By 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.