Moms, Kids and AIDS

By Christine Gorman

It is a simple test in which a dollop of blood is drawn from a baby's tiny heel and taken to a lab for analysis. The result could provide reassurance -- or a death sentence. In most states all newborns are screened to see if they have antibodies to HIV, the virus that causes aids. In about 7,000 U.S. cases a year, the test is positive, which merely indicates that antibodies produced in the mother's blood have moved to the child during pregnancy. But the implications are grim: the mother is infected with the virus for sure, and there is a 25% chance that the child picked up not just antibodies but the virus itself while in the womb or during delivery.

Incredibly, this momentous news is not ordinarily passed along to the mother. In fact, the testing is generally done on a blind basis; the blood samples are identified by number, and not even the hospital staff knows which babies tested positive. Unless the mother requests HIV screening ahead of time and signals her consent, she won't be told the results of the test. She may go home from the hospital not knowing that aids stalks her and her child.

How can this be? The secrecy surrounding HIV screening in newborns grew out of a reasonable effort to balance the need for information about the extent of the epidemic with the need to protect the privacy of patients, who may be discriminated against by employers and insurance companies. But serious questions are being raised about HIV testing. Does protecting the privacy of mothers endanger the rights of babies, who cannot make decisions for themselves? Should test results be disclosed so that all HIV-infected babies can be given immediate treatment? Then there is a separate matter: Should women be tested for HIV early in pregnancy, since it is now sometimes possible to use the drug AZT to block the transmission of the virus from mother to child?

These questions have no simple answers, and most people are still unfamiliar with the issues involved. But a few state legislatures, led by lawmakers in New York, are starting to consider bills to resolve some of the controversies swirling around HIV testing. The outcome of the debates will be of vital importance to the youngest generation of aids sufferers.

After the HIV test became available in 1985, the U.S. Centers for Disease Control and Prevention began planning screening programs. Federal officials needed to know how fast the virus was spreading, and they were particularly concerned about the vulnerability of childbearing women. But aids activists were fiercely opposed to mandatory screening, since identification of HIV- positive mothers could mark them for discrimination. Since there was no cure or even a good treatment for aids, knowing the results of the test would not help the mother and child much anyway. The cdc ultimately decided to set up blind screening, and 44 states eventually agreed to be part of the program.

The strategy made sense at first, but advances in treatment have changed the ethical equation. While a cure is still elusive, doctors have learned how to use antibiotics and other drugs to ward off some of the most devastating complications of aids. For babies, timing is the key to effective treatment. They have such immature immune systems that HIV makes them much sicker, much more quickly than it does adults. So doctors must start treatment as soon after birth as possible.

Recognizing the need to protect babies, many hospitals have set up counseling programs in which pregnant women are advised about the benefits of knowing their own as well as their child's HIV status. But it's not always easy to convince them. In New York, for example, mothers must sign a lengthy consent form warning, among other things, that society may treat them unfairly if they are identified as being infected with HIV. That's one reason why so many women refuse to volunteer for the test. Most of them never realize that their children are being screened anyway.

That situation has infuriated Nettie Mayersohn, a New York state legislator from Queens. She considers it a "horror story" that new mothers are not routinely given the good or bad news on HIV. "Those babies' rights are being violated by sending them home without telling anyone," Mayersohn says. "It's insane." She has introduced a bill in the New York legislature that would require identification of HIV-positive babies so that they can be treated, as are newborn victims of syphilis, for example. But the Mayersohn bill faces stiff opposition. Says Elizabeth Cooper of the New York Task Force on Women and aids: "As long as the stigma and discrimination exist around aids out there, we're going to have to treat it differently" from other diseases. A competing measure sponsored by state assemblyman Richard Gottfried merely mandates counseling of new mothers about HIV testing.

Many medical experts think forced screening would be counterproductive. "I strongly believe testing should not be mandatory," says Dr. Jean Anderson at Johns Hopkins Hospital in Baltimore, Maryland. Instead, she argues, "every woman who is pregnant should receive counseling about HIV and be offered testing. If it's presented in a reasonable way, people are going to accept screening; to force them into it is only going to drive them away and alienate them." Thanks to Anderson's approach, more than 90% of women who go to the obstetrical clinic at Hopkins voluntarily agree to be tested for HIV.

The issue took on a new dimension in February, when the National Institutes of Health reported preliminary evidence that AZT could in many cases keep a mother from passing HIV to her unborn child. In a study of HIV-positive pregnant women, three times as many HIV-infected babies were born to untreated mothers as were born to mothers given AZT. Some obstetricians have started to offer the treatment to their HIV-positive patients. "This is the most exciting finding in the 10 years I've been doing this," says Dr. Elaine Abrams, head of the pediatric aids program at Harlem Hospital. Now mothers have a greater incentive to be tested.

Other than temporary anemia, physicians have identified no short-term side effects of AZT on fetal development. However, no one knows what the long-term side effects of AZT might be. As a result, states have not rushed to get pregnant women tested for HIV. Michigan is considering requiring doctors to offer such screening, but North Carolina has abandoned the idea of mandatory testing. "If we identify the female, do we then mandate that she be treated with AZT?" asks Theresa Klimko, an epidemiologist who works for the state. "We have no reason to mandate testing ((of mothers)) unless we mandate treatment."

The debate is just beginning. "It is a very deep ethical and social dilemma," says Dr. Harvey Fineberg, dean of the Harvard School of Public Health, "and fraught with all manner of emotional responses." One thing is certain: each year about 1,800 newborns in the U.S. are infected with HIV. If AZT can safely reduce that number, the pressure for routine testing will only rise.

With reporting by Sam Allis/New York, with other bureaus