Secrecy Law Under Fire for Hiding Baby’s AIDS Infection From Mother : Health: A New York legislative proposal to “unblind” neonatal tests has become the subject of a fierce fight. The debate transcends political lines and even divides doctors who treat the disease.

ALBANY, N.Y. — In four years of a troubled life, Andrew Von Graevenitz has undergone stomach surgery, had a brain-damaging seizure and--by his foster mother’s count--suffered 23 bouts of pneumonia.

What angers Carol Von Graevenitz is that some of Andrew’s health problems could have been prevented if she had only known sooner about his disease.

She suspected Andy’s early illnesses were caused by AIDS, but had to fight the bureaucracy to have him tested when he was 10 months old.

Andy had already been tested for the AIDS virus--on the day he was born.

But state law kept those results secret from everyone, including his mother and his doctors.

A New York legislative proposal to “unblind” those tests has become the subject of a fierce fight in the state, which has 27% of the nation’s pediatric AIDS cases. The debate has transcended traditional political lines and even divided doctors who treat the disease.

On one side is the state Health Department, AIDS activists and some doctors who argue that the bill would breach the strict law that guarantees AIDS tests be kept confidential. They say rapid advances in what is known about pediatric AIDS have already made the new proposal obsolete.

Supporters say it is common sense that mothers want to know whether their children could develop AIDS. They say it doesn’t make sense to withhold this information when there is a chance to prolong lives or make them more comfortable.

“As a parent, I’m very angry because my child was made to suffer because of confidentiality,” Von Graevenitz said.

Health officials wanted to better trace the progression of AIDS when they started the tests in 1987. The test is performed on all babies born in the state. Similar screening is conducted in 43 other states, although often on a much more limited basis, according to the state Health Department.

Shortly after birth, a baby’s heel is pricked for a blood sample used to test for a variety of diseases.

After the tests are complete, the sample is stripped of all identifying information--except for the hospital name and the mother’s age and racial background--and sent to the state’s AIDS laboratory for an HIV test, said Health Department spokeswoman Frances Tarlton.

Through the end of 1992, the HIV test had been conducted on 1,446,680 New York newborns. There were 9,259 positive results, she said.

A positive test does not mean a baby will develop AIDS. In fact, 75% of newborns testing positive do not develop the deadly disease. The HIV antibody, which is what the test measures, eventually washes out of the baby’s bloodstream, she said.

The test does prove, however, that the baby’s mother is HIV-positive.

Nettie Mayersohn, a Democratic state Assembly member from Queens who describes herself as a “flaming liberal,” said she was astounded to discover the state conducts this survey but does nothing with the information when a baby has tested positive.

She proposed the bill that would require the state to track HIV-tested newborns and tell mothers when the tests are positive.

The chance to help babies justifies this intrusion on a mother’s privacy, Mayersohn said. This stance has made the legislator, once honored by the National Organization for Women as the top New York legislator, a target of groups she usually considers friends.

“Frankly, I am outraged that the opposition dares to present itself as defending the interests of women,” Mayersohn said. “Nothing could be further from the truth.”

Knowing that a baby is HIV-positive would change the way the child is treated almost from birth, said Dr. Louis Cooper, chief of pediatrics at St. Luke’s-Roosevelt Hospital in New York City.

Cooper said he would use drugs to ward off pneumonia, one of the most common sicknesses for babies with AIDS. A doctor might ask to see an HIV-positive baby immediately if the mother complains the baby has the sniffles, while for another child a simple aspirin would be recommended.

Proponents also say it is possible for the virus to pass through a baby’s system through the normal course of events and for the child be re-infected through nursing.

There’s never a good time to tell a woman that she is HIV-positive, but telling her at the same time her baby is sick is about the worst, Cooper acknowledged.

Cooper supports Mayersohn’s legislation, but that puts him at odds with many of his colleagues. Even Judith Figuera, who manages the Program for Children and Families at St. Luke’s-Roosevelt and works for Cooper, has been outspoken in opposing the bill.

“In regards to AIDS, some people are responding in a kind of a panic,” said Sharon Fawley, president of the state’s NOW chapter.

An expert panel appointed by state Health Commissioner Dr. Mark Chassin to wrestle with the question concluded that the newborn test should remain confidential. But it recommended that all pregnant women and new mothers be encouraged to take an HIV test and be counseled about it.

Another bill before the Legislature would require doctors to advise their pregnant patients to take an HIV test and would spend $8 million on counseling. The legislation, sponsored by Assembly Health Committee Chairman Richard Gottfried, is a signal that Mayersohn’s bill has an uphill fight to make it into law.

Gottfried believes there would be more people driven away from the health care system by Mayersohn’s bill than babies helped.

The opponents of Mayersohn’s bill also note a National Institute of Health report in February saying the drug AZT, if given to pregnant women, can significantly reduce the risk of the virus being passed on to the baby.

“It makes it clear that postpartum testing is about six months too late,” Gottfried said.