The Incarnation Children’s Center Story

by Liam Scheff

We are in the 10 year anniversary of this story:

In 2004, I broke open the NIH Clinical Trial Scandal, the internationally-covered story of hundreds of New York City orphans used by government agencies and pharmaceutical companies in deadly AIDS drug trials.

In reporting this issue, I entered the orphanage where children were being used as guinea pigs, and over a period of several years, took interviews with mothers, children and childcare workers at the Incarnation Children’s Center. I also interviewed the medical director, and investigated the FDA documentation and published medical literature on the tests and drugs used, drugs which were often force-fed through nasal and gastric tubes to the children.

I reported several deaths in children, and although the mainstream denied that any deaths were due to drug toxicity, they admit that over 200 children died.

In 2005, the city of New York hired the VERA Institute to form a final report on the drug trials. VERA was given no access to medical records for any of the children used in trials. Their report was published in 2008.

They reported that twenty-five children died during the drug studies, that an additional fifty-five children died following the studies (in foster care), and, according to Tim Ross, Director of the Child Welfare program at VERA (as of 2009), 29% of the remaining 417 children who were used in drug studies had died (out of a total 532 children that are admitted to have been used). [LINK]

The WIKIPEDIA writers cover up all details, as is expected.

No payment or compensation has been paid to any of the children used in the trials, or to their families.

The New York Times, which was instrumental in covering up the story, hired Janny Scott and Leslie Kaufman to write a hit piece on me in 2005. They declared the following about using orphans in drug trials:

It was seen as one of the great successes of AIDS treatment. In the late 1980’s and early 1990’s, hundreds of children in New York City were dying of AIDS. The only approved drugs were for adults, and many of the patients were foster children. So doctors obtained permission to include foster children in what they regarded as promising drug trials.”

Later in the article, Scott admits that the “permissions” for many of these children are “missing,” (or were never there).

She continued:

“[T]here is little evidence that the trials were anything but a medical success.

In 2009, Janny Scott responded to my persistent queries about their investigation method. They had taken at least 40 documents from me and buried them; what else had they buried? Her answers to me were clarifying:

“No, we did not review patients’ medical files. I would be surprised if that would not have been a breach of patient confidentiality if someone had shown them to us.

An unexpected side effect would have been a side effect not previously seen in response to those drugs, presumably.

Advanced testing methods were the methods available at the time for diagnosing HIV infection.

I do not recall interviewing Dr. Painter [the doctor in charge of the orphanage and orphans] but I may simply not remember. As you know, the Times moved to a new office a year ago. It was not possible to move all of our files. In my case, I threw away files that were more than 12 months old. As you know, the story you are asking about was done in 2005.

I do not recall which studies we looked at. There were a lot of them — some more easily accessible than others, as you know.

As for mentioning side-effects and FDA warnings, there are side-effects and FDA warnings on many if not most drugs. The side-effects of early AIDS drugs have been written about extensively. And, as I have said before, we were not presuming to judge whether or not experimental AIDS drugs should have been tried on children — a question that I suspect few journalists would be qualified to answer; we were attempting to put a public controversy in context.

If you have further objections to the way the story was handled, I suggest you contact Joe Sexton, the editor of the metropolitan news section of the paper and the editor on that story.

Janny [LINK]

In 2009, the Times was forced, in a follow-up story, to admit that many children had died, following the VERA report – but the VERA Institute, hired to “investigate” the trials, was also forbidden from looking at medical records. [LINK] Their “investigator” also refused to take data from me on the trials – lists of the trials themselves, the drugs used, and their recorded ‘black box’ warnings. In a follow-up interview with Vera Myles of WBAI, the head of the VERA Institute admitted that many more children had died than they had listed in their report.

Neither the Times nor the Wikipedia are able to talk about AIDS drugs, which kill people. But, of course, take them if you really want to.

Happy Anniversary.

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