1995Commentary

A Silence That Kills Children

By: 
Jim Dwyer
April 15, 1994

In the picture they brought to his memorial yesterday on Audubon Avenue, Kevin was held aloft in loving arms. Beneath the image of the big-eyed boy, candlelight flickered against a vase of flowers and a statue of an angel. The people who took care of him sat in rows. Someone dug into a purse for a pack of Kleenex, then passed the package along without looking.

About the very same moment, the New York State Senate voted unanimously for more of the policy of silence about children's health that helped kill Kevin before he reached the age of 2.

The Senate bill is sponsored in all good intentions by a man from Long Island named Michael Tully, and in the Assembly, a twin version comes from Richard Gottfried, of Manhattan.

Kevin died of AIDS on Saturday. His short life tells us much about how AIDS politics have warped medical care for people who cannot carry picket signs. He was born in St. Luke's Hospital in Manhattan in June, 1992, and even though the laws of the State of New York required that he be tested for seven or eight diseases, the law also keeps one result secret: the HIV test.

"The mother went home from the hospital with Kevin, not knowing anything was wrong with him, and he came back at three months," said Dr. Stephen Nicholas, a pediatrician who cares for young AIDS patients at Harlem Hospital, Columbia Presbyterian and Incarnation Childrens Center.

By then, it was too late. A cough and fever quickly turned into pneumonia. "He was so sick from pneumocystis carinii pneumonia - what people call PCP - that he nearly died," said Nicholas. "Once an infant gets PCP, it is so devastating to the immune system, half die right away. The others live a year or so."

PCP is the main killer of babies with HIV infection, even though it is a totally avoidable disease. If Kevin had been diagnosed with HIV at birth, he could have been put on an ordinary antibiotic that heads off the pneumonia infection.

"With earlier intervention, a lot of his problems would have been prevented," said Nicholas. "His PCP certainly could have been prevented, and his immune system would not have been so beaten up. If you can prevent PCP, there's no doubt he could have lived longer. How much longer, and how well, is debated. We have kids living to an average age now of 8 to 10 years old."

For this reason, Nicholas supports a program of mandatory HIV testing for all newborns. "There is such clear evidence that we can help them," said Nicholas. "Routine newborn testing, the same way that we do syphilis testing, will help the children to live longer and better lives."


AIDS occupies a unique place in New York State's public health law because the first people to suffer from the disease, gay men, worried that disclosure of their condition would lead to discrimination. The center of the disease now is shifting into minority communities. The confidentiality that shielded homosexuals from harassment now is a high wall between babies and good medicine.

For instance, a provision of the Public Health Law, known as 27F, requires the state to test newborns for the infection - but forbids those results from ever being disclosed. In the case of Kevin, his blood was sent to Albany for HIV tests soon after his birth - but only with the identification that he was a baby boy, born in St. Luke's Hospital.

St. Luke's and the other hospitals are supposed to counsel the mothers on the value of HIV testing apart from the "blind tests" used to track AIDS cases. The state and the city provide funds for the counseling programs.

These programs are useless. At St. Luke's, for instance, between July 1 and Sept. 30 of last year, eight newborns tested positive for HIV. None of the mothers - not one - was given the results. The chances are that their infected babies will learn that they are HIV-positive when they become deathly ill.

Across the state, 226 HIV-positive babies were born during those same three months last year. The counseling programs persuaded 36 mothers to open up their HIV test results.

In other words, 84 percent probably didn't know their kids were vulnerable to a grim, early death - even though good medicine, good food and good care help kids live longer and better.


"They don't have a clue that their baby has been tested and is at risk for a deadly disease," said Assemb. Nettie Mayersohn, of Queens. "That baby is entitled to care. We're treating them as though they are non-persons. Statistical tools to track the epidemic, but expendable.

"We in the state Legislature have to make an assumption that these babies want and are entitled to the same state-of-the-art medical care and treatment that adult AIDS victims are demanding for themselves."

Last year, prompted by an extraordinary series of articles on AIDS by Nina Bernstein in New York Newsday, Mayersohn began to investigate the "iron curtain of confidentiality" that surrounds AIDS tests of newborns.

Her bill to open the newborn tests is opposed by the Gay Men's Health Crisis and the National Organization for Women, which say that a positive test of the newborn automatically reveals that the mother has the disease - a violation of her privacy.

To block the Mayerson bill, Gottfried and Tully have introduced legislation that would provide more funds for prenatal counseling - a valuable way of preventing AIDS cases - but would not change the state's laws on the newborn's HIV results.

"What works is counseling," said Gottfried. "Any pediatrician will tell you that the mother is the most important factor in a child's health care." He cited a counseling program at Harlem Hospital as an example of what his law would require.

But one of the doctors who designed the Harlem Hospital counseling program says it's not good enough - and it happens to be the doctor who treated young Kevin. "At best, we get 90 percent of the women to agree to tests," said Stephen Nicholas. "We don't feel it's good enough for Harlem Hospital, because you're still missing 10 percent. And no one else is getting as many mothers to agree to testing.

"Who is speaking up for these kids? Aren't they entitled to the same care as adults?"