A decade ago the AIDS Clinical Trial Group 076 demonstrated that antiretroviral therapy with AZT begun during the third trimester of pregnancy, continued through labor, and given to the newborn during the first weeks of life could markedly decrease the risk of HIV transmission from mother to newborn.⁶ By the mid-1990s, pregnant women in the United States were voluntarily screened for HIV and offered AZT prophylaxis. Other studies identified that birthing method,⁷ vigorous antiretroviral therapies in pregnant women (to keep maternal viral loads low), and bottle feeding in lieu of breast feeding, could further reduce HIV transmission from mother to child. These strategies resulted in a striking reduction in the number of cases of perinatal HIV infections and led to the Centers for Disease Control and Prevention’s (CDC’s) 2003 recommendation of the “opt-out” approach to HIV testing of pregnant women. The CDC’s goal is the universal testing of HIV in pregnancy, with the aim to institute as early as possible the strategies that had been found to reduce HIV transmission. The “opt-out” recommendations include making HIV education a part of routine prenatal care and the addition of HIV testing to the battery of routine prenatal laboratory tests, unless the woman “opts-out.” This approach has helped to identify the majority of pregnant HIV-infected women.⁸ The dramatic decline in the number of newly diagnosed pediatric AIDS cases in the United States reflects the success of these public health initiatives. Intrapartum transmission can now be less than 2% in women with good prenatal and intrapartum care.

As it became clear that HIV transmission could be interrupted from mother to infant, identification of HIV-infected pregnant women has become a priority. Access and acceptance of medical care may be compromised in the population at highest risk for HIV infection. Poor women and women of color are less likely than other women to receive optimal HIV care. Women whose risk for HIV includes substance abuse (either directly or in her sexual partner) are often less likely to receive good prenatal care or any prenatal care at all. A pregnant woman with a substance use disorder may be fearful of accessing medical care (assuming appropriate care is available) and entering a system that may criminalize her substance use during pregnancy. Some municipalities have interpreted legislation regarding the delivery of drugs to minors to include prenatal and perinatal transmission, indicting women for drug use and child endangerment on the basis of their substance use⁹ and in at least one case for the murder of her stillborn child.¹⁰ This political environment may deter high-risk women from seeking prenatal care. Adolescents and unregistered aliens similarly may be reticent to access medical care, fearing vulnerability to legal repercussions. Inadequate insurance, a lack of transportation or daycare, cultural issues, language, and education all may serve as additional barriers to the crucial early identification and treatment of the HIV-infected mother.

Once a pregnant woman has accessed prenatal care and has been identified for HIV screening (see Chapter 27 for testing guidelines in pregnant women), whether she agrees to the testing is largely a function of her ability to make an informed decision. Education is crucial. Among those offered HIV testing, a significant factor weighing toward compliance is the belief that such testing will benefit the infant.¹¹ Although the message has spread that treatment for HIV can lengthen survival for those infected, there are still many who are unaware of the potential for prevention of perinatal transmission.¹² Further, despite great educational efforts and popular awareness of HIV and AIDS early in the epidemic, recent years have found a growing complacency about the disease among Americans. With breakthroughs in treatment has come reduced concern about the severity of HIV.¹³

For those who are engaged in prenatal care and offered HIV testing, there may be rational deterrents to acceptance. Pregnancy is a time of increased vulnerability to domestic violence, and disclosure of HIV infection may increase that risk. Women may also fear rejection, discrimination, or abandonment by family, support networks, or even by their health care providers with the discovery of their HIV status. There is no universal agreement among state laws regarding the confidentiality of HIV-related information, nor regarding discrimination on the basis of HIV status.¹⁴ A woman may rightly be concerned that her HIV status, or her decisions with regard to testing and treatment, may be used against her.¹⁵

The long-term effect of retroviral therapy during pregnancy to prevent HIV transmission to her fetus can have an effect on the mother’s own personal long-term therapeutic needs. Even brief exposures to an antiretroviral may induce resistance, perhaps limiting a woman’s options for treatment in the future. Informed consent for HIV testing during pregnancy, therefore, must include not only the rationale for testing and the potential benefits to mother and child, but also the risks. Each woman must be educated about what rights she maintains with regard to the confidentiality of her test results. She must be assured that her testing decision will not adversely affect her right to prenatal care, and a plan to address the repercussions of a positive result must be in place.¹⁶ As any effective treatment and transmission prophylaxis depend on the cooperation and compliance of the mother, her informed decision-making at the start of this process increases the likelihood of a successful outcome.

According to the CDC, approximately 40% of the mothers of HIV-infected infants born in 2000 were not known to be HIV-positive before delivery.¹⁷ Women with no or limited prenatal care are more likely to be infected than women who have received care. Consideration should be given to the empiric treatment of women arriving in labor with no prenatal care, but can be better directed if a rapid test is available to help guide therapy.¹⁸ Though not as effective as therapy begun during gestation, beginning therapy at delivery does significantly decrease transmission rates.¹⁹ Infants can be treated until the mother’s HIV status can be clarified, and, if negative, the therapy is then discontinued.²⁰ The availability of rapid HIV testing makes last-minute prevention strategies possible, and some states have adopted policies of universal screening of newborns. Less intrusive than the mandatory screening of pregnant women, obligatory screening of newborns allows for the immediate treatment of those infants found antibody-positive. Beginning therapy after delivery, though not as effective as starting therapy during pregnancy, does reduce the risk of transmission and may reduce the rate of maternal–child transmission by 50%.²¹

At times the discovery of an HIV-infected infant is the first indication of infection in the mother. In the context of the availability of prenatal testing through the opt-out approach, when an HIV-infected infant is the first indication of disease in the mother, it is likely that her treatment will be confounded by the psychosocial obstacles that led to her unrecognized
serostatus before delivery. Sensitivity to such issues is perhaps even more critical when identification is delayed until delivery, and supportive intervention for the mother increases the likelihood of instituting appropriate preventive intervention and medical care for the neonate and mother.