The AIDS-Babies-as-Guinea-Pigs Story Is Finally Over. Right?

On January 27, The New York Times published a short article that was clearly intended to provide the final, definitive word on a controversy over the medical treatment of AIDS babies that, just a few years earlier, gripped much of the city.

Using the kind of vocabulary that cautious journalists rarely use with such certainty, the Times asserted that a new study by a nonprofit research institute had settled questions about whether foster children at a convent in Washington Heights had actually been killed in drug trials.

"The Vera Institute," the Times announced with finality, "concluded that none of the 532 children in the trials died as a direct result of the medications."

Brian Stauffer

Take a look at that sentence again. It doesn't leave much room for doubt.

But when the Voice called up the Vera Institute of Justice to ask what it was like for its criminal justice researchers to wade into what was once a fierce controversy over the use of very sick black and Latino foster children for experimental and highly toxic AIDS drugs over a 13-year period, the people at the Institute didn't sound so certain.

This is what Tim Ross, director of the Vera Institute, said when he was asked about the assertion that none of the sick children had died from the toxic drugs themselves:

"Trying to nail down the precise cause of death was very difficult. But to say that they died because of the trial . . . we couldn't say that," he answered.

Note the difference: not, "None of the children died as a result of the medications," but, "We couldn't say that."

Ross went on: "You also can't say that any particular kid benefited or lived longer from some of the medicines. Would they have died in three months instead of six—or a year?"

It was impossible to say with certainty, he pointed out. And why was that? Despite the Times' confidence in the Vera Institute's study, some of the people at the nonprofit say they were incredibly frustrated when they set out to investigate what had really happened to the children in what was a nightmare scenario, at best. And the source of the frustration?

Well, there's this, for starters: The Vera Institute, chosen by the city to provide an independent assessment of what happened, was never able to acquire the actual medical records of the children involved, despite repeated attempts to obtain them.

The majority of the 25 children who died during the trials were extremely sick with full-blown AIDS when they began the testing, which has led the researchers to believe it was unlikely that they died due to the medications. But they don't know for certain. Without medical records, the Vera Institute says, it is also impossible to know what the actual effects of the drugs were on any of the children or how much they suffered.

"Most people would be happy they weren't dead," says Ross. "But there was a lot else we found troubling."

So maybe it's worth taking another look at what happened at the testing facilities for very sick children, to determine what else troubled the people at the Vera Institute—despite the public pronouncements that there is nothing to see here.

Four years ago, the Times wrote a much longer story that laid out, in a skillful and comprehensive way, the origins of the controversy and how it had come to light. (The Voice itself, as far as we can tell, wrote nothing at all.)

"Most of the questions have arisen from a single account of abuse allegations—given by a single writer about people not identified by real names, backed up with no official documentation as supporting proof, and put out on the Internet in early 2004 after the author was unable to get the story published anywhere else," the Times noted.

That writer was Liam Scheff, a man who lives in Boston, comes from a family of doctors, is "nearing 40," and who, in 2003, knew that he was onto a remarkable news story about the way foster children in Washington Heights were being used in medical experiments.

There's little doubt that Scheff uncovered a troubling and fascinating part of the city's history. But the problem wasn't that he was an "independent" journalist who tended to get stories published only on the Internet.

No, the problem was that Liam Scheff was on a crusade, one that made it especially unfortunate that he was the one who stumbled onto what was happening at an old convent converted into a sickhouse for foster children.

Scheff was very concerned about the sick children at the Incarnation Children's Center who were the subject of drug trials from about 1989 to about 2002—there's no doubt about that. But he is also part of a small but insistent group that doubts that HIV causes AIDS; considers HIV tests to be highly inaccurate; and believes that AIDS medications cause more harm than good. Medical science considers all three subjects long settled: HIV tests are actually among the most accurate in the field; AIDS drugs have helped turn what was once a death sentence into a manageable disease; and HIV's role in AIDS is well established.

Next Page »