Damned Heretics

Condemned by the established, but very often right

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Qualified outsiders and maverick insiders are often right about the need to replace received wisdom in science and society, as the history of the Nobel prize shows. This blog exists to back the best of them in their uphill assault on the massively entrenched edifice of resistance to and prejudice against reviewing, let alone revising, ruling ideas. In support of such qualified dissenters and courageous heretics we search for scientific paradigms and other established beliefs which may be maintained only by the power and politics of the status quo, comparing them with academic research and the published experimental and investigative record.

We especially defend and support the funding of honest, accomplished, independent minded and often heroic scientists, inventors and other original thinkers and their right to free speech and publication against the censorship, mudslinging, false arguments, ad hominem propaganda, overwhelming crowd prejudice and internal science politics of the paradigm wars of cancer, AIDS, evolution, global warming, cosmology, particle physics, macroeconomics, health and medicine, diet and nutrition.

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Many people would die rather than think – in fact, they do so. – Bertrand Russell.

Skepticism is dangerous. That’s exactly its function, in my view. It is the business of skepticism to be dangerous. And that’s why there is a great reluctance to teach it in schools. That’s why you don’t find a general fluency in skepticism in the media. On the other hand, how will we negotiate a very perilous future if we don’t have the elementary intellectual tools to ask searching questions of those nominally in charge, especially in a democracy? – Carl Sagan (The Burden of Skepticism, keynote address to CSICOP Annual Conference, Pasadena, April 3/4, 1982).

It is really important to underscore that everything we’re talking about tonight could be utter nonsense. – Brian Greene (NYU panel on Hidden Dimensions June 5 2010, World Science Festival)

I am Albert Einstein, and I heartily approve of this blog, insofar as it seems to believe both in science and the importance of intellectual imagination, uncompromised by out of date emotions such as the impulse toward conventional religious beliefs, national aggression as a part of patriotism, and so on.   As I once remarked, the further the spiritual evolution of mankind advances, the more certain it seems to me that the path to genuine religiosity does not lie through the fear of life, and the fear of death, and blind faith, but through striving after rational knowledge.   Certainly the application of the impulse toward blind faith in science whereby authority is treated as some kind of church is to be deplored.  As I have also said, the only thing ever interfered with my learning was my education. My name as you already perceive without a doubt is George Bernard Shaw, and I certainly approve of this blog, in that its guiding spirit appears to be blasphemous in regard to the High Church doctrines of science, and it flouts the censorship of the powers that be, and as I have famously remarked, all great truths begin as blasphemy, and the first duty of the truthteller is to fight censorship, and while I notice that its seriousness of purpose is often alleviated by a satirical irony which sometimes borders on the facetious, this is all to the good, for as I have also famously remarked, if you wish to be a dissenter, make certain that you frame your ideas in jest, otherwise they will seek to kill you.  My own method was always to take the utmost trouble to find the right thing to say, and then to say it with the utmost levity. (Photo by Alfred Eisenstaedt for Life magazine) One should as a rule respect public opinion in so far as is necessary to avoid starvation and to keep out of prison, but anything that goes beyond this is voluntary submission to an unnecessary tyranny, and is likely to interfere with happiness in all kinds of ways. – Bertrand Russell, Conquest of Happiness (1930) ch. 9

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The Times does its best to cool off the Incarnation charges

The New York Times finally caught up with the Incarnation Center Unauthorized AIDS Drug Tests on Orphaned Tots scandal today (Sun Jul 17). The long story kicks off below the fold on the front page, headlined Belated Charge Ignites Furor over AIDS Drug Trial followed by copy which takes up almost the entire page 29.

The AIDS skeptic email lists are already shrieking “Front page attack on Liam Scheff” but to any mainstream AIDS believer, ie most of the Times readership, doubtless it will appear fair in its very lack of balance. The account gives both sides a run for their money, but allows the established researchers and officials the final say, and they claim with pride that the experiments only benefited the children, and that any objections to their use as guinea pigs without proper permission is therefore beside the point. In other words, no reason for Times readers to take all this too seriously, just some dust stirred up by an outsider.

To Scheff and his supporters, on the other hand, this belated coverage despite its prominent placement looks more like an attempt to “bury” the story rather than honor it. It is egregiously misleading, Scheff points out in a furious but polite letter to the Times, in honoring AZT as a “life saving drug” when in fact it has been recognized as a supremely toxic medication.

In a way, the article is a classic specimen of mainstream media AIDS reporting in that it is a litmus test of where you stand in relation to AIDS ideology and the merits of AIDS drugs. It simply reads very differently depending which side of the fence you are on.

Here is the entire story:

(show)

The New York Times

July 17, 2005

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.”

Judge for yourself, but the coverage of the facts overall is in fact quite complete, we would say, except for the omission of the scientific literature which flatly contradicts the claims of the researchers. Certainly the report makes it clear that the researchers have already been found guilty of breaking the rules. We give it a B.

But to any AIDS skeptic it will seem that the reporters are biased ie are much more likely to credit the statements of officials than the research of Lim Scheff, the young independent reporter who first broke the story, whom they diss rather mercilessly.

Unlike the official sources, Scheff is not quoted verbatim beyond a single phrase, and his research is disparaged as being without official documentation. The story outlines his basic AIDS skepticism in fairly cheap terms as follows, making no mention of any scientific literature Scheff might have read. Indeed, it implies that his judgments are based on pure anecdote ie a few HIV-positive men he knew.

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.

Certainly the Times reporters go out of their way to emphasise that Liam Scheff is himself an orphan, institutionally speaking. Their lengthy treatment is introduced by a sort of post modern meta analysis of the way the story reached the mainstream press via a “single writer” on the Web, with various remarks suggesting that it is for that reason rather unconvincing and therefore the Times reporters and editors should be excused for ignoring it until the BBC, the New York Press, the Post and finally the City Council and the rest of the Manhattan press took it up.

In the same spirit, the introduction to the piece almost exonerates the suspect AIDS researchers before telling the reader any of the accusations. Thus they write the lead as

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.

Later they write

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.

In their apparent anxiety to justify the Times’s lethargy the reporters on the story (Janny Scott and Leslie Kaufman are credited) here have gone too far, according to Scheff, the “single writer” referred to. Scheff is mad as hell and has written a strong letter to the public editor of the Times putting the facts of the case.

He writes to the Times

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.

Here is the whole letter, which adds the point that the BBC documentary producer, the Post and other publications that have carried the story before the Times (including the New York Press, in particular, which broke it on the New York City scene, but which is not mentioned by the Times) have their own fact-checking, that two sources confirmed to Scheff there were two deaths in the study, contrary to the memory of the researchers quoted, and he provided one of them to the Times reporters, he says, and so on.

As we mentioned Scheff also makes the point that celebrating AZT as a life-saving drug is the reverse of the truth:

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.

The whole story attempts to bury his claims, in Scheff’s view. He ends as follows:

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.

The letter can be found at http://www.gnn.tv/blogs/7473/NY_Times_To_The_Rescue”>NY Times to the Rescue”, Scheff’s blog:

(show)

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

Of course, this complaint would have had no effect on the Times before the age of the Web, but now, well, let’s see. Can the blogosphere force the Times to respond? What letters will it print? Those who object are writing to The Public Editor (public@nytimes.com).

The Times reporters bias the story in the very first paragraph with the phrase “doctors obtained permission”:

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.

The whole point of the scandal is that researchers allegedly did not get valid permission to use the unfortunate tots as guinea pigs from anyone properly serving as guardian of their interests.

But we sense that the cosiness of mutual respect and admiration between the Times reporters and the medical researchers involved, who are now in prominent positions, colors the vision of the reporters and weakens their investigative resolve to a vanishing point.

Whatever the reason, the rest of the story is laden with the upside down self-justification of the researchers who being later convinced of the benefits of the AIDS drugs involved now argue that they were benefiting the children even though they didn’t know beforehand the outcome of the experimental doses, and that this justifies their highhanded treatment of the defenseless infants for whom they had no other medications.

This kind of logical short circuit is typical of AIDS, where the original testing of AZT was cut short before the results emerged because the testers were convinced by their imaginations that it was benefiting the patients and therefore it would be wrong to continue to give mere placebos to the control group.

The result according to the best scientific literature was the large number of early AIDS deaths which only tailed off when AZT doses were drastically reduced (protease inhibitors are now credited for the outcome, but in fact were introduced two years after the improvement began).

All in all, the Times story with its reassuring “this is not anything to worry about” slant and its concomitant insults about Liam Scheff’s lack of research to back up his initiating report suggests two ongoing problems at the overconfident paper.

The first is that apparently a fact checking department is an urgent need on 45th Street, one which employs people who can read science.

The second is the peculiar lack of investigative testosterone which marks its performance in certain areas. For some reason the newspaper often behaves like the member of a club loathe to confront fellow club members with anything difficult. This is exactly the gap that the iconoclasts of the Web like to ride through.

Apparently this Times collegiality applies to the medical profession and the researchers in AIDS who the story indicates seem far more credible to the Times reporters than the lone “single writer” who raised the alarm on their activities. This, in spite of the fact that the federal authorities have already confirmed his major complaint that these ugly drugs were forced on tots without proper permission.

But then, the Times has long given the scientists of AIDS a free pass, so this is nothing new.

The article ends with paragraphs that are comforting or dispiriting according to whether one’s assumption is that AIDS drugs are helpful or damaging, and AIDS ideology is valid or not.

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.”

In other words, the mental framework in which the events at Incarnation are viewed governs one’s reactions to them, and as long as the reporters and editors of the Times join with officials, parents and researchers in putting on the same mainstream spectacles, every story the paper runs will have the same bias, tending to discredit any challenge.

In this fellow traveling attitude the Times is committing a cardinal sin against the principles of good journalism. There is really no excuse for it being in bed, ideologically speaking, with the scientists and medical researchers in AIDS who have flouted the clear conclusions of the most intensely reviewed scientific literature of their field for over two decades.

One Response to “The Times does its best to cool off the Incarnation charges”

  1. Eugene Weixel Says:

    I’m a veteran child protective worker at New York’s ACS and I am trying to not let the outrage over ACS’ forced foster child drug trials fade away.

    Yesterday was the anniversary of New York City Council’s gumb banger about the torture of these helpless poor and minority kids. Also around a year ago ACS honcho Mattingly defended the trials and announced an investigation, which seemed to satisfy all.

    What the heck ever happened to that investigation?

    I have a blog that has articles on this topic –

    http://www.fatoldjewishguywholivesintheprojects.com

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