Pregnancy Counseling in HIV
Abstract & Commentary
By Carol A. Kemper, MD, Clinical Associate Professor of Medicine, Stanford University, Division of Infectious Diseases, Santa Clara Valley Medical Center, is Associate Editor for Infectious Disease Alert.
Dr. Kemper reports no financial relationships relevant to this field of study.
Source: Bridge DA, et al. Abstract, IAC, Mexico City, August 3-8, 2008.
Investigators at a number of university-affiliated HIV clinics around the United States conducted the Living Positively Survey to explore the experiences and attitudes of HIV+ woman toward health care, treatment, pregnancy, and family issues. The telephone-based survey enrolled a total of 700 women, with a mean age of 42.5 years. The women had been HIV+ for a mean of 10.6 years, and had been receiving antiretroviral therapy for an average of 8.1 years, indicating this was a fairly HIV negative experienced and older population of women. Nearly three-fourths were ethnic minorities, including 43% African-Americans. The patients resided all over the United States.
In all, 39% of the woman had children. Since their HIV diagnosis, 22% reported they had been pregnant or were currently pregnant. Of these, 57% did not recall discussing pregnancy and HIV treatment options with their physician, and 41% did not recall discussing how pregnancy might change their HIV therapy. Twenty-nine percent had not discussed side effects or toxicities of medications during pregnancy. About 42% indicated they knew little or nothing about HIV treatment options when they became pregnant.
In addition, 31% of those interviewed indicated they were contemplating pregnancy in the future. Including women who were currently pregnant, or contemplating pregnancy in the future, nearly half did not recall their physician asking if they were interested in having a child now or in the future. Most indicated they would feel comfortable discussing these issues with their physician. The responses were similar across all races/ethnicities.
While I took issue with some of the rhetoric accompanying this report, it was not surprising that half of the woman interviewed in this telephone survey did not recall discussing pregnancy concerns with their physician. Aside from the fact that people do not always remember instructions or conversations with their physician, other published reports indicate that HIV health care providers discuss safer sex and prevention behaviors with about half of their patients. During 2000-2001, we participated in a CDC-sponsored program investigating safer sex counseling practices in a cross-sectional survey of 839 men and woman attending six California HIV clinics.1 Of these, men and women, 71% reported that a health care provider had at least once discussed safer sex with them within the previous three months (range across clinics varied from 52%-94%), and 50% recalled discussing HIV disclosure with a health care provider (range across clinics, 31%-78%). Physicians were more likely than other providers in the clinic to provide prevention messages to their patients. Clinics that employed a health educator or a risk counselor were more likely to provide safer sex messages than those without. Woman were significantly less likely to receive safer sex messages than men having sex with men (MSM).
Discussions of pregnancy should occur during initial conversations about HIV treatment options, especially in younger female patients of child-bearing age. The teratogenicity of efavirenz, otherwise a popular choice for newly diagnosed persons, is well recognized among HIV health care providers, and at least in our clinic is not administered to woman of child bearing age, especially not without some conversation about pregnancy risk. Pregnancy concerns would also seem to naturally flow from discussions regarding safer sex and prevention. Since about half of the women in this survey were over the age of 42 and 39% already had children, a physician might reasonably assume that pregnancy concerns were not paramount for many of these patients. Our HIV clinic employs a social worker, health educator, and a risk counselor, who make a point of discussing sexual behavior and safe sex at intake to the clinic, and at least annually. Evidence suggests that safe sex messages or interventions, even frequently repeated, do not significantly alter behavior (except perhaps in those who are frequently sexually active with multiple partners).2
In our experience, roughly half of the pregnant women in our clinic were found to be HIV+ during prenatal screening. The other half, who know they are HIV+ roughly split evenly into those who intentionally get pregnant and those whose pregnancies are unplanned. There are many reasons why an HIV+ woman may not receive pregnancy counseling before becoming pregnant, chief among them that many providers may not know what to say. While patients are living longer and the risk of HIV transmission during pregnancy is significantly improved with newer and better therapies, the risk of transmission is not negligible, especially in woman with varying compliance and underlying resistance. While I have been increasingly supportive of pregnancy plans in my female patients who have proven themselves compliant, are consistent with their visits, and have improved CD4 counts and undetectable viral loads, this is not always the case. One would imagine that a pregnant woman, in the interest of her child's health, would be more compelled to be adherent, but two recent patients of mine were not (one simply refused to take her medications). And what about those with more advanced disease, with CD4 counts less than 200 cells/mm3; pregnancy simply seems like a bad idea, or at best should be deferred until the patient is in better health. And yet, I've had women ignore this advice and return pregnant.
Secondly, there remain valid concerns about the effects of pregnancy on the health of the HIV+ mother, as well as the long-term risk of HIV medications on the child, which have not been well characterized, and longer term data is simply not available. HIV+ mothers are at increased risk for complications during pregnancy, as well as premature delivery, especially those who receive protease inhibitors.3 Insulin resistance, lactic acidosis, and mitochondrial toxicity occur with increased frequency in HIV+ pregnant women, and concerns have been raised about the effects of antiretrovirals on neonatal bone density. Data on the safety and long-term effects of antiretroviral therapy in pregnant women and their infants is needed but only sporadically captured. Physicians can participate in the HIV Pregnancy Registry, a non-governmental, pharmaceutically-sponsored national database.4
Thirdly, many female HIV+ patients have HIV negative partners, making pregnancy essentially an unsafe sex activity. Only recently have some centers been providing artificial insemination for these woman. (Although I recently had a young woman who figured it out herself, using a 3 cc syringe.)
Finally, and at the risk of sounding like an old curmudgeon — social concerns must factor into conversations about pregnancy in these woman, some of whom are undocmented, unmarried, with limited resources, and with little family support, and all of whom are already grappling with their own diagnosis and health, and sometimes the health of their partner or another child with HIV. Some may also have serious alcohol and drug problems, or psychiatric issues that do not preclude them from getting pregnant, but may preclude them from being a good pregnant patient or a capable parent.
Finally, not all women chose pregnancy for "good" reasons; one newly diagnosed unmarried and undocumented 20-year-old woman recently told me she had to get pregnant because her parents (in Mexico) were becoming suspicious there was something wrong with her; others have admitted they wanted their children to be US citizens.
Case in point: a 40-year-old HIV+ patient of mine, whom I have cared for about 10 years. She is undocumented, from Mexico, has an errant partner who provides no support (we've never met him, he's never been HIV tested, and it is not even clear that he knows about her status), and she is completely dependent on her sister. She was first diagnosed with HIV during prenatal screening and, despite reservations, opted for a therapeutic abortion at the time. She has repeatedly refused HIV therapy, and her CD4 count gradually drifted down into the 100s. Just over three years ago, she indicated her desire for a child. Those wishes were supported with the proviso that she takes antiretrovirals during her pregnancy. Her use of medications during pregnancy was sporadic, with frequent elevations in HIV viral load, and she developed resistance to lopinavir. Fortunately, she delivered a beautiful HIV negative boy, who is now 3-years-old (and the joy of his mother). Following delivery, she vanished for about a year and stopped her HIV medications. Like many HIV+ mothers who neglect their own care, she was good about bringing her child for his appointments.
A year ago, I began receiving a series of pregnancy test results for this patient from urgent care and other affiliated clinics. Shortly thereafter, she appeared in the clinic three months pregnant and on no HIV meds. Suspecting I would not be supportive, she actually requested another provider in the clinic. She was reluctant to take medications, and failed to fill her prescriptions for many weeks. Prenatal studies suggested she may be carrying a Downs Syndrome child. Unable to have an amniocentesis, and many tears later, she elected to proceed with the pregnancy (I have to add, against the strong opposition of her sister and my own advice). Her use of medications was again sporadic; by all estimates she took about half of her HIV medications, despite repeated interventions by the HIV pharmacy specialist, pill boxes, and visits by a health educator. Her HIV viral load was repeatedly detectable, at least up until one month before her delivery, when under duress her compliance improved. She delivered another healthy HIV negative baby boy. Three months later, she is exhausted, her sister is ready to kick her out, her CD4 is only 240, and she has once again stopped her medications. She was so overwhelmed at her last visit, she asked if I wanted to take one of the children.
In short, I am not sure how to counsel some of these women about pregnancy, although the issue is addressed with all of my female patients. And, I am empathetic, perhaps too empathetic; I don't know how some of these women make it through the week. And I realize my counsel and concerns for their health (or the health and welfare of their unborn child) may run up against strong personal desires, family expectations, and cultural norms different from my own experience. But I do believe that, while pregnancy is the exclusive privilege of the female sex, it is not a requisite.
- Marks G, et al. Are HIV care providers talking with patients about safer sex and disclosure? A multi-clinic assessment. AIDS. 2002;16:1953-1957.
- Richardson JL, et al. Effect of brief safer-sex counseling by medical providers to HIV-1 seropositive patients: a multi-clinic assessment. AIDS. 2004;18:1179-1186.
- Kourtis AP, et al. Use of antiretroviral therapy in pregnant HIV-infected women and the risk of premature delivery: a meta-analysis. AIDS. 2007;21:607-615.
- The antiretroviral pregnancy registry. Interim Report. 1989-2008;19.