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Guttmacher's Billion Dollar NIH Child Health Boondoggle

GuttmacherBy Katie Wright

In what universe do you blow over a billion dollars on an unworkable, irresponsible project yet be able to keep your job and receive praise, by your boss Dr. Francis Collins, for such work?

At the NIH, of course!

Dr. Alan Guttmacher, the head of the Eunice Kennedy Shriver Institute of the NIH, has been the figurehead of the National Children’s Health Study Project (NCHS) for 12 years. Guttmacher lead almost all meetings and a major media spokesperson for the project.

We all know Dr. Guttmacher has sat on IACC- well for an endless amount for yrs- talking a great game but accomplishing nothing. It is quite a feat to sit through probably 100 hrs of autism meetings yet still remain in the dark on autism science.

Almost 2 yrs ago Dr. Guttmacher was asked to testify in front of the Congressional Office of Government Accountability. Congresspersons asked Guttmacher to give examples of treatment progress resulting from the last 10 yrs of NIH funded autism research. Conservatively the NIH has spent almost $500 million dollars on autism research. One would think that such an enormous amount of money would translate into at least 1 treatment intervention.

Well not in Dr. Guttmacher’s world! Guttmacher asserts that progress has been elusive due to lack of funding! Please, Dr. Guttmacher could have $10 billion for autism research and still manage to achieve nothing and possibly even, move the science backwards. Seriously I think if we pasted all autism grant applications on a giant wall and chose them by throwing darts, blindfolded, we would choose better projects to fund and achieve more progress than Dr. Guttmacher.

So finally Guttmacher was asked to give 1, just 1 example, of treatment progress resulting from NIH funded research- excluding early intervention and ABA. Almost 30 years ago Dr. Ivar Lovass created ABA, the premiere behavioral intervention for autism. So guess what was Guttmacher’s answer, “behavioral therapy.” I know, so funny! So the congressperson again asks, impatiently by now, “Give me an example of a treatment innovative, EXCLUDING ABA.” Guttmacher- no answer. Guttmacher has no idea what the gaps in autism treatment research even are. He could not answer the simplest softball questions.  I mean this man is so clueless, so checked out; it is little wonder he managed to lose a billion dollars of taxpayer money.

Everyone, and I mean everyone, knew that the NCHS was too big and unwieldy. But no, Guttmacher and company were greedy and ambitious to be big shots. Congress begged Guttmacher and his team to be realistic and scale down project. But no! Taxpayers and stakeholders were vigorously promised that the NIH would succeed with the NCHS endeavor and provide invaluable insight to children’s’ health needs.

The whole NCHS study outline reads like the “Spinal Tap,” of NIH programming. I think they spent more times creating snappy names for the committees than actually undertaking the work they promised to do.

The major components of the study are listed as  “Vanguard Research, “ The Main Studies,” and the “Formative Research.” Recruitment strategies are, “Enhanced Household based,” and “Two Tiered/ High Intensity/Low Intensity Based.” The research was to be, “Open Architecture,” “Modular,” and, “Interoperable.” Sounds more like a disastrous home improvement project that the valuable government funded research it was meant to be.

As if this is was all not absurd enough the NCHS was also massive planning international collaborations with the “Shanghai Birth Cohort,” the “Japanese Environment Children’s Study,” and the “French Longitudinal Study of Children.” 

“The NCHS is EXCITED to share ideas and experiences with investigators around the world to foster a learning community.” Why didn’t NCHS staff create their own, “learning community,” by talking classes on the basics of money management or responsible investing practices or even statistics? Any one of those classes would have taught the bloated NCHS leadership to scale back and get real. Guttmacher and company had no track record of undertaking a research project remotely this big. They lacked the financial expertise, they lacked consumer input and they rejected all independent oversight.

Oh wait, Guttamcher claims to have “fully enrolled stakeholders,” in the process. I looked at the “stakeholders,” list and guess what I saw? A ton of pharmaceutical companies and some professors from universities I never heard of.  The “Stakeholder” committee should have been renamed, “Friends and Pals of Guttmacher who hope to Reap Huge Benefits from the NCHS.” 

Autism Mom Ginger Taylor did some research and found that pharma invested $336,000,000 towards the NCHS. In essence pharma paid for approximately 20% of the project. Presumably they want to construct opportunities to create more demand for their products by pathologizing physiological reactions to environmental toxins. It has been a very successful strategy thus far! Just look at the percentage of kids on ADHD meds! Look at Gardisil- a many billion-dollar blockbuster drug for a condition that is 100% preventable via yearly pap smears.

But let me take a different tack. For the sake of the argument let’s hypothesize that pharma really does want to tackle the causes of the horrendous state of health among American children. Let’s argue that pharma really wants to make good products, safe products that help kids. OK, if you felt strongly about the safety and importance of your products wouldn’t you want them to be studied? Wouldn’t you welcome the opportunity to demonstrate that your products have little to no ill side effects?

Ok so why was the elimination of the collection of adverse vaccination reaction data one of the first cuts to the study? Surely within that $336,000,000 ten million or so could be spared to ask moms a few simple questions and add immunization records to the data. I mean, Guttmacher wanted the perinatal genotyping! All sorts of wildly impractical and excessively expensive elements of the study were funded, but not adverse vaccine responses.

The National Children’s Health Study is an unmitigated disaster. My cat could spend money more responsibly.

The very least, the very, very least, taxpayers and stakeholders have a right to expect is accountability and transparency into this NIH catastrophe. Dr. Guttmacher should resign immediately and a congressional committee should be created to ensure that such an ill-considered vanity research project never happens again.

Katie Wright is Contributing Editor to Age of Autism.

Comments

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Eben Plettner

Dr. Guttmacher of the NIH and IACC has told congress that a treatment has been elusive, yet Dr. Theoharides has been showing one that works and asking for funding for over 4 years.

Dr. Theoharides and others have done clinical trial showing how effective Luteolin is and how the prescription form is even more effective, yet the NIH will not fund this.

Ginger Taylor

Correction... Jennifer Stella of the Vermont Coalition for Vaccine Choice was the one who found the hundreds of millions donated to NIH Foundation in 2011. I just reported it.

Jenny Allan

Dr. Guttmacher. "In terms of therapy, in terms of behavioral interventions and other kinds of things that are being---they're emerging, that are being developed,

...in terms of something like a medical therapy, I think we're much farther away from those kinds of interventions, though one would hope that eventually we would have those to offer as well."

Being UK based, I don't often comment on purely US issues, but I find this blatant ignorant waffle to Congress on the part of Dr Guttmacher quite shocking. Quite apart from the waste of $billions of US taxpayers' cash, (although the Big Pharma investment is certainly paying dividends,with all those Ritalin and Psychotropic drugs prescribed to autistic children).

I have used Godfrey's accurate transcript extract, no less shocking than Katie's memory recall:-

The only 'medical interventions' my poor Grandson got, were those administered at the Royal Free hospital, London. under the overall care of Professor Walker-Smith, 1998-2002. These included dealing with an impacted colon, without which he would likely have ended up with a colostomy bag. At that time my Grandson had not been officially diagnosed autistic. His medical care was purely for his gut problems. After the 1998 Wakefield et al Lancet paper and its terrible aftermath, the special clinic at the Royal Free was disbanded by the incoming UCL Medical Director, who also got rid of Dr Wakefield. Prof Walker-Smith retired and Prof Murch was sent to another hospital. (Thanks a bundle Prof Mark Pepys). It was another 5 years before these 3 good men were dragged before the GMC and another 3 years before all three were found guilty. Prof W-S won his subsequent High Court Appeal, but Dr Wakefield could not afford the huge costs, without insurance cover. Prof Murch was allowed to keep his medical licence to practise.

The NHS prescribed gluten/casein free diet worked wonders and enabled my grandson to attend a normal school class, with some extra targeted help. His 'challenging behaviour' was plainly caused by the physical pain he felt and still lives with. At that time this dietary intervention was very expensive and not widely available; the not quite coeliac condition was very rare. Now every supermarket has a large 'free from' display and children with restricted dietary requirements are prolifering, along with autism, diabetes, asthma and a plethora of allegies and auto immune conditions.

Whilst Guttmacher was spending his $millions on God knows what useless research, and perfecting his waffle, desperate parents of autistic children, were networking and sharing their own experiences and ameliorating interventions, including restricted diets. Since these were and still are effectively regarded as 'alternative' therapies, they are targeted by the pro-vaccine lobby and called 'quackery'. Several media and press 'health pages and programmes' accused parents of denying children essential calcium, by restricting dairy foods. This is complete rubbish; calcium is a common element and is present in meat, fish, eggs and vegetables, all of which are permitted on a GF/CF diet. It is vitamin D which is essential for healthy bones. Because this malignant propaganda is mostly written by doctors, no doubt 'sponsored' by Pharma industries, it is unfortunately believed by members of the public.

Recently a UK mother of a profoundly autistic adult son was found guilty of Munchausen's Syndrome by Proxy, (Factitious Disorder), in a Court of Protection. Amongst other (admitted in court to be completely harmless) interventions, her adult son was fed a GF/CF diet and administered daily probiotics.

We now have a situation where Big Pharma is seeking to profit from these same interventions. An infamous Forbes article by Emily Willingham blames Dr Wakefield for the complete lack of any medical care for the (now admitted) autistic children with bowel problems, during the 16 years subsequent to the 1998 Lancet paper. Who the hell is she kidding?

Recent official press releases from the medical mafia, also now appear to endorse the 'quackery' we have all been using to help our medically neglected children. However, these are miraculously presented as recent discoveries. Watch this space.

david m burd

Linda1,

The past many years I've posted here annual "flu-associated" deaths (also known as ILI, 'influenza like illness') from Canada, with comparison to the U.S. Both Canada via 'FluWatch' and the U.S. via 'Fluview' have the exact same reporting protocols, apples to apples.

You can easily access Canada's FluWatch Weekly Reports going back 7-8 years, as you can also easily access the CDC's Fluview Weekly Reports.

At any rate, the typical annual pediatric flu-associated mortality in Canada documents to one (1) a year of kids having prior good health. Usually, there are 2-3 additional deaths of those having very serious co-morbidities. Whereas the the U.S. CDC reports (per capita) about four (4) times to six (6) times as many annual pediatric flu-associated deaths if kids having no other prior serious health problems. Of course, here in the U.S., a huge percentage of our kids are now chronically afflicted, but I try to compare apples to apples..

Guess what? Canada's parents virtually all refuse flu shots for their kids; whereas over 50% U.S. parents have their kids take the flu-vaccine injections. Maybe our legions of overpaid scientists at NCIRD (that you specifically cited) might pay attention to what goes on in Canada? Or Australia that rarely registers even a single flu-associated pediatric death? Or European countries also having rare pediatric-flu deaths? There's not a chance in Hell NCIRD analyzes anything but their own fat budgets and salaries, and yes, genetics.

Barry

" Of course he disregards all the toxic effects of vaccines; his mind is totally closed."

**************

Which is exactly the way it's being paid to be.

Benedetta

Godfrey 1986 - Congress gives pharma and the medical profession a free ride and they upped the number of boosters and invented as many vaccines as they could for diseases that were unheard of, or treatable here in the good o'le United States -- with a clause that said research would continue into why there was vaccine injuries.

And sooo you go to the archives of the last Congressional meeting and you give me the extact quote from 2013.

All we got baby is ABA.

Mine did not even have that - I and my Mother did it. We dug out our tricks of the education trade that we knew in the late 1980 and 90s - and we listened to the speech and physical therapists tricks of the trade then too.

I have seen poor parents of the late 90s and early 2000 pay out good yearly salaries; even divide up the family as they travel to big cities to get this ABA help -- that they could have done on their own - because people like Gutless Guttmacher sits around in their meetings and recommends ABA like it is really something and if the parents just find those trained in ABA why their kids will become engineers or something.

Do you really think they have new tricks as of late in this new century -- or do you think they have a new name for old tricks of teaching??? ABA indeed.

Tricks in wording, tricks in claiming treatments in behavior but not medical -- all tricks - all blather -- all tricks -- you too -- all tricks of hiding the peanut in under which small switch a roo cup.

Twyla

With Dr. Alan Guttmacher in charge, no wonder nothing got done. His responses at the 11/29/2012 Congressional Oversight Committee hearing on the "Federal Response to Rise in Autism Rates" were mealy-mouthed, evasive, and pathetic.

Another part of the hearing that stands out in my memory is when Rep. Patrick Meeham interviewed Dr. G on whether there is any sense of urgency, anything being accomplished, and Dr. Guttmacher says that if Congress isn't happy with the IACC, Congress should do something, and that there has been an "acceleration in progress".

Beginning at 1:19:20 here:
http://www.c-span.org/video/?309672-1/federal-response-rise-autism-rates
The video takes a while to load/buffer.

No specific accomplishments to point to, but he sees an "acceleration in progress". What kind of bull is that?

Linda1

"this 10 year effort which has found exactly nothing ??? "

Or, they found exactly what DeStefano, et al, found, and more.

Check out this organizational chart of the NCIRD (National Center for Immunization and Respiratory Diseases). There is a whole division devoted to influenza, another to immunization, another to viral diseases, another to bacterial diseases. There are advisors on top of advisors on top of communications people and no shortage of scientists on the payroll. Want to know why there is so much disease mongering and so much money spent? Here's a clue. These people have to do something with their time. What could they be doing every day? Is influenza so much of a puzzle that they need a whole division of full time employees, year round, year in and year out, and this is just the people at the top.

http://www.cdc.gov/ncird/downloads/ncird-orgchart.pdf

Is influenza more of a threat than autism? Where is the autism division? Who in this organization is responsible for determining and reporting to the public the results of this division's work and recommendations? Who is responsible for following the short and long term health consequences of the immunizations and for reporting those findings to the public?

cmo

Out of 1+ Billion dollars, how much of that effort has gone beyond a "30 second DNA cheek swab" for any given child ???

How much Dr./ patient office time has been given to any child with this 10 year effort which has found exactly nothing ???

John Stone

Hi Godfrey,

Yes, it looks like we've got Katie's memory rather than the transcript, on the other hand the picture is substantially the same. I don't know what "emerging" behavioural therapies we have as opposed to therapies that I remember being introduced to nearly 20 years ago long before the NHCS was even initiated. So I think the point that Katie makes is essentially correct even if the detail is not accurately recalled because what Guttmacher said was misleading or even untrue in just the way Katie indicated. The achievement of the NIH in this period over autism is zero. It is like watching a sports team paid to throw the match.

Godfrey Wyl
"Almost 2 yrs ago Dr. Guttmacher was asked to testify in front of the Congressional Office of Government Accountability. Congresspersons asked Guttmacher to give examples of treatment progress resulting from the last 10 yrs of NIH funded autism research."

Assuming the reference is to the November 2012 hearing before the House Committee on Oversight and Government Reform (there is no "Congressional Office of Government Accountability"), I can find nothing in the transcript that corresponds to Katie Wright's description involving an exchange culminating with "Give me an example of a treatment innovative, EXCLUDING ABA."

On page 60, the following occurs:

"Mr. Matheson. I'm not a statistician. I just see a big difference in numbers. So it would be helpful if we could understand why that number's different.

"In my limited time I'd like to ask one other question. Can any of you tell me about any new therapy approaches that are emerging for effectiveness in treating autism?

"Dr. Guttmacher. In terms of therapy, in terms of behavioral interventions and other kinds of things that are being---they're emerging, that are being developed, in terms of something like a medical therapy, I think we're much farther away from those kinds of interventions, though one would hope that eventually we would have those to offer as well.

"Mr. Matheson. Thank you, Mr. Chairman. I'll yield back."

Bayareamom

..."Whoever controls the information...controls the agenda."


That's right...and there it is.

jen

Linda1, I hope Congress addresses this happening- or non-happening by the NIH.

Linda1

Here you go, folks. In the "news" today: "Life Expectancy Increases by Six Years". That's right. You know how they know that? Because they have analyzed THE WORLD'S POPULATION:

"The study was published Wednesday in the journal Lancet. It is part of an exhaustive analysis known as the Global Burden of Disease Study done by an international team of more than 700 researchers led by the institute. It was funded by the Bill & Melinda Gates Foundation."

It's just impossible to analyze the health of America's children, even after spending $1.2 billion to do it, but no problem to analyze the health of every citizen in 188 countries.
------------
"The study analyzes yearly deaths from 240 different causes in 188 countries from 1990 to 2013. The last such report was published in 2010. Governments use the data to make policy decisions; scientists use the data to decide what areas of medical research to pursue; and donors use the data to decide which areas of global health they should support.

The Lancet study “is based on an unprecedented amount of information that has been crunched using very sophisticated tools,” said Igor Rudan, global health expert at the University of Edinburgh, who wasn’t involved in the Lancet study. “In an information-based world, whoever controls the information controls the agenda.'"
---------

Whoever controls the information...controls the agenda.

http://www.msn.com/en-us/health/wellness/life-expectancy-increases-by-six-years/ar-BBgVUUn

cia parker

Beth,
I would make it Perpetuating the Autism Epidemic: How the NIH, DHSS, IACC, and America's Public Schools Have Failed Our Children. In eight years the public school did NOTHING to help my autistic daughter. A para and the standard language therapy, half an hour twice a week, that was all. Putting her in groups and telling her to have at, converse, when she had never ever said a complete sentence independently. In November the speech therapist said that they were working on greetings and farewells, because my daughter still very rarely even says Hi! How are you? Until we did it in ESL work at home last year, she had never used a prepositional phrase like in the box or on the steps. Never said There it is! much less anything else. And yet, rather than recognize that the problem was severe brain damage caused by at least the hep-B vaccine (encephalitis) and the DTaP booster (wiped out her few words, diagnosed with autism two months later), they insist the language structures are there, she just doesn't want to use them from "social anxiety." Not a single textbook developmentally appropriate for her that she could read, understand, do exercises using, and be tested on. Nothing. The logical thing would be intensive instruction using English as a Second Language techniques, because the inborn language structures in the brain that Chomsky described so brilliantly were severely damaged by vaccines and extensive intense work with demonstration, set-up situations to practice each discrete small structure, and real-life practice with peers would work, but it would require a new mindset and a new system. This is the theory behind ABA, and it would work, but applied specifically to language and extending over many years in all probability. They could use textbooks written at an easier level with colored photos and pictures, and appropriate work. Ten facts to learn for every section. My daughter could have done that, learned, and progressed, but instead was given typical materials, very complex by the eighth grade level, completely beyond her ability to comprehend on any level, and the para was told to explain it to her. They could have a formal program for Relationship Development Intervention, to create a friendship with the therapist/teacher and the group, which would do projects and play games which required the student to use spoken language for its usefulness.

I have learned that the underlying philosophy impelling this idiocy is that for the last ten or twenty years the trend has been to an inclusive classroom for special ed students. The autism resource specialist told me a month ago that while Cecily would have learned more academically from the old-style special ed set-up which used materials adapted to the students' comprehension level, the new philosophy believes that it is more important to expose all students to the typical experiences of the normally-functioning. Great. Without the ability to use language, my daughter can't understand what other people say or why, can't contribute anything at all, can't do any of the work independently. So she had breakdowns in class, and their solution was to put her with a computer to do PLATO! online learning lessons for typical middle-schoolers, not adapted to her comprehension level at all. And didn't notice for four months that she understood nothing until she failed all the tests in May. Their other recourse is the officially-condoned policy of giving her as well as all the special ed students unable to do anything in typical classrooms As and Bs on their report cards just by a stroke of the pen, look at Ds and Fs magically transformed!

The schools have done NOTHING and refuse to even listen to new ideas, I assume because they would have to allow the question of what happened to cause all this severe brain damage in the last generation. The next step would have been high school, more typical classes Cecily could understand nothing of, but with a new addition! The STEPS program would have transported her to a hospital to see if maybe they might be more successful in teaching her to fetch and carry, to prepare her for employment. I said she's developmentally delayed more like a much younger child, she should have a school program designed to teach her basic knowledge, use of language, and, after that, social skills. Their innovative new program is apparently to whitewash the modern equivalent of sending kids to work in the coal mines, a program created because NOTHING they have used so far has been of any use at all.

david m burd

Laura, I agree with you, but only used "dr." as it may be helpful when searching Guttmacher on internet sites. Actually, I think "mr." is too polite. His claiming the title"pediatrician" is such a whopper, though he does fit the description of most who blindly follow The Schedule.

Interestingly, Guttmacher has no children - and clearly treats them all like laboratory numbers, devoting his time to studying their genomes, and writing gibberish to impress NIH Chief Collins, to thus obtain another $100 million or so from flimflammed Congress (excepting heroes like Posey and Burton and Issa and Murphy and a few others).

Autismmom

What is so difficult about conducting a national study on Children's health. In 2013, the EPA published it's third report on children's health called "America's Children and the Environment" (ACE) here is the link to the reports key findings: (scroll to health section):

http://www.epa.gov/ace/keyfindings.html

Linda1

"his mind is totally closed."

And his pockets are totally open.

Remember at one of the hearings when a congressman, I don't remember which one, was raking a woman from the GAO over the coals as she presented to Congress the GAO Report that concluded the IACC was wasting money? He accused her of being obstructive to science and in particular, science that benefits children. What, if anything, will the GAO do with this massive theft?

Laura Hayes

Thank you, Katie, for this excellent summary of government fraud committed against taxpayers, children, and most especially, against vaccine-injured children, who now number far too many to count.

Only one correction I see that needs to be made: Mr. Guttmacher (I refuse to call him a doctor, one who first, does no harm, as he has inflicted vast harm by not immediately calling for a halt of our nation's clearly-toxic-and-dangerous vaccine program, by refusing to study the myriad of horrifying effects of vaccines on infants and children, and by wasting over a billion dollars that could have been used with purpose and for good) should not resign...HE SHOULD BE FIRED, jailed for misuse of taxpayers' money, stripped of his medical license, and be vaccinated on a daily basis while in jail.

Benedetta

Katie writes great - just like I feel - after so much frustration -that goes on and on and on because of people that are uncaring and appears to be stupid (but not just to busy caring about themselves and nothing about the people they serve) sarcasm is a good tool and well called for.

Patrick

When you think about it the NIH probably gained another 1.2 billion to stop the study. Adding up the contributions from Merck, Novartis, Pfizer, Ely Lilly and Gates over the past 3 years didn't they make a combined 1.2 billion dollars of funding to the NIH?

Beth

Katie, you should take all of your posts here on AoA and compile them into the next Skyhorse Publishing book.

Perpetuating the Autism Epidemic
How NIH, DHHS, IACC Failed America's Children

What a tragedy.

John Stone

Guttmacher seems to have arrived at NIH in 2009, the same time as Collins. As previously noted Collins had already worked out in 2006 that the rise in autism was real and could not be accounted for by genetics but was resolved on the perverse course of focussing on finding out which genes were susceptible rather than what was doing the poisoning. Guttmacher on the other hand is just waffling years later.

It also sounds like the bluster of Michael Rutter the UK's leading paediatric psychiatrist in to Private Eye 2005 - despite being head of the profession for 30 years he did know whether the rise was real or not.

http://www.bmj.com/rapid-response/2011/10/30/further-bemusement-sir-michaels-role-vagueness-and-certainty

This was only capped in its inadequacy by Prof Uta Frith maintaining that the increased popularity of the diagnosis was down to the film Rain Man:

http://www.ageofautism.com/2013/01/utter-froth-autism-epidemic-caused-by-the-film-rain-man.html

But what action would you take if you were a decent competent professional, already used to diagnosing autism, but suddenly seeing 30/40 times as many cases perhaps?

david m burd

Dr. Alan Guttmacher responds in a NY Times interview April 26, 2010:

Q. AUTISM IS PART OF YOUR INSTITUTE’S PORTFOLIO. IS IT, AS SOME THINK, AN EPIDEMIC?

A. Depends on how you define “epidemic.” We have new estimates from the C.D.C. showing that 1 in 110 children develop something along the spectrum of conditions that we call autism disorders. That’s higher than previously thought. Is it really more common than it used to be? Or, are we just getting better at recognizing it? The jury is still out.

For us here at N.I.C.H.D., a research priority is to find out more about the biological roots of the different types of autism. Understanding that will help with finding effective treatments because what works for one doesn’t necessary work for all. Fortunately, since we now have the human genome mapped, we’ll be able to move faster. Many of the different types of autism are either genetic or triggered by environmental factors and a genetic predisposition. (End of quote).

An easy search reveals Guttmacher's entire career has been focused on genetics, with no recounting whatsoever he actually practiced hands-on with children. Yet, he always includes the credential "pediatrician" in self-descriptions, thus fooling people as to genuine experience. EVERYTHING in his bio is focused on genetics - zilch as a practicing physician.

Or course he disregards all the toxic effects of vaccines; his mind is totally closed.

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