Category Archives: Incarnation Children’s Center

The ICC Investigation – Deaths in Studies with NYC Orphans – AHRP on the VERA Institute Report

In late 2008, nearly five years after Liam Scheff broke the story of children being used in drug trials in New York City’s ICC Orphanage, the city of New York released its three-million dollar cover-up “investigation” of the events. The official version: 80 children who’d been in trials died (25 during, 55 after), but the drugs ‘could not be to blame.’ How did they know? They didn’t – they didn’t look at drugs, medical records, or interview families or children. They just repeated the official version. The reporter in this news broadcast is Rebecca Myles of WBAI in New York City. The images in this video are of HIV tests, the orphanage, AIDS drug studies and effects (Nevirapine), and the NIH clinical trials.

All of this is censored from the Wikipedia

Two Files:

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WBAI Interview: Scheff, Vera Institute, Rebecca Myles for WBAI: Tim Ross 29 percent have died

ALLIANCE FOR HUMAN RESEARCH PROTECTION
Promoting Openness, Full Disclosure, and Accountability
http://www.ahrp.org and http://ahrp.blogspot.com

The final report of the VERA Institute investigation commissioned in 2005 by the NYC Administration of Child Services will hardly put to rest the controversy surrounding a 20-year period during which children in foster care were subjected to toxic Phase I and Phase II AIDS drug and vaccine experiments–mostly without parental consent and without the protection of an independent advocate–as mandated by federal regulations in force then and now.

The VERA Institute report findings:

  • 532 children in NYC foster care were enrolled in the AIDS clinical trials or observational studies.
  • 80 of the 532 children who participated in clinical trials or observational studies died while in foster care;
  • 25 of them died while enrolled in a medication trial.
  • 64 children participated in 30 medication trials that were NOT REVIEWED by a special medical advisory panel, as the city’s policy required.
  • And 21 children participated in trials that the panel had REVIEWED BUT had NOT RECOMMENDED.

(In both cases, 13 of the enrollments occurred before the children were placed in foster care.)

The authors of the report “concluded” that the deaths were “not a direct result of the medications.”

http://www.vera.org/publication_pdf/clinicaltrials-noappendix.pdf

However the validity of that conclusion is highly questionable inasmuch as the VERA Institute reached that “conclusion” on the basis of (admittedly) incomplete, therefore unreliable records.

MOST IMPORTANT: The VERA Institute acknowledges that its staff never gained access to the children’s primary medical clinical trial records–which the hospitals conducting the trials kept sealed under a shield of confidentiality.

“citing confidentiality laws, the New York State Department of Health (NYSDOH) refused multiple requests from Children’s Services that it use its supervisory authority to allow Vera Institute of Justice staff from Vera or Children’s Services to review clinical trial research or medical records.

This limited Vera’s review in several ways, including the ability to fully document the frequency and severity of toxicity (side effects), the individual outcomes of trial participation for the children in the review, and the existence of valid, signed informed consent documents.” [Executive Summary] http://www.vera.org/publication_pdf/clinicaltrials-noappendix.pdf

Neither did the Vera Institute have access to minutes from medical center research review boards where the trials were conducted.

“Vera could not identify the trials in which an IRB approved a trial under 45 CFR 46.406 or .407. HRA/Children’s Services’ policy required that each institution produce proof of IRB approval, but the policy did not require that the institution identify the category under which the IRB approved the research”

DENIAL OF ACCESS TO THE PRIMARY RECORDS EFFECTIVELY UNDERMINED THE VALIDITY OF THE VERA INSTITUTE INVESTIGATION which was charged with fact-finding about these highly controversial experiments.

The foster children in the experiments–94% children of color–were enrolled, mostly in violation of federal informed consent requirements.

The VERA Institute relied on secondary, child welfare files and Pediatric AIDS Unit (PAU) records both of which are notoriously incomplete.

“Although state regulations mandated that Children’s Services ensure the retention of most of the child welfare files that Vera was asked to review, for 30 percent of the children, some part of the child welfare file was lost, destroyed, or otherwise unavailable.”

“the records of the Pediatric AIDS Unit (PAU) were incomplete, especially after 1995. Problems with the PAU’s record keeping after 1995, including defects in the unit’s electronic database, were noted in the unit’s quarterly reports to supervisors and state officials, including the AIDS Institute.”

Even those incomplete welfare files provide a hint of the adverse effects suffered by children who had been subjected to the experimental trials:

“The child welfare files contained information indicating that some children experienced serious toxicities, or side effects, from trial medications, such as reduced liver function or severe anemia. These toxicities were consistent with toxicities described in published articles about the trials.” Continue reading The ICC Investigation – Deaths in Studies with NYC Orphans – AHRP on the VERA Institute Report

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.

Please download the collected PDFs:

Read all ICC articles: ICC Category

Clinical Trials in NYC Orphans

by Liam Scheff

The following is evidence in the long-running investigation into the use of toxic drugs on orphans in New York City in the Incarnation Children’s Center orphanage and in New York’s major hospitals, and then in Aids medicine in general.

Background on this story – here and here.

Below is the ICC webpage as it appeared when I first looked at it, in 2003. It was taken down in early 2004, after press attention focused on the practice of using orphans in government and pharma-sponsored drug trials.

The page announces the clinical trials then in progress, as well as making some strong statements about improvement of patient health without the admittedly toxic and potentially fatal standard Aids drugs. Continue reading Clinical Trials in NYC Orphans

The ICC Investigation – Radio Interview with Liam Scheff, and ICC childcare worker Mimi Pascual on the Lizz Brown Show

The following transcript is taken from the 2005 radio interview on the Lizz Brown Show (lizzbrown.com), featuring Mimi Pascual, former ICC orphanage childcare worker and Liam Scheff, who broke and investigated the story. Mimi worked at ICC for 8 years over a ten year period. Her story is told in “Inside Incarnation” [Here]

Listen to the interview Continue reading The ICC Investigation – Radio Interview with Liam Scheff, and ICC childcare worker Mimi Pascual on the Lizz Brown Show

Still on Trial

April 2005. NY Press

Last July, New York Press published “Orphans on Trial,” the story of the HIV-positive children of Incarnation Children’s Center (a Washington Heights Catholic orphanage overseen by Columbia Presbyterian Medical Center). The piece detailed how these children are being used in National Institutes for Health- and pharmaceutical-industry-sponsored clinical trials. Continue reading Still on Trial

The Good Man at the NIH

GNN, January 2006

Mr. Fishbein Goes to Washington

Dr. Jonathan Fishbein’s fight for medical ethics in AIDS medicine

Editor’s note: In December 2005, GNN’s Liam Scheff spoke with NIH whistleblower Dr. Jonathan Fishbein. In an exclusive interview, Fishbein discusses the controversial African AIDS drug trials he exposed, his firing and reinstatement and how medical ethics and the public trust are violated when profit and politics rule the day. – A.L.
Continue reading The Good Man at the NIH

The NIH Scandal and the Future of AIDS Research

GNN June 2005

A federal investigation calls drug trials on orphans unethical. Now what?

ICC) has found that the National Institute of Health (NIH) and Columbia Presbyterian Hospital acted unethically.

The Associated Press reported Thursday June 16th: “The government has concluded at least some AIDS drug experiments involving foster children violated federal rules designed to ensure vulnerable youths were protected from the risks of medical research.” Continue reading The NIH Scandal and the Future of AIDS Research

HIV Foster Babies, Children Used to test safety of Experimental Drugs – NY Post

HIV Foster Babies, Children Used to test safety of Experimental Drugs – NY Post

Sun, 29 Feb 2004

As a society, we need to be concerned that too many within the medical research community seem to have abandoned the foremost principle of medical ethics: First, do no harm.

The latest evidence of medical research gone awry was uncovered by The New York Post (below). It involves foster care children diagnosed with HIV. “The most vulnerable, disadvantaged children are being exploited by powerful entities and used as guinea pigs as if they were not human beings.”
Continue reading HIV Foster Babies, Children Used to test safety of Experimental Drugs – NY Post

Aids Tots Used as Guinea Pigs

SHOCKING EXPERIMENTS

AIDS TOTS USED AS ‘GUINEA PIGS’
By Douglas Montero

NY Post

“I took the girls out of hell—and the city stole them back”
February 28, 2004

Jacqueline Hoerger will never forget the raid of her Nyack home by foster-care social workers who snatched the two HIV-positive sisters she was trying to adopt.

Her crime: She was accused of neglect by the girls’ doctor of because she refused to give them a potentially dangerous cocktail of high-powered AIDS medications that she felt made them sicker.
Continue reading Aids Tots Used as Guinea Pigs

Gastric Tube for AIDS Drug Adherence in Children

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The study states that Aids doctors want to be able to (and so do) put a tube surgically through the stomachs of children who don’t like to, want to, or can’t swallow their very “unpalatable” FDA Black-Box labeled “Aids Drugs.”

The study notes that drug adherence improves after taking choice out of the equation.

They note that there are only minor complications, such as intravenous antibiotics required to treat infection, and “local site tenderness.”

The study considered children “non-adherent” if they had had “2 visits” to the hospital, “where nonadherence was documented” over the course of one year.

That’s when they became “eligible” for the non-elective surgery.

One “older child” had to quit gymnastics. Children (or their hospital records) were reviewed for one year, and not more.

Children at the Incarnation Children’s Center who had the tubes inserted in their bellies, I was told, over and over and over again, by staff, mothers and teenagers from the place, always deteriorated and did worse than children without the tubes.

Fig. 1. GT button on a child’s abdomen.

Continue reading Gastric Tube for AIDS Drug Adherence in Children

Interview with a Pediatric Aids doctor – the ICC Investigation

In May 2003, I began my investigation of the Incarnation Children’s Center (ICC), an orphanage in New York City’s Washington Heights that was being used by government (N.I.H.) and pharmaceutical companies as a test center for the standard AIDS drugs – AZT and its analogs, Nevirapine, and the various protease inhibitors. ICC received funding from both government and corporate sponsors to enroll its wards, primarily abandoned children of drug (crack cocaine and heroin) abusers, in NIH clinical trials(1).

Continue reading Interview with a Pediatric Aids doctor – the ICC Investigation

BBC Guinea Pig Kids Transcript

Transcript for the BBC documentary “Guinea Pig Kids.”

With added notes by Liam Scheff.

I have provided a few comments in brackets. The rest is from the BBC transcript of the film.
The Narrator throughout is Amanda St John.

This World – Guinea Pig Kids

Date: 30th November 2004

This script was made from audio tape – any inaccuracies are due to voices being unclear or inaudible

Dr David Rasnick: They were just experimenting, like you had a bunch of lab rats, an unending supply. You had subjects, you had drugs and you were just experimenting, throwing things around.

Boy: [ ed. – this is “Sean” from The House that AIDS Built. He is later called “Carlos” by the film producers. Both are aliases, as per his guardian’s request]
It’s just that I don’t like it when I see my best friends pass away, you know.

Vera Sharav: Would they have done those experiments to their own children? I doubt it.
Continue reading BBC Guinea Pig Kids Transcript

Inside Incarnation

Inside Incarnation

By Liam Scheff

New York Press, July 27 – August 2, 2005

MimiPascual

Mimi Pascual gave the children drugs every day and every night, on schedule, as the doctors ordered. She shook the children awake and popped the pills into their mouths, or squirted a syringe full of ground pill and water to the back of their throats.

She and the other child-care workers made the rounds: midnight, 3 a.m., 5 a.m. Some kids took the pills by mouth, some through nasal tubes, and some through tubes jutting out of their stomachs.

The children didn’t like the drugs. They’d wake up vomiting or with bad diarrhea. But Mimi and the workers at Incarnation Children’s Center had to follow the regimen, or they’d be fired. “The drugs had side effects, everybody knew that,” said Mimi. But the workers were told the drugs were saving the children’s lives.

After a young girl who had just gone on the drugs had a stroke and then quickly died, and another young boy who was put on thalidomide wasted away on a respirator, Mimi stopped believing that the drugs were just saving lives. She believed they were killing the children too. Continue reading Inside Incarnation