Fwd: NY Times Covers ICC story - important - please take a minute

[Guest guest]

The New York Times just covered - I suppose 'attempted to bury' would

be a better way to say it - the story on Incarnation Childrens'

Center in New York drafting orphans into AIDS drug studies or

" experimental treatments " and forcing the kids to take the drugs by

surgical feeding tube implants. The story was investigated and

exposed by Liam Scheff.

 

Below is Liam's response to the NY Times.

 

What can I say? At least the " newspaper of note " has to do a hack job

on the story, it's no longer possible to just ignore what is posted

in various places on the internet...

 

Kind regards

Sepp

 

 

 

 

Sat, 16 Jul 2005 14:49:50 -0700 (PDT)

liam scheff <liamscheff

NY Times " Covers " ICC story - important - please take a minute

 

NY Times Covers ICC story..

And by Covers - I mean buries.

 

http://www.nytimes.com/2005/07/17/nyregion/17trials.html?ei=5094 & en=b1d5d7b52f5a\

ab43 & hp= & ex=1121572800 & partner=homepage & pagewanted=print

 

 

It's in the Times, so lots of people will skim it.

If you find their reporting lacking in any facts, then please write them a

letter at:

 

letters

 

The article was written by

Janny Scott and Leslie Kaufman.

 

They interviewed me, but only used the little bit they needed to make

everybody feel good about ignoring the story.

 

What can you expect? It's the NY Times.

 

But you can email them a response, if you want to put together a reasonable

letter.

 

janscott

 

leslie

 

 

 

My letter can be found at my blog:

 

http://www.gnn.tv/blogs/7473/NY_Times_To_The_Rescue

 

Dear Editor,

 

Thanks for covering the Incarnation Children's Center story.

 

You might have showed a little bias in your reporting, however.

 

If I didn't know better, I'd say from reading what you wrote that I, Liam

Scheff, independent journalist, somehow managed to get everyone who covered

the story - the Alliance for Human Resource Protection, the New York Post,

the UK Observer, and the BBC - all to dispense with their fact-checking and

research departments and take my 'word' for what I discovered at ICC.

 

That's quite a remarkable story.

 

I'm sure you'll stick to it, but it's far from true.

 

Your piece claimed that I presented no 'official evidence' in my reporting on

Incarnation Children's Center. In fact, I've presented piles of official

evidence - NIH clinical trial documents, drug manufacturer's package inserts

and warning labels, multiple citations from the Physician's Desk Reference,

NIH and FDA policy papers on the use of wards of the state - to name a few.

 

You wrote that I made claims in my article about the death of two children at

ICC. I was reporting from sources, one of whom I made available to the New

York Times reporters after they interviewed me. I stand by that claim, and

those sources.

 

You generously quoted Dr. Stephen Nicholas on the helpful nature of AZT in

preventing mother-to-child transmission of AZT. You didn't, however, bother

to quote the medical literature.

 

There are several studies on AZT and transmission. The NIH study Nicholas

quoted (ACTG 076) is the only one with a significantly favorable outcome.

Other mainstream studies on AZT rate it similiar to or worse than placebo or

no treatment regarding maternal HIV transmission (for a list of citations on

AZT see http://www.aras.ab.ca/azt.html).

 

You also omitted reporting on the consistent downgrading of AZT (also called

Zidovudine) in the medical literature - from " life-saving AIDS drug " to a

drug which actually increases the rate of disease progression and death in

children born to mothers who were given AZT.

 

Here are some examples:

 

" The probability of developing severe disease at 3 years of life was

significantly higher in children born to ZDV+ [Zidovudine, AZT treated]

mothers than in those born to ZDV- [no AZT] mothers...The same pattern was

observed for severe immune suppression...Finally, survival probability was

lower in children born to ZDV+ [AZT treated] mothers compared with children

born to ZDV- [no AZT] mothers. "

 

Rapid disease progression in HIV-1 perinatally infected children born to

mothers receiving zidovudine monotherapy during pregnancy. AIDS.

13(8):927-933, May 28, 1999.

 

" Children of study women who were prescribed ZDV [Zidovudine, AZT] had

increased adjusted odds of any anomaly...[T]he lack of data on potential

adverse effects of this therapy is still a concern....Babies whose mothers

had ZDV [AZT] exposure during pregnancy had a greater incidence of major

malformations than those whose mothers did not. "

 

Newschaffer CJ et al. Prenatal Zidovudine Use and Congenital Anomalies in a

Medicaid Population. J Acquir Immune Defic Syndr. 2000 Jul 1; 24(3): 249-256.

 

" The study cohort included 92 HIV-1-infected and 439 uninfected

children...Antiretroviral therapy (nonprotease inhibitor) was independently

associated with FTT [Failure to Thrive] in our cohort...ZDV [Zidovudine,

AZT], in particular, alters mitochondrial metabolism and may have direct

nutritional effects "

 

Miller TL et al. Maternal and infant factors associated with failure to

thrive in children with vertically transmitted Human Immunodeficiency Virus-1

infection: the prospective, P2C2 Human Immunodeficiency Virus Multicenter

study. Pediatrics. 2001 Dec; 108(6): 1287-96.

 

There are so many contraditions in the medical literature regarding AZT and

other AIDS drugs, you have to work hard to ignore them.

 

Finally, you did not mention that I interviewed the medical director of ICC,

Dr. Catherine Painter, who told me, in no uncertain terms, how the medication

regimen would be enforced if a child was unable to swallow pills which tend

to cause abdominal distress (vomiting and diarrhea). The method, I was told,

is a surgery to implant a gastric tube into the abdomen of these children,

for the purpose of strict adherence to the drug regimen.

 

It's one thing to say that AZT is a life-saving drug and that these orphans

have been treated with the highest standard of care. It's another to print it

as fact in the pages of the New York Times, without reporting the significant

evidence to the contrary. Instead of digging to the roots of this story, you

have instead successfully colored it against further investigation in your

pages. And that's a shame for people who think you really are the paper of

record.

 

Sincerely,

 

Liam Scheff

 

Independent Journalist

 

Seattle, Washington

 

 

 

 

 

Belated Charge Ignites Furor Over AIDS Drug Trial

 

By JANNY SCOTT and LESLIE KAUFMAN

 

 

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.

 

By 2000, the number of children under 20 who died of AIDS in the city

that year dropped to 13 from more than 100 per year less than a

decade before.

 

But now, just as the trials are receding into history, they are

coming under intense scrutiny. A federal agency is investigating

whether guidelines for including foster children in trials were

violated. The city's child welfare administration has opened an

independent inquiry into whether children were harmed.

 

And when the head of the child welfare system testified about the

trials at a City Council hearing in May, angry spectators shouted him

down.

 

All this is happening despite the fact that there is little evidence

that the trials were anything but a medical success. 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 story accused doctors of brutally experimenting on foster

children, most of them black, Latino or poor. It said they had

poisoned them with toxic drugs, sometimes against their parents' will

and without even being certain they were sick.

 

The charges jumped from Web site to Web site, then into The New York

Post and into a documentary shown on the BBC. The documentary alarmed

black civil rights activists and City Council members, who charged

racism.

 

Physicians and federal health officials involved in the trials have

strongly defended their work. They say hundreds, perhaps thousands,

of children benefited; many of those were children not in foster

care. To have withheld promising drugs from sick children just

because they were in foster care would have been inhumane, the

doctors say.

 

They say they obtained legal permission for the children's

participation, either from the biological parents or child welfare

officials, in all but a small number of cases. Numerous doctors

interviewed said they knew of no foster child who died as a result of

the trials.

 

" For those people who believe that these kids were harmed, I'd like

to say, 'What is the evidence?' " said Dr. William Borkowsky, a

pediatrician at Bellevue Hospital Center who took part in the trials.

" And better yet, 'Is there evidence that they were helped?' There is

very impressive evidence that they were helped. "

 

Missing Records

 

The most thorough of the investigations will not be completed for

months. In the meantime, some critics' suspicions have been stoked by

admissions by city officials that their own records are inadequate or

missing. The city's child welfare agency, the Administration for

Children's Services, which has been through four changes in

administration since the trials began, cannot even say conclusively

how many foster children were involved.

 

More worrisome, the agency now expects that the current independent

investigation will find that there are inadequate records of parental

consent.

 

" We don't believe we have all the permissions by any means, " said

Sharman Stein, director of communications for the children's services

agency.

 

Already, one federal agency, the Office of Human Research

Protections, found in June that one New York hospital had approved

four of the trials without gathering enough information about the

selection of foster children as subjects, or about the process for

getting their parents' or guardians' permission. It made no finding

as to whether any children were harmed or selected improperly.

 

Whatever the outcome, the controversy has already demonstrated the

power of a single person armed only with access to the Internet and

an incendiary story to put major institutions on the defensive. The

story taps a combustible mix of fears: the suspicions of some

activists that AIDS is not necessarily caused by H.I.V. and that AIDS

drugs do not necessarily help, and the belief of some black people

that the medical establishment does not always have their interests

at heart.

 

The controversy extends back to a bleak period in New York City

history when well over a hundred children a year were dying of AIDS,

most under the age of 5. As many as one in every five children

infected with H.I.V. were dead by 2, doctors now say; up to 50

percent were dead by 4.

 

There were no AIDS drugs approved for children in those years. The

first AIDS drug, AZT, was approved for adults in 1987. Babies were

being abandoned in hospitals, their mothers unable to care for them

and with no foster homes available. About 40 percent of the children

with H.I.V. were in foster care.

 

As a result, pediatricians began pressing pharmaceutical companies to

let them try drugs shown to work in adults. " People were clamoring,

begging for access to any drug, " said Dr. Borkowsky.

 

Trials began in the late 1980's. Pediatricians asked the city to

allow foster children to participate. " To deny these kids the

medications would have been a crime, " said Dr. William B. Caspe,

chairman of pediatrics at Jacobi Medical Center in the Bronx.

" Because of what we did, we were able to keep them alive until newer

medications became available. "

 

By 1989, the child welfare agency was developing rules for enrolling

large numbers of foster children in clinical trials. Carol Marcus,

the agency's lawyer in charge of that project, said that the agency

had acted slowly and carefully, aware of the need to protect a

particularly vulnerable population. In a recent interview, she said

that even then she was acutely aware that the agency could be accused

of racism and exploitation.

 

The guidelines required a panel of pediatricians to review all

pediatric AIDS trials being sponsored by the National Institutes of

Health, and to eliminate those in which there was no " prospect of

direct benefit " for each child. The agency required the consent of

the child's biological parent or, if no parent could be found,

written permission from the commissioner.

 

Ms. Marcus says that she now believes there could have been more

safeguards. The task of matching children to trials was left to each

child's physician. She said the agency, which had seen the number of

children in their care double in two years to 40,000, was too

understaffed to monitor how each child was doing. Nevertheless, she

remains proud of the agency's response to the crisis.

 

In 1990, under the city's first black mayor, David N. Dinkins, the

guidelines went into effect. They were being carried out by Barbara

J. Sabol, the city's first black commissioner of social services, and

by her deputy in charge of child welfare, Robert L. Little. Mr.

Little, a younger brother of Malcolm X, died in 1999, and Ms. Sabol

did not return phone calls to her office.

 

One center that took part in the trials was a small boarding home for

H.I.V.-infected foster children called Incarnation Children's Center,

the brainchild of Dr. Stephen W. Nicholas, now director of pediatrics

at Harlem Hospital Center. With as many as 24 infected children

abandoned in the hospital in 1988, the idea of finding them a home

outside the hospital came to him after a young patient greeted him

with, " Hi, Daddy. "

 

Working with Columbia University and the Catholic Archdiocese of New

York, Dr. Nicholas became the medical director of Incarnation, on

Audubon Avenue in Washington Heights, which opened in 1989 and added

an outpatient clinic in 1992. Foster children there and elsewhere

were enrolled in trials - at first, trials of single drugs like AZT,

and later, of multiple-drug cocktails and protease inhibitors, which

by 1996 were helping turn AIDS into a manageable, if still chronic,

disease.

 

For 14 years, 90 percent of the children infected with H.I.V. in the

city, in foster care and not, participated in drug trials, according

to estimates by the child welfare administration. Gradually, fewer

children became infected and sick. Foster homes were found for many,

and many were adopted. In 2000, Incarnation became licensed as a

skilled nursing facility under the State Department of Health,

opening its doors to children not in foster care. In 2001, Dr.

Nicholas left for his current job at Harlem Hospital Center.

 

The story, however, does not end there.

 

In the summer of 2003, Incarnation was visited by Liam Scheff, a

34-year-old, self-described " very independent journalist from the 'go

out and get the story, don't let the slammed door get in your way'

school of journalism " with a longtime interest in what he calls " the

other side " of AIDS.

 

Mr. Scheff had doubts about much of what was known about AIDS. He

doubted that H.I.V. was necessarily the cause. He doubted the seeming

certainty of an AIDS diagnosis. He doubted the reliability of the

H.I.V. test and the usefulness of AIDS drugs in part, he said,

because he knew H.I.V.-positive men who had remained healthy on a

macrobiotic diet.

 

Mr. Scheff said he had been put in touch with a New York woman who

said her two adopted children had been placed in Incarnation after

she had let them stop taking AIDS drugs she believed had made them

sick. So Mr. Scheff went to Incarnation, as a friend of the family.

He said he was horrified by what he saw.

 

Grim Allegations

 

In January 2004, he posted an article, " The House That AIDS Built, "

on indymedia.org, a Web site that describes itself as an outlet for

" radical, accurate and passionate tellings of truth. " He chose that

approach after trying unsuccessfully to get the article published. " I

couldn't get anybody to touch it, " he said.

 

The article made a series of gruesome claims: Among other things, Mr.

Scheff wrote that Incarnation had been holding children against their

parents' will, in some cases force-feeding them drugs " known to cause

genetic mutation, organ failure, bone marrow death, bodily

deformations. " He wrote that two children had recently died.

 

The article came to the attention of Vera Hassner Sharav of the

Alliance for Human Research Protection, a group she said she had

founded to monitor " the underbelly of research " after her

schizophrenic son died of a reaction to an approved drug. After his

death, she said recently, she realized people must " stop thinking you

can trust the men in the white coats. "

 

She added, " It's a business now. "

 

Ms. Sharav forwarded Mr. Scheff's article to the 3,500 people she

said receive her e-mail " infomails " daily. She then looked into

Incarnation on the Internet. She came to suspect that children had

died there, and that this was what ended the trials and led to the

license change and Dr. Nicholas's departure. In March 2004, Ms.

Sharav filed a complaint with the federal Office for Human Research

Protections and with the Food and Drug Administration.

 

At the same time, The New York Post published several articles about

Incarnation under headlines like " AIDS Tots Used as Guinea Pigs. "

Soon, an independent film director enlisted Mr. Scheff and Ms. Sharav

to help with a documentary, paid for and shown by the BBC, entitled

" The New York Experiment - Guinea Pig Kids. "

 

The reports alarmed African-American activists and politicians in the

city. The accusations resonated in particular with Omowale Clay, a

leader of the December 12th Movement, a Brooklyn-based group that

campaigns for reparations for slavery, and acts as a watchdog group

for civil rights violations against blacks.

 

Mr. Clay said he had conducted his own research and concluded that

trials were done on black infants who did not even have H.I.V. He

offered no evidence of his claims.

 

" What we know already, " he said, " is that 98 percent of the children

experimented on were black and Latino and that the fundamental basis

of why they chose those kids was racism. They have the arrogance to

say it was for their own good, but we know it was racism. "

 

Last fall, Mr. Clay began showing the documentary film, which had

aired only on BBC, in churches, block association meetings and

private gatherings. He campaigned to make the child welfare agency's

records public.

 

At the same time, two Democratic city councilmen, Charles Barron of

Brooklyn and Bill Perkins of Manhattan, also were calling for Council

hearings and an investigation by the city.

 

In March, the child welfare agency handed its critics new ammunition.

It revised its count of the number of children in the trials, to 465

from 89, saying it had discovered an additional box of documents in

the basement.

 

The news prompted a new round of scrutiny. The child welfare agency

responded by hiring the Vera Institute of Justice, an independent

nonprofit research group, to conduct an in-depth investigation at an

initial cost of $1.5 million. The move hardly tamed the fury.

 

Demanding Answers

 

In May, the City Council held a hearing and a mostly black audience

booed John B. Mattingly, the child welfare commissioner, who had been

appointed in 2004, more than three years after the last foster child

was enrolled in the drug trials.

 

Councilman Barron invoked the specter of the infamous Tuskegee

experiments, in which black men with syphilis were studied for 40

years, beginning in 1932, but were neither treated nor told they had

the disease. Councilman Perkins warned, " This has deep racial

connotations. "

 

After the Council hearing, the Black Equity Alliance, a group of

African-American leaders, started contacting the news media to demand

a better accounting by the city. Dr. Billy E. Jones, a former

president of the city's Health and Hospitals Corporation, who is

black, said, " Nobody who has the history that our community has, has

the luxury of not being concerned. "

 

Pediatricians involved in the trials say they are mystified by the

onslaught. While powerful drugs do have side effects, many said, they

remembered no fatal reactions. At Incarnation, Dr. Nicholas said, no

child had died of a reaction and " no child ever had an unexpected

side effect. "

 

He said that, with one exception, no children had been included in

the trials without " absolute proof " by advanced testing methods that

they were infected and not simply carrying their mother's antibodies.

He said the exception was a trial that proved that by giving AZT to

pregnant, infected women and then to their newborns in the first six

weeks of life it was possible to sharply reduce the rate of H.I.V.

transmission from mother to child. He called that study " the most

important clinical trial in the history of AIDS. "

 

In response to the charge by some critics that hospitals should have

appointed independent guardians for each child, doctors said the

federal regulations require advocates only when a trial holds " no

prospect of direct benefit " for the child. Several said their

hospitals appointed advocates anyway.

 

" This isn't Tuskegee, it never was Tuskegee, it never will be

Tuskegee, " Dr. Borkowsky said. " This is something that has been blown

totally out of proportion by, I think, people who are vying for

office and looking for something to get them into the news. "

 

Columbia University Medical Center, which was found by federal

officials to have " failed to have obtain sufficient information " in

approving the participation of foster children in four trials, has

acknowledged what it called a need to improve " how information is

collected and decisions documented. " But it said investigators had

not questioned the appropriateness of enrolling children, the care

they received, the research's value or the scientists' conduct.

 

As for the city's child services agency, officials say that in all

the years since the drug trials, no family has sued or come to them

with evidence of mistreatment. Staff members, past and present,

expressed pride in what they had done; the worst thing that could

have happened, they said, would have been for the agency to have done

nothing.

 

Mr. Mattingly, the agency's commissioner, said, " I would far rather

be having this dialogue than one in which we tried to explain why my

predecessors - confronted by a medical epidemic of unforeseen

magnitude - did not do everything possible to get these children

access to promising medication because they were in foster care. Or

because the rules and regulations designed to protect their interests

were so complicated that no children got the lifesaving help. "

 

 

--

 

 

 

 

[Guest guest]

Looks like the NYTimes is working to protect Big Pharma from all directions.

 

NYTimes just did a huge story on thimerosal and neurodevelopmental

disorders. I was shocked that they were not reporting facts about the

dangers. So I looked up the Board members to see if there are any

connections to Eli Lilly or other Big Pharma, Yes.. of course there

is. I also am sending Robert Kennedy Jr's web site on Thimerosal and

the secret meeting between the CDC and big pharma... Kennedy goes into

full detail. You want the truth about whats going on, please read

Kennedys site! This is the WORST corporate crime known to human

nature, Abuse of children, some who were left severe/profoundly

disabled for life!

 

 

 

On Autism's Cause, It's Parents vs. Research

<http://www.nytimes.com/2005/06/25/science/25autism.html?hp & ex=1119758400 & en=6e0\

\

932b54736c849 & ei=5094 & partner=homepage>

 

 

 

 

The board of directors at NYT;

 

Raul E. Cesan

he became president of Schering Laboratories, the U.S.

pharmaceutical marketing arm, and in 1994, became president of

Schering-Plough Pharmaceuticals. (Im sure he still owns stock in

pharmacuticals)

 

 

Ellen R. Marram

Ms. Marram also serves on the board of directors of the Ford Motor

Company and Eli Lilly and Company. [Eli Lilly is the makers of thimerosal]

 

 

 

William E. Kennard

Mr. Kennard joined The Carlyle Group, a private equity firm, in May

2001 as a managing director in the global telecommunications and

media group.

 

 

Henry B. Schacht

Mr. Schacht also serves on the boards of Alcoa (Aluminum Company of

America), Johnson & Johnson and Lucent Technologies Inc.[Johnson &

Johnson is one of the compaines that makes rhogam that injected

pregnant women with mercury/thimerosal]

 

 

Cathy J. Sulzberger

She was also an editor of Consumer Drug: Digest: American Society of

Hospital Pharmacists and Medication Teaching Manual: National

Association of Retail Druggist, and a Consumer Editor of the Journal

of the National Association of Retail Druggists.

 

 

http://www.nytco.com/company-directors.html

 

 

Executives

 

Corporate Officers

 

 

Neal Roberts

 

Vice President, Organization Development

The New York Times Company

 

Previously, Mr. Roberts was vice president of global organization

effectiveness with Hoechst Marion Roussel, the fifth largest global

pharmaceutical company. There, he directed organization development

consulting initiatives providing services to all commercial regions

and global functions located in France, Germany and the U.S. in

support of the execution of global strategies and the cultural

integration of three merged pharmaceutical companies.

 

http://www.nytco.com/company-executives-nroberts.html

 

 

 

Robert Kennedy Jr, has been some what of an advocate about the dangers

of thimerosal, Here is Robert Kennedy Jr's website of the facts behind

thimerosal, the cdc, big pharma cover up! Some of these children are

severe/profoundly disabled from this, including my son.

 

http://www.robertfkennedyjr.com/docs/AutismHgPolitics_6_23.pdf

 

 

 

Kind Regards,

 

Donna

 

 

On 7/17/05, Sepp Hasslberger <sepp wrote:

> The New York Times just covered - I suppose 'attempted to bury' would

> be a better way to say it - the story on Incarnation Childrens'

> Center in New York drafting orphans into AIDS drug studies or

> " experimental treatments " and forcing the kids to take the drugs by

> surgical feeding tube implants. The story was investigated and

> exposed by Liam Scheff.

>

> Below is Liam's response to the NY Times.