IACC: They Had to Have it Their Way
By Katie Wright
When the IACC committee members were choosing outside scientists and parents to help inform their research plan, one would think they would reach out to different thinkers with diverse areas of expertise. Why create yet another sub-committee if IACC is only going to pack it with clones? How will such an endeavor expose IACC members to innovative points of view or under-represented research opportunities? It won’t, but maybe that was the point!
Lyn Redwood and Lee Grossman nominated Dr. Bryan Jepson for the “What is causing autism committee.” Dr. Jepson is a father of 2 boys on the spectrum, published researcher, author and full time clinician at Thought House, a clinic treating ASD kids with medical problems. Fairly perfect credentials, right? But no…Team PreHistory, Insel, Landis, Singer, etc. all rejected this father and physician in favor of Dr. Matt State and Dr. Lars Perner, I suppose because genetics is such an under-represented area of autism research. Team Insel did not want to include a DAN! physician who actually treats autistic children everyday. No, Team PreHistory had to have Matt State and Lars Perner.
Neither Sell nor Perner bothered to take part in yesterday’s conference call. Well to be fair, Perner joined the call in the final 15 minutes and said nothing.
It seems to me, and I am sure many other families, that if you nominate someone to serve on this very important committee, that they actually a) want to do it and b) are committed to showing up. Bryan Jepson would have made this a priority and would have been an active participant and contributor to this committee. Listen, we are ALL busy and our families don’t want to hear excuses.
Story Landis could have seriously used the help of Bryan Jepson. Landis was the panel chair and was almost instantly lost amongst procedural points, current autism research content and the purpose of the committee. Landis may be a great steam cell scientist, I don’t know. But I do know Landis seemed frequently confused, exhibited little knowledge of both autism, as a disease and the current research literature. She was a very poor choice.
When the panel was discussing filling in gaps in the research there was tremendous confusion, confusion that went on for 20 minutes. I know, why? Every parent knows what the gaps are. Somehow Landis detoured into a discussion of Fragile X and Retts. This is probably the ONE area of autism research that has been wildly over-represented in terms of both money spent and number of ongoing studies. Then someone (very frustrating because people did not say their names prior to speaking, as they had been asked) said what about regressive autism? Bingo! Thank you to whoever said that. Then another panel member said something about there now a lot of studies on regressive autism. In what universe? Landis responded that she would put regressive autism on the plan temporarily but then she might remove it because IACC could discover this area is already well researched and drop it as a priority. What?
OK, how far under a rock do you need to live to know that regressive autism is a sorely neglected area of autism research. Sure, not every scientist would know this but the chairman of an IACC subcommittee? Aren’t the gaps in autism research obvious? If you don’t have Fragile X, Retts, aspergers or HFA, mainstream researchers are not that interested in your problems and the other 80% of the autism population. Autism research has been conducted like an AIDS committee who focused all their research endeavors on how hemophiliacs’ contract AIDS while ignoring the gay community.
Thanks to Lee Grossman and Jeff Sell for supporting the vax/unvax proposal. There was a very funny exchange when Lee said that the public overwhelmingly wanted this study done. Landis jumped in and said, “No, no, no. not 100%...there were one or two responses that said no vaccines, more genetics.” OK, Landis, 95%. Quit splitting hairs and wasting our time. This is the kind of bureaucratic, biased leadership that caused IACC to take 2 YEARS to make a strategic plan, when it should have taken two months. Landis suggested more baby sibs research. For God sake’s enough of that. Unless we are doing a vax/ unvax sibs study, no more baby sibs research, ever, enough. And please no more crowding into the National Children’s Study either! That project is already a cumbersome monster studying 1,000 issues, if we add more specific vaccine components we will NEVER be able to separate out the findings. We need independent vaccine research safety studies, not more NIH/CDC projects. Haven’t we been down that road 100 times already? Isn’t it time for innovative scientists, with no conflicts of interests, to have an opportunity at vaccine research. That is what the public wants.
Landis and Craig Newshaffer (AS) sadly, argued that it is premature to study the vaccine schedule. It was premature 20 years ago, now it is imperative! This was hardly a surprise from Landis, but extremely disappointing to hear from Newschaffer. I know he has an affected child and am shocked that Craig fails to see the urgency of this issue. Yes, Craig’s research has disputed the hypothesis that multiple vaccines are a possible trigger, his child did not regress but surely he must see how many children have? Craig argued that such a study would get lost in politics and that we should stick with other research for now. Big, big mistake. It took IACC 2 years to make a plan; it will probably be another 2 years to fund research, maybe another 2 years after that to form a new IACC and so on. In that time autism will be affecting 1 in 50 kids! This idea that we have all the time in the world and can’t study the vaccine issue now because some people can’t handle it astounds me. This failing of our families was a shame because Craig, unlike other panel members, was actually well prepared for the meeting and contributed many good ideas and insights.
Jeff and Lee initiated a harmless discussion about why sibs are more likely to be a risk for autism and why it might be important to identify why an adverse vaccine response could put them at additional risk for autism. Landis immediately jumped on them to say that being unvaccinated could be placing siblings at risk for autism. What? Landis, the purpose of these panels was to get OTHER points of view, not for the IACC members to take up time re-iterating their long-standing, bizarre, unscientific and embarrassing biases. However, Robin Hansen rivaled Landis in the wacko theories department. When Lee asked about studying a modified schedule for kids with immune problems, Hansen argued that “dragging out the schedule” was dangerous. Right, giving the MMR at 18 months rather than 12 would be a huge catastrophe. Hansen argued that it is far better to risk over-burdening a fragile toddler’s immune systems for nearly extinct diseases like rubella and mumps than to “drag it out” playing it safe. I don’t even know what to say about that, her reasoning speaks for itself.
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Alison Singer moderated “How Can We Understand What is Happening” committee and it was just as bad. First there was a 25 minute conversation on what “nonverbal” means. I’m totally serious. Someone actually said that maybe some autistic kids don’t speak “because they don’t want to communicate.” So frustrating.
When I think of “what is happening” in regards to autism I think, “Why do so many kids lose all their speech? Why do they develop rashes all over their bodies? Why did my son have febrile seizures after receiving 7 vaccines? What is in those vaccines? Why do many toddlers suddenly develop horrific GI disease while regressing?” How did my son go from ‘I love you Mommy’, to a few months later no longer recognizing me? It took almost the entire 2 hour session in order to bring up the word “regression.” Then Manny Bloom said he was suddenly interested in the unusual amount of ASD parents with autoimmune disease. Wow, newsflash! I suppose it will be another 10 years before this team gets around to noticing GI disorders.
Thanks to David Amaral for repeatedly referring to the autism community’s feedback. Amaral was the only panel member interested in this topic. Amaral said that the panel should be responsive to the very strong and very clear message the public was sending in terms of demanding more environmental research. Silence. Then the discussion deteriorated into “why the public doesn’t get it!” Right, that is the problem. I have a radical idea. Rather than going down the “families are wrong, we know better route,” why not actually include a parent with that point of view on the panel! It is called diversity, Insel, try it sometime. Instead all panelists were in a massive groupthink mode, convincing themselves that the public’s frustration with IACC’s refusal to fund vaccine or adjuvant research is merely the result of bad PR and faulty public perception. Naturally, Team PreHistory’s hand chosen parent participants had ZERO to say on this subject. I think that was the most disappointing moment of all.
Why didn’t the panel open up to callers? Why didn’t the panel want to hear from parents with scientific knowledge? Lyn and Lee recommended long time pioneering parent advocates with extensive environmental science experience, parents who lead non profit research and service orgs: Laura and Scott Bono, Peter Bell, Theresa Wrangham, Wendy Fournier, Lisa Ackerman, Mark Blaxill and Sallie Bernard. Many of these parents have published scientific research, all fund autism research and all have children with complicated forms of regressive or environmentally triggered autism. But no, TeamPreHistory only wanted semi- mute parents who would not challenge them.
I wanted to listen to more IACC sessions, but honestly, after these two I thought what’s the point? Please continue to send IACC feedback about the kind of job you think they are doing.
Katie Wright has two young boys. Her oldest son, Christian, is severely affected by autism. He developed normally; smiling, talking, walking; only to lose every skill and every word by the age of 2 and a half. Upon the advice of medical professionals Katie and her husband were advised to pursue only high quality behavioral therapy, speech and OT for Christian. It had no meaningful impact on Christian until his parents sought help from DAN! doctors who treated the underlying causes of Christian's descent into autism. Christian has improved but still has far to go. He has Inflammatory Bowel Disease, the measles virus in his gut and an immune system akin to a late stage AIDS patient. Christian does not have a psychiatric disorder. Before autism, Katie Wright was the Clinical Director of Sexual Assault Crisis Center in Stamford Connecticut. Katie is proud to serve on the Boards of NAA and SafeMinds.
I am with Garbo, random sampling, sent to independent lab, find all the contaminatns in them by PCR DNA, and find WHAT organisms are in them...report...then say, CAN YOU SEE THE ORGANISMS/TOXINS in your vial? OK? Then why do you believe in vaccines at all?
Posted by: Kathy Blanco | October 01, 2009 at 12:53 PM
Elie Wiesel said "The moment [people] entered Auschwitz, they lost their names - they became a number".
Our children have become numbers in an equally ghastly way. 1 in 6; 1 in 38; 1 in 67; 1 in 87; 1 in 100. Those who are doing the tattooing will continue as long as the system continues, railroading them to their doom.
When David Simon http://www.pbs.org/moyers/journal/04172009/transcript1.html was interviewed earlier this year by Bill Moyers, so much of what Simon said was so similar to what we bear witness to today, everyday.
Simon was the force behind HBO "The Wire" which held a mirror to America. The America not seen anywhere on television. In so many ways its our America. Simon talked about "juking the stats" We know that one quite well in how the CDC "juked" the VSD with thimerosal. You want to make an association disappear, you "juke the stats." But it was Simon's comment to Moyers speaking about the labor movement which we must consider today.
DAVID SIMON: "...that critical moment when American labor was pushed so much to the starving point that they were willing to fight. And I actually think that's the only time when change is possible. When people are actually threatened to the core, and enough people are threatened to the core that they just won't take it anymore. And that's-- those are the pivotal moments in American history, I think, when actually something does happen."
Folks we are there.....and many of us know that.
There are many truths sprinkled through out the interview. We know the painful ones.
DAVID SIMON: I am very cynical about institutions and their willingness to address themselves to reform. For their willingness to do what they're supposed to do in American life. I am not cynical when it comes to individuals and people. And I think the reason THE WIRE is watchable, even tolerable, to viewers is that it has great affection for individuals. It's not misanthropic in any way. It has great affection for those people. Particularly, when they stand upon their hind legs and say, "I will not lie anymore. I am actually going to fight for what I perceive to be some shard of truth."
We are there!
Posted by: michael framson | October 01, 2009 at 12:25 AM
Kevin,
We also had a good response to one HBOT treatment so far...
We are having a lot of difficulty getting our son back in the tank for a second treatment.
Posted by: curtis | September 30, 2009 at 11:22 PM
I think we need to get rid of the IACC for it looks like a good ol' boy system of funnelling money into buddies' hands, and I don't see it doing anything towards reducing autism. While "they" are manipulating the government to get money to keep manipulating everyone, the private sector is stepping up to the plate. My 5 children (one adopted) no longer have autism. I would like to see people who have actually recovered a child to be part of the decision-making. Isn't that the supposed purpose of the IACC anyhow, to eventually learn how to reduce autism? Heck, the government has failed at reducing most of the other chronic diseases, so why shoud we expect something different with autism? We need some calls-to-action. Tell me who to call and when. I'm in.
Posted by: HeidiN | September 30, 2009 at 11:11 PM
I think we should try to fund a study of the contaminants in vaccines. Get samples off the shelves from all over the country, have them tested by two different reputable labs, and see what's really inside. How much thimerosal in the "thimerosal-free*" versions? How much aluminum? What viral and bacterial contaminants? What allergy-causing proteins? What variation in antigens in attenuated vaxs?
If it can be shown that FDA oversight of manufacturing (choke) is inadequate and the resulting vaccines are dangerous and clearly have been released without meaningful safety testing, it will necessarily force a re-evaluation of the program in its entirety. Unless the Gov't. can guarantee safety at even a basic level such as manufacturing, they cannot reasonably demand compliance with their ridiculous vaccine mandates. It would also serve to make people realize that vaccines are not all goodness wrapped in a syringe. It may not be as important as proving the link to autism and/or mito dysfunction, but it's one place to start that can put a chink in their armor in terms of public perception and opening a door to questioning vaccine safety on a grand scale.
Posted by: Garbo | September 30, 2009 at 07:56 PM
Honestly, I would just like to see JUST 1 STUDY on the effectiveness of HBOT on our children! If they studied this, they might actually find it works!
MORE IMPORTANTLY THEN MY DAMN INSURANCE COMPANY WOULD COVER THE ONE TREATMENT THAT HAS SHOWN SUBSTANTIAL IMPROVEMENT IN MY SON!
The IACC is a joke and always will be until it is an 'even' playing field - not 3 against the whole IACC. It's been over three years and STILL nothing is done. In fact, part of it was removed that actually showed promise. Let's face it here folks, this so-called f'g committee is a farce. A farce on a political front to squash the 'anti-vaccers'.
In the meantime, we will still struggle to pay the bills, pray and cry in our sleep (what little we can get because he screams in the night from the GI issues).
Sad, sad world we live in...truly.
Posted by: Kevin | September 30, 2009 at 07:12 PM
The govt agencies are never going to do the studies that need to be done. Those of us who know the truth must find a way to fund the vaxed vs unvaxed study that will prove the harm caused by vaccines, using the population of unvaxed kids that already exists. Let's find a way to take action. Any ideas anyone?
Posted by: CT teacher | September 30, 2009 at 06:36 PM
Oh, and Tervathan was once upon a time a epidemic-ologists for epilespsy in children and also for developmental delay issuses?
Fox and the hen house, he is able to hide the stats on both of these.
Posted by: Benedetta Stilwell | September 30, 2009 at 06:09 PM
Thanks Sarah for that information!
I know about Lamitcal first hand. My son ended up on it for seizure control and was on it for three months when his neck swelled up. He was allergic to it. If you are allergic to it, it can be very serious affair!!!
My daughter works as a nurse for adolescents with mental problems. She said every last one of them will develop an allergic reaction to it, eventually.
Lamictal cost our insurance company 5,000 dollars for three months worth!
I have a drawer full of it, I just can't throw it away knowing how expensive it was. I tried to give it to our neurologist if he wanted to give it to another patient to at least try, but he refused.
Our other regular doctor said she would, but her patients do not require it so much.
All that knowledge Trevathan has, and he still is an fool.
Posted by: Benedetta Stilwell | September 30, 2009 at 06:01 PM
Seeing the title with the initials IACC prepared me to hear about more
stumbling, bumbling, hemming, hawing, and head scratching. This group was established
by the Combating Autism Act of 2006 and as far as I can tell the only conclusion they’ve reached is that most of the membership is convinced that it’s a waste of time to study the connection between vaccines and autism.
Other than that, it’s all about obfuscating.
Tom Insel testifying about autism before Harkin’s Senate subcommittee not too long ago was a public example of how worthless this bunch really is. http://www.ageofautism.com/2009/08/the-really-big-lie-about-autism-thomas-insel-testifies.html
Not once did Insel use the word “crisis” or “epidemic” in his comments. He spent most of his time trying to confound everyone by talking about the difference between “prevalence” and “incidence.” Obviously, he’s read the CDC’s handbook on to deny everything when it comes to autism. Most of all, Insel, speaking for the IACC, refused to acknowledge that there’s been any real increase in autism.
Now if a person goes to the IACC website, they’ll find phrases like:
“The dramatic increase in the prevalence of autism spectrum disorders (ASD) over the past two decades…” and
“In response to the alarming growth in autism diagnoses…”
And if you’ve been reading the official propaganda about autism for awhile, you get used to the cover-up phrases, “increase in prevalence” and “growth in autism diagnoses,” as another way to pretend that everything’s well with all this autism and it’s merely “better diagnosing.”
The IACC site has lots of stuff to read about the genetics of autism. A little on the link to vaccines, most of which tossed out the possibility. I was amazed that under “treatment” it was all about behavioral therapies with nothing on diet, supplements, hyperbaric oxygen, or chelation. In the real world, even parents in far-off west central WI have got their autistic kids on GFCF diets.
The point I’m trying to make here is that the IACC is a sick joke.
They know nothing more about autism than what officials would admit 10 years ago. Every two years Tom Insel shows up in Washington with the same speech he’s previously given. As hundreds of thousands of families get sucked deeper into the mire of autism, the IACC provides nothing for them. I’m sure the vast majority of parents with affected children have never heard of them.
If and when the CDC ever gets round to updating their hopelessly outdated autism figures, I’m sure the IACC will assure everyone that the new numbers don’t necessarily mean more kids have autism. That really hasn’t been established yet.
I came to the sad realization years ago that NO OFFICIAL WAS EVER GOING TO ADMIT ANYTHING. Everything is designed to hide the corruption and collusion. Whether they’ll admit it or not, at all costs the possibility that vaccines are responsible for the epidemic of autism has to be denied even to the point of setting up an official committee whose sole purpose seems to be to establish that WE’LL LOOK AT ANYTHING BUT VACCINES.
Anne Dachel
Media
Posted by: Anne Dachel | September 30, 2009 at 03:42 PM
I second Dadvocate's sentiment. How do we get rid of Alison Singer? Katie?
Posted by: Maria | September 30, 2009 at 03:38 PM
Here's his bio:
http://www.cdc.gov/about/leadership/leaders/trevathan.htm
Dr. Edwin Trevathan is member of the IACC and a mitochondrial expert. He is the Director of the CDC's National Center on Birth Defects and Developmental Disabilities the Centers of Disease Control.
He advised Insel to remove the vaccine studies from IACC the Strategic Plan citing COIs.
At a CDC press conference after the Hannah Poling case, Trevathan said "when children with mitochondrial disorders are placed under severe stress, such as a high fever, their bodies don't make enough energy. This often damages the brain, the body organ that needs the most energy."
http://www.webmd.com/brain/autism/searching-for-answers/vaccine-link?page=3
Dr. Ed Trevathan was paid as a consultant to Glaxo Smith Kline on a study for the use of the drug Lamotrigine (Lamictal) an anti-seizure medication in children.
See link:
Source:
http://pediatrics.aappublications.org/cgi/content/full/peds.2006-0148v1
Financial disclosure:
This study was funded by GlaxoSmithKline, the maker of Lamictal (lamotrigine). Dr Trevathan has served as a paid consultant to GlaxoSmithKline but did not receive compensation for writing this article or for assisting with the analysis of these data. Ms Kerls, Ms Hammer, Mr Voung, and Dr Messenheimer are full-time employees of GlaxoSmithKline.
Posted by: Sarah | September 30, 2009 at 02:19 PM
Kathy I am with you in spirit!
But there is still the vast majority of people out there that think vaccines are just a routine medical practice and will get their kids the shots in spite of the fact that their child is on coumaline (spelled badly sorry) blood thinner for an acquired heart disease from a vaccine (only they don't know it) and head'n back for the H1N1 vaccine.
How about that for a long sentence!
It has taken me years to understand why all those people in the jungle drank cool-aid laced with arsenic that Jim Jones gave them. And I still don't!
People have some kinda of ignorance about poisons.
Posted by: Benedetta Stilwell | September 30, 2009 at 01:27 PM
Katie you did a good job explaining what went on in this meeting! Thanks for sitting through this, listening, reporting to us and not getting yourself arrested!
Sarah, once again what is Trevathan's history?
Thanks
Posted by: Benedetta Stilwell | September 30, 2009 at 01:19 PM
These committees again only show me the waste of time it can be. Ok, we put it out there, good. We did our part. But the put it out there message they don't want to hear is BOYCOTT/Loss of Perception of safety. That's what most sane people would do after they saw an injury in their child. I am just saying, it is not about complicity any more, it's not about working with people, it's not about making a vaccine safer, or a slower schedule, it's about, their agenda...which remains as rock solid as it was before we started...that is, vaccines have worth, they are good agents for health, etc. This of course, is the defiance they will stand in, as they still put out more vaccine in the schedule, and defy logic with, with this so called pandemic of swine flu. When you lie this much, you have to cover bases all the time. I am of the opinion that our non anti vaccine stance got us here. That is what I am more infuriated with in our community, than theirs. I want to know that there is a steady hand of people, who are not going to take the lies anymore, and stand up, by finding THEIR weakness. We haven't done that yet. We have been complicant in their committees, yelled, screamed, testified, showed them our science while revealing their junk science epidemiology...and what has it got us? More vaccines. More ignmoramuses who apply undo presure on the government to have sheeple line up with scaremongering in tow. I for one, don't chum up to my children's murderers. I want an autism focus to go entirely postal. That is, we are not going to vaccinate our children, until you comply WITH OUR STANDARDS. And good luck with that, because they don't care a rats behind about our children, or our future children. That said, I know some of you will say, well, we have to go slow with it. Fine. I think you will have at least fifty years to get your message across. Meanwhile, I will not vaccinate my grandbabies (already done), and their children, and their children's children, based on these truths. And we will wipe autism off the face of our genetic slippage map.
Posted by: Kathy Blanco | September 30, 2009 at 12:18 PM
Katie- How can an effective strategy be mounted to remove the uncredentialed PR expert Alison Singer from the Committee? In her role at AS she was a lightning rod for critism far and wide within our community. She has a track record of not playing well with others. I simply don't understand why, without the support of AS, she is allowed to remain in this position of influence.
Posted by: Dadvocate | September 30, 2009 at 09:22 AM
IACC would no more allow Dr Jepson within a million miles of their precious committee than they would appoint Andrew Wakefield himself.
The NIH and CDC know that vaccines are causing autism. They have known for many years, I'm sure. The function of IACC is to perpetuate the cover-up. What's sad is that so many autism families are still unaware.
Posted by: julie | September 30, 2009 at 09:18 AM
The IACCs agenda is to keep a lid on this which is why they continue to block vaccine safety studies and opposing views. Chances are they've (especially Insel and Trevathan) have seen the studies and already know the answer and it has to do with the mitochondrial dysfunction.
We should request funding for studies that look at what triggers mitochondrial dysfunction a precurser to chronic disease. We may get insight into the origin of many chronic neurological conditions including autism.
Isn't the IACC advisory? does Congress even have to accept the IACCs research recommendations? If not then we may have more power than we think if we lobby our congressman directly.
Posted by: Sarah | September 30, 2009 at 09:16 AM
Oh they care. They care quite a lot.
They care to do everything they can to make sure the lid is put as tightly as possible back on the vaccine/autism theory. They care to desperately do everything within their power to help the vaccine makers and the government health officials and yes, even the main stream media make sure that most of the public never learns the truth about the genocide that's being committed.
WAKE UP Katie. The organization that was founded to help your child has been hijacked. Their only interests now lie in raising money, and if doing that means helping the people who've destroyed our children that is what they will do.
Posted by: Robin Nemeth | September 30, 2009 at 08:14 AM
If this doesn't prove that they know it's the vaccines, nothing will. They KNOW and they don't care.
Posted by: Maggie | September 30, 2009 at 06:58 AM
It is not difficult to postulate that these people were chosen for the specific reason of NOT looking for the cause/cure of autism. It is beyond frustrating to hear their hijinks as a nation of 1:100 children succumb to autism.
Their apparent lack of urgency for true research on environmental/vaccine causation is illogical, unreasonable, and smacks of industry and public health involvement, ie - vaccines must be taboo.
Posted by: Teresa Conrick | September 30, 2009 at 06:53 AM
Can the Congress actually fire Insel & Co? Does it have the powers?
Posted by: Natasa | September 30, 2009 at 06:28 AM