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--> Appendix I HIV Testing and Perinatal Transmission: Thoughts from an HIV-Positive Mother Rebecca Denison* Who Am I and Why Am I Here? I am the HIV-positive mother of 2-year-old HIV-negative twin girls. I don't have data, graphs, or slides to present. What I do have is my own experience of having HIV for 15 years, and seven years' experience listening to the experiences of other women with HIV/AIDS. In November 1995 I went public at a conference and in the WORLD newsletter about being a pregnant woman with HIV. Since then, I have spoken with over 100 HIV-positive women about HIV and pregnancy. Some were positive and newly pregnant or considering pregnancy. Others were pregnant and had just been diagnosed HIV-positive. I hope that what I share here can help us all focus on how we can improve the health and welfare of HIV-positive women and their babies. The Case for Universal Testing Every pregnant woman should be offered an HIV test. Whether or not a provider perceives a woman to belong to a "high-risk group," the fact that she is pregnant should be evidence enough that she has engaged in high-risk behavior. Even if she is monogamous and has never shared needles, there is no way to know the sexual history of her current or previous partners. * Ms. Denison is the founder and executive director of the Women Organized to Respond to Life-Threatening Diseases (WORLD). The following statement was presented on April 1, 1998 to the Committee on Perinatal Transmission of HIV, Institute of Medicine, National Academy of Sciences.
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--> In my experience, many providers are still thinking in terms of high-risk groups rather than behaviors. The data presented today bear this out, in the number of women who were educated and counseled by their doctors, yet chose not to test because they did not perceive themselves to be at risk. The majority of positive women I've talked to were told by a medical provider that they were not at risk, only to discover their infection when they became severely symptomatic. Most women accept their providers' assessment of risk. During the first seven years of my own infection, from 1983 to 1990, no medical provider ever brought up the subject of HIV or testing. Had I not gone to a test site (to support a friend who was afraid to get tested), I likely would not have been tested until I was pregnant. It frightens me to think that even then, I might have been discouraged from testing. Voluntary Versus Mandatory Testing Whenever I am around HIV-positive women and the issue of mandatory testing during pregnancy comes up, they usually say, "It should be mandatory." This should be explored further, however, because the average person does not distinguish between "universal" offering of ''voluntary" testing and "mandatory" testing. I recently sat in a group with three HIV-positive mothers. One was diagnosed HIV-positive when her ex-husband died of AIDS, one was diagnosed when she and her baby were simultaneously hospitalized with PCP [Pneumocystis carinii pneumonia], and the third was diagnosed during her pregnancy upon the death of her first child due to a "mysterious" illness. All said they believed testing should be mandatory. When I asked these women if they would have accepted testing if it had been offered during pregnancy, all three said "yes." When I ask if they'd rather be invited or told to test, they say they'd rather be invited. Positive women, whether pregnant or not, tell me they feel more comfortable when their doctor offers choices, listens, and responds to their questions and concerns, and respects their treatment choices. Likewise, those whose doctors tell them what to do without soliciting or acknowledging the patient's concerns, consistently tell me that they don't like going to the doctor and that they are afraid to tell (and don't tell) when they aren't following the treatment regimen prescribed. Testing is not an end in itself. For testing to save lives, it must lead to care. My concern with mandatory testing is that it may lead the minority who don't want to be tested to avoid prenatal care altogether, while undermining the doctor–patient relationship for the majority who do want to know their status. If the majority of women are going to agree to be tested, isn't it better that the woman and doctor work together as a team? In my opinion, universal offering of voluntary testing is the best way to identify infected mothers and at-risk babies while enhancing the woman's trust in the medical provider and system. It's interesting to note that many women with infected children have told me, "I'll always wonder if I'd been tested during pregnancy if my child would have AIDS now." Universally they say they would have taken AZT [azidothymidine;
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--> now called zidovudine (ZDV)] if offered. Occasionally, a mother will tell me, "I'm glad I didn't know, because I might have had an abortion and even though my child has AIDS, I'm glad he/she was born." Reasons Why Women Might Not Test Why would any women choose not to test? If we want to save lives, we need to understand the reasons women might not test, and seek ways to address these concerns. Some think they are not at risk. ("I've only ever been with my husband.") We need them to understand that by virtue of being pregnant, they have engaged in a high-risk behavior with someone whose history cannot be known with certainty. Some fear that the anxiety of waiting for results (or of testing positive) will drive them to use drugs or alcohol. I have met many women who gave up drugs or alcohol when they found out they were pregnant, but whose ability to abstain was not very stable. If such a woman begins to use drugs but also takes AZT, how will this affect the fetus? If the woman begins to use drugs and avoids prenatal care altogether, how will this affect the fetus? Some fear violence, rejection or abandonment by a partner or family members if their HIV status is discovered (which it likely would be if she started taking AZT five times a day). One woman in our community did in fact die when she fell from a fourth story window while trying to escape an abusive partner. Another told us, "My husband hasn't touched me at all or shared dishes with me in the two years since my baby and I were diagnosed." Another became destitute (her baby was born into poverty) when her partner abandoned her. Some fear that their babies will be taken away by the authorities because of their HIV status. Whether this fear is perceived or real, it needs to be addressed. One woman I know went through six pregnancies that all ended in miscarriage. She did not seek prenatal care for the first five, afraid that being homeless and HIV-positive would result in her child being taken away at birth. Some fear that they will be forced to take AZT against their will. While most women are grateful that a drug exists that can reduce transmission, there is also a lot of fear and mistrust of AZT in many communities that can't be dismissed. There have been rumors of a woman who was required to take AZT during pregnancy as a condition of her parole, and of others reported to Child Protective Services for refusing AZT. Testing Does Not Equal Care Identifying positive women during pregnancy will save lives only to the degree that identification leads to care for both mother and baby. Unfortunately, I know of many examples of gaps in connecting testing to care.
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--> For example, in the "East Bay," we have no obstetrician or perinatologist specialized in the care of HIV-positive pregnant women. This means that if a woman from Oakland, Richmond, Berkeley, or Fremont (all high-incidence cities) wants specialty care, she must travel; across the Bay Bridge to BAPAC [Bay Area Perinatal AIDS Center] at San Francisco General Hospital (an hour by public transportation). "Sandra" delivered her baby in a high-incidence city to a doctor and medical team who knew she was HIV-positive. They—not just the doctor, but—the entire team forgot to administer intravenous AZT. "Alicia" recently delivered a baby prematurely, in her seventh month of pregnancy. Her HIV status and pregnancy were known to medical providers, but she did not keep medical appointments. As of the date of delivery, she had never taken any antiretrovirals. "Meg" tested positive at five months of pregnancy in a rural town. Her doctor handed her the results of her blood work and said, "You're HIV-positive. I can't treat you. Here are your lab results (T-cell counts, etc.) but I can't tell you what they mean." When "Kim" asked her doctor if he knew how to manage an HIV pregnancy he said, "Oh, yes. Don't worry. We use gloves during the delivery with everyone." This same doctor, who knew she was HIV-positive, asked her three times, "Now, tell me again why you're not planning to breast-feed?'' "Natalie" had an undetectable viral load on a combination of two drugs when she found out she was pregnant. An obstetrician who had no experience with HIV told her to go off her drugs immediately because she was in her first trimester. Almost immediately her viral load went from undetectable to over 130,000 [copies/mL]. "Kelly" tested positive at age 22, during a planned pregnancy. Within an hour of her diagnosis she was told, "We can schedule the abortion today." It was only after she terminated her pregnancy that she learned that there would have been a good chance of the baby being born HIV-free. "Sheila" knew she was HIV-positive when she became pregnant by accident. Her doctor put her on AZT and d4T (a combination that is contraindicated in any HIV-positive person, pregnant or not). When her baby was four weeks old, her doctor administered the RNA PCR [polymerase chain reaction] test (which gives a number value) for the baby instead of the DNA PCR test (Which shows "positive" or "negative"). The viral load count of 100 that was reported by the lab may be a false positive, or it may not. Because of her doctor's lack of experience and knowledge, she has either gone through an unnecessary scare, or lost valuable time in which she could have had the option of intervening with a combination of antiviral drugs. "Andrea" asked me if she should go to BAPAC and pay out of pocket because she was concerned that her HMO [health maintenance organization] was
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--> not qualified to manage her pregnancy. I told her I thought specialty care was valuable, but that I could not assess for her whether she could afford it. She stayed with her HMO. At the delivery, there were problems, which she believes BAPAC could have handled. The baby died a few days after birth, having tested negative by DNA PCR. "Celeste" begged for a C-section [cesarean section] after her bag of waters had been ruptured for over eight hours, but her doctor refused. The baby was born after 22 hours' labor, with two broken bones. "Karen" called me two days after her diagnosis, in the fifth month of pregnancy. She already had her AZT but didn't know what a T-cell was, or the difference between HIV and AIDS. Given her overall lack of understanding of her diagnosis, it is hard to imagine that the decision to start AZT was an informed one. Specialty Care Does Save Lives, So Why Isn't It Adequately Funded? For me, all the political debate about testing pregnant women feels disingenuous. During the past couple of years as universal offering of voluntary testing has been implemented in California, BAPAC (the only specialty clinic providing care to HIV-positive pregnant women in Northern California) has undergone cut after cut after cut in their funding. It makes no sense. Here we have a program that we know works, that we know saves lives, that we know has reduced transmission rates to nearly zero, and yet they struggle for funding and staffing. If the real goal is saving lives, then regional centers such as BAPAC need to be adequately funded and staffed, to provide direct services to HIV-positive pregnant women, and to provide training and consultation to providers of women who choose to stay with their regular obstetrician or perinatologist. Where Is the Procedural Standard of Care? Finally we have guidelines on the use of antiretroviral therapy in pregnancy. Women have been clamoring for them (for this reason we published a "translation" in the April 1998 WORLD).* But the guidelines leave much unsaid. What about C-sections? Amniocentesis? Fetal scalp monitors? Rupturing membranes? I know that the research is confusing and at times contradictory, but this should not justify silence. Providers attempting to care for HIV-positive pregnant women who cannot afford the luxury of being specialists need guidance. * WORLD. HIV and pregnancy: The basics. WORLD Newsletter 84, April 1998.
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--> Where's the Research? There's a lot we don't know, that we need to know ASAP. Like how these drugs will affect our babies, in the long and short term. Like how choosing a strategy for reducing perinatal transmission will affect treatment choices for ourselves. One study presented at the National Women and AIDS Conference in May showed that Viracept reduced certain hormones found in birth control pills. Does this mean we may begin to see unplanned pregnancies in women taking Viracept who use the pill for contraception? What about the seven "unplanned" pregnancies reported in the new antiviral guidelines for women taking Delavirdine? We may wish everyone was using condoms, but if in reality some are using "the pill" and there are antivirals or other HIV drugs that reduce its effectiveness, we'd do better to find out sooner than later. Harm Reduction Models Are Needed for HIV-Positive People Who Want to Be Parents Medical providers consulted about HIV and pregnancy face an ethical dilemma. No one wants to feel responsible for encouraging a couple to take action that could result in a child being born HIV-infected. However, we must come to terms with the fact that many couples are determined to conceive a baby, and acknowledge that there are ways to help them reduce the risk of partners or infants from becoming infected. In my experience, many couples are desperate for pre-conception counseling. They have questions like: "How can I conceive with the least risk of infecting my partner (or of my partner infecting me, or of either becoming re-infected, possibly with a drug-resistant strain)?" Some couples time ovulation and have sex only once a month, others poke holes in the condom or have insertive sex only when the man is ready to ejaculate; however, many who lack information about any other way just have unsafe sex until the time the woman conceives. "Does my husband's viral load affect the risk of the baby getting HIV? (These women have rarely considered the risk that they might become infected with a protease inhibitor-resistant strain of HIV.) "If my viral load is high, what's the safest drug combination for me to be on at the time of conception and during the first trimester?" (Wouldn't it be better for women to plan this ahead of time rather than experiment with switching drugs during pregnancy?) "If my husband is HIV-positive but I am not, should I take AZT to prevent becoming infected when we have sex to conceive? Should he take medications to reduce his viral load to reduce the risk of infecting me?"
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--> Often providers are so uncomfortable about answering these questions that their patients shut down, stop asking questions, and proceed with conceiving without the benefit of potentially harm-reducing measures. Other Prevention Needs I support "universal" testing, because too many medical providers dismiss the risk of their patients actually testing positive. This is evident in the very common practice of telling women, "Don't worry about it. We'll call you if there's a problem." Well, I've spoken to the ones who were unexpected "problems." All too often they got a call from a shocked doctor's nurse at 5 p.m. on a Friday afternoon saying, "Your test is positive. You should see a specialist. I can't see you." Or a nurse calls to say, "The doctor wants to see you right away." Without saying anything more, the woman knows her diagnosis, and all too often it comes when she is at home caring for children, or at work surrounded by co-workers. Imagine trying to ''keep it together"—find a baby-sitter, drive a car, talk to your teenage children arriving home from school—under these circumstances. We want pregnant HIV-positive women to stop using drugs, but how many programs allow them to keep custody of their children? How many are AIDS-sensitive? I have heard of many in which staff require residents known to be positive to use their own dishes and utensils. How appealing is that to a woman who is HIV-positive, addicted, and scared? Preventing Perinatal Infection Should Begin by Preventing HIV in Women Most pregnant women are infected by men, yet there is very little social marketing that clearly tells men who have sex with women that condoms are their responsibility. Most prevention programs, posters, brochures, etc., tell women to "make" men use condoms. Let's be honest. Hasn't society kind of given up on men? If we hadn't, we'd tell them to wear condoms, instead of their partners. For men to take steps to protect women, they need to value their lives and the lives of their partners. Yet there are few programs designed for men who self-identify as heterosexual to get support to come to terms with their diagnosis (and issues like drug use history or sexual orientation), and to take responsibility for protecting their health and others. Women Are Interested in Protecting Their Babies When I first tested positive, I thought women who got pregnant knowing they had HIV were selfish and irresponsible. It took a long time to admit that I was jealous that they had the courage to do the one thing I wanted to do. Now that I've done it, I get calls from women from all over the country and literally around
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--> the world. A small minority are in denial, but most are deeply concerned about protecting the health of their babies. One couple saved up money to fly from the Midwest to consult with BAPAC. In another case, my agency provided Greyhound tickets to a woman and her husband who traveled over 12 hours by bus so that she could deliver at BAPAC. This woman had a substance abuse problem, no money, no place to stay, and social workers who regarded her as an unfit mother, but she was willing to do whatever it took to protect her baby from being born infected. Other Services Must Be Included in the Strategy to Reduce Perinatal Transmission Substance abuse is one of the main factors in women avoiding prenatal care. To enhance the likelihood of HIV-positive pregnant women seeking care, we need HIV-sensitive treatment programs that will take pregnant women. Breast-feeding is contraindicated in the United States for HIV-positive women. Yet when we go to WIC [Special Supplemental Nutrition Program for Women, Infants, and Children] to get formula (my formula bill for twins was $250 a month), we have to go through a nutrition class that pressures everyone to breast-feed without acknowledging that those with HIV shouldn't. My nutrition consultation was held in a room with an open door, and 10 other women sitting outside who could hear everything. I disclosed, but what would another woman do? WIC should include HIV education and awareness in their program. Also, WIC does not cover the full cost of formula. Perhaps in the case of poor HIV-positive women who do not have other ways of feeding their children, it should. Prenatal care is critical in reducing the risk of transmission. But it's difficult for a woman with no car or child care to trek across town (or across the state) with her kids for medical appointments. Oakland did not allocate Ryan White funds to respite care until after I moved to another city where family could help with child care; and recently mothers who have since received that service have been informed that the hours available have been cut. Doctors Should Be Supported to Provide Universal Testing I've been a trainer at several state-sponsored trainings on the new pregnancy testing legislation. Doctors don't come. They send nurses and secretaries. They're too busy. They don't think their patients are at risk. They mostly want to know how to comply with the law without losing a lot of time. Who can blame them? They've been mandated to offer testing, but don't have a mechanism to get paid for what it really takes to do good pre-test counseling and education. It makes no sense to me. It's like telling restaurants that sell BBQ ribs, "You have to serve a dinner salad first, because it's good for people's
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--> health, but you can't bill for it." There needs to be a mechanism for reimbursing the cost of HIV education and testing, with protections to avoid coercion. And there needs to be widespread dissemination of educational materials for providers and their patients. Toward this end, the flip chart and materials presented today from California are very helpful. Like It or Not, Everything Is Political Health care is political. This could be a paper in itself, so let me just say that threatening to turn HIV-documented women who seek health care in to the Immigration and Naturalization Service, or to deny them prenatal care, can't possibly be in the best interest of the baby that will be born a U.S. citizen (and thus our responsibility). Trust Is the Foundation on Which All Else Is Built or Collapses When we look at data, slides, and numbers, it is easy to lose track of factors that are difficult to measure. In my experience, trust between a patient and provider is the most important element. With it, all things are possible. Without it, the patient probably won't even get prenatal care, let alone engage in other health interventions. Whether a woman's fears (of being judged, of having her child taken away, of her confidentiality being violated) are true or false is irrelevant; until proven otherwise, her fears are 100 percent real to her. In many communities there is a great distrust of AZT. I have heard of providers who respond to a patient's fear by saying, "OK, then, we'll give you ZDV or retrovir instead." These are, of course, all the same drug. When the patients discover what's happened, trust is undermined. I went eagerly to every prenatal appointment, despite tremendous inconvenience and having to travel from another city, because of my trust in my providers, and because of the respect I felt from them. Rather than treat me as a potential vector or threat to my unborn child, they treated me as a woman with the power to protect my child. In contrast, when "Angela" became pregnant, she told me she was afraid to seek prenatal care because the doctor in the clinic who cares for her HIV-infected child had told her she'd better not get pregnant again. He meant well, but her fear of being judged or criticized by him led to a dangerous situation for her unborn child. When I couldn't get any babies to take Septra, despite all kinds of tricks including hiding it in formula during 2 a.m. feedings, I told my providers. At BAPAC they were disappointed, but continued to work with me, and talked to me about symptoms that should prompt an immediate call. In contrast, my regular pediatrician treated me like a bad person, and refused to answer my questions or discuss my concerns. When I eventually got my children's files (it took over two
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--> months and $20 to get about six pages), all it said under family history was, "Mother is HIV-positive" in big bold letters. When my child got sick, I was afraid to take her in for care. Now that's a dangerous situation. I was honest about the fact that I gave up trying to give my babies Septra. That's just the kind of person I am. Well, a lot of women called me to say that they had given up too, but that they had never shared this information with their pediatricians. I encouraged them to discuss it with their providers, but most are afraid. What will happen to the babies that are positive whose mothers are afraid to have a frank discussion about compliance with their pediatricians? Missing a couple of doses of Septra is not a disaster, but with so few choices available to children with AIDS, missing a few doses of a triple drug combination that includes a protease inhibitor could wipe out their treatment options for life. Pregnancy is an emotional time in a woman's life, a time of reflection, of learning to trust one's own body, and of having to trust one's inner voice. Regardless of HIV status, the choice to become pregnant is rarely a rational one. (The planet is not underpopulated. Few people suffer from too much free time or money. Morning sickness is not pleasant. Neither are diapers.) Women who choose to become pregnant or continue a pregnancy are usually acting mostly on their emotions, and they will pursue prenatal care and treatment decisions in the same way. I knew all the great facts about AZT's ability to reduce perinatal transmission, but I was afraid to take it until another woman with HIV told me how she did a blessing ritual with hers first. Hokey as it sounds, that worked for me. If I had been forced to take AZT before I was ready, I likely would have gone running away from prenatal care rather than feel drawn to it. How many of you like to be told what to do? How many respond to orders with an urge to do just the opposite? I could be wrong, but I'm inclined to think that we should offer HIV testing to every woman who is pregnant. I also think that rather than forcing her to do it, we should focus our efforts and money on addressing the issues that will motivate women to want to get tested and get prenatal care. Then, hopefully, she'll be drawn to the benefits of trustworthy and qualified prenatal care, and the rewards that a respectful partnership between provider and patient can offer. A poster I saw by the Pediatric AIDS Foundation provides a good example of this. It shows all kinds of beautiful babies and the text reads: "All healthy. All HIV free. It's amazing what a mother can do." It's positive, encouraging, respectful, and inspiring. When approached in this way, what woman wouldn't want to test? Planned HIV Pregnancies May Increase Along with Increased Life Expectancies In 1994 I enrolled in a study at the NIH [National Institutes of Health]. When I was told that my PCR test came back "undetectable" a whole world opened up for me. For years I had not dared to imagine a future beyond 6–12 months. When
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--> this test result led me to dream of actually having a future, the fact that I wanted to be a mother more than anything else in the world became undeniable. In 1994, "undetectable" viral load tests were practically unheard of, but in 1998 they are very common. Women call me on a weekly basis who are having this same experience. For many, if there's a future awaiting them, they want a baby to be part of it. Conclusion My pregnancy and prenatal care lasted 9 months. I threw up for 5 months, and spent the other 4 on bed rest. I had a scare with premature labor that had to be stopped with medicines that made me feel crazy. Big deal. It was only nine months. I'll be a mother—rocking, dressing, teaching, feeding, nurturing, disciplining, and loving my children—for the rest of my life. There are lots of baby-sitters, foster parents, grandparents, and adoptive families out there, but nobody will ever love my children the way I do. And while my children deeply love and trust many adults, none of them can take my place. So please, let's remember as we all work so hard to protect babies from being born with HIV, to work equally hard for the health of their mothers, so we can be there for them, care for them, and see them grow up. Thank you for letting me share my thoughts with you today. I realize I didn't always focus directly on the issue of testing, but I felt compelled to share some of the "real-life" stories that can tell us a lot about how to save lives. Make the best decision you can about testing. But remember, when that decision is made there's a lot more that needs to be done to ensure that those who test positive have access to the kind of care that will ensure the well-being of women and their children. Thank you.
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