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AIDS Baby Debate Heats as Lawmakers Propose Mandatory Testing

May 15, 1995

WASHINGTON (AP) _ Michele Faust wasn’t told that her infant son was born with the AIDS virus until he almost died at two months, even though doctors tested him on the day he was born.

Faust didn’t know of her son’s illness because the government conducted secret AIDS tests on newborns in order to track the spread of the disease among young women. But just as Congress and state legislatures began considering forcing the government to inform mothers of test results, the government canceled the testing altogether.

Stunned lawmakers now are rewriting their bills to force federal doctors to resume testing and tell mothers if their babies may be ill.

``All we want to do is identify children in time to help them,″ said Rep. Gary Ackerman, D-N.Y., sponsor of the federal bill. ``They have a right to health care.″

``If the baby AIDS bill had been in effect, everybody would have treated him right away, then he wouldn’t have been this sick,″ said Faust, a Long Island mother who discovered her son Terry, now 2 1/2, had AIDS when he nearly died of pneumonia at age 2 months.

But AIDS activists say testing newborns simply erodes mothers’ rights without slowing the spread of the HIV virus.

``Why aren’t we doing the sensible thing of offering the mother an opportunity to prevent transmission to her infant?″ asked Jane Silver of the American Foundation for AIDS Research.

An estimated 2,000 babies are born with the HIV virus every year. The federal government has tested all newborns in 45 states for HIV since 1988. The states that didn’t test newborns are Idaho, Nebraska, North Dakota, South Dakota and Vermont, because they have too few HIV cases.

Mothers were not told of test results because it was solely a research tool to track AIDS in women. Roughly 80 percent of babies born to HIV-infected mothers never develop AIDS but test positive simply because they carry their mothers’ immune cells.

But the Centers for Disease Control and Prevention abruptly ended the $10 million testing survey last week, derailing bills pending in Congress and state legislatures that would give mothers access to their babies’ test results.

``They’re treating the AIDS epidemic the way we’ve never treated any other disease in this country,″ said New York state Rep. Nettie Mayersohn, who is rewriting her bill to have HIV added to the list of seven other diseases, including syphilis, that mothers are told their newborns were tested for.

The CDC says it ended the survey because it isn’t necessary any longer. Next month, the agency will begin a massive push for every pregnant woman to be voluntarily tested for HIV, so infected women can consider taking the drug AZT to cut by two-thirds their chance of infecting their babies.

If that policy succeeds, doctors would know which babies are infected in time to ward off pneumonia and other AIDS-related diseases. Inner-city hospitals in Atlanta, Los Angeles and New York tested the policy with a 95 percent success rate, the CDC says.

AIDS activists want testing urged to pregnant women early enough to try to protect their unborn children. Women need to be counseled and offered testing, not blindsided with the news that they and their infants have a fatal virus, said Marlene Diaz, a New York mother whose infant daughter is HIV positive.

``I had thoughts of jumping out the window,″ Diaz said of learning doctors had secretly tested her baby. ``If they really want to help babies, they’d offer more health care services and ways to prevent AIDS.″

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