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Suggested Citation:"D Workshop II Summary." 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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Appendix D Workshop II Summary

Amy Fine

On April 1, 1998, the Institute of Medicine (IOM) Committee on Perinatal Transmission of HIV held a public workshop focusing on the impact of the 1995 Public Health Service (PHS) Guidelines for universal counseling and voluntary testing of pregnant women for HIV. The workshop agenda included five panels, covering the following topics: results from the Centers for Disease Control and Prevention (CDC) surveillance and enhanced surveillance systems; results from the Health Resources and Services Administration (HRSA) data systems; provider practices; results from provider and patient surveys and state data systems; and patient perspectives. Findings and discussion are summarized below.

Results From CDC Surveillance And Enhanced Surveillance Systems

A panel from CDC—including Pascale Wortley, Martha Rogers, Mary Lou Lindegren, and R.J. Simonds—provided an overview of CDC surveillance findings, including presentation and analysis of basic trend data and an analysis of the chain of events needed to achieve prevention success. Most of the data from the presentation are from six CDC studies: (1) The Survey of Childbearing Women (SCBW) is a 1989–1994 population-based survey conducted in 45 states and the District of Columbia. It is based on anonymous newborn heel-stick blood sample. (2) National Pediatrics AIDS Surveillance is conducted in all states and territories and Pediatric HIV Surveillance is conducted in 31 states. Both are population-based surveillance systems. Pediatric HIV surveillance includes information on perinatally exposed infants and monitors their subsequent HIV infection and

Suggested Citation:"D Workshop II Summary." 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.
×

AIDS status. (3) The State Enhanced Pediatric HIV Surveillance Program (STEP) is an enhanced pediatric surveillance system that is conducted in four states (New Jersey, South Carolina, Michigan, Louisiana) with adult and pediatric HIV reporting. This system also includes data on HIV-exposed and HIV-infected children. (4) The Pregnancy Risk Assessment Monitoring System (PRAMS) is a population-based surveillance system based on a sample of women with a recent live birth. Information is gathered through a mailed questionnaire with a telephone follow-up. In 1996, 11 states participated. (5) The Perinatal Guidelines Evaluation Project (PGEP) is an in-depth, ongoing four-site project (Connecticut; North Carolina; Brooklyn, New York; and Miami, Florida) using medical chart reviews and interview data of pregnant and postpartum women. The prenatal study population is restricted to women whose health care providers had discussed HIV with them within the previous 60 days. The postpartum study population was a cross section of women delivering in the study's site hospital. (6) Pediatric Spectrum of Disease (PSD) is an eight-site medical record review of HIV-exposed and infected children in care at participating sites since 1989.

HIV/AIDS Trends in Women

The HIV/AIDS epidemic in women is concentrated in the Northeast and in the South, with the highest rates found in New York, New Jersey, Florida, Maryland, Connecticut, and Puerto Rico. States with the greatest number of cases include New York, New Jersey, Florida, California, and Texas. While the highest rates were first observed in the Northeast, during the past five years the greatest increase in rates has been in the South. African-American and Hispanic women are disproportionately affected. Over time, the number of cases among women attributable to injection drug use has declined, while the proportion attributable to heterosexual contacts has increased.

It is estimated that from 6,000 to 7,000 HIV-infected women delivered infants each year from 1989 to 1995. Trend data from the SCBW showed a relatively steady national rate of HIV seroprevalence for childbearing women between 1989 and 1994. There are, however, important regional variations. In the Northeast, where the epidemic started and peaked earliest, there was a 22% decline in the rate of HIV-infected childbearing women giving birth between 1989 and 1994. In the South, where the epidemic started later, there was a 25% increase between 1989 and 1991, which then leveled off. The West and Midwest have had stable and relatively low rates.

HIV/AIDS Trends in Infants and Children

Perinatal transmission accounts for virtually all new HIV infections in children. It is estimated that more than 15,000 HIV-infected children have been born to HIV-infected mothers in the United States. By the end of 1997, more than

Suggested Citation:"D Workshop II Summary." 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.
×

7,000 perinatally acquired AIDS cases were recorded nationwide, the vast majority of which were among African-American and Hispanic children. The distribution of perinatally acquired AIDS is highly concentrated, with three-quarters of cases diagnosed in eight states/jurisdictions: New York, Florida, New Jersey, California, Puerto Rico, Texas, Maryland, and Pennsylvania. Many states have very low prevalence: 23 states account for a total of less than 2% of reported perinatal AIDS cases.

The number of pediatric, perinatally acquired AIDS cases rose rapidly in the late 1980s and early 1990s, peaked around 1992, and subsequently declined 43% by 1996. According to the CDC, this dramatic decline, coupled with other recent trend data, point to the conclusion that preventive efforts in this country have been successful in reducing perinatal AIDS transmission.

Trends by age at diagnosis show that the largest declines are among children diagnosed as infants, with substantial declines also among children diagnosed at ages one to five years. However, for older children, similar levels of decline have not been observed. These findings are consistent with the expectation that efforts to prevent perinatal transmission would be reflected earliest in infants because older children were born before ACTG 076 (AIDS Clinical Trials Group protocol number 76).

PCP (Pneumocystis carinii pneumonia) is the most common AIDS-defining condition in children, occurring most prominently in infancy. Since recommendations regarding PCP prophylaxis were evolving during the same period that dramatic declines occurred in perinatally acquired pediatric AIDS cases, it is useful to look at whether declines in pediatric AIDS reflect more than declines in PCP. CDC surveillance findings show substantial declines in AIDS among infants—not only in those with PCP as the presenting diagnosis, but also in those with other opportunistic infections. This indicates that the decline in pediatric AIDS cases is not being driven solely by changes in PCP, but rather appears to reflect declining perinatal transmission rates.

In order to estimate the impact of the ACTG 076 results, Byers and colleagues (1998) compared two sets of estimates of children born with HIV infection and children diagnosed with AIDS by year through 1997. The first series is based on extrapolating data through 1994 from the SCBW, and assumes a gradual decline in the number of HIV-infected women giving birth. These "SCBW" estimates, however, assume a constant transmission rate of 21.43%, representing, as a base case, the effect of no progress in preventing transmission. The second series of estimates is based on the number of children reported with AIDS, adjusted for incubation time and reporting delays. This "surveillance" series, therefore, estimates the number of children born with HIV infection or diagnosed with AIDS that could eventually be observed. The surveillance and SCBW estimates are similar through 1990, but taken together indicate a 42% decrease in the number of HIV-infected births in 1995 and a 65% decrease in 1997. In terms of AIDS diagnoses, the estimates suggest a 16% decrease in 1995 and a 29% decrease

Suggested Citation:"D Workshop II Summary." 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.
×

in 1997. Byers and colleagues feel that these decreases are consistent with, and in large part reflect, widespread implementation of the ACTG 076 regimen.

CDC scientists feel that, collectively, these trend data point to the conclusion that declines in pediatric AIDS, particularly among infants and particularly since 1994, are principally related to declines in perinatal transmission rates with increasing use of maternal and newborn zidovudine (ZDV). While the declines actually precede some of the PHS recommendations, they likely reflect the impact of pregnant women using ZDV for their own health. In addition, since ACTG 076 results were published in February 1994, four months before the PHS recommendations for use of ZDV to reduce perinatal transmission (published in August 1994), some women may have received ZDV in early 1994 based on the clinical trial findings. Also, women were treated for their own health in the 1990s, including as many as 20% of pregnant HIV-infected women. Other factors such as increasing use of therapy among HIV-infected children may also be playing a role by delaying the onset of AIDS; however, it should be noted that the use of combination therapy with potent protease inhibitors was not the standard of care for children during the period of rapid decline.

Chain of Events for Prevention Success

As a framework for understanding the impact of efforts to prevent perinatal HIV transmission, CDC representatives presented its data in terms of a chain of events or steps that must be taken to ensure prevention success. The chain is based on ensuring timely and complete implementation of the ACTG 076 regimen and includes the following steps: (1) receipt of early prenatal care (depends upon access to and utilization of care); (2) provider offering of counseling and testing (depends upon health care provider knowledge, attitudes, beliefs, and practices); (3) client acceptance of testing; (4) HIV-positive client acceptance of ZDV (depends upon provider offering therapy); (5) ZDV adherence (requires taking ZDV during the antepartum, intrapartum, and postpartum periods); and (6) follow-up care for both mother and baby.

Prenatal Care

Compared to the general population, HIV-infected women are much more likely to receive late or no prenatal care. Provisional STEP data indicate that only 63% of HIV-infected women giving birth received prenatal care prior to the third trimester. This compares to 95% to 97% of women in the general population (based on National Center for Health Statistics 1994 natality data and PRAMS data from 11 reporting states). As in the general population, prenatal care use among HIV-infected women varies by race and ethnicity, with African-American and Hispanic women likely to have fewer prenatal visits. The strongest predictor of inadequate prenatal care among HIV-infected women, however, is illicit drug

Suggested Citation:"D Workshop II Summary." 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.
×

use in pregnancy. Preliminary STEP data indicate that the proportion of HIV-infected pregnant women who receive no prenatal care is 35% for illicit drug users but only 6% for non-drug users.

Testing Offered

Among childbearing women responding to the PRAMS survey in 1996, approximately 75% said their health care worker talked to them about HIV testing during pregnancy (based on the median for the 11 participating states). PGEP data indicate that pregnant women were offered counseling and testing at an even higher rate: overall 88%. The range for the four sites was from 82% to 92% of women reporting that they were offered testing during prenatal care. Multivariable modeling within each site for factors associated with not being offered an HIV test during pregnancy did not find any predictors except in North Carolina where African-American ethnicity and prior testing history were found to be significant. Finally, a preliminary analysis of PRAMS data indicate that certain groups are more likely to be offered testing than others: African Americans and Hispanics (versus whites); young women aged 15 to 19 (versus women over 35); women with less than a high school education (versus more than 12 years of school); women cared for in public care settings (versus private settings); and Medicaid-eligible (versus non-Medicaid-eligible) women.

Testing Accepted

PRAMS data indicate a high test-acceptance rate among childbearing women, with 83% of women offered testing actually receiving the test (median of data from five states). Preliminary data from PGEP provide some information on the reasons women give for not being tested, despite receiving counseling from a health care provider. Overall, women who perceived that the provider gave testing little to no importance were three times as likely to not get tested as women who thought the providers were neutral to supportive of getting a test. Among 1,142 interviewees in public prenatal clinics, the most common response among women who did not get tested focused on timing (i.e., not a good time to be tested or to hear results). In a separate study of 1,134 postpartum women, most of whom delivered in university hospitals, the most common reason given by the 212 women who did not get tested was the woman's assessment that she was not at risk, and the second most common reason given was that the woman had already been tested. Women in the prenatal sample were more likely to have attended a public clinic; women in the postnatal sample were more representative of the general public. Other less common reasons cited in the two surveys were fear of certain components of the test (the needle, blood drawing); fear of discrimination or consequences related to health and life insurance; and belief that the woman's partner did not want her to get tested.

Suggested Citation:"D Workshop II Summary." 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.
×

Overall, STEP project findings indicate that in 1996, 79% of HIV-infected women giving birth in four states had been identified as infected by the time of their delivery (numerator based on state surveillance data; denominator based on newborn data from survey of childbearing women).

Acceptance and Receipt of ZDV by HIV-Infected Women

Findings from an enhanced version of the SCBW, which tested blood spots for ZDV, include the following: (1) the prevalence of ZDV use among childbearing women in the eight study states increased substantially between 1994 and 1995, indicating that treatment was widely adopted soon after it was recommended in 1994; (2) on average, in 1995, more than half of all HIV-positive women giving birth in the eight survey states received perinatal treatment with ZDV during labor/delivery or the newborn period (this is a minimum estimate because only ZDV intrapartum or postpartum was measured); (3) if the transmission rate in women receiving ZDV was reduced from 25% to 8% (as in ACTG 076), more than 150 perinatal HIV infections were prevented in these eight states alone in 1995. Population-based pediatric HIV surveillance data from 29 reporting states for 1993 to 1996 shed further light on the extent to which ZDV is being accepted and received among mothers who were diagnosed as HIV-positive before giving birth. These data show that between 1994 and 1996, the proportion of prenatally diagnosed mother–infant pairs receiving some part of the ACTG 076 regimen increased from 36% to 86%. Preliminary STEP project data based on 1995–1996 chart abstractions for approximately 500 HIV-infected women indicate that only 5% of women offered ZDV refused treatment and another 6% discontinued ZDV during pregnancy. Their reasons for discontinuing included non-compliance, toxicity/side effects, and inability to pay. Data from both the PSD study and STEP point to the conclusion that a major reason for not receiving intrapartum ZDV appears to be that the woman's status is unknown at the delivery hospital. A second reason is insufficient time to administer ZDV at the hospital. Finally, with regard to why newborns do not receive ZDV even when their mothers test positive, in preliminary data from the PSD project it appears the most common cause is that providers are not aware of the mother's test result and the second most common cause is parent refusal.

CDC Summary and Recommendations

In summary, CDC representatives highlighted the following points. Since shortly after the PHS recommendations were published, there have been rapid implementation by health care providers and acceptance of therapies by HIV-infected women, as borne out in several different surveillance studies. This, in turn, has affected perinatal AIDS transmission. Overall, approximately two-thirds of pregnant HIV-infected women are on the ACTG 076 regimen. Among those

Suggested Citation:"D Workshop II Summary." 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.
×

not receiving ZDV, lack of prenatal care is the major cause, with illicit drug use being the greatest contributor to the lack of prenatal care. The next biggest reason for not receiving ZDV is that not all women are being offered testing (women in certain high-risk categories are more likely to be offered). This points to the need for education and training to improve provider knowledge, attitudes, and beliefs. While the relative contribution is smaller, some women do refuse to be tested, and some of their reasons—such as fears about potential discrimination or not perceiving themselves at risk—could be addressed. Once women are identified as HIV-positive, there does not appear to be a major problem with providers offering therapy or with women accepting it. Finally, while there is not much data yet on adherence to the ZDV regimen, this is a major concern, especially since there is a move to more complicated regimens.

The CDC is currently pursuing two systemic interventions that it hopes will improve the success of prevention efforts: (1) providing states with model Medicaid managed care contract language on prenatal HIV counseling and testing and (2) adding prenatal testing as a HEDIS quality assurance measure for managed care entities.

To achieve greater success in preventing perinatal HIV transmission, CDC presenters recommended that efforts be undertaken to (1) improve prenatal care access and utilization, especially for substance-using women; (2) improve provider knowledge, attitudes, and practices, especially in private care and managed care settings; (3) improve client perception of risk and need for testing, and address fears about testing; and (4) develop interventions to improve adherence to medications.

Discussion

Among the issues raised in the participant discussion was the need to test all women, regardless of their apparent risk, particularly given the increasing numbers of women who become infected through heterosexual relations. This, in fact, is what CDC is working toward. One participant noted that even if the woman herself does not engage in risky behavior, her partner might. Another participant noted the need for a greater focus on factors such as drug use, other addictive behaviors, and multiple partners, all of which can affect infection rates.

A participant pointed out the need to go beyond a focus on the individual woman's behavior to address broad policy issues that might affect the ability of women who use drugs to access prenatal care; for example, state laws that call for jailing pregnant drug users or that take the baby away if the mother screens positive for drugs. In response, Dr. Rogers suggested a multitiered approach to perinatal AIDS issues, which would address (1) political/social/legal factors; (2) health delivery system factors; and (3) client behavioral factors. There was a discussion of the need to review policies outside the public health system that could affect the availability of and access to prenatal care—especially for illicit

Suggested Citation:"D Workshop II Summary." 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.
×

drug users, but for others as well. For example, national welfare reform legislation may have added more barriers to the ability of women to receive care. A concern was raised about the impact of a shift to Medicaid managed care, which moves women out of public sector prenatal care clinics (where counseling and testing are more likely) and into the private sector, where women may be less likely to receive counseling or testing. A multivariate analysis of factors associated with the receipt of counseling and testing would be helpful in projecting the impact of managed care.

Noting that from a public health perspective, testing prior to pregnancy would be ideal, a participant asked about CDC surveillance data and efforts to promote pre-pregnancy testing. Dr. Rogers noted that a very large percentage of CDC's prevention program goes to publicly funded counseling and testing centers, which include family planning, prenatal care, sexually transmitted disease (STD) prevention, and drug treatment clinics. Dr. Wortley noted that for the STEP project, 33% to 40% of the women who delivered were tested prior to pregnancy.

Discussion focused next on the impact of state statutes on overall outcomes. Are laws that require prenatal counseling and offering of HIV testing rigorously enforced? Perhaps a more salient question is whether the statutes establish a standard of care to which a physician can be held (i.e., does the statute permit lawsuits against the physician?). One participant noted that the California law has resulted in more testing, probably because providers think testing is mandatory. Another participant noted that as cases are litigated, state law and PHS guidelines are both used to establish a standard of care, so that passing state laws gets a message to private providers. The same participant further noted that in many of the cases in litigation, the issue is really perception of risk.

Turning to the impact of prenatal ZDV use on infants, another participant asked if there is any information indicating whether HIV-infected infants born to women who took ZDV in pregnancy actually progress to AIDS more slowly. Dr. Simonds noted that there was not yet enough data from observational cohort studies to really address whether prenatal ZDV exposure prevents or has an effect on the natural history of those children who do become HIV-infected. Ongoing, long-term follow-up studies will provide some of these answers.

It was noted that there is confusion in the field regarding how the guidelines apply to treatment for HIV-exposed infants who did not receive ZDV in the prenatal or intrapartum periods. Discussion focused on the guidelines and what is known about the efficacy of newborn treatment that only begins after delivery. Dr. Simonds responded that both the older and the newer guidelines allow—and in a sense encourage—beginning treatment as soon as possible after delivery, but the efficacy of this approach is not yet known.

Discussion focused on confidentiality being a deterrent to treatment. It was noted that in some policy discussions there is a sentiment that this is non-issue.

Suggested Citation:"D Workshop II Summary." 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.
×

Participants noted, however, that there are instances in which confidentiality makes a critical difference; for example, in one case where a woman was murdered by her boyfriend after finding out she was infected with HIV. Dr. Simonds reported that PGEP will have some data on adverse events such as loss of job, loss of relationships, and domestic violence.

Hrsa Data

Michael Kaiser and Karen Hench presented information from the Health Resources and Services Administration (HRSA), including an overview of HRSA-funded AIDS prevention and treatment; essential components of a care system to reduce perinatal HIV transmission; findings from a range of HRSA-funded projects; and a more detailed review of the Women's Initiative for HIV Care and Reduction of Perinatal Transmission project (WIN). HRSA is the service branch of the Department of Health and Human Services (DHHS), that reaches historically underserved populations, including low-income populations, and racial/ethnic minorities. Among the HRSA programs are Maternal and Child Health Services Block Grant Programs, Healthy Start, Community and Migrant Health Centers, Health Care for the Homeless, Rural Health Programs and HIV/AIDS Programs. Among HRSA's HIV/AIDS Programs are the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act Programs (Titles I–IV), Special Projects of National Significance (SPNS), and AIDS Education and Training Centers (AETCs), which provide training on implementation of PHS guidelines.

While HRSA does not have surveillance data, it does have site-specific service delivery findings that complement surveillance findings presented by CDC. Overall, data from HRSA-funded project sites across the country indicate that (1) with adequate counseling, women accept HIV testing, particularly during pregnancy; and (2) significant advances have been made by HRSA-supported programs in reducing perinatal HIV transmission through voluntary, non-regulated HIV counseling, testing, and perinatal ZDV prophylaxis. Examples were given from select HRSA-funded project sites where 93% to 97% of HIV-infected pregnant women accepted ZDV and where perinatal transmission had been reduced so dramatically that at least three of the project sites have reported no cases of perinatal transmission for periods ranging from six months to four years.

Essential Components of the Care System

Similar to the chain of prevention events noted in CDC's presentation, HRSA outlined ''essential components" of the care system to reduce perinatal HIV transmission. These include early identification of HIV infection for women of childbearing age, providing HIV counseling and voluntary testing, linking HIV testing

Suggested Citation:"D Workshop II Summary." 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.
×

sites and primary care, ensuring access to care, offering ZDV prophylaxis, and maintaining women and infants in care.

Acceptance of Counseling and Voluntary Testing

Findings from a range of HRSA-funded project sites indicate there is a high testing acceptance rate among women in prenatal care. A small survey of obstetricians and gynecologists in New Orleans found that more than three-fourths of providers reported at least 90% acceptance of HIV testing. Of all women who received pre-test counseling through SPNS adolescent care projects, 91% accepted testing, and 94% of pregnant women accepted testing. At one Cook County site, a 1996 survey indicated that 70% of prenatal and postpartum women were offered HIV testing. Of those offered pre-test counseling, 82% accepted testing, compared to 61% acceptance among those without prior counseling.

Access to HIV Care

Successful models of care funded by HRSA include: one-stop shopping models in St. Louis, Missouri and Miami, Florida; co-location of a birthing center and a comprehensive care center in New York City; and a publicly funded case management program in northern Virginia that allows women to receive care in a private provider setting.

Offering ZDV

All HRSA-supported programs are expected to routinely offer ZDV prophylaxis to pregnant women living with HIV. In one rural Wisconsin project, 100% of women receiving prenatal case management accepted and received ZDV.

Maintaining Women and Infants in Care

Post-delivery care maintenance is essential both for the mother and for the infant. Some successful strategies include home visits by nurses or case managers, family appointments that allow mother and infant to get care at the same time or place, transportation assistance (bus tokens, cab vouchers, rail passes), and the use of peer advocates to help negotiate the care system.

Reaching Providers

Even if universal access to care is achieved, much would still depend on the provider. HRSA has therefore focused considerable resources on provider preparedness, including provider training and technical assistance, and dissemination

Suggested Citation:"D Workshop II Summary." 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.
×

of provider and consumer educational materials, including step-by-step protocols for each phase of the ZDV regimen and a guide for perinatal HIV counseling and testing.

Focus Group Findings

Various HRSA-supported focus groups have identified barriers to optimal reduction of perinatal HIV transmission. Clients have identified the following barriers to HIV counseling and testing: distrust of providers, concerns about confidentiality of test results, fear of discrimination, fear of losing custody of children, previous negative HIV test, and the perception of not being at risk. With regard to the use of ZDV, client-identified barriers include: concerns about effects of ZDV during pregnancy, mistrust of information from health care providers, judgmental responses from providers when women elect not to take ZDV, fear of providers pressuring women to take ZDV, fear of legal/social consequences of refusing ZDV, and lack of timely availability of ZDV. Systemic barriers identified include: lack of transportation, child care, awareness or understanding of resources, and linkages between providers; limited client knowledge; limited provider knowledge; and a sense of helplessness or hopelessness. Finally, barriers identified by providers include: lack of perceived risk among "private" patients, lack of time, lack of reimbursement for counseling time, and lack of knowledge or training.

Women's Initiative for HIV Care and Reduction of Perinatal Transmission

HRSA's WIN, which includes ten sites across the country, was developed in FY 1995 in response to ACTG 076 findings. WIN goals include encouraging women to learn their HIV status as early as possible, linking women with a continuum of ongoing comprehensive care services, and facilitating strategies that reduce perinatal HIV transmission. Very preliminary WIN data from 1997 client interviews and 1996 provider interviews, along with some medical chart reviews, provide some interesting information on a range of topics. All clients interviewed were HIV-positive and pregnant. On the issue of quality and content of HIV counseling, 72% of clients reported that they were aware the test was going to be done prior to being tested; 6% reported feeling forced to take the test; 56% of clients reported that they received post-test counseling, and of these, 53% felt it was non-directive/non-coercive; and nearly 75% felt counseling information was clear. Among WIN clients, the ZDV acceptance rate has been very high: 92% for prenatal use, 95% for intrapartum use, and 94% for the use in neonatal period. About three-fourths of respondents said they had been counseled about not breast-feeding their babies; however, none of the WIN mothers did breast-feed.

Suggested Citation:"D Workshop II Summary." 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.
×

The five most needed medical and support services identified by WIN participants include: (1) prescription services; (2) help with money, food, and clothing; (3) transportation; (4) housing; and (5) dental care. Of these, the services least likely to be received were housing, dental care, and help with money, food, and clothing.

Summary

Based on descriptive information from a range of HRSA-supported projects and on preliminary qualitative and quantitative data from WIN, HRSA representatives reported the following conclusions and recommendations: (1) with adequate counseling, women accept HIV testing, particularly during pregnancy; (2) there has been significant progress in reducing perinatal HIV transmission through voluntary, non-regulated responses; (3) an ongoing, comprehensive system of care is critical; (4) services must be provided in settings that are accessible, as well as culturally, age, and gender appropriate; (5) different strategies should be employed for different settings and target populations; (6) provider training opportunities related to reducing perinatal HIV transmission should continue to be offered to assist providers in ensuring the availability of quality, appropriate care; (7) providers must involve clients in personal health care decisions and program planning, implementation, and evaluation; and (8) the perceived barriers of providers and consumers need to be identified and addressed to further reduce perinatal HIV transmission.

Provider Practices

The provider panel included representatives from: the American Academy of Family Physicians (Marshall Kubota); the Association of Women's Health, Obstetric and Neonatal Nurses (Maureen Shannon); the American College of Nurse Midwives (Jan Kriebs); the Association of Maternal and Child Health Programs (Deborah Allen); and the American Association of Health Plans (Johanna Daily). Joseph Thompson from the National Committee for Quality Assurance and Timothy Flanigan from The Miriam Hospital also made presentations.

American Academy of Family Physicians

The American Academy of Family Physicians (AAFP) is the medical specialty organization representing more than 84,000 practicing family physicians, family practice residents, and medical students with an interest in family practice. AAFP representative Marshall Kubota highlighted the following points: (1) family physicians and general practitioners are responsible for more outpatient medical

Suggested Citation:"D Workshop II Summary." 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.
×

visits than any other specialty; (2) a significant proportion of family physicians include obstetrics and pediatrics in their practices (30.5% provide obstetric care and 91.5% pediatric care); and (3) preventive health services are a high priority for AAFP.

Incorporation of Guidelines

AAFP policies regarding HIV disease have closely followed those set forth by PHS. The academy recommends universal HIV counseling and voluntary testing for all pregnant women, and has adopted as policy the section "Guidelines for Counseling and Testing for HIV Antibody" from the CDC statement "Public Health Service Guidelines for Counseling and Antibody Testing to Prevent HIV Infection and AIDS." In addition, the AAFP supports the enactment of state laws providing for (1) reporting to the appropriate public health authorities of all individuals testing positive for HIV, and (2) public health agencies to conduct appropriate confidential contact identification, notification, and counseling. This does not preclude the physician or patient from notifying the contacts. Finally, HIV education is part of state association meetings, and the two AAFP publications also cover HIV issues.

Implementation

Data from the National Ambulatory Medical Care Survey indicate that in 1993, HIV accounted for only 0.12% of all family practice office visit conditions, and that counseling on HIV transmission was included in 0.54% of office visits. While Dr. Kubota noted that these data are somewhat old, he still felt they reflected important trends. Dr. Kubota offered several observations about why family practice physicians may not be offering counseling and testing. First, he said, family practice physicians' standards are high, so if they include HIV testing they would want to do appropriate pre- and post-test counseling; yet the yield—the number of HIV-positive patients—is low. Time pressures are even greater now with the move to a highly penetrated managed care market. Although other tests, such as phenylketonuria (PKU) and galactosemia, also have a low yield, they do not require intensive pre-test counseling. There is also an issue of mixed messages about whom to test: while in the past, the model has been risk-based testing, suddenly in the area of prenatal care, risk stratification does not matter. This is a contradiction. The rapid changes in HIV treatment also add a new complexity to counseling, so that the models of treatment and care are moving much faster than the average family physician can keep up with. Finally, in many towns there is a lack of expert backup help should a patient test positive. All of these factors mediate against family physicians routinely providing testing and counseling for HIV.

Suggested Citation:"D Workshop II Summary." 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.
×
Discussion

During the discussion a participant remarked on the importance of recognizing that pretest counseling recommendations may deter providers from testing. In response, Dr. Kubota pointed out that if the goal is to recommend prenatal testing, then putting HIV on a checklist for routine prenatal tests is probably what physicians want and is likely to be most effective.

Association of Women's Health, Obstetric, and Neonatal Nurses

Maureen Shannon spoke based on her clinical expertise working as a nurse midwife at the Bay Area Perinatal AIDS Center (BAPAC) at San Francisco General Hospital and her participation in the development of guidelines addressing the HIV counseling, testing, and clinical care of women. BAPAC offers "state-of-the-art" services to HIV-infected women and infants by combining access to clinical trials with primary, perinatal, pediatric, and social support services. Services are family-centered, offering integrated maternal/infant/child clinical care, a model that works well for maintaining the health of both mother and child. Since May 1995, only one of sixty-two infants born to HIV-infected women receiving ongoing prenatal care through BAPAC has tested positive. This represents a perinatal transmission rate of less than 2%. Ms. Shannon offered the following observations.

Incorporation of PHS guidelines in California

California statute has incorporated PHS guidelines, requiring every prenatal care clinician to counsel women about HIV and to offer voluntary testing. These activities must be documented in the woman's medical record. The state has also developed and widely disseminated comprehensive clinician education and resource materials (including interactive teaching materials for use with patients) and has made a toll-free clinician help line available. Ms. Shannon noted that the resource materials were of very high quality and recommended that they be evaluated for use in other states, as in the California Perinatal HIV Testing Project described below.

Implementation in California

Clinical implementation of the guidelines is very uneven. In one large HMO (health maintenance organization), there is more than 95% testing in prenatal clinics, but it is not clear how informed these clients are about the test and its implications. In another large medical center in the same area, only about half of the women using a well-known physician-based practice receive testing. Yet in

Suggested Citation:"D Workshop II Summary." 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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the same center, more than 90% of the women seen by nurses, nurse practitioners, or nurse midwives receive testing. The difference has been attributed to a number of factors, including interactive counseling of women by the nurses compared with a more passive approach by the physician group (which uses an information sheet in the prenatal packet given to all new prenatal clients), and the more consistent incorporation of clinical practice guideline recommendations into practice by nurses compared to physicians. Later, during the discussion, Ms. Kriebs observed that another reason is differing roles and responsibilities, with nurses having more time to devote to counseling and patient education in some settings (this may be decreasing in many centers due to the impact of managed care).

Monitoring Compliance and Updating Guidelines

Ms. Shannon observed that it is reasonable to hold providers, practices, and health plans accountable for HIV guidelines and statutes through the Joint Commission on Accreditation of Health Care Organizations (JCAHO) and National Committee for Quality Assurance (NCQA) mechanisms. Tracking HIV testing rates, however, is problematic because: some hospitals prohibit recording HIV testing in patient charts, some clients opt for anonymous testing, and targeting acceptable rates for HEDIS might lead to coercive testing. In her opinion, it would be preferable to track rates of counseling and make efforts to understand variations in testing rates. She also urged professional organizations to regularly update and disseminate clinical guidelines to their membership.

Primary Care Model

Ms. Shannon advocated a primary care prevention model for women, children, and families. From a prevention perspective, HIV counseling and voluntary testing should be offered well in advance of pregnancy and should be incorporated into primary care for all sexually active individuals (female and male) as part of STD risk reduction, screening, and early treatment. Ms. Shannon noted that while a primary care philosophy is endorsed by American Women's Health Organization of Neonatal Nurses (AWHONN) and many other professional organizations, very few programs actually offer this kind of approach to clinical services. An example is the sole targeting of pregnant women for HIV counseling and testing, without providing adequate HIV counseling and testing, access to clinical services, and psychosocial support to other family members. In addition to clinical services that focus on reducing perinatal transmission, it is essential that we expand services in order to provide for the health needs of the mother during and after pregnancy in a continuous and comprehensive fashion. Too often, the health needs of the mother are inadequately addressed after she gives birth.

Suggested Citation:"D Workshop II Summary." 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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Clinical Care and Clinical Trials

Ms. Shannon made the following points. (1) Pre-conception counseling should be part of the clinical services offered to HIV-infected women. (2) Participation in clinical trials should be offered to all HIV-infected women, since some of the current investigations may further reduce vertical transmission of HIV and improve maternal health status. (3) Counseling of the HIV-infected pregnant woman should be non-directive regarding the continuation or termination of pregnancy and the use of antiretroviral therapy; ultimately, it is the woman's decision. Experience shows that judgmental or coercive counseling leads to alienation from care and mistrust of the health care system, thus delaying the initiation of therapeutic interventions. (4) HIV-infected pregnant women should be counseled and offered antiretroviral and other HIV therapy as determined by their disease status. The PHS guidelines for the use of antiretroviral drugs in HIV-infected pregnant women should be incorporated into the clinical care of these women. Clinicians with limited knowledge regarding these treatment strategies should establish ongoing collaborative relationships with specialists in the management of perinatal HIV. (5) Regionalization of perinatal HIV services should be seriously considered, so that all women have the opportunity to access state-of-the-art clinical care provided by perinatal experts and to enroll in perinatal clinical trials.

California Perinatal HIV Testing Project

Mori Taheripour and Gail Kennedy provided a brief overview of the California Perinatal HIV Testing Project, funded by the California Department of Health, Office of AIDS, and the Health Care Financing Administration (HCFA) Medicaid Office in March 1997. A direct response to the California law mandating HIV counseling and promoting voluntary testing, the program combines the development and dissemination of provider resource materials with implementation assistance to providers, including managed care programs. It has succeeded in part because of buy-in from programs such as the state Maternal and Child Health Program, which has helped disseminate materials. The project is based on the understanding that for providers, a major barrier to offering counseling and testing is the lack of educational resource materials. The project's resource packet includes a flip chart for providers, a brochure that mirrors the flip chart (available in several languages), and testing and counseling guidelines. The project has been realistic about the limited amount of time providers have for counseling by providing a checklist for an abridged counseling session. Materials went out to approximately 7,000 providers in February 1998. Response has been very positive, with more than 300 requests for additional materials and for Spanish language versions. Work is now under way to help HMOs implement the program's guidelines. The program is being evaluated: data from a provider satisfaction

Suggested Citation:"D Workshop II Summary." 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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survey should be available in June 1998, along with statewide data on the impact of the California law on HIV testing rates.

American College of Nurse Midwives

Jan Kriebs spoke on behalf of the American College of Nurse Midwives (ACNM), which represents approximately 6,500 certified nurse midwives in practice or in school in this country. Nurse midwives practice in every state as well as in the District of Columbia and Puerto Rico. While nurse midwifery is usually thought of as care for low-risk women, two-thirds of U.S. midwives care for women who are at-risk—socioeconomically, demographically, or medically.

Incorporation of PHS Guidelines

The ACNM has incorporated PHS recommendations into its "ACNM Position on HIV/AIDS," which calls for universal counseling and offering of HIV testing, with informed consent. In addition, the statement specifically (1) opposes mandatory testing; (2) calls for non-directive counseling regarding reproductive choices and pregnancy care; (3) advises that all HIV-positive women should be counseled regarding risks of prenatal ZDV and should be offered the medication; and (4) recommends that all HIV-positive women with access to adequate formula supplies should be advised to avoid breast-feeding. The current ACNM statement is likely to be amended to include a discussion of more complex antiretroviral therapies.

Implementation

Nurse midwives have good compliance with counseling programs because they are taught that risk status alone cannot identify all HIV-infected women, which means that every woman needs to hear the basics of counseling. The ACNM also has a program of continuing education for members, which regularly includes topics relating to HIV.

Clinical Experience

Using universal counseling and voluntary testing, two Baltimore area practices with which Ms. Kriebs has been affiliated have achieved a greater than 95% acceptance of testing and 100% acceptance of ZDV use by HIV-positive pregnant women. As a result, transmission has been less than 10% over four years. The success rate has been attributed to a well-coordinated multidisciplinary team effort that provides smooth transitions between counseling, testing, and follow-up care. Within these practices, there is a growing trend for HIV-positive women to plan pregnancy. These women, like other high-risk mothers, want to minimize

Suggested Citation:"D Workshop II Summary." 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.
×

the risks for themselves and their infants. Ms. Kriebs noted that comprehensive HIV services are resource intensive, an issue that will need to be addressed particularly in an era of managed care.

Ethical Issues

Ms. Kriebs stated that in her opinion, it is not ethical to screen for a chronic, potentially fatal disease in a vacuum, or by imposing a gender bias in responsibility by testing only pregnant women. Rather, providers have a responsibility to empower women to make good decisions for themselves; then, virtually all will accept testing as part of good care for themselves and their children.

Discussion

Discussion focused on the similarities and differences between counseling and testing for HIV versus other diseases. Ms. Kriebs noted that HIV is different from other STDs because it is still life-threatening. HIV counseling should therefore be more extensive than for other STDs and more comparable to that for heart disease, diabetes, or other chronic, fatal diseases.

Association of Maternal and Child Health Programs

Deborah Allen spoke on behalf of the Association of Maternal and Child Health Programs (AMCHP), which represents state maternal and child health programs. Established under Title V of the Social Security Act, these programs are responsible for the health of all women and children in the state, including children with special health care needs. Responsibilities are met through assessment, policy and program development, and assurance of care.

Incorporation of PHS Guidelines

AMCHP has incorporated PHS guidelines into its policy on HIV counseling and testing, which supports early and routine counseling to enable all pregnant women and others of reproductive age to understand the risk of HIV infection and the benefits of early testing, identification, and treatment. In addition, the statement calls for voluntary testing with informed consent as the standard of practice.

Implementation

State MCH programs are engaged in planning and delivery of appropriate HIV/AIDS-related services through activities such as provider training; incorporation of HIV services into Title V clinical services for pregnant women and children; conducting outreach; providing family support services; and linking

Suggested Citation:"D Workshop II Summary." 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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specialty care to community-based programs. Title V programs work collaboratively with many other state agencies and programs to build an infrastructure that addresses HIV/AIDS prevention and care.

Massachusetts Title V Program Experience

As in many states, the Massachusetts Title V program uses a range of approaches to address HIV/AIDS, including conducting a needs assessment to identify gaps in services, and developing and obtaining Ryan White Title IV funding for a regionalized care system. Under this system, pediatric HIV specialists provide care in community sites once a month in conjunction with local pediatric primary care providers. This allows families to receive high-level services in their own communities, an approach that reflects the Title V mandate and commitment to providing family-centered, community-based care. One of the lessons learned from interviews conducted by the Massachusetts Title V program is that families say their greatest need is for assistance in dealing with HIV/AIDS-related discrimination and stigma.

Barriers

Among the barriers faced by state Title V programs as well as other providers are organizational/agency ''turfism"; the tendency to focus on public providers (where there is more direct clout); and not recognizing the power of the "bully pulpit" in persuading private providers of the value of universally offering counseling and testing.

American Association of Health Plans

Johanna Daily, an infectious disease consultant with a New England HMO, spoke based on her experience and that of colleagues working in managed care environments. She made the following points. (1) Strategies to change managed care practices need to take into account the fact that within any given practice, guidelines of the managed care organization with which they contract may vary tremendously. While some of the larger HMOs have enough staff to write HIV protocols and have nurse practitioners to implement them, others do not. (2) The cost-effectiveness issue needs to be addressed. For many HMOs, decisions are made based on whether universal counseling and testing are cost-effective, and for many the impression is they are not. It would be useful to have data comparing the costs of care for an HIV-infected infant with the cost of offering universal counseling and testing. (3) Dr. Daily noted that in her own HMO, the initial prenatal visit is carried out by nurse midwives, who use a checklist approach to testing and uniformly counsel all pregnant women. This approach seems to work well. (4) HMO collaboration with the NIH or other research programs is very

Suggested Citation:"D Workshop II Summary." 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.
×

important to clinical practice because it allows HMOs to refer HIV-infected pregnant women to specialized care, including antiretroviral therapy, without incurring additional expenses. (5) Among the centers contacted by Dr. Daily, counseling is consistently offered; however, test acceptance varies, depending upon the "pitch." Patients are less likely to accept testing if they feel it means they are identifying themselves as high risk. They are more likely to accept testing if they see the test as a means of helping providers to better manage their care. It may be helpful to provide specific language to be used in counseling. (6) There is a need for additional HIV funding, since good, comprehensive services are expensive.

Discussion

During the discussion, Dr. Kubota pointed out that in his experience, physicians who treat HIV are frozen out of HMO provider panels, since their care is seen as too expensive.

National Committee for Quality Assurance

Joseph Thompson represented the National Committee for Quality Assurance (NCQA), a private, non-profit organization located in Washington, D.C. The mission of NCQA is to maintain and improve the quality of care within the managed care environment by holding managed care organizations (MCOs) accountable and providing purchasers of care with information on quality. This is accomplished through two NCQA activities: on-site accreditation and the use of standardized HEDIS measures to compare plans. Using HEDIS measures, NCQA last year provided information to the public on the care of 37 million commercial enrollees, all Medicare enrollees, and Medicaid enrollees in 35 states.

In his presentation, Dr. Thompson focused on the clinical measures within HEDIS as the area in which there is the greatest opportunity for NCQA to affect the quality of HIV/AIDS care. In general, NCQA evaluations show great variation across plans in the quality of clinical care. While there are HEDIS measures in place to reflect primary prevention of vaccine-preventable disease (immunization) or early detection of breast cancer (mammography), there are gaps in HEDIS with regard to measures for several chronic diseases, including HIV/AIDS.

With funds from the Kaiser Family Foundation, NCQA has started to look at HEDIS measures for HIV/AIDS care. An expert panel has targeted three potential measures: (1) HIV evaluations, either counseling or screening; (2) PCP prophylaxis; and (3) adequate antiretroviral therapy. Dr. Thompson noted that measures for PCP prophylaxis and adequate antiretroviral therapy are problematic because they require identification of people with HIV/AIDS and therefore run into confidentiality issues. In addition, from the HEDIS perspective, there is a sample size issue because of the small number of HIV-infected individuals in any given plan.

Suggested Citation:"D Workshop II Summary." 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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From the perspective of perinatal transmission, the HEDIS focus on HIV evaluations is most relevant. Current thinking within NCQA is that in the absence of universal counseling with a universally accepted and documentable counseling event, it may be very difficult to focus on counseling as a measure. It is possible, though, to document testing, since there are clear CPT-4 codes and there are lab data that can be tracked. Dr. Thompson cautioned, however, that HEDIS is a "two-edged sword." If HIV testing is implemented as a HEDIS measure, there will be financial incentives for the plans to increase testing rates, but this might also lead to coercive testing or testing without informed consent. Concerns about this possible impact may be mitigated if an HIV testing measure is implemented only in those states where counseling is legislatively mandated, so that there is a legal imperative for plans to provide and document that pre-test counseling has occurred.

Discussion

Asked to elaborate on the potential for coercive testing, Dr. Thompson noted that if HIV testing is added as a HEDIS measure, plans with higher percentages of tested women will be viewed by purchasers as providing better care. If universal counseling is not required and limited to testing, some plans may focus only on increasing the numbers tested and ignore the importance of informing the woman and obtaining her consent. Dr. Thompson reiterated the importance of legal requirements for counseling as a means of assuring that plans adequately counsel and inform. Ms. Shannon asked whether there has been any consideration of a HEDIS measure focusing on counseling and testing of men, as a primary prevention measure. Dr. Thompson replied that HEDIS screening measures are limited to those with clear scientific evidence linking primary screening to a specific intervention outcome. Since this is not yet the case for populations other than pregnant women, it is unlikely that HIV testing in the general population would become a HEDIS measure.

Rhode Island State Prison System

Timothy Flanigan, an infectious disease specialist who directs an HIV clinical care practice at The Miriam Hospital in Providence, Rhode Island, and also directs HIV care for the Rhode Island State Prison System, spoke about the relationship of HIV to the correctional system. He focused on the importance of reaching incarcerated populations as a means of dramatically reducing perinatal AIDS transmission both in incarcerated populations and in the community at large. Dr. Flanigan made the following points:

  1. Incarcerated men and women represent a substantial portion of HIV-infected individuals in this county. Mainly due to the large number of injection
Suggested Citation:"D Workshop II Summary." 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.
×
  • drug users (IDUs), AIDS is 14 times more common in correctional systems than in the U.S. population overall. There are more drug users in correctional facilities than in all drug treatment centers combined. Nearly half of incarcerated women are in for drug-related charges, which accounts for the fact that among those who are incarcerated, the HIV infection rate among women is almost three times that of men. Correctional populations continue to increase. Between 1980 and 1996, the number of women incarcerated increased threefold.
  • Incarceration offers a unique opportunity to reach hard-to-reach populations. Prevalence of HIV among incarcerated women ranges from less than 1% to 25%. Women tend to have short lengths of stay, and frequently move from incarceration to the community and back again. Generally, these women have little access to health care in the community, so incarceration offers a unique opportunity to counsel, test, initiate treatment, and link to community services.
  • The Rhode Island Prison System provides an example of how a correctional based system of HIV care can impact the broader community. Within the Rhode Island system, all incarcerated individuals are routinely tested upon intake. For infected individuals, comprehensive HIV care is available, including antiretroviral agents, viral load testing, gynecological care, substance abuse counseling, and psychological support. In addition, HIV patients are successfully linked to follow-up care in the community: after release, 83% of HIV-infected women link with initial medical follow-up, and 68% make the initial contact with a community-based drug treatment service. The Rhode Island State Prison HIV program has had a tremendous impact on HIV diagnosis in the state overall: over the past five years, 32% of all persons identified by the health department as HIV-infected were tested through the correctional system. More specifically, 28% of women, 39% of women IDUs, and 38% of all persons with heterosexual HIV infection were identified through the correctional system.

Finally, Dr. Flanigan recommended that: (1) HIV testing and diagnosis of incarcerated individuals always be linked to comprehensive HIV care during incarceration and community care after release; (2) HIV-positive persons be integrated within the incarceration setting without segregation, and institutional confidentiality maintained; (3) "turf wars" between the National Institute of Justice, the corrections system, state departments of health, and Ryan White programs be overcome so that Ryan White resources can be used to initiate diagnosis and treatment within the correctional setting (it may be possible to mandate Ryan White programs to work with the incarcerated population); and (4) standards be promulgated for comprehensive HIV care to incarcerated individuals. At the federal level, this could be done by the National Institute of Justice.

Suggested Citation:"D Workshop II Summary." 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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Results From Provider And Patient Surveys And State Data Systems

This panel included presentations from Massachusetts, North Carolina, and New Jersey and from the federal Health Care Financing Administration (HCFA).

Massachusetts

Deborah Allen, from the state's Title V program, reported on the Massachusetts experience.

Incorporation and Implementation of PHS Guidelines

The State of Massachusetts has used a variety of interventions to educate providers and promote counseling, testing, and the use of ZDV for HIV-infected pregnant women: (1) soon after ACTG 076 results were published, the state sent a clinical advisory to obstetric, pediatric, and women's health providers; (2) a pocket guide on counseling and testing has been disseminated; (3) provider training has been undertaken statewide; and (4) a media campaign has also been launched. Provider materials are currently being revised to include additional therapies and to promote a model of specialized HIV care for pregnant women (previously, a primary care model was promoted). The Department of Public Health currently provides HIV counseling and testing to 20,000 to 25,000 pregnant women per year.

Trends and Challenges

Data for 1992 to 1995 indicate two related but separate trends in Massachusetts: (1) the number of HIV exposed infants dropped approximately 44%; and (2) the decline in the number of HIV-infected infants was even greater—approximately 75%. These trends reflect more women knowing that they are HIV-positive, accompanied by a move among HIV-infected women to forgo or delay pregnancy; and the use of ZDV in pregnancy. Despite these gains, challenges remain in the state: (1) in 1995, 15 HIV-infected babies were born in Massachusetts; (2) it is estimated that eight of their mothers did not know their status; and (3) there may be an emerging trend of women opting to become pregnant or to continue pregnancies now that therapies are available.

Provider Survey on Counseling and Testing

Ms. Allen reported the following findings from a 1996 survey of obstetric and midwife practices in Massachusetts. (1) On average, these providers reported

Suggested Citation:"D Workshop II Summary." 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.
×

that in 1995, they offered testing to about 73% of their pregnant patients; they counseled 67%; and they tested about 39%. It is interesting to note that despite the fact that it is not legal to test in Massachusetts without counseling, clearly this is happening in some practices. Also, it is clear that far fewer women are tested than are counseled or offered testing. (2) Having an HIV clinical practice policy in place is the single best predictor of whether a provider counsels, offers, or performs a test. Client characteristics are also predictors of whether women are offered or receive testing in Massachusetts. Specifically, African Americans are more likely to be offered a test; Hispanics are more likely to be tested; and privately insured patients are less likely to be tested. Ms. Allen noted that these findings indicate that providers continue to use a risk assessment model. She observed that providers do not seem to be getting a clear message about what the PHS guidelines say: that is, they think they are following the guidelines when they counsel based on risk. (3) Survey findings indicate that provider attitudes do not seem to make a difference in whether the provider counsels, offers a test, or tests; however, they do make some difference in the likelihood of the practice having a policy in place.

Patient Survey on Counseling and Testing

In a separate but parallel study conducted among HIV-infected women who had experienced pregnancy, women were asked whether they thought testing should be mandatory. Nearly all—24 of 26 interviewees—said yes, "because of the baby." Ms. Allen noted that this finding should be taken as evidence of the strong feelings HIV-infected women have about their babies, not necessarily as the best public policy to pursue. The patient interview also indicated that HIV-infected women want to have a good relationship with their providers and that providers can greatly influence patients' decisions. However, it appears that often providers do not recognize the importance of this relationship. Finally, Ms. Allen noted that having a case manager can influence women's acceptance of testing, particularly women who are not from the dominant culture.

North Carolina

Rachel Royce, an epidemiologist from the School of Public Health, University of North Carolina, presented an overview of efforts in her state to prevent perinatal HIV transmission through prenatal HIV counseling and testing. She presented results of a survey of prenatal care providers and a study of women offered testing during prenatal care.

Incorporation of Guidelines

Immediately after the ACTG 076 results were reported, North Carolina's health officer sent a letter to all prenatal care providers in the state informing

Suggested Citation:"D Workshop II Summary." 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.
×

them of the results and giving them a list of consortium centers and providers that could take care of HIV-infected women. In August 1995, North Carolina passed a law requiring providers to counsel women as early in pregnancy as possible, and to offer testing.

Study Findings/Implementation of Guidelines

Several recent evaluations indicate that around 70% of pregnant women in North Carolina are tested for HIV during pregnancy. Data from the Pregnancy, Infection and Nutrition (PIN) study—a prospective cohort study, based on a sample of women attending prenatal clinics in North Carolina teaching hospitals and health department clinics—indicate that 89% of women interviewed were offered an HIV test during pregnancy. Based on study findings, the researchers project that had testing been universally offered, the proportion tested would have increased from 68% to 75%. PIN data also show that women's perceptions of provider recommendations clearly influence the decision to accept or reject testing. Women who perceive that their provider thinks it is important to get tested are much more likely than others to accept testing. Reasons women gave for refusing testing include the following: they did not believe they had HIV/AIDS (68%); had been tested recently (24%); or did not want to know results (5%). Very few women gave fear of the consequence of getting a test as a reason. Finally, PIN study findings indicate that women are not naive about testing prior to the index pregnancy. In fact, 67% in the study sample were tested prior to pregnancy.

Findings from a July 1995 provider survey (conducted prior to passage of the North Carolina law) indicate that while providers said they supported universal offering of testing, their practice varied from this ideal. More specifically, while 93% of respondents said they support universal offering of testing, only 82% of practices had a policy of offering testing to all; 67% of providers reported that they offered testing to all women; and only 54% said they would recommend testing to women with no identifiable risk. The 1995 survey also indicated that providers' HIV testing recommendations and practices are influenced by practice setting and patient's insurance status. Private providers and HMOs were least likely to recommend testing; public health providers were most likely, followed by providers at tertiary care centers. Providers were most likely to recommend testing to public/uninsured and self-pay patients and least likely to recommend testing to privately insured patients.

New Jersey

Sindy Paul, medical director of the Division of AIDS Prevention and Control, New Jersey Department of Health, presented an evaluation of implementation in her state. In addition to CDC surveillance data, findings from four other

Suggested Citation:"D Workshop II Summary." 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.
×

sources were highlighted: the Survey of Childbearing Women (SCBW); the STEP project; a provider survey; and an assessment of pregnant women's knowledge, attitudes, and beliefs regarding the use of ZDV (convenience sample, 170 pregnant women).

Incorporation and Implementation of Guidelines

Since 1995, New Jersey has had a law requiring mandatory counseling and voluntary testing of all pregnant women. The law stipulates three components: HIV counseling, offering testing, and testing. A physician-to-physician peer education program has been implemented in the state. The New Jersey Department of Health and Senior Services (NJDHSS) funded and collaborated with the Academy of Medicine and the State Medical Society on a statewide symposium on the prevention of perinatal HIV transmission in 1997. The NJDHSS also funds and collaborates with the Academy of Medicine of New Jersey on roving symposia of the topic. Finally, a public education campaign has been undertaken, including the use of posters, postcards, videos, and public service announcements. These discuss the benefits of ZDV in preventing perinatal HIV transmission.

Trends/Findings

Prevention of perinatal HIV transmission is a public health priority in New Jersey, since it is the state with the highest proportion of women among its cumulative AIDS case reports (27%), and it has the third highest number of pediatric AIDS case reports in the nation (695 as of May 31, 1998). Virtually all of New Jersey's pediatric AIDS cases (94%) and HIV-infected pediatric cases (98%) are the result of perinatal transmission.

In New Jersey, HIV seroprevalence among pregnant women peaked in 1991 at 0.56% and declined through 1997, when it was 0.27%. Cumulative seroprevalence rates among childbearing women in New Jersey since 1991 are 1.47% for African Americans, 0.48% for Hispanic women, and 0.10% for whites. While the rate is declining among all racial and ethnic groups, the state's African-American women are disproportionately affected, with rates 14.7 times that of their white counterparts and 3 times greater than that of Hispanic women.

Results from New Jersey's Survey of Childbearing Women (SCBW) indicate that the percentage of HIV-infected pregnant women receiving ZDV increased significantly between 1994 and 1995, from 13% to 48%. An analysis of factors associated with ZDV use indicates that women less than 30 years old were more likely than those 30 and older to have used ZDV in pregnancy. It is estimated that ZDV use in New Jersey prevented perinatal HIV transmission to 28 children in 1995.

STEP provides information on the use of ZDV during the three perinatal

Suggested Citation:"D Workshop II Summary." 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.
×

phases (prenatal, intrapartum, and postnatal/newborn) and also provides follow-up data on outcome. STEP data for the state indicate that between 1993 and 1996, ZDV use during pregnancy increased from 7.6% to 47%; use during delivery increased from 2% to 35%; and use in neonates increased from less than 1% in 1993 to 64% in 1996. Overall, the proportion of women/neonates who received ZDV during pregnancy, delivery, or the neonatal period increased from 8% in 1993 to 67% in 1996.

Since a significant proportion of HIV-infected women still do not receive ZDV in pregnancy, two surveys were undertaken to determine the reasons. A provider survey of eligible physician members of the Academy of Medicine of New Jersey (52% response rate) indicates that 94% of respondents offer HIV testing to all or almost all of their patients, 90% discuss the benefits of testing, and 77% offer counseling. Overall, only 59% offer all three components. Respondents were more likely to offer counseling if they felt: it fit into the office routine; it resulted in better outcomes; it was easy; they were confident in counseling; the patients appreciated it; it was the standard of care; or it had been actively promoted by the medical community. Dr. Paul noted that findings from the provider survey lead to the conclusion that improved diffusion and implementation of HIV counseling and testing among obstetrician—gynecologists could be accomplished through peer education.

A survey of pregnant women also focused on factors associated with ZDV use. Among a convenience sample of largely young, African-American and Hispanic pregnant women, 57% said they would use ZDV, 41% were unsure, and only 2% indicated they would not use ZDV. Among the factors associated with intention to use ZDV to prevent HIV transmission are positive beliefs about ZDV; recommendation by a doctor or nurse; access to ZDV through the clinic or doctor; and sufficient information to make an informed decision. Evaluators found that conspiracy theories about ZDV were not associated with respondents' reported intention to take ZDV. Based on these findings, Dr. Paul and her colleagues concluded that pregnant women are willing to consider ZDV use if they are given adequate, accurate information.

Dr. Paul summarized as follows: (1) there has been a marked improvement in efforts to prevent perinatal HIV transmission in New Jersey; (2) physicians do offer counseling and testing; (3) pregnant women are willing to use ZDV; (4) surveillance and seroepidemiology studies have documented ZDV use; and (5) mandatory counseling and voluntary testing appear to be working in New Jersey.

Health Care Financing Administration

Theresa Rubin, a regional AIDS coordinator for the Health Care Financing Administration (HCFA) presented information on implementation and evaluation efforts undertaken by the agency.

Suggested Citation:"D Workshop II Summary." 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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Incorporation and Implementation of PHS Guidelines

Below are examples of HCFA efforts to incorporate and implement PHS guidelines:

  • In March 1994, less than a month after ACTG 076 results were published, HCFA sent a letter to its regional AIDS coordinators informating them of the study results and recommending improved outreach to pregnant women so that they can be evaluated and offered ZDV as early in the pregnancy as possible.
  • In a July 1994 "Medicaid Letter," HCFA conveyed its policy of providing an enhanced federal match of 90% for HIV testing and counseling claimed as a family planning service.
  • In March 1998, HCFA sent a notice to state Medicaid agencies and welfare offices informing these agencies about Ryan White CARE Act provisions relating to counseling and testing of pregnant women for HIV/AIDS. The notice urged Medicaid agencies to work closely with Ryan White grantees to assure optimal counseling and testing.
  • In May 1996, HCFA conducted a survey of regional AIDS coordinators that looked at: state laws addressing HIV counseling and testing of pregnant women; access to HIV testing, counseling and treatment in the state; the nature of HIV provisions in Medicaid managed care contracts; and state Medicaid agency collaboration with other state agencies, providers, and consumers in implementing PHS guidelines. One of the goals of this survey was to help raise awareness of the role of state Medicaid agencies in promoting the PHS guidelines and the need to work with others in the state toward this end.
  • Finally, HCFA also has undertaken a consumer information program (CIP), which started with a four-state pilot in January 1996. In its CIP, HCFA has focused on (1) developing informational materials to alert Medicaid-eligible HIV-infected women, pregnant women, and women of childbearing age to the benefits and implications of ZDV therapy; (2) assisting women in making an informed decision about ZDV therapy and (3) informing women that they may be eligible for Medicaid, which covers this treatment. As part of the campaign, HCFA has developed and disseminated consumer information materials in several languages, including posters, videos, and brochures. A preliminary evaluation of the campaign has been undertaken in the pilot states and results are being analyzed.

Patient Perspectives

Laquitta Bowers and Kay Armstrong provided preliminary findings from focus groups they are conducting as part of the AIDS Policy Center for Children, Youth and Families (APCCYF) study on HIV testing of pregnant women and newborns. Joseph Kelly provided an update on a review of state efforts. Rebecca Denison provided her perspective as an HIV-positive woman.

Suggested Citation:"D Workshop II Summary." 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.
×
AIDS Policy Center for Children, Youth and Families

Ms. Armstrong briefly reviewed the methodology used in APCCYF focus groups. Efforts were made to get geographic diversity, with representation from areas with high and moderately high incidence rates. Seven of the eight groups include women only; the other group includes men. Participants are of reproductive age and are sexually active. HIV-positive women, Hispanic women and those at high risk for drug and alcohol use are included and targeted for some of the groups. Ms. Armstrong highlighted the following preliminary findings, based on completion of five of the eight focus groups.

  • When asked about availability and accessibility of HIV counseling and testing, most participants felt that knowing their HIV status could help them improve their own health and that of their child and partner. There appear to be some gender differences in this response, which will be further explored.
  • There appears to be a complex set of factors that influence women's receipt of prenatal care, including current drug and alcohol use and past experience with health care providers. Participants are very concerned about their own health and that of their babies.
  • The way in which HIV testing is conducted is very important. Participants told ''horror stories" about receiving HIV-positive results over the phone or not being informed in advance that they were being tested. Only a few found out they were infected with HIV during pregnancy. Others discovered their HIV status while seeking other medical care. Participants emphasized the emotional impact of such negative experiences.
  • Among participants there is a great fear of HIV disclosure. They do not want to be labeled as HIV-infected. There is stigma and distrust as to how information might be used. Most participants did not trust the government in issues associated with HIV testing. Gender and partner issues were often discussed, with women participants worried about partner and family rejection, as well as partner violence.
State Activities Update

Joseph Kelly reported that in March 1998, as part of the APCCYF study, NASTAD sent a questionnaire to state health departments to update information on four areas of interest: (1) developments in new state legislative policy, regulation, and practice standards; (2) availability of trend/surveillance data on perinatal HIV transmission; (3) availability of follow-up evaluations/surveys on provider practices, HIV counseling and testing acceptance, and implementation of PHS guidelines; and (4) state contacts for further information.

Mr. Kelly also briefly highlighted new information on state legislation, noting that as of April 1, 1998, there was legislation pending in Delaware, Alabama,

Suggested Citation:"D Workshop II Summary." 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.
×

South Carolina, and New York that could change existing statutes on the issue of prenatal or newborn testing and counseling. In Indiana, legislation passed in late February that explicitly allows physicians to order confidential HIV testing of newborns if the mother has not been tested and refuses the test and if the physician believes that the test is medically necessary for the newborn. The state health department has been instructed to issue implementation guidance. One consequence of the legislative debate on this topic is a new awareness in Indiana that physicians are not providing HIV counseling to all pregnant women and are not offering tests. As a result, the health department is now pursuing an emergency rule that would try to ensure or compel physicians to counsel pregnant women. Mr. Kelly said it is likely that other states will try to implement similar newborn screening legislation.

Discussion

During discussion, it was noted that Louisiana may have a similar stipulation that allows physicians to test infants or children if they believe it is medically necessary. One participant noted that in New York, before newborn screening became mandatory, physicians testified that they did not need this kind of law because they had the legal right to test in any case.

Rebecca Denison, Respondent

Ms. Denison spoke from her perspective as an HIV-positive woman. She chose to become pregnant and is now the mother of two-year-old twins who are HIV-negative. Ms. Denison directs Women Organized to Respond to Life-threatening Diseases (WORLD), an organization started by and for HIV-positive women. In this capacity, she has worked closely with and assisted many HIV-positive women.

Ms. Denison started by noting that it is remarkable and heartening to hear meeting participants take seriously the notion of providing medical care to HIV-positive women who want to become pregnant or continue pregnancy. She observed that this is a moving tribute to those who have been willing to look beyond the conventional wisdom and understand what is in the hearts of people who want to become parents. She also reminded participants that beyond all the statistics, there are a lot of emotional issues tied into HIV/AIDS that will never be captured in numbers, but that profoundly affect people's lives.

Ms. Denison followed with a series of observations on a number of issues:

  • Expanding therapy options: Ms. Denison noted that it is important to recognize that in practices such as BAPAC in San Francisco, treatment options go well beyond the ACTG 076 protocols. For example, in the past two years, BAPAC has provided clinical care that incorporates the clinical evaluation of
Suggested Citation:"D Workshop II Summary." 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.
×
  • pregnant women for evidence of disease progression with the offering of appropriate combination therapy. In addition, as a pediatric ACTG site, BAPAC has been able to offer pregnant women and their infants access to perinatal/neonatal research trials that improve maternal health and further reduce perinatal transmission rates.
  • Mandatory versus universal testing: It is important to define terms. It is Ms. Denison's impression that most women will accept testing and most prefer being asked rather than being forced. She believes testing should still remain voluntary, even though this is an imperfect approach.
  • Standards of care needed: For many basic obstetric procedures, there is no standard of care established for HIV-infected women; for example, there are no standard recommendations or cost-benefit analyses on cesarean sections, amniocentesis, and fetal scalp monitoring for the HIV-positive mother.
  • Testing does not equal care: Ms. Denison cited several examples of known HIV-positive women receiving unacceptable care from poorly informed physicians.
  • ZDV issues: There are many issues around the use of ZDV, including women's fear of long-term side effects. Ms. Denison noted that of all the women she has talked to, none was told about the National Cancer Institute study findings on potential long-term risks to the children whose mothers took ZDV prenatally. She stressed that women need to be told about the study and then be told that the potential benefit outweighs the risk. It is also important to acknowledge that some infants are still becoming infected even though their mothers took ZDV during pregnancy.
  • Violence: Issues around domestic violence need to be taken seriously. Disclosure can lead to a life-or-death situation for some women with violent partners.
  • Prevention gaps/men's role: There are serious gaps in prevention, particularly with regard to the male role. Current efforts put the burden for prevention on the woman, which is unfair. There is also a need for support groups for heterosexual men who are HIV-positive or who have HIV-positive partners.
  • WIC: The WIC program can be a source of infant formula for some HIV-infected mothers; however, it does not pay the full cost of formula. A more significant problem is that WIC programs "push" breast-feeding, but do not adequately screen for or counsel regarding the HIV status of the mother. Ms. Denison noted that this approach is frightening and needs to be addressed.
  • Welfare reform and immigrants: With welfare reform, undocumented immigrants are cut off from publicly assisted prenatal care. Ms. Denison cited an example from California of an HIV-positive pregnant immigrant who was afraid that accessing care would lead to deportation.
  • Trust is essential: Ms. Dension stressed the importance of trust in the provider-patient relationship. Providers can be extremely judgmental in their attitudes toward HIV-positive women. Women need to feel comfortable going to
Suggested Citation:"D Workshop II Summary." 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.
×
  • their providers when they have problems with complex therapies for themselves or their babies. They need to be supported in the difficult process of caring for themselves and their children.
  • Funding: Finally, noting the importance of access to high quality, specialty care, Ms. Denison stressed the need for sustained and increased funding for comprehensive perinatal HIV/AIDS services such as those provided by BAPAC in San Francisco.

Reference

Byers Jr. RH, Caldwell MB, Davis S, Gwinn M, Lindegren ML. Projection of AIDS and HIV incidence among children born infected with HIV. Stat Med 17:169–181, 1998.

Workshop II Agenda

Washington, D.C.

April 1, 1998

8:30–8:45 a.m.

Welcome and introductions

8:45–10:15

Impact of the Public Health Service voluntary testing recommendations: Results from CDC's surveillance and enhanced surveillance systems

 

Pascale Wortley

 

Martha Rogers

 

Mary Lou Lindegren

 

R.J. Simonds

10:15–10:30

Break

10:30–11:30

Results from CDC's surveillance and enhanced surveillance systems, (continued)

11:30–12:30 p.m.

Impact of the Public Health Service voluntary testing recommendations: Results from HRSA data systems

 

Michael Kaiser

 

Karen Hench

 

Moses Pounds

 

Lori DeLorenzo

 

Amelia Birney

Suggested Citation:"D Workshop II Summary." 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.
×

12:30–1:30

Lunch

1:30–3:00

Provider practices

 

American Academy of Family Practitioners, Marshall Kubota

 

Association of Women's Health Obstetric, and Neonatal Nurses, Maureen Shannon

 

American College of Nurse Midwives, Jan Kriebs

 

Association of Maternal and Child Health Programs, Deborah Allen

 

American Association of Health Plans, Johanna Daily

 

National Committee for Quality Assurance, Joseph Thompson

 

The Miriam Hospital [prison health], Timothy Flanigan

 

California, Mori Taheripour

 

California, Gail Kennedy

3:00–3:15

Break

3:15–4:30

Impact of the PHS voluntary testing recommendations: Results from provider and patient surveys and state data systems

 

Massachusetts, Deborah Allen

 

North Carolina, Rachel Royce

 

New Jersey, Sindy Paul

 

Health Care Financing Administration, Theresa Rubin

4:30–5:30

Patient perspectives: AIDS Policy Center for Children, Youth and Families focus groups

 

APCCYF, Laquitta Bowers

 

APCCYF, Kay Armstrong

 

NASTAD, Joseph Kelly

 

Respondent: WORLD, Rebecca Denison

5:30

Adjourn

Suggested Citation:"D Workshop II Summary." 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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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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