Should HIV tests in pregnancy be voluntary or mandatory?
Debate rages, but you can steer women to test for their babies’ good
It’s good practice to screen a pregnant woman for HIV. Few health care providers would dispute that. But just watch the sparks fly when you ask whether testing ought to be the woman’s choice or a required part of prenatal care.
Feelings on both sides of the debate are especially hot since last December when the Chicago-based American Medical Association (AMA) reaffirmed its support of mandatory HIV testing for all pregnant women.
Its official position statement reads: The AMA supports the position that there should be mandatory HIV testing of all pregnant women and newborns with counseling and recommendations for appropriate treatment.
"The debate over mandatory vs. voluntary testing for HIV has been quite emotional, basically because it involves the rights of individuals to establish their own limits on tests and treatments," says AMA Trustee Ted Lewers, MD, who is on the consulting staff of Memorial Hospital in Easton, MD, and is medical director of the Easton and Chestertown, MD, Renal Treatment Centers.
Lewers reiterates the association’s support of the individual’s right to make informed health care decisions regarding testing and treatment in all health matters. HIV testing is an exception, however. The mother’s HIV status transcends her health, says the AMA, since HIV can be transmitted prenatally, during labor and delivery or breast-feeding.
"We now have scientific evidence that HIV can be prevented in the newborn," continues Lewers, "and our concern here is for the newborn."
Case for voluntary testing
On the opposite side of the debate, advocates of voluntary testing cite convincing evidence that women do submit to testing when they understand the advances in preventing HIV infection in newborns.
"As health care providers, we have the obligation to offer routine voluntary HIV testing and counseling and to urge our patients to have it early in the pregnancy just as we do rubella and syphilis tests," asserts Felicia Guest, MPH, director of training for the Southeast AIDS Training and Education Center of Atlanta’s Emory University School of Medicine.
"Women’s health care providers are in natural positions to offer this counseling, and most see it as a routine part of care," says Guest.
As patients, however, women still have the right to direct their care, Guest insists. Further, "as providers, we have a duty to do nothing punitive about their care if they refuse testing."
Opposing arguments rest on common ground
Ironically, both sides base their positions on the effectiveness of zidovudine (AZT) in protecting the unborn. Compelling results emerged from a 1994 study from the Rockville, MD-based National Institutes of Health of 409 pregnant HIV-positive women who had not yet developed AIDS: Only 8.3% of those who received AZT therapy transmitted HIV to their babies.1
Therapy consisted of AZT taken orally between the 14th and 34th weeks of pregnancy, then intravenously during labor and delivery. The babies received oral doses for six weeks after birth. Among the study participants who did not receive AZT, about 25.5% passed HIV to their babies.
The AMA says that such dramatic treatment results should be reason enough to require HIV tests for all pregnant women. Yet, a woman retains the right to refuse treatment, so mandatory testing can only protect the fetus if the mother takes the voluntary step of using AZT. Proponents of voluntary testing point out that mandatory testing has no value unless an HIV-positive patient consents to treatment. Of the women’s health center managers who spoke with Women’s Health Center Management, all support voluntary testing.
They’re quick to add that, when counseled about the safeguards available to their babies, few refuse testing.
"In my personal experience, most women who have been counseled and presented the right information about risk factors and treatment will want to know whether they have HIV so they can do the right thing for their babies," says Kelly Breedlove, RNC, BSN, director of obstetrics.
"Neither of us believe that the choice should be taken away from her, though," Breedlove says.
Joining the voluntary testing advocates is the Centers for Disease Control and Prevention (CDC) in Atlanta. (See guidelines inserted in this issue.) It cites a study at Grady Memorial Hospital in Atlanta, in which 96% of women chose HIV testing as part of their prenatal care after they received counseling.2
Since AIDS is an equal opportunity disease, all pregnant women should be counseled, Breedlove says.
Guest agrees. "Back in the 1980s," she says, "we tried to discern who was high risk and, therefore, a candidate for counseling. Now we know enough to offer it to all women."
A CDC report affirms the soundness of Guest’s position. Its study, Survey of Childbearing Women, reports that in 1993, about one in every 625 women giving birth was HIV positive. (For information on ordering this study, which is part of the HIV/AIDS Surveillance Report, see source box, at right.)
Indeed, racial and ethnic disparities exist, but the numbers also support the wry observation that it’s now an equal opportunity disease. African American and Hispanic women represent 75% of the reported AIDS cases among U.S. women, while other groups account for the remaining 25%, according to the CDC report.
Certainly, some groups have lower risks than others, but the figures suggest there is no such thing as a risk-free patient group.
Patient population shapes counseling content
The gaps and myths in patients’ understanding of their HIV risk factors depend largely on their backgrounds. Addressing those gaps and myths is the challenge care providers face in planning effective counseling.
Nobody knows this better than Lisa Lommel, RN, MS, MPH, FNP. As director of the Young Women’s Clinic at the University of California, San Francisco, most of her patients are pregnant teens.
For many teens, pregnancy is their first-time contact with a medical provider, Lommel points out.
"Some of them think they’re pregnant, so [they think] they’re not at risk," she says. "We emphasize they are at risk because of their sexuality. Often, we don’t have to do much convincing after that."
For those who are not ready to get tested, Lommel’s staff explain the statistics of how much protection they can give their babies by taking AZT if they test HIV positive. "After that, 99 out of 100 want to be tested. They want to do everything they can for their babies," Lommel says. "We still think the test should be their choice."
Test consent hinges on trust in confidentiality
Adult women often fear that health providers will disclose results to their spouses or employers. That’s why women’s health center managers must provide assurance that test results are confidential between the patient and her health provider, says Breedlove, adding, "Beyond that, she chooses whom to tell."
If patients remain skeptical about confidentiality, suggests Breedlove, offer them a referral to an anonymous testing site, such as the ones most public health departments sponsor.
Another group that particularly needs counseling to heighten awareness consists of those who consider themselves sheltered by their marital circumstances.
Trusting in a faithfully honored marriage bond is one way many women defend themselves against any inkling they might be at risk for HIV, says Guest. The sad reality, she notes, is that women often are exposed to risks unknowingly. A husband might be bisexual, a secret user of intravenous drugs, or engaged in an extramarital affair with an HIV-positive woman.
"All of us would like to self-assess and come up with the conclusion that we have zero risk," she says. "It’s our position as health providers to gently nudge people to reconsider."
For those women who won’t budge from their zero risk belief, Guest suggests leaving the door open to reconsideration. She advises extending an invitation such as, "If you ever have reason to doubt that you’re risk free, come here and talk to us. We’re prepared to help you with testing and a look at your options."
Lewers acknowledges that the AMA has some catching up to do in bringing physicians up-to-speed on the essentials of HIV counseling for pregnant women.
"While counseling is important," he says, "physicians are still learning how to do it, and [the AMA has] affirmed the need for them to do so."
But testing is only the beginning of the process, Lewers emphasizes. "If a patient tests positive, we must give her intensive counseling," he says. "If she’s negative, she should be counseled on methods of safe sex."
On the other hand, women’s health centers already have trained counselors "some of the best around," Guest says. "And they’re already doing venipuncture, so it’s hard to defend not doing on-site HIV counseling and testing for a pregnant woman."
If your center can’t offer on-site HIV counseling and testing, at least give the patient a referral, she advises.