1995Commentary

Babies Behind A Steel Door

By: 
Jim Dwyer
May 27, 1994

I can tell you that the funeral mass in Washington Heights yesterday for the 16-month-old boy was unbearable to look at. But you must be as tired of other people's misery as I am. So let's talk statistics instead, and save ourselves thinking of a coffin 24 inches long that could be carried under your arm.

At least twice a week in 1993, doctors in New York City hospitals sent home babies infected with the HIV virus without telling the parents that their children were sick. That's not incompetence. Much worse: that's the law. In New York, unless the mother specifically asks for her child to be tested for the HIV infection, everyone keeps their mouths shut, by statute.

Hey! Keep your eye off that tiny white coffin. Here are more statistics to keep you warm: Last year, 774 newborns tested positive for the HIV infection. Only 332 mothers knew this when they left the hospital. The other 57 percent, the 442 other babies, went home with a mother ignorant that her child had tested positive. (Of these, ultimately 110 babies will come down with AIDS.)

A child with his parents' syphilis or sickle-cell anemia would be treated automatically, shortly after birth in a hospital nursery. But public health law on the HIV infection is still wrapped up in a 10-year-old notion that it is a disease of gay men who, many agreed, needed steel-door confidentiality on their tests. If privacy were compromised in HIV tests, it was felt that gay and bisexual people would avoid them. So unlike other sexually transmitted diseases, doctors by law cannot trace the sexual contacts of people with HIV. You can argue about that if you want.

But that argument is extended to the point of absurdity when it comes to the testing of newborns. The state tests all babies for seven diseases, but HIV is excluded because testing the baby automatically would disclose the mother's HIV status. That would violate her privacy under the law. Moreover, testing the mother without her consent, as has been repeated a thousand times, would "drive her away from the health-care system."

This is unproven dogma, not science, but it controls New York State public health law on AIDS.

The evidence is plain that a law protecting the privacy of gay men has almost no relevance to an epidemic that is now spreading fastest among babies and women of color. The death certificates of these people could list AIDS as the cause, with "confidentiality" chiseled in as a contributing factor.

Kids go home infected with a lethal disease and no one knows about it, and they get sick faster and die sooner. Medicine and good food, a bit of extra effort, can make their lives longer and better. Virtually all of them are black and Latino. The state is filled with professional AIDS activists who will fight to the last infant's corpse to prevent a mother from being tested through her child.

The people in charge of this scandal are Health Commissioner Mark Chassin and ultimately his boss, Gov. Mario Cuomo. However, they have help from the state Legislature, which now is considering whether to revise these laws so they would unlock the steel door and protect the child. Assemb. Nettie Mayersohn and state Sen. Guy Velella are sponsoring a law that effectively would test all babies at birth, and provide money to help counsel their mothers on the best way to proceed.

In the Assembly, Mayersohn now has a majority of the members as co-sponsors, and her bill would pass in a landslide - if it were released from health committee. The chairman of the committee, Richard Gottfried, is opposed to Mayersohn's bill and the measure has stalled there by a vote of 10-9. The opponents of her bill believe that persuading women to get HIV tests during pregnancy would be better than mandatory testing. They call, instead, for something described as "mandatory counseling." We will see how the speaker of the Assembly, Sheldon Silver, handles this one.

Right now, the state health department already spends more than $2 million a year on counseling programs. It is a spectacular failure: from there, we get 43 percent of the mothers taking the state's advice to get a test.

I tried all day yesterday to get Chassin to the telephone to talk about this public health flop that he presides over, but he wouldn't take a call.

"He's on his way to Queens," a spokeswoman said.

"They have phones in Queens," I argued.

My opinion of Chassin will go way up if he is keeping his mouth shut out of shame for this law. That funeral at Incarnation Church in Washington Heights yesterday was for one of those statistics last year that didn't get tested. There's another baby funeral today at a Baptist church - but hey, let's hear a little silence for death. Try these statistics on for size:


Newborns and HIV: Babies born HIV positive at city hospitals July 1-Dec. 31, 1993:



              HIV-Positive  Babies    Moms 
              Moms ID'd     Born      Who Knew 
              Through       HIV       HIV 
  Hospital    Counseling    Positive  Status 

  Bellevue       0          16        13 
  Bronx Mun.     2          22        19 
  Coney Island   1           9         2 
  Elmhurst       1          17         8 
  Harlem*        2          34        11 
  Kings County   0          30        11 
  Lincoln 
  Med. Ctr.      1          44         9 
  Metropolitan   1          17         1 
  N. Central 
  Bronx          2          20         7 
  Queens         0          16         2 
  Woodhull       2          28        11 

  Total        14           253       96 

  

*-A new program at Harlem Hospital reports that 80 percent of mothers agreed to have their babies tested. SOURCE: State Department of Health