Appendix E New York/New Jersey Site Visit Summary

Miriam Davis

Introduction

The Institute of Medicine (IOM) Committee on Perinatal Transmission of HIV visited five HIV prevention programs in the New York metropolitan area to obtain a firsthand account of the implementation of the Public Health Service (PHS) guidelines. The New York metropolitan area accounts for 38% of all perinatal AIDS cases in the United States (see Chapter 3). The programs were selected to illustrate a variety of approaches to prevention of perinatal HIV transmission. As publicly supported health care providers in urban settings, their pregnant patients were predominantly low-income women of African-American or Hispanic origin. Many were immigrants with poor command of the English language.

The programs that were visited reported dramatic success at preventing perinatal transmission of HIV. This summary highlights what program administrators judged to be the elements of their success, as well as the barriers they encountered. These publicly supported programs were required either by law (New Jersey) or by regulation (New York) to counsel all pregnant women.* This summary also delves into the more intractable problems posed by special populations, such as adolescents and immigrants. Finally, it presents experiences with implementation of the mandatory newborn testing legislation in New York State.

*  

New York State requires its state-regulated facilities, such as hospitals, clinics, and HMOs, but not its private practices, to counsel pregnant women about HIV and perinatal transmission. New Jersey requires all pregnant women to be counseled regardless of where their treatment is rendered.



The National Academies | 500 Fifth St. N.W. | Washington, D.C. 20001
Copyright © National Academy of Sciences. All rights reserved.
Terms of Use and Privacy Statement



Below are the first 10 and last 10 pages of uncorrected machine-read text (when available) of this chapter, followed by the top 30 algorithmically extracted key phrases from the chapter as a whole.
Intended to provide our own search engines and external engines with highly rich, chapter-representative searchable text on the opening pages of each chapter. Because it is UNCORRECTED material, please consider the following text as a useful but insufficient proxy for the authoritative book pages.

Do not use for reproduction, copying, pasting, or reading; exclusively for search engines.

OCR for page 236
--> Appendix E New York/New Jersey Site Visit Summary Miriam Davis Introduction The Institute of Medicine (IOM) Committee on Perinatal Transmission of HIV visited five HIV prevention programs in the New York metropolitan area to obtain a firsthand account of the implementation of the Public Health Service (PHS) guidelines. The New York metropolitan area accounts for 38% of all perinatal AIDS cases in the United States (see Chapter 3). The programs were selected to illustrate a variety of approaches to prevention of perinatal HIV transmission. As publicly supported health care providers in urban settings, their pregnant patients were predominantly low-income women of African-American or Hispanic origin. Many were immigrants with poor command of the English language. The programs that were visited reported dramatic success at preventing perinatal transmission of HIV. This summary highlights what program administrators judged to be the elements of their success, as well as the barriers they encountered. These publicly supported programs were required either by law (New Jersey) or by regulation (New York) to counsel all pregnant women.* This summary also delves into the more intractable problems posed by special populations, such as adolescents and immigrants. Finally, it presents experiences with implementation of the mandatory newborn testing legislation in New York State. *   New York State requires its state-regulated facilities, such as hospitals, clinics, and HMOs, but not its private practices, to counsel pregnant women about HIV and perinatal transmission. New Jersey requires all pregnant women to be counseled regardless of where their treatment is rendered.

OCR for page 236
--> Successes With Implementation Of Public Health Service Guidelines The programs attributed their success to the following elements: infrastructure and research funding; counseling emphasis on newborn and maternal health; health care financing; and routine incorporation of counseling into care. These elements are discussed further below. Infrastructure and Research Funding Programs repeatedly ascribed their success to the vigorous efforts of specially trained counseling staff (i.e., nurses, counselors, and social workers). These were the professionals responsible for the bulk of HIV counseling to encourage patients to accept testing and treatment. Counselors' work was often time-consuming because they were trained to approach patients, repeatedly if necessary, and not be deterred by the patient's initial refusal of an HIV test. It was not uncommon for some patients to delay for months the decision to accept testing or treatment (see patient profiles). The duration of a typical counseling session was reported to vary greatly, but consumed up to one hour for some high-risk women. A number of programs reported that the effectiveness of their efforts—in terms of patients' acceptance of testing and treatment—depended greatly upon the experience, training, and motivation of individual counselors. To be effective, prenatal counseling generally includes outreach, because the women who are hardest to reach are considered to be at highest risk for HIV. An illustration of how labor-intensive outreach and counseling can be was provided by the Francois Xavier Bagnoud Center at the University of Medicine and Dentistry of New Jersey. When a pregnant patient misses an appointment, the center's policy is to mount an elaborate outreach effort. First, staff call the patient, then send a letter, followed by a registered letter. If there is still no reply, they send an outreach worker to the patient's home who is instructed to wait until the patient comes home. Their last option is to track the mother through the child, if the child receives medical care at their center, or to pursue the mother through her insurer. A program administrator summed up the program as "going through extraordinary lengths to get these women in." Obtaining funds to hire counseling staff was a dominant concern of many programs. Federal research funds were deemed to be essential. Since programs had many of their patients actively enrolled in ongoing research, they were able to use counselors hired with funding for research, patient recruitment, and related purposes. At one program, for example, two of the four HIV counselors were hired with research funds. In light of the pivotal role played by counselors and other staff, program administrators were continually concerned that cutbacks in research or program funds would force them to scale back on their staff. One administrator remarked, "We have created a house of cards … as we lose

OCR for page 236
--> research components, we are not prepared financially. If we don't have research, we don't have resources." Counseling Emphasis on Newborn and Maternal Health Counselors reported finding pregnant women to be generally receptive to HIV testing, even more receptive than women who are not pregnant. In their experience, the most persuasive arguments for patient acceptance of testing and treatment emphasized health benefits, first to the newborn and then to the mother. One counselor said, "We tell them [the pregnant women] that it's right for their baby, and what's best for the baby is also best for you." The experience of the counselors was confirmed by the patients who were interviewed. Virtually all patients described their newborn's health, before their own, as their overarching reason for proceeding with testing and treatment (see patient profiles). They described their experience as mothers as the best time of their lives. A number of them chose to proceed with subsequent pregnancies despite being HIV-positive. Financing of Health Care Most programs reported state and federal programs to be indispensable to financing health care. For low-income pregnant women, Medicaid was the premier program that paid for medications and medical care. Medicaid financed laboratory tests, antiretroviral therapy and other medications, primary care, and hospitalizations, including labor and delivery. Medicaid is relatively easy for pregnant women to obtain, if they meet federal and state eligibility requirements. Most programs helped their patients to fill out applications. Low-income women who are awaiting Medicaid approval or who do not qualify for Medicaid are eligible for supplementary coverage through a program called ADAP (AIDS Drug Assistance Program) that receives funds under the federal Ryan White Comprehensive AIDS Resources Emergency (CARE) Act. This program covers, free of charge, HIV-positive patients' medications, primary care, and home care. Routine Incorporation of Counseling into Care Programs regarded another ingredient of their success to be the incorporation of counseling, testing, and treatment procedures into routine clinical practice. Well-established clinic policies and management support were seen as key. Programs understood that counseling, while laborand time-intensive, was pivotal to patient acceptance of testing and treatment. Some programs also had policies for repeat testing to ensure that patients did not seroconvert later in pregnancy. One program reported testing patients every three to four months if the patient was seen early in the prenatal period.

OCR for page 236
--> Barriers To Implementation Of PHS Guidelines The programs encountered the following barriers to implementation of the PHS guidelines: lack of prenatal care; lack of perceived risk; lack of rapid HIV test; family ostracism and domestic violence; some resistance to antiretroviral therapy; and resistance to HIV counseling by private physicians. These topics are discussed further below. Lack of Prenatal Care The lack of prenatal care was seen as one of the greatest barriers to the prevention of perinatal transmission of HIV. Without prenatal care, there simply is no opportunity to counsel, test, and treat women prior to labor and delivery. For instance, there were four HIV-positive newborns born at Bellevue Hospital Center in 1997, to mothers whose HIV status had not been known until the baby was identified. Three of the four were born to mothers who had not received prenatal care. The fourth was born to a mother who had declined to be tested prenatally. These four infants were part of a cohort of 20 HIV-positive newborns born that year, 16 of whom were born to mothers whose infection was detected during pregnancy. Programs estimated that about 10% to 15% of women giving birth did not receive prenatal care. Lack of access was not considered to be a major factor, because New York and New Jersey heavily subsidize prenatal care and outreach activities. One administrator described his program's outreach efforts as an "ongoing battle" to bring women into care. Most programs deemed injection drug use as the overriding explanation for women not accessing prenatal care. Injection drug users (IDUs) are considered to be the most difficult to reach group of pregnant women. They are thought to avoid prenatal care out of a mixture of apathy, shame over their drug use, and fear that their children may be removed from their custody. The lack of prenatal care is one of the key factors fueling the demand for a rapid HIV test for use in the labor and delivery setting. Bellevue Hospital Center, for example, has proposed a rapid testing program, with results available within hours (see below). The availability of a rapid test paves the way for intrapartum administration of zidovudine (ZDV) and continued treatment of the mother and infant. Lack of Perceived Risk Women who do not perceive themselves to be at risk are believed to account for a large share of those who refuse HIV testing during pregnancy. For instance, at New York's Bellevue Hospital Center, where prenatal HIV counseling is mandatory under the state's health regulations, about 20% of pregnant women refuse HIV testing.

OCR for page 236
--> The single greatest reason appears to be the lack of perceived risk. Many of the women are undocumented immigrants in what they perceive to be monogamous relationships. They view HIV as affecting only prostitutes and homosexuals, not themselves. Other women who do not view themselves at risk may be in denial about their own risky behavior. Lack of Rapid HIV Test An accurate, rapid test, with results available in hours, is considered to be an important HIV prevention tool. While a Food and Drug Administration (FDA) approved rapid test is commercially available, its rate of false positives is regarded as too high for widespread use. Conventional HIV testing, using enzyme-linked immunosorbent assays (ELISA) and confirmatory testing takes about one to two weeks for results. This is a crucial gap for adolescents and other groups of patients who commonly do not return to receive test results in the prenatal setting. It is seen as an even more crucial gap in the labor and delivery setting, which offers the last opportunity to interrupt HIV transmission via administration of intrapartum antiretroviral therapy and advice to avoid breast-feeding. Bellevue Hospital Center has applied for permission to launch a voluntary, rapid testing demonstration program for all women in labor and delivery who previously have not been tested for HIV. Since women who do not agree to prenatal testing, or who did not obtain prenatal care, are considered to be an "enriched" population with high HIV prevalence, the commercially available rapid test is less likely to be beset by false positives. When the rapid test is positive, antiretroviral therapy is to be offered beginning immediately in the intrapartum period, even though the rapid test must be confirmed by more definitive tests. If such tests later find the mother not to be infected, the protocol permits the interruption of therapy to mother and infant. Program administrators acknowledged that the labor and delivery setting is not an ideal time to obtain informed consent and hoped to counsel patients in as sensitive and thoughtful a manner as possible under the circumstances. Family Ostracism and Domestic Violence Many pregnant women fear taking an HIV test for the devastating impact of disclosure of positive results on their sexual partner or families. Many are single women often living at home with a parent(s). One HIV-positive mother admitted that if her family learned of her HIV status, she would be evicted (see patient profile). She would lose more than just shelter, since families often provide emotional, economic, and baby sitting support. Programs also spoke of patients' fears of domestic violence committed by sexual partners. Males who are ignorant of their own HIV status or are unwilling to be tested may blame the woman for having sex with someone else, however true or untrue, and may be prone to

OCR for page 236
--> violence from jealousy. Alternatively, if males are HIV-positive, they may become violent toward the woman they blame for infecting them—again, whether or not this is true. For women who are striving to conceal their HIV status, the fear of family desertion or domestic violence affects far more than their decision to be tested. It extends through the treatment period and affects their ability to comply with a demanding medication regimen, as discussed below. Resistance to Antiretroviral Therapy While programs described pregnant patients' overwhelming acceptance of antiretroviral therapy, this was not universally true. Some patients needed persistent encouragement by motivated counseling staff. These patients were often in such shock or denial after the diagnosis that it sometimes took them months to confront the need for and accept the medication. This was especially true of adolescents (see later section). Among the reasons given for patients' reluctance to accept, or comply with, antiretroviral therapy were concerns that it was a ''poison" and might have long-term effects on the child; the side effects; the demanding regimen of administration, especially for babies; and fear of disclosing their HIV status to family members by virtue of the frequent administration of medications for themselves or their newborn. Patients sometimes resorted to removing prescription labels. One patient, a former injection drug user, admitted to the IOM visitors her fears that the medication was addictive and actually caused AIDS, although she realized in retrospect that her fears were unjustified (see patient profiles). Managed Care The advent of managed care, in both public and private health insurance programs, was considered to be detrimental to the prevention of perinatal transmission of HIV. While program administrators acknowledged that managed care is receptive to prevention in general, the reality was more ominous because of competing priorities. Their major concern was with managed care's emphasis on shorter hospital stays. The labor and delivery process has become so compressed that program administrators complained of the difficulty of finding the appropriate time to counsel and test women who never received prenatal care. Even if the program had succeeded in motivating the mother to be tested, test results would not be back in sufficient time before patient discharge. Outreach efforts seemed futile because in many cases, patients were not reachable, having provided a false address. Another problem is encountered in the prenatal setting, where there are strong pressures to increase patient load by reducing the time spent with each patient. This is seen as leaving insufficient time or financial incentives for HIV counseling by physicians who receive flat fees per patient or are on salary. Many

OCR for page 236
--> program administrators expressed concerns that if managed care organizations established HIV counseling requirements, counseling would be done too hastily, or testing might be performed without consent. Resistance to HIV Counseling by Private Physicians Through their active outreach efforts and professional contacts, many of the programs were able to shed light on why HIV counseling does not seem to be occurring in private obstetrical practices. Program administrators confirmed the widespread failure on the part of private physicians to offer HIV counseling, even in New Jersey where counseling is mandatory for all patients. The most common explanation was that counseling is seen as too burdensome, particularly when most of their patients are not at risk. One program administrator relayed the experiences of a colleague in private practice who had counseled and tested about 600 pregnant patients without finding one to be HIV-positive. In the judgment of private physicians, HIV counseling consumes too much time in relation to the rarity of infection. While other administrators acknowledged pre-test counseling to be unnecessarily onerous, they thought it presented an important opportunity to educate the patient more generally about HIV rather than perinatal transmission per se. Physician discomfort was deemed to be another important factor deterring counseling in private offices. Not only did physicians seem to be uncomfortable discussing sexual practices with patients, but they also were uncomfortable with the possibility of implying—however erroneously—to a patient that she might be at risk. One administrator put it starkly, "Doctors don't want to offend private patients. In a competitive health care environment, they're afraid of losing them." Another administrator, however, observed that patients' reactions depend upon the manner in which testing is offered. He noted that patients would not be offended when the testing message is presented as a policy that applies uniformly to all patients. The singling out of at-risk patients was what offended patients, according to this view. Other reasons offered for private physicians' disinclination to counsel pregnant patients and encourage HIV testing were lack of financial incentives for counseling; lack of physician knowledge about complex HIV therapies and side effects; lack of referral networks; discomfort with counseling in general; and ignorance of the details of their state's counseling, testing, or consent laws and regulations. Special Populations This section examines the additional problems in preventing perinatal HIV transmission in adolescents and immigrants. Two of the programs visited by the IOM specialized in counseling and/or caring for these special populations. Other

OCR for page 236
--> special populations, touched upon throughout this summary, are the homeless and IDUs. Adolescents Adolescents are a critical, yet underrecognized, population for the prevention of perinatal HIV transmission. Although the nationwide seroprevalence of HIV infection among adolescents appears to be relatively low, urban areas are disproportionately affected: New York, for example, is estimated to have 20% of the nation's adolescents with AIDS. An estimated 25% of HIV-infected adults nationwide acquired their infection as adolescents (Rosenberg et al., 1994). Adolescents infected with HIV pose unique problems in identification, consent to testing, and entry into care. Traditional HIV "risk assessment" by health care providers misses a significant percentage of cases. There is also a lack of ready access to systems of care by the most disenfranchised adolescents who are most vulnerable to HIV. Consequently, many teenagers are unaware of their HIV infection, having neither been recommended for, nor received, testing. And an HIV-positive test does not ensure access to care. All of these problems may be compounded in pregnancy because of the added social stigma against adolescent pregnancy. A comprehensive treatment program for adolescents in the Bronx visited by the IOM, the Adolescent AIDS Program of Montefiore Medical Center, has been successful at reducing perinatal transmission of HIV in adolescents. At any given time about one-third of the adolescents in this referral program are pregnant, and virtually all accept antiretroviral therapy. Of 12 babies born to HIV-positive adolescents in 1997, 11 were HIV-negative. The one baby who did test positive was born to a mother in the late stages of AIDS who was non-compliant with the ZDV treatment. The program attributes its success to these features: labor-intensive outreach to adolescents and health care professionals to encourage testing with linkage to treatment; lack of financial barriers to testing and treatment through sliding fee scales and help with obtaining Medicaid and other public financing programs; accessibility through subsidized transportation to the program; a "one-stop shopping" approach enabling teenagers to receive counseling, testing, treatment, and medications for HIV at the same site—both during and after pregnancy (although obstetrical services are available through referral); and understanding the special needs and fears of adolescents. Among the barriers to HIV testing of pregnant adolescents are physicians' discomfort with discussing sexuality; physicians' lack of awareness that consent to testing (in New York and many other states) can be given solely by the adolescent and need not require the parent; and adolescents' fears of being reported, despite assurances of confidentiality. Among the barriers to acceptance of, and compliance with, treatment are the lack of linkages between testing and treatment programs; adolescents' perception of invincibility and difficulty in

OCR for page 236
--> understanding the abstract concepts of disease latency and probabilities of transmission; and injection drug use and homelessness. Apart from the multiplicity of problems created by homelessness, frequent changes of address or no home address jeopardizes their ability to receive Medicaid. Immigrants Immigrant women face a number of barriers in relation to prevention of perinatal HIV transmission. The most formidable are cultural, financial, and legal, including denial of residency or citizenship, as discussed further below. Insight into the experiences of Hispanic immigrants was offered to the IOM committee by a community organization serving Dominicans, the Community Association of Progressive Dominicans (ACDP). This organization counsels women and refers them to testing and treatment, among its other services to the community. With a population approaching 500,000, Dominicans represent the second largest Hispanic group in New York City. The vast majority (68%) are immigrants whose flight from the Dominican Republic was the result of deteriorating economic conditions over the past decade. In New York City, 46% of Dominicans live below the poverty rate, a proportion higher than that of any other ethnic group in New York City (Hernandez and Rivera-Batiz, 1997). The proportion of undocumented Dominicans is not fully known, but was estimated in 1994 by the U.S. Immigration and Naturalization Service at less than 1% (Hernandez and Rivera-Batiz, 1997). From the perspective of ACDP, however, which serves the neediest, the figure is much higher. For many Hispanic women, motherhood represents the pinnacle of their lives. It is a sacrosanct right of passage that imbues women with a sense of purpose, achievement, and bolsters their self-esteem and optimism about the future. Children are viewed as a "creation of God," according to one program administrator. With this cultural and religious mindset, the idea of prenatal testing for HIV is thought, in some cases, to verge on the preposterous. The problem is exacerbated early in pregnancy by women's reluctance to seek prenatal care. Prenatal care is seen as a lesser priority than housing and employment, which frequently are more problematic. Further, many immigrant women distrust the health care system. The foreignness of the language and the institutional atmosphere inspire fears of deportation and death. Equating hospitals with death is not uncommon among other minority groups as well (see patient profiles, and workshop testimony from the National Medical Association from Appendix C). Another obstacle is the women's perceived inability to pay for prenatal care. Many providers and programs offer free care or care at reduced cost, but federal law explicitly prohibits undocumented immigrants and certain categories of legal immigrants from receiving Medicaid. Instead of seeking prenatal

OCR for page 236
--> care, women often engage in self-care, through home remedies, or seek the aid of unlicensed doctors who are paid in cash. Those bold enough to seek prenatal care are commonly resistant to counseling and testing for HIV. Many Hispanic women are uncomfortable discussing sexual matters. Sometimes the subject is fraught with shame and guilt, especially for women who prostituted themselves to secure the funds to emigrate to the United States. For these women, discussion of sexuality is not only taboo, but it is also laden with fear about a husband or partner learning of their past. "It's even difficult to admit this to other women," observed a program administrator, who claimed that women who are not pregnant, yet seeking his organization's help, took an average of two and a half years to talk openly about their sexuality and the possibility of HIV testing. The program's policy is not to ask, but to wait for women to raise the subject on their own, a policy designed not to disenfranchise them. The consequences of disclosure of HIV test results to the husband or partner are dire: women are concerned about domestic violence, abandonment, and divorce. Divorce is feared because it may affect their immigration status and, consequently, their eligibility for Medicaid. Furthermore, HIV-infected individuals, by federal law, are excluded from entry into the United States (Immigration and Nationality Act, Section 212a). Denial of HIV risk abounds. Women do not see themselves at risk, either because they do not engage in risky behavior or because they deny the possibility of their partners being at risk. From their perspective, "If a man is clean, then he can't be positive," according to a program administrator. Denial extends to the HIV status of their offspring. Under the assumption that children are God's creation, they can only be seen as perfectly healthy. Therefore, testing for HIV is viewed as completely unnecessary. Yet the women who ultimately agree to HIV testing and treatment do so out of motivation to help their child—not themselves—according to program administrators. Paying for treatment is yet another deterrent to prevention efforts. Few of the women seen by the programs have private insurance or Medicaid. Being barred from Medicaid eligibility, the only avenue for undocumented women to pay for the exorbitant costs of care is through programs such as ADAP in New York (described earlier), designed for low-income, Medicaid-ineligible people infected with HIV. Newborns born to undocumented immigrants, however, are covered under Medicaid by virtue of being born in the United States, which confers U.S. citizenship. Impact Of New York State Mandatory Testing Legislation In New York, unlike New Jersey, newborn testing for HIV is mandatory under State law. The New York testing program has been in effect since February

OCR for page 236
--> 1997. Program administrators at New York sites shared with the IOM committee their experiences with the first year of the mandatory testing program. Programs inform pregnant patients during standard prenatal HIV counseling that their newborns will be tested for HIV. They nevertheless find their patients' retention to be erratic. At postpartum visits, many seem unaware of the law, either because they had forgotten or because they were not told at another site where they had received prenatal care. The information was devastating, especially for those women unaware of their HIV-positive status until newborn testing. Programs described women being so traumatized from the news that they were unable to cope. For some, it took months to agree to treatment for themselves, but they agreed to medication for their infants much sooner (see patient profiles). Because of the seeming lack of widespread knowledge of newborn testing, programs did not find the newborn testing law to deter women from receiving prenatal care or from delivering in a hospital. They noted, however, the difficulty of drawing this conclusion because they have such limited, if any, contact with these women. Their patients did express concerns about a breach of confidentiality to agencies outside the health care system and about being intimidated in taking their medication. These women were concerned that if they declined therapy for themselves or their infant, even out of legitimate concerns over long-term effects, they might be coerced through the courts. Patients' Experiences Patient 1: Tanya Tanya (a pseudonym) is an African-American women who describes herself as a former injection drug user (IDU) with four children. She learned of her HIV infection seven years ago when she was pregnant with her second child. Her first child had been removed from her custody as a consequence of her drug use. It took two to three months of active encouragement from a dedicated Bellevue Hospital nurse to convince her to be tested. She elected to be tested because of the nurse's assurances that she was not alone and could get help for herself and her baby. Tanya declared, "If it weren't for my nurse, I wouldn't have gotten tested." Upon learning she was HIV-positive, she was reluctant to accept medication. She was afraid of the medication because she linked—mistakenly she now realizes—her brother's death from AIDS to his medication, rather than to the disease. Having been a former IDU, she also was fearful of the medication being addictive. She ultimately accepted medication, again after vigorous counseling, and has since given birth to two children who are uninfected. She takes a cynical view of IDUs and sees drug abuse treatment as a necessary prerequisite for HIV testing and treatment of IDUs. When she was under the influence of drugs, she claims to

OCR for page 236
--> have been even more eager to get high as an escape from the possibility that she might be infected with HIV. In her judgment, testing of pregnant women should be voluntary for all women except those using drugs. "If you're on drugs," she said, "I think they should just test without asking.… When I was on drugs, I didn't want to find out." Patient 2: Rita Rita, an African-American mother of two girls, was diagnosed with HIV around the time she learned of her second pregnancy. Her health clinic asked her to take an HIV test immediately after they diagnosed the pregnancy. Rita agreed to the HIV test thinking that the results would be negative. "I was so surprised by the results that I spent one to two months in denial.… Once I adjusted, I was able to cope, take my medicine." With the support of her counselor at Bellevue, she started antiretroviral therapy at five months of pregnancy and encountered no side effects. Her decision to proceed with therapy was based on her concern for her child. Her newborn daughter is HIV-negative, as is her older, nine-year-old daughter. She felt compelled to conceal her HIV status from her family, with whom she lives, for fear of "being thrown out of the house." To disguise the true purpose of the medication for her newborn daughter, she told her family that it was for sickle cell disease. She did, however, notify the father and unsuccessfully urged him to get tested. Said Rita, "I told him to get the test, but he won't." Patient 3: Janet Janet is an African-American women who was told she was HIV-positive early in her first pregnancy. She was stunned by the news because she did not know she even had been tested. "I would have preferred them to ask me," she reflected, "because I would've said yes." Despite the receipt of antiretroviral therapy before, during, and after delivery, her one-year old child is HIV-positive. Janet became pregnant again soon after the birth of her first child. Her second child also received an aggressive regimen of antiretroviral therapy. The HIV status of the second child, who was only three weeks old at the time Janet spoke to the committee, is not yet known. The father of her children died of AIDS, as did her sister. When advising her friends to get tested for HIV, she said, "They get offended. They say, 'You're crazy, girl.'" Patient 4: Elina Elina is a 26-year-old Hispanic mother of two daughters. Her first child, born five years ago, is autistic. She found out that she and her second daughter were

OCR for page 236
--> HIV-positive through New York State's mandatory newborn testing program. She was called back to the hospital one month after the delivery. The news was incomprehensible to her, for she had no reason to think she was infected, having gone regularly for prenatal care. She had even taken a breast-feeding class. She said, "I was never counseled about HIV, never offered an HIV test, never told about the risk of HIV transmission, and never told my baby would be tested." After absorbing the news, she rushed to put her daughter on antiretroviral therapy. Her baby's health, not her own, was foremost on her mind. It took her months to come forward and get treated herself. She reflected, "Women won't come in for themselves, only for their child." She is anguished to think she might have prevented infection by avoiding breast-feeding. "My biggest concern is that my daughter could have been infected with HIV unnecessarily," said Elina. Patient 5: Maria Maria is a Hispanic immigrant and former obstetrician in her home country who sees herself as having been victimized twice: once by her American husband, who infected her with HIV, and a second time by the legal system that bars her not only from U.S. residency (owing to her HIV status), but also from receiving her husband's benefits as a veteran. She nursed her husband for two years before he died of AIDS, only to learn that he had infected her. Upon applying for his veteran's benefits, she discovered that six months before her marriage he had married another woman, whom he also infected. The marriage licenses had been issued in the same building and same office. The first marriage invalidated her claim for widow's benefits, leaving her virtually penniless. Because of her HIV status, she has faced discrimination in housing and employment. Her salvation has been New York's ADAP program which provides medications and medical care for HIV-positive people. As difficult as it has been in the United States, returning to her country would be far worse. Speaking through an interpreter, she said, "If I returned to my country it would be sure death." Her family has rejected her, and medications and services are unavailable to those in her country without the means to pay for them. She has devoted herself to educating other Latina women to prevent them from spreading infection. Despite fears of deportation, she is determined to speak out about the plight of undocumented immigrants. "We need help for the sake of human rights," Maria lamented. "We live in limbo.… We have nothing to be able to survive." Policy Options The following policy options were recommended by programs that were visited by the IOM committee.

OCR for page 236
--> Prenatal Period Shorten pre-test counseling for all patients, yet expand post-test counseling for those who test positive. Make counseling procedures routine for all patients. Ensure continued funding for prenatal HIV counseling staff (without reliance on grants). Make available an accurate rapid test for use with select patients deemed unlikely to return for results (e.g., adolescents, IDUs, patients with disordered lives, etc.). Support case finding of adolescent infected with HIV. Provide skills training to women to help them avoid high risk behaviors. Ensure availability of culturally and linguistically appropriate information and materials for immigrant women. Labor and Delivery Make an accurate rapid test available for at-risk women whose HIV status is unknown. Training of Private Physicians Disseminate educational materials for physicians and patients including an interactive CD-ROM (already developed for another purpose) and laminated card for breast pockets that indicates the key points to convey to patients. Seek help from medical malpractice insurers in educating physicians to make HIV counseling a routine part of care for prenatal patients. References Hernandez R, Rivera-Batiz F. Dominican New Yorkers: a socioeconomic profile, 1997. Dominican Research Monographs, The CUNY Dominican Studies Institute, The City College of New York, 1997. Rosenberg PS, Biggar RJ, Goedert JJ. Declining age at HIV infection in the United States. N Engl J Med 1994;167:1096–1099. Site Addresses And Participants The IOM committee members who visited the programs in New York and New Jersey were Susan Cu-Uvin, Ellen Mangione, Robert Fullilove, and Douglas Morgan. Others present from IOM were Michael Stoto, Study Director, Donna Almario, and Miriam Davis (consultant).

OCR for page 236
--> Community Association of Progressive Dominicans 2268 Amsterdam Ave. New York, NY 10033 Carmen Chavez, Director of HIV/AIDS Services Felix Rivera, Coordinator of HIV/AIDS Services Rosa Benitez, Health Education Mildred Zeno, Outreach Worker, Women's Project T. Givins, Director HIV Prevention Services, Iris House Inc. Carla Basinat-Smith, Director SSHP, Iris House Inc. Hilda N. Melore, Volunteer, Latina Roundtable on Health and Reproductive Rights Kimberly Hutchenson, Kirkland and Ellis Fellow, HIV Law Project Maria Luisa Mirando, Obstetra Peer Educator, Latino Commission on AIDS Seydi Vazquez, Clinical Coordinator, Columbia Presbyterian Medical Center Julio Dicent-Talpierre, Director, Alianza Dominicana The Francois Xavier-Bagnoud Center University of Medicine and Dentistry of New Jersey University Hospital 150 Bergen St. Newark, NJ 07103 Mary Boland, MSN, RN, FAAN, Director, Francois Xavier Bagnoud Center James Oleske, M.D., MPH, Director, Division of Pulmonary, Allergy, Immunology and Infectious Diseases Theodore Barrett, M.D., Director, University OB/GYN Associates Joseph Apuzzio, M.D., Director of Maternal-Fetal Medicine Tzong-Jer Wei, M.D., Acting Director, Division of Neonatology Paul Palumbo, M.D., Principal Investigator, CDC HIV Perinatal Cohort Study Deborah Storm, Ph.D., RN, Research Program Manager, Pediatric-Perinatal HIV Studies Judy Barros, MSN, CPNP FXB Center Ruth Fleshman, MSW, LCSW, Director of Social Work Services Lower New York Consortium for HIV-Affected Families Bellevue Hospital Center First Avenue and 27th Street New York, NY 10016 Keith Krasinski, M.D., Director

OCR for page 236
--> Model Comprehensive Health Care Program for Adolescents/ Adolescent AIDS Program 3514 Wayne Avenue Bronx, NY 10467 Donna Futterman, M.D., Director Neal D. Hoffman, M.D., Medical Director Alice Myerson, N.P., Primary Care Coordinator Mayris Webber, Ph.D., Montefiore Hospital, AIDS Research Program, Department of Epidemiology and Social Medicine Northern Manhattan Women and Children HIV Demonstration Project Columbia School of Public Health 600 West 168th St. and Broadway on 168th New York, NY 10032 Dr. Mahrukh Bamji, M.D., Metropolitan Hospital Cyra Borsy, Columbia School of Public Health Chris Cynn, HIV Law Project Danielle Greene, M.P.H., Columbia School of Public Health Cheryl Healton, Dr.P.H., Columbia School of Public Health Lynn Jackson, Metropolitan Hospital Mary Ellen Kelly, M.P.H., Metropolitan Hospital Stephanie Taylor, M.P.H., Columbia School of Public Health Nancy VanDevanter, Dr.P.H., Columbia School of Public Health