By Sarah Ellerman
Illustration by Malcolm Garris/PhotoDisc
January 14, 1998

It seems a straightforward proposition: Pregnant women should be tested for HIV. But many expectant mothers are never tested, even though roughly 80 percent of AIDS cases among women strike those of childbearing age, according to the national Centers for Disease Control and Prevention (CDC). Voices are starting to clamor for mandatory nationwide testing, especially in light of effective new perinatal treatments, but the issue remains controversial.

Learning HIV status early in a pregnancy can greatly reduce the likelihood an infant will be infected, but not every expectant mother wants to be tested. In Texas, prenatal care providers are required by law to offer counseling and testing, but this isn’t the case in every state. Bringing up the topic is routine and pregnancy provides a natural "in" to start the conversation, nurses say. "To get pregnant, you had to have unsafe sex. That opens the door to discuss what that exchange of bodily fluids could also mean," said Connie Highsmith, RN, president of the Association of Nurses in AIDS Care (ANAC).

Discussing testing is also a natural part of conversations involving the infant’s well-being, said Melinda Mercer Ray, MSN, RN, director of health policy for the Association of Women’s Health, Obstetric, and Neonatal Nurses (AWHONN).

At-risk population

One-quarter of the nation’s AIDS cases are women, according to the CDC. The infection rate is rising in women, Highsmith said. Women of color are disproportionately affected, she added; AIDS is the leading killer of African American women even at a time when infection rates in the gay male community have slowed.

Once a woman is infected, her fetus is at risk. But even though the majority of pediatric AIDS cases come from perinatal transmission, the virus is only transmitted in roughly one-quarter of untreated pregnancies, said Patricia J. Kelly, PhD, RN, assistant professor at the University of Texas Health Science Center at San Antonio. Mothers can further improve the odds of a baby free of HIV by maintaining overall health, participating in drug therapy, and abstaining from breast-feeding, said Maureen Shannon, NP, RN, a nurse-midwife at the Bay Area Perinatal AIDS Center in San Francisco.

Because knowledge is power in preventing perinatal transmission of HIV, healthcare providers may feel exasperated if a woman forgoes testing, experts say. But what seems a logical choice to nurses may raise issues for patients concerned with privacy, Highsmith said. Others can’t conceive of having HIV, due to societal perceptions of what "type" of person becomes infected, said Priscilla Abercrombie, PhD, NP, RN, of the UCSF School of Nursing department of family healthcare. "There’s a lot of shame wrapped up in it," Abercrombie said.

New therapies

It is the results of one clinical trial that have excited providers and fueled increased support for mandatory testing, Kelly said. By administering zidovudine (AZT) to pregnant women and neonates three times—at the 28th week of pregnancy, intravenously to the mother during delivery, and to the infant—the HIV transmission rate was lowered from 25 percent to an astonishing 8 percent. But AZT alone, while proven effective in this application, isn’t the current standard of care for HIV treatment. Studies of the more recent combination regimens are still in the early phases of trials, Shannon said, while researchers attempt to answer questions about dosages and long-term effects. In the meantime, Shannon said, providers can consult the U.S. Public Health Service guidelines, which advise providers to keep maternal health in mind and not focus solely on issues of transmission.

Testing debate

Success with AZT has been used as an argument in favor of mandatory testing, a highly controversial topic that has become more incendiary since last year, when New York became the only state to un-blind test results of all newborns, Shannon said.

This practice effectively tests mothers without consent, say privacy advocates. The ANAC, AWHONN, and the American College of Nurse-Midwives all support voluntary testing only. A major concern is that women might avoid prenatal care if testing were mandated, said AWHONN’s Mercer Ray. Most healthcare providers have mixed feelings on the issue.

Testing as a condition of receiving funds is likely to arise in 2000 because the Ryan White CARE Amendments of 1996 require testing of pregnant women or infants in states where other measures to control HIV have not been met. AWHONN is working to nullify this clause.

Ultimately, Shannon said, providers must view HIV as a primary care issue. Although the media has focused on testing during pregnancy, anyone who is sexually active or engaging in risky behaviors should be tested, particularly if considering pregnancy, she said. The focus should be on risk reduction and early intervention, Shannon said. Experts say providers must become educated on speaking with women who have just been diagnosed. A shocked or upset client could flee and thus delay critical treatment, and providers must inform patients that HIV is a chronic condition with treatment options, she said.