Appendix C Workshop I Summary

Miriam Davis

The Institute of Medicine (IOM) Committee on Perinatal Transmission of HIV held a workshop on February 11, 1998, to explore the rationale for, and response to, the 1995 Public Health Service (PHS) guidelines for universal counseling and voluntary testing of pregnant women for HIV (CDC, 1995). This summary covers workshop topics on the origin of the PHS guidelines; the positions of medical organizations; state policies and laws to implement the PHS guidelines; and the history and implementation of a mandatory newborn testing law in New York State. Workshop speakers and participants represented a broad spectrum of public health organizations at the federal, state, and local level. Health care providers and patients also participated.

The Origin Of The Public Health Service Guidelines

The development of the 1995 PHS guidelines was triggered by the results of the AIDS Clinical Trials Group protocol number 76 (ACTG 076) demonstrating a two-thirds reduction in perinatal transmission with zidovudine (ZDV) (Connor et al., 1994). Prior to 1995, PHS guidelines recommended counseling and testing only of high-risk women or of women from high-prevalence geographic areas. When initial guidelines on counseling and testing were issued in 1989, HIV-positive pregnant women were advised merely to consider avoiding pregnancy until more was known and to avoid breast-feeding. At that time, effective means of treatment and prevention had yet to be developed, according to Dr. Martha Rogers of the PHS, one of the principal authors of both the old and the new guidelines.



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--> Appendix C Workshop I Summary Miriam Davis The Institute of Medicine (IOM) Committee on Perinatal Transmission of HIV held a workshop on February 11, 1998, to explore the rationale for, and response to, the 1995 Public Health Service (PHS) guidelines for universal counseling and voluntary testing of pregnant women for HIV (CDC, 1995). This summary covers workshop topics on the origin of the PHS guidelines; the positions of medical organizations; state policies and laws to implement the PHS guidelines; and the history and implementation of a mandatory newborn testing law in New York State. Workshop speakers and participants represented a broad spectrum of public health organizations at the federal, state, and local level. Health care providers and patients also participated. The Origin Of The Public Health Service Guidelines The development of the 1995 PHS guidelines was triggered by the results of the AIDS Clinical Trials Group protocol number 76 (ACTG 076) demonstrating a two-thirds reduction in perinatal transmission with zidovudine (ZDV) (Connor et al., 1994). Prior to 1995, PHS guidelines recommended counseling and testing only of high-risk women or of women from high-prevalence geographic areas. When initial guidelines on counseling and testing were issued in 1989, HIV-positive pregnant women were advised merely to consider avoiding pregnancy until more was known and to avoid breast-feeding. At that time, effective means of treatment and prevention had yet to be developed, according to Dr. Martha Rogers of the PHS, one of the principal authors of both the old and the new guidelines.

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--> Over the next decade, the policy climate changed dramatically with medical and scientific advances in early treatment of HIV and prevention of perinatal transmission. In 1994, the PHS formally inaugurated policy development to revise its earlier guidelines. After seeking broad input, especially from HIV-positive women and their advocates, the PHS proposed new guidelines in the Federal Register. The guidelines were revised in accordance with comments received during a 45-day comment period and were issued in final form on July 7, 1995. The guidelines proposed universal counseling and voluntary testing, in lieu of a more targeted approach to either high-risk women or high-prevalence states. The rationale for universal counseling was that many HIV-infected pregnant women and newborns in low-risk groups and low-prevalence states still were not being tested and treated. The universal approach was seen by the PHS, according to Dr. Rogers, as a means of stimulating the development of a counseling, testing, and treatment infrastructure in low-prevalence states and regions. The PHS adoption of voluntary, as opposed to mandatory, testing was recommended for the following reasons: the policy had widespread support, particularly from patients for whom adherence to a demanding drug regimen is essential for prevention of transmission; mandatory testing was thought to be a deterrent to prenatal care; the risks of testing positive (e.g., discrimination and domestic violence) would outweigh the benefits in some cases; and experience had indicated that a high rate of acceptance was achievable since more than 90% of women accept testing when offered in several reported studies. Although the guidelines did not explicitly specify how patient consent to testing was to occur, Dr. Rogers pointed out that two types of patient consent are consistent with the intent of the PHS guidelines: the "right of refusal" (in which women are tested routinely unless they expressly refuse) and the "recommended with consent" (in which testing is recommended by the health care provider but performed only after explicit consent). Positions Of Medical Organizations Four professional organizations shared with the IOM committee their respective positions on HIV counseling and testing of pregnant women. The American Medical Association was the only one of the four to endorse mandatory testing of pregnant women and newborns. The other three organizations were in accord with the PHS in supporting universal counseling and voluntary testing of pregnant women. None of the organizations is actively monitoring the impact of its policies on member attitudes and practices. American Medical Association The American Medical Association (AMA) support mandatory testing of all pregnant women and newborns. This policy, according to Dr. John Henning of

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--> the AMA Department of STD and HIV, was adopted in June 1996 after contentious debate by the AMA House of Delegates, its policy setting body. The formal policy states, "The American Medical Association supports the position that there should be mandatory HIV testing of all pregnant women and newborns, with counseling and recommendations for appropriate treatment." Dr. Henning observed that the debate centered upon medical benefits to the infant versus protecting the rights of the patient (i.e., the pregnant woman). Because the voting was very close and not all of the 550 delegates were present for the vote, the delegates reconsidered the policy at the next meeting in December 1996. They began by considering a resolution to rescind mandatory testing, but, again after heated debate, the recision resolution was successfully reversed to reaffirm the need for mandatory testing. The AMA's position on mandatory testing is an outgrowth of its earlier policy that testing should be voluntary, unless the benefits of newborn testing are demonstrated sufficiently to warrant mandatory testing. Participants reacted to the AMA position by questioning the effectiveness of mandatory testing and the procedural impact of the AMA position. Workshop participants expressed surprise with mandatory testing in light of its possible deterrence to prenatal care; experience suggesting that women overwhelmingly agree to be tested voluntarily; and the possibility of harm to women from their partner if they proceed with testing. Dr. Henning said that the overriding impetus for the passage of the policy was the life of the newborn. In later discussion, the terms of the AMA's debate, which pit the life of the newborn against the rights of the mother, was criticized as a false dichotomy by Mr. Tim Westmoreland, a representative of the Elizabeth Glaser Pediatric AIDS Foundation. Instead, the debate over mandatory versus voluntary testing should be cast, in his view, as "what doesn't work" versus "what works." In response to other questions, Dr. Henning cited the AMA's position as a policy, not a law or mandate, for physician behavior; consequently, AMA members are not monitored for their compliance. The policy remains in force unless further action is taken by the House of Delegates. American College of Obstetricians and Gynecologists The American College of Obstetricians and Gynecologists (ACOG) endorses voluntary, as opposed to mandatory, HIV testing of pregnant women. Its position, passed in August 1995 and reaffirmed in 1996, advocates (1) routine counseling of all pregnant women as part of prenatal care; (2) voluntary testing with consent; and (3) documentation of refusal of testing in the patient's chart. Dr. Michael Greene, an ACOG representative, also noted that ACOG recommends that pretest counseling should include information about high-risk behaviors, vertical transmission, availability and effectiveness of therapy, and the potential social and psychological implications of testing positive. ACOG also recommends, on a

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--> voluntary basis, contacting sexual partners of HIV-positive patients, as well as sharing test information with health care professionals, including pediatricians. ACOG policies are developed by one of its standing committees, which then forwards its recommendations to the ACOG executive committee for a vote to establish policy. ACOG members provide an estimated 85% of all obstetrical care in the United States; the remainder is provided mostly by midwives and family practitioners. Discussion of the ACOG position focused on why some obstetricians appear to be failing to routinely counsel pregnant women. While ACOG does not monitor obstetrician practices in relation to its policies, Dr. Greene speculated about the possible reasons: obstetricians view counseling as time- and resource-consuming and as engendering unnecessary patient anxiety among many patients at low risk. They also may not have developed channels of referral to specialty care for those testing positive. One participant pointed out that screening for alpha-fetoprotein testing for birth defects provides a model, embraced by practicing obstetricians, of pre- and post-test counseling and linkages to genetic counseling and specialty care. American Academy of Pediatrics The American Academy of Pediatrics (AAP) favors universal counseling and voluntary testing of pregnant women. It also recommends testing of all newborns whose mothers either are HIV-positive or have unknown HIV status. The AAP's recommendations include the following key points: (1) Routine HIV education and routine testing, with consent, should be performed for all pregnant women. Consent can take the form of the right of refusal in order to facilitate rapid incorporation of HIV testing into routine practice. (2) All testing programs should evaluate the percentage of women who refuse testing. In cases of poor acceptance rates, programs should analyze why and make changes. (3) Newborn testing should be performed, with maternal consent, when the mother's HIV status is unknown. If the newborn tests positive, the mother should be notified and receive referral for her testing and treatment. (4) Results of maternal testing should be provided to the pediatric health care provider. (5) Comprehensive HIV-related medical services should be available to all infected mothers, infants, and other family members (AAP, 1995). These recommendations were developed by a standing committee, the Committee on Pediatric AIDS. The AAP committee's recommendations were forwarded to the executive committee of the AAP and were approved for publication. During the discussion, Dr. Gwendolyn Scott was asked why the AAP favored voluntary testing and what evidence it considered about the deterrent effects of mandatory testing for women seeking health care. She replied that personal experience, rather than hard data, was pivotal in persuading the AAP committee to embrace voluntary testing. The committee viewed voluntary testing

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--> as critical to ensuring a pregnant woman's compliance with the complex course of treatment needed for herself, her child, and possibly her older children. National Medical Association The National Medical Association (NMA) position on HIV testing of pregnant women, presented by Dr. Rani Lewis, asserts that (1) all health care professionals should offer counseling and voluntary HIV testing to all pregnant women on a confidential basis; (2) health care professionals should offer ZDV therapy to pregnant women and newborns without attempting to coerce treatment; (3) amniocentesis, fetal scalp electrode placement, or measures that lead to prolonged rupture of the fetal membranes should be avoided, as should breast-feeding; and (4) confidentiality, while extremely important, should not extend to withholding test information from other health care workers, such as pediatricians, for whom the information has medical significance. Dr. Lewis also observed that women who refuse testing are most likely to refuse treatment for themselves and their children. Some low-income and minority women view testing as threatening because, in their eyes, the diagnosis and the hospital experience in general are equated with death. She expressed concern that mandatory testing would leave women who refuse treatment for their children vulnerable to allegations of child abuse. She also noted that the NMA is very concerned about heightening discrimination against a population that already experiences a disproportionate share of discrimination. In view of the public health emphasis on testing, she stressed the importance of providing equal emphasis on funding for counseling and treatment. The NMA position was developed by its AIDS Task Force and adopted by its Executive Committee. The NMA is a 175-year-old organization for physicians of color and physicians who primarily care for patients of color. Most of the discussion centered on NMA's support for disclosure of test results to other health care professionals, despite the importance of confidentiality. Some participants claimed that disclosure would act as a deterrent to testing, to which Dr. Lewis responded that NMA accepted the fact that some women would be deterred, but felt that disclosure to the pediatrician was paramount. Response to the Positions of Medical Organizations Mr. Tim Westmoreland, the Washington representative of the Elizabeth Glaser Pediatric AIDS Foundation, served as the respondent to the panel of medical organizations. His foundation favors counseling and voluntary testing of all pregnant women. He pointed out that mandatory testing not only discourages women from testing, but also ushers in the possibility of mandatory treatment. He described mandatory testing of newborns as a bad opening to what necessarily will become a complicated relationship between the physician and the family. The test itself is the simplest part of the newborn's HIV diagnosis and treatment.

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--> If the mother declines the test and is overruled by a mandatory policy, the initiation of a good doctor/patient interaction over the long and complex regimen of drugs and monitoring will be difficult. Yet without such a treatment regimen, the test itself is pointless unless the state is prepared to take every child away from parental custody. In addition, he made several legal, financing, and policy observations. He stated that none of the positions of the medical organizations carries the force of law, except for the PHS guidelines, which are required of recipients of certain federal funds under Title II of the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act. He noted that the PHS guidelines, by virtue of establishing a standard of care, also may have legal consequences: physicians, even those in private practice and thus not technically covered by the guidelines, who fail to offer counseling and testing may be subject to malpractice under certain circumstances. He expressed his concern over the inadequacy of counseling, testing, and treatment practices and evaluation in Medicaid managed care plans, whose enrollment is burgeoning. He also expressed concern that discrimination against asymptomatic HIV-infected people may surge if the Supreme Court decides this term that the Americans with Disabilities Act does not extend protections to HIV-infected, yet asymptomatic, individuals until they progress to AIDS. Finally, he observed that support for mandatory testing provides a false sense of accomplishment for policy makers, because it may absolve them of responsibility to address the more complicated issues of financing research, treatment, and other forms of patient care. State Laws And Policies On HIV Testing Of Pregnant Women And Newborns Preliminary results were summarized from a survey of state laws and policies to implement the PHS guidelines or prevent perinatal transmission through other measures. The results, presented by Zita Lazzarini of the Harvard School of Public Health, were available from 43 states and 2 territories, with at least 7 others expected (Gostin et al., in press). The survey found that most states have moved quickly to implement the PHS guidelines. Eighty-seven percent had policies on counseling and testing of pregnant women, the vast majority of which require voluntary testing with informed consent. Several states have routine testing with the right of refusal. No states require mandatory testing of pregnant women. Several states indicated that approximately 90% to 95% of pregnant women are willing to be tested when testing is offered, but not all pregnant women (50% to 75%) were actually offered testing. Seventy-seven percent of states had policies on treatment, none mandatory, and 44% had policies on testing of newborns. New York is the only state that mandates newborn testing. In general, states responded mostly with policies rather than laws or regulations, and policies were mostly voluntary. In light of

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--> state actions, the authors concluded that policy makers should consider ongoing evaluation data from the states before changing existing state efforts. Response to State Survey One overarching sentiment expressed by participants was the need to monitor and evaluate states' implementation of their laws, regulations, and policies. State surveillance efforts were seen as crucial in examining the full impact of policies in reducing transmission rates. In addition, monitoring of individual service sites, especially those under Medicaid managed care, was deemed to be important. Given the dynamic financing environment, participants expressed concerns about testing without consent, undertreatment, or denial of treatment to patients in managed care. A Health Care Financing Administration (HCFA) representative observed that implementation of the PHS guidelines to reduce perinatal transmission requires coordination at many levels and between providers and payers. State laws that require providers to offer HIV counseling and testing to pregnant women may be more effective if there are laws or requirements to report on compliance. A state's Medicaid agency can require Medicaid-contracting managed care organizations (MCOs) to report on rates of HIV counseling and testing of pregnant women. Quality assurance measures related not only to counseling and testing, but to actual delivery of all components of treatment to reduce perinatal transmission (antepartum, intrapartum, postpartum), can be developed and tracked. National Committee for Quality Assurance (NCQA), Joint Commission for Accreditation of Healthcare Organizations (JCAHO), and other organizations may be able to help in developing measures. AIDS Education and Training Centers (AETCs) can train providers. These organizations are in a position to offer incentives to encourage counseling, testing, treatment, and record keeping. They also can sanction organizations that fail to do so. Some participants suggested the utility of a program-by-program scorecard of performance, indicating the percentage of pregnant women who are offered counseling and pursue testing, and the percentage who fill ZDV prescriptions (as recorded by the pharmacy) for themselves and their children. One participant commented that the provider infrastructure is in place, but the incentives are not. Some of the participants were disappointed by states' disproportionate emphasis on counseling and testing, rather than on treating. They saw treatment of the mother as essential for her health, as well as for her ability to care for, and administer treatment to, the newborn. An HIV-infected woman at the workshop criticized the inequity of state and federal policies that seemed to focus so much attention on the mother and seemingly insufficient attention on the father, who, in her case, had infected seven other women besides herself. She expressed her frustration that policies not only failed to protect these women, but also made them feel solely responsible for the plight of their infants. After the workshop, it was reported that all states have certified, as required

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--> by the Ryan White CARE Act Amendments of 1996, that they have appropriate partner notification activities in place for known HIV-infected individuals. History And Implementation Of New York's Newborn Testing Legislation New York has the highest pediatric AIDS caseload in the nation. The State of New York passed legislation in June 1996 mandating that all newborns be tested for HIV. The sponsor of the legislation, Assemblywoman Nettie Mayersohn, described its origins. From 1987 to the mid-1990s, Centers for Disease Control and Prevention (CDC) had established a surveillance system for monitoring the spread of HIV among heterosexual women and infants. This system included anonymous testing of all newborns in New York and other states. Even after CDC terminated the program, New York continued the surveillance system with its own funds until 1997, when the program was converted from monitoring/surveillance function to a programmative function involving mandatory newborn testing. Prior to the legislation, about 1,500 to 1,800 newborns had tested positive each year, out of approximately 185,000 births. Neither the mother nor the health professionals knew of the mother's infection. According to Ms. Mayersohn, the HIV-positive newborns were being discharged without referral for treatment that could have prolonged or saved their lives. Ms. Mayersohn saw the situation as ''criminal to deny the most innocent and the most helpless victims of the epidemic the care to which they are entitled." She successfully advocated for mandatory newborn testing, but she did not support mandatory testing of pregnant women. Dr. Guthrie Birkhead of the New York AIDS Institute described implementation of the New York legislation. All women in the state are required to be informed in the labor and delivery setting of the imminent HIV testing of the newborn. When the woman's HIV status is unknown, full-fledged pre-test counseling is required. Newborn test results are returned to the hospital by two to three weeks after birth. If the women are identified then, there is sufficient time to begin newborns on Pneumocystis carinii pneumonia (PCP) prophylaxis at four to six weeks of age, but insufficient time to advise women against breast-feeding. New York has established a referral network of AIDS centers where newborns and mothers can be treated. Of the more than 185,000 newborns tested over a nine-month period from February 1997 to October 1997, 60 HIV-positive infants were born to mothers who were unaware of their infection. Before the legislation was implemented in 1997, New York State instituted, by regulation, a consented testing program. This earlier program had two components: (1) voluntary notification to mothers of their newborn test results, and (2) mandatory prenatal counseling (with recommended HIV testing) in all state-regulated facilities (e.g., hospitals, clinics, and staff model HMOs, but not in private offices of physicians). While the subsequent mandatory newborn testing legislation superseded the first

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--> component of the program, it did not affect the mandatory prenatal counseling component for state-regulated facilities. Since the vast majority of HIV-positive women receive prenatal care in these facilities, many pregnant women still are required to receive counseling about perinatal transmission. Reaction to the New York Legislation Reaction to the New York legislation was offered by several designated respondents as well as by workshop participants. Most disagreed with the New York legislation and were skeptical about the effectiveness of mandatory newborn testing in reducing perinatal transmission. Dr. Amitai Etzioni, a professor at George Washington University, was the only respondent to offer qualified support for mandatory newborn testing (Etzioni, 1998). He framed the question of mandatory versus voluntary newborn testing as one that weights the potential harm to the mother, in terms of her privacy and autonomy, against the interests of the child. He preferred voluntary testing, performed in the prenatal setting and with consent, to mandatory newborn testing. But he did not feel that voluntary testing alone would completely eliminate the problem of perinatal transmission because a small proportion of women would not agree to be tested. He emphasized that privacy is not an absolute legal right and there are circumstances in which legislation is justified to violate privacy concerns. He viewed mandatory newborn testing as appropriate because the interests of the newborn should take priority; however, at the same time, he argued for policies to improve counseling when test results are released, to increase voluntary prenatal testing, to increase penalties against unauthorized disclosure of test results, and to increase penalties for discrimination against those who test positive. He likened New York's conversion from the anonymous to the mandatory program to a clinical trial that is halted because early signs of success make it unethical to continue the study in a blinded fashion. Dr. Alan Fleischman, with the New York Academy of Medicine, articulated his fervent opposition to the New York legislation. He disagreed with the premise that mandatory testing prevents HIV transmission for two fundamental reasons: (1) test results are not available in sufficient time for the mother to avoid HIV transmission through breast-feeding, and (2) mandatory testing discourages women from obtaining prenatal care from a health care system they see as punitive. Dr. Fleischman argued instead that mandatory testing may increase the likelihood of HIV transmission. He suggested that the specter of mandatory testing of newborns discourages obstetricians from counseling women in pregnancy, when prevention would be far more effective, because of the assurance that the newborn eventually will be tested. Likewise, pediatricians may also be discouraged from advising women against breast-feeding when the newborn's HIV status is unknown. Dr. Fleischman also presented results from his national surveys of neonatologists' attitudes towards HIV-infected babies. The surveys revealed neonatologists,

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--> the physicians who care for critically ill newborns, to be a somewhat unexpected source of discrimination against HIV-positive newborns. Surveys conducted in 1991 and 1996 probed neonatologists' attitudes about lifesaving procedures for HIV-infected infants through a series of hypothetical vignettes about how they would treat these infants' non-HIV-related conditions, such as surgery for intestinal blockage and correction of a heart defect. Results from the 1991 survey found neonatologists' recommendations for lifesaving procedures to vary with HIV status: neonatologists were less likely to recommend lifesaving procedures for infants who were HIV-infected or whose mothers were HIV-infected (with infants' status unknown) than for infants with no known HIV risk (Levin et al., 1995). Neonatologists in the survey also placed very low value on the quality of life for at-risk or HIV-infected infants, a valuation that was consistent with their willingness to withhold treatment recommendations. The results from the 1996 survey were virtually identical, despite widespread knowledge of progress with ZDV for HIV prevention and treatment. Results did not vary by location or region. Neonatologists held the same attitudes about withholding treatment for HIV-infected or at-risk infants in 1996 as they did in 1991. In the discussion, a number of participants expressed shock of the results and the implications of withholding treatment from HIV-exposed infants who later proved to be HIV-negative. One participant speculated that neonatologists' attitudes might have been colored by their own fear of performing invasive procedures on infants with HIV. The participant recommended revising the survey to include vignettes with non-invasive procedures to test whether fear shaped neonatologists' attitudes. Theresa McGovern of the HIV Law Project, an organization that provides advocacy and legal services for low-income women in New York City, stated that her organization favors voluntary testing during pregnancy. It joined other organizations in a lawsuit to block implementation of mandatory newborn testing. Their opposition was predicated upon the law's ineffectiveness, flawed implementation, and its premise that women would not be receptive to testing during pregnancy. Ms. McGovern referred to studies showing that women overwhelmingly accept testing. In her experience, women were not being offered the test. She stated, "Frankly, I was angry at the notion of [how] after years of provider failure to recognize and treat this disease in women and children, legislation would be passed as if the women were negligent." She echoed concerns about the receipt of test results being too late to prevent transmission through breast-feeding. She was distressed about the quality of pre-test counseling at the time of delivery, and about women not receiving appropriate care and treatment once they had been identified through the program as HIV-positive. One of the women whom Ms. McGovern represents, a 25-year-old woman who is also the mother of a six-month-old daughter, relayed her own experiences with the mandatory newborn testing program in New York. Having received no prenatal counseling about HIV, she learned that she and her daughter were HIV-positive two weeks after her daughter's birth and after she had begun breast-feeding.

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--> She said, "This diagnosis caused me a great deal of pain and anguish. I considered suicide, I considered killing my baby and myself because I was just so upset that I was HIV-positive, my baby was HIV-positive, what was I going to do with this baby, we both were going to die, who was going to raise her if she wasn't positive and I was the only one positive. … My daughter has had two positive PCR (polymerase chain reaction) tests since birth. I am destroyed that I breast-fed and that I continued to expose my daughter to HIV through breast milk. … I am deeply disturbed and angry about the lack of information that I was given during my pregnancy. I know that if I had been well informed I would have made choices that were best for myself and my child." Some participants questioned the cost-effectiveness of the New York legislation and asked how funds might better be spent on improving rates of voluntary testing among pregnant women. Dr. Birkhead noted that the incremental cost of newborn HIV testing is relatively low (about one dollar for each screening test) because HIV is only one of a panel of tests run on newborn blood samples collected for other purposes. The PCR follow-up test is more expensive ($50 to $100 each), but is only performed on about 1,000 out of 185,000 samples. These are the collective costs of identifying approximately 60 infants statewide whose mothers' HIV-positive status was unknown before delivery. Dr. Etzioni argued that programs to educate providers and pregnant women were likely to be more expensive than New York's newborn testing program, but the costs alone should not determine whether the approach is voluntary or mandatory. Much of the discussion surrounded the importance of voluntary testing of pregnant women, with greater attention to the role of the provider. A number of participants felt that providers' disinclination to counsel and offer testing presented the greatest barrier to pregnant women's getting tested. The question was raised as to how to create the conditions in which providers are encouraged to test and promote testing to every pregnant woman. Participants suggested these elements to be essential: trust between provider and patient; continuity of care and repeated opportunities to discuss testing during pregnancy in the event the patient refuses; financing of counseling; and provider education. One program administrator at the workshop attributed her program's success with voluntary testing to the education and endorsement of the provider, who "… has been the fulcrum. The provider has been the motivating force at getting women to test … it required a lot of education on our part … for an extended period of time to sensitize providers. Once we did that, we have providers who actually signed on, some sooner, others later, but we eventually had them all sign on." References American Academy of Pediatrics (AAP). Provisional Committee on Pediatric AIDS. Perinatal human immunodeficiency virus test. Pediatrics 95:303–307, 1995.

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--> Centers for Disease Control and Prevention (CDC). U.S. Public Health Service recommendations for human immunodeficiency virus counseling and voluntary testing for pregnant women. MMWR 44(RR-7), 1995. Connor EM, Sperling RS, Gelber R, Kiselev P, Scott G, O'Sullivan MJ, VanDyke R, Bey M, Shearer W, Jacobson RL, Jimenez E, O'Neill E, Bazin B, Delfraissy JF, Culnane M, Coombs R, Elkins M, Moye J, Stratton P, Balsley J. Reduction of material—infant transmission of human immunodeficiency virus type 1 with zidovudine treatment. Pediatric AIDS Clinical Trials Group Protocol 076 Study Group. N Engl J Med 331(18):173–1180, 1994. Etzioni A. HIV testing of infants: privacy and public health. When does preserving the right to privacy jeopardize the life of an infant? The policy debate heats up . Health Affairs 17:170–183, 1998. Levin BW, Krantz DH Jr., Driscoll JM, Fleischman AR. The treatment of non-HIV-related conditions in newborns at risk for HIV: A survey of neonatologists. Am J Publ Health 85(11):1507–1513, 1995. Workshop Agenda Washington, D.C. February 11, 1998 9:00–9:15 a.m. Welcome and introductions 9:15–11:00 Scientific and clinical perspectives on the efficacy of interventions for pregnant women and newborns and the accuracy of HIV testing   Counseling, testing, diagnosis of HIV infection in pregnant women   Ruth Tuomala   Determinants of vertical transmission and efficacy of preventive strategies, including retrovirals   Lynne Mofenson   Diagnosis, viral and immunopathogenesis, and therapy in the newborn   Catherine Wilfert 11:00–11:15 Break 11:15–1:00 p.m. Institutional positions regarding prenatal/newborn HIV testing and counseling   Public Health Service   Martha Rogers   American Medical Association   John Henning

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-->   American College of Obstetrics and Gynecology   Michael Greene   American Academy of Pediatrics   Gwendolyn Scott   National Medical Association   Rani Lewis   Reactions   Pediatric AIDS Foundation   Tim Westmoreland 1:00–2:00 Lunch 2:00–3:15 State policies/laws regarding prenatal/newborn HIV testing and counseling   Presentation of survey results   Zita Lazzarini   Reactions   AIDS Policy Center for Children, Youth and Families   David Harvey   Health Care Financing Administration   Theresa Rubin   National Alliance of State and Territorial AIDS Directors   Joseph Kelly 3:15–3:30 Break 3:30–5:00 History and implementation of New York's newborn testing law   New York State Assembly   Nettie Mayersohn   New York AIDS Institute   Guthrie Birkhead   New York Academy of Medicine   Alan Fleischman   HIV Law Project   Theresa McGovern   George Washington University   Amitai Etzioni 5:00 Adjourn