. The other is that when funding requests are issue specific, a certain amount of money is allocated for that particular issue but other, interconnected problems are ignored. Advocates for women of color fully support HIV screening but not at the expense of other programs and only if it is part of a long-term process to provide pregnant women with services and support that will help improve their lives and the lives of their children. HIV SCREENING: ARE HUMAN RIGHTS THREATENED? Concerns about discrimination in the context of the AIDS epidemic have centered around employment, insurance, and housing, as well as social ostracism by friends and family. The potential for discrimination within the health care system itself is another area of particular concern, especially for pregnant HIV-infected women.23 Such discrimination can 23 L. O. Gostin, "The AIDS Litigation Project: A National Review of Court and Human Rights Commission Decisions, Part 1, The Social Impact of AIDS," Journal of the American Medical Association 263(1990):1961-1970, and L. O. Gostin, "The AIDS Litigation Project: A National Review of Court and Human Rights Commission Decisions, Part 2, Discrimination," Journal of the American Medical Association 263(1990):2086-2093.
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HIV Screening of Pregnant Women and Newborns be relatively direct—a physician's reluctance to provide treatment—or subtle—a decision made by a health care provider to refer all cases of HIV infection to other practitioners because of insufficient expertise or resources. Infected persons may also experience problems gaining access to nursing care, foster care, and adoption services. To avoid such discrimination, some pregnant women refuse to be tested, a decision that raises the questions of a woman's rights versus her obligations toward others who have an "interest" in her pregnancy, that is, her sexual partner, her health care practitioner, and her baby. In terms of her own interests, the most compelling rationale for testing is that, if a woman is found to be infected, she may have access to medical care, such as monitoring of CD4+ cell counts, prophylaxis for PCP, and antiretroviral medication. Neither Medicaid coverage nor any other kind of support, however, can guarantee that she will actually obtain such care because services may simply not be available or they may be inaccessible w pregnant women. Moreover, for many women, the negative effects of being identified as HIV infected may appear to outweigh any benefits that might accrue to the early identification of future illness. (Such effects may include the immediate costs of violence, which can ensue when a woman's sexual partner discovers her infection or when she tries to make changes in their sexual practices; the loss of a husband or boyfriend; and ostracism by family and friends.) Once a woman is known to be infected, the question of disclosing that knowledge to various parties, in particular, her sexual partner or partners, is raised. Some women may prefer not to disclose such information (for the reasons noted above, among others), but health care professionals have certain legal and ethical responsibilities to warn third parties at risk. Doing so without the woman's permission, however, may in fact generate other public health risks. For example, a major public health goal is to ensure that pregnant women seek prenatal care. Actual or perceived breaches of confidentiality by a woman's obstetrician may cause her to lose trust in that caregiver (and sometimes in all such caregivers), with the result that she will not continue to seek care. The case has been made that health care providers have a right to know the infection status of their patients to protect themselves from transmission of the virus. Yet the bulk of this type of infection risk can be virtually eliminated by strict adherence to universal infection control procedures. Because the risk of transmission in the health care setting is relatively low, many believe that there is little justification for compelling a woman to disclose her infection status to the health care practitioner treating her. With regard to the interests of the baby, the lack of clear medical benefit to be gained from neonatal testing—and the difficulty in distinguish-
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HIV Screening of Pregnant Women and Newborns ing those babies who are actually infected—argue against coercion of either testing (of mother or infant) or a woman's reproductive choices. Many pregnant women believe that their baby's best interests are served by being born and nurtured, despite their own potential disability. In such cases, fundamental constitutional rights to privacy and reproductive choice make it difficult, both ethically and legally, to authorize the state to unduly influence a pregnant woman's decision either to continue or terminate the pregnancy. Moreover, the U.S. tradition of parental authority gives mothers the right to make decisions about their babies' health care—unless such a decision would harm the child. Thus, if a reliable HIV test that could detect infection in neonates were developed, and if treatment were shown to be effective, available, and of benefit to the child, the state would have the right to mandate HIV testing of children, regardless of the mother's choice. Absent these conditions, the mother's decisions regarding her baby's welfare must be respected. A related issue involves the discrimination some HIV-infected women experience in attempting to gain access to reproductive health care. One attempt to document the degree to which HIV-infected women were discriminated against in gaining access to abortions revealed that two-thirds of the abortion facilities contacted in the study canceled appointments made by allegedly HIV-infected women once their infection status was disclosed. Some of the facilities attempted a plausible response, such as their inability to handle that type of procedure. Others changed the vacation schedules of the physicians or quoted inflated prices for abortion services to discourage those seeking care. Still others openly reported that their staff refused to care for HIV-infected patients. These types of action by caregiving facilities may be actionable under law as discriminatory, and civil sanctions could be applied in most states under handicap legislation. There are problems, however, in invoking the legal system and filing lawsuits against such offenders. A victory in a discrimination case of this kind may force certain medical professionals to treat people they do not want to treat, but it does not ensure good care. Only a minority of the problems faced by HIV-infected women seeking reproductive health care can be addressed by antidiscrimination laws because such laws cannot check the social forces of prejudice that leave infected persons vulnerable to discrimination. These laws are based on neutral principles of fairness that presuppose an homogenization of experience and culture rather than acknowledge the diversity that actually exists. Perhaps a more productive approach to antidiscrimination would be to work with city and state health departments to inform reproductive health care providers that these practices run contrary to current medical knowledge and violate federal and local civil rights laws. Peer education, not litigation, is most likely to
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HIV Screening of Pregnant Women and Newborns be effective in improving the quality of reproductive health care provided to HIV-infected women. Identification of a woman as HIV positive puts her at risk not only of discrimination but of coercion by the judicial system. The proclivity to view women as either "vectors or vessels" is reflected in the increasing tendency to arrest women who use drugs during pregnancy and to seek so-called judicial interventions into obstetrical medicine (e.g., forced cesarean section, sterilization). An analysis of precedents in this area sheds some light on the degree to which these practices would be constitutionally permissible and judicially sanctioned for HIV-infected women. In Buck v. Bell (1927), the Supreme Court upheld the right of the state to require that some citizens be forcibly sterilized. One justification for requiring this "sacrifice" was the state's concern about the costs of caring for institutionalized children. Beginning in the 1950s, attention was directed toward women on welfare. Legislation was introduced to require sterilization in situations where the state did not want to pay for the rearing of children born to parents who could not take care of them. Although this legislation was not passed, many women on welfare were in fact sterilized without their consent. Therefore, at several points in U.S. history, public opinion has coalesced around solutions to prevent society from caring for children born to parents who are deemed unworthy. These parents were all too often the economically disadvantaged and, in many instances, racial and ethnic minority women. Counteracting such discriminatory laws are laws that protect the right to privacy. Griswold v. Connecticut, although currently being challenged, suggests a legal basis for a fundamental right to make individual reproductive decisions.24 These cases, however, deal with the right not to have a child, that is, to use contraception or abortion. Whether the Court would deem sterilization unconstitutional because of a right to procreate is more controversial.25 Moreover, the "image" of sterilization is changing, at least among middle-class couples, for whom it is becoming a preferred method of birth control, and this change may soften the abhorrence of coerced sterilization that has developed over the past few decades. If coerced sterilization remains constitutional, it will be very difficult to mount a constitutional argument against mandating long-term, possibly injectable contraceptives that will have the same result. 24 Griswold v. Connecticut held that a couple has a constitutional right to access to contraceptives, which stems from their right to privacy in making reproductive decisions. 25 Many believe that there is stronger protection of the right to have children than there is of the right not to have children. Thus, forced sterilization would be unconstitutional even if abortion were no longer considered to be constitutionally protected.
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HIV Screening of Pregnant Women and Newborns The recent precedent of coerced cesarean sections raises the question of whether maternal treatment (e.g., therapy to prevent perinatal transmission) could be forced on an infected woman to benefit her infant. Recent legal trends lean toward ensuring benefit to the fetus and may require some women to act in a manner that they perceive as disadvantageous to them. Ways must be found to limit coercion and ensure protection of the rights of HIV-infected women as well as those of their infants.
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Representative terms from entire chapter: