IACC Insanity

By Katie Wright

Is IACC a serious autism research committee or a daytime drama? I’m confused. This would be funny if so much were not at stake. The machinations, backstabbing, covert agendas, and secret confabs are reminiscent of 2000 Florida re-count. Sometimes rules and laws apply, other times they do not, secret phone calls, secret meetings, anonymous votes, mysterious re-votes on already settled business, broken promises, probably broken laws…

Parents all over this country who worked so hard to see the CAA passed were listening to Wednesday’s goings on thinking, “What the hell, Tom!” When my parents should have been down in Florida with their pals, playing golf and generally being retired, they were pounding the halls the Congress and the Senate working hard to procure this money for autism research. I went with them only a few times, but I never saw Tom Insel or Ed Trevathan there. Now, Tom and his cronies seem to think it is their prerogative to re-write the Combatting Autism Act. Enzi, Kennedy and Dodd, clearly and unequivocally said on the Senate floor that the CAA must finance independent vaccine research. Not, “independent vaccine research- pending the approval Tom Insel and Alison Singer.”

What is with the re-vote anyway? This issue had been settled at the last IACC. A re-vote of the vaccine research was not even on the agenda. Lyn Redwood and other public members of IACC had no idea this issue would be re-visited. But who did know? Alison Singer knew. Ms. Singer called Bob and Suzanne Wright the night before to tell them that she would vote against it. My parents were appalled Singer would vote against Autism Speaks’ wishes  and that she intended to keep AS’  IACC seat as her own personal platform. When one resigns from a job, they resign from a job, they do not pick and choose the elements of the job they’d like to keep.

Listening to the federal members of IACC debate about why independent vaccine research would be “too hard,” was beyond human endurance. Ask my husband what it was like not to sleep through the night for three years, that was hard. Issuing and RPA for vaccine safety research is NOT hard. The next excuse was the rationale that “they would be only be replicating vaccine/ autism research” was absurd. No federal agency is even doing this type of research, that is the whole point and why it needs to get done!  There has been no research completed nor is any or research planned that will study the safety of injecting babies and toddlers with 38 vaccine by age 2. Then came an absurd comment by the brainiac who said “well, we cannot do this because what is it conflicts with other research?” As Lyn Redwood said, “it’s called science,” dope. These people could not be more out of touch with reality. Finally came most hackneyed cliché ever: “we have limited resources and cannot afford vaccine research!” IACC cannot afford to spend  .17% of the CAA budget on this issue, that’s really going to break the bank? Wake up IACC, more money has been spent on robots working with aspergers kids than on vaccine safety research.

There has been too much unscrupulous behavior from the IACC leadership, only serving to confirm why this committee should be disbanded. Why did some people know the vaccine issue would be re-voted upon and others did not? Why was this issue revisited in the first place? Why are Tom Insel and Ed Trevathan willing to go to such lengths to avoid real vaccine research?  The whole committee needs an ethical and representative overhaul. We need a doubling of public members who represent autism orgs of more than a few thousand members. TACA, NAA, Generation Rescue, Safeminds and ASA all deserve multiple seats. Disgruntled former employees of autism organizations who represent only themselves need move on with their lives.

Kudos the brave advocacy work of Lyn Redwood of Safeminds in her courageous fight towards  accountability, transparency and answers for all of our children. Parents are also so appreciative of the support of Stephen Shore. The AAP pediatrician on the committee said that his patients have more questions that ever about vaccine safety,  agreed that independent vaccine research must be done. Thanks to ASA and all the public members of IACC who stood their ground against obstructionist federal committee members. Families are especially grateful to Autism Speaks for standing with the autism community and telling Tom Insel that his deceptive actions have  not gone unnoticed and  have no place in the process of allotting the CAA monies.

Out of crisis comes opportunity and hopefully now that all have seen the IACC as the ethically compromised and partisan mechanism that it is, a far more representative, trust worthy and productive committee will take its place.

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.

Comments

[biomedmom]

It bothers me very much that a person who is not an Age of Autism editor is attacking posters and their posting style ("drama and dissertations") in such a way that would seem to suggest that this is the collective opinion of everyone who participates here ("it's getting old over here."), and then actually goes on to say "Bottom Line: You (and _____) are certainly entitled to your opinions and free to express them -- just not at the expense of other parents." Huh? Shouldn't these types of things, if indeed guidelines of Age of Autism or the opinions of *all* of the participants, be communicated by the editors, privately?

It is distressing that the people on the receiving end of these mean spirited comments are actually on the same side of the vaccine/autism debate as the commenter.

[Kathy Blanco]

Heres some lovely news...ladies and gentleman, the denial looms large..I know of many kids who have stroke like symptoms after ANY vaccine.....safe vaccines, my arsss.

NEW YORK (Reuters Health) - Unlike chickenpox itself, the vaccine against chickenpox does not increase the risk of stroke or brain inflammation in children, according to a large US study reported in the journal Pediatrics.

Stroke is a known complication of chickenpox, a viral disease also called varicella, the study team points out. Although there have been case reports of stroke after varicella vaccination, "the existence and magnitude of any vaccine-associated risk has not been determined."

To shed light on this subject, Dr. James G. Donahue of the Marshfield Clinic Research Foundation, Wisconsin and colleagues analyzed data for the period 1991 through 2004 from the Vaccine Safety DataLink on 3.2 million children, 35.3 percent of whom received the varicella vaccine.

They identified a total of 203 new stroke cases, including 8 that occurred within 12 months of varicella vaccination. However, the timing of each case did not suggest that vaccination caused the strokes.

Stroke was strongly associated with known risk factors such as sickle cell disease and heart disease, they found.

Donahue and colleagues also identified 243 cases of brain inflammation or encephalitis. None of these cases occurred during the first 30 days after vaccination and there was no association between encephalitis and varicella vaccination at any time in the 12 months after vaccination.

"Complementing two recent reviews that found serious adverse events to be rare after varicella vaccination, this study offers reassurance that the rare complication of stroke seen after varicella infection" is simply a coincidence, not a cause and effect relationship, the team concludes.

SOURCE: Pediatrics, February 2009.

[Kathy Blanco]

Lastly, Kelli, you suggested I was working with the evil bastards? Are you kidding? I mean Kelli, really? What I don't do is mince words. I may write these people because they asked for public opinion, but does tha tmean I am working with them? NOT. Do you think when all these letters are actually put through that actions on our side will be taken, NOT!!!! It may be futile, but, they asked for it, right?

My letter may be different from your letter...I can see yours now...it was nice meeting with you at lunch when we discussed greening vaccines...blah blah blah...

Mine will read, come on people, this whole thing is causing autism-this is what happened when I trusted you blah blah balh, I don't believe you, and I don't trust you...did you not read that? The tone? The tone is, I am pissed, your killers, and I am not going to work with you, because you know, that I know, that you are bought and paid for.

Anyways, I just had to put that last dig in-or should I say, my last stopgap.

On the other hand, I do believe Kelli, you are trying your best to send this message across that I am one of THOSE parents. I really am a meek person, and I do my best to be kind and considerate, but when you jab people back, I wonder if you don't read your own words? I think opposite views are allowed on forums like this. Twyla has one view, I have another, and you have a middle ground. These are the things that must be worked out. But, I am surely, not going to work it out, in front of these people who don't care. Otherwise, they will get that we don't get the science of vaccines, how they are made, how often they are dangerous and contaminated and deadly. Othwerise, we will appear as if we are going along with the program only to stick it to you. Even the pro vaccine people know the message is screwed up. They voice it on their blogs all the time. What they are saying is that we are secretly anti vaccine, but are trying to be political about it. GOD, I hate that word, political. It only suggests that someone had to tone down the message for the masses. What if we did that to the tobacco companies? What if we did that for other outrageous killing products? I just want to know, that your going to stand in Washington DC, and tell these people what they have done to my kids, and that because of my trust, in their safety message, that I will get my comings so to speak, and that means, that vaccines will have to be studied long term, vaccine vs unvaccine, and that we have the RIGHT to opt out of them, COMPLETELY and TOTALLY/. If that is your message, I am with you babe, if not, your one of THOSE parents...

[Kathy Blanco]

First of all Kelli, I see that you liason with Washington DC types on this issue, and all hands down, that's not easy. After a while, you comply with rigid thought patterns/modems on approaches, almost sidding with people who created this autism epidemic in the first place, because of their HIGH and GLORIOUS positions of leadership. I had no such illusions. A pHD type, or NIH type, or governmental type of person, is just a person, and most likly PAID or BOUGHT by the pharmaceutial industry. They have their minds made up, in order to keep jobs, keep reputations, keep income and profits, and most of all to hold back the grand and glorious secret of how autism is initiated.

But, I did this study four years ago, when I still had faith in these apes. AND, the message WAS VERY DIFFERENT. I came from a position of, prove me wrong herewith, not gee, let's work together shall we? My faith now? They have NO concern about our kids, NONE ZERO ZILCH. There heads are in their proverbial sandy bottomless A@#$@ along with their greedy blood stained hands.

Unlike you, I already know, vaccines can't be greened, HAVE ANY VALUE or made safer or on safer schedules. What I was asking for, if you looked, was to have a pretest, to suggest A VACCINE in a predisposed child is dangerous, WAY DIFFERENT. Most likely, a thirty dollar test would save the government millions of dollars. Not only that, but eighty percent of cord blood showed that these kids will not react favorably. Can ypou imagine the toll that would be on a vaccine industrialist? That would mean, not only doubts would come to play, but selfish behaiors, so called, by an unbelieving public, that vaccines may be dangerous. WAY DIFFERENT. Is your campaign asking for this? NO, you are saying, once we take things out, go on ahead general public, have at it. WRONG WRONG WRONG message. Are you going to also green vaccines, by virtue of saying, the VIRUSES in them are safe? That having multiple contaminations in one vial is acceptible (by so doing, taking out the toxins?) My message is, there is no telling what vaccines are bad, no telling. THAT IS WAY DIFFERENT. I know you are TRYING to say, you are putting doubt in parents, in my mind, you are creating, or some people are creating the image that vaccines still have some value, that we are centurist. Twyla can have it with vaccines, good for her, that's her choice. I on the other hand, see why autism is not so genetic, but epigenetic/idiopathic/ioatragenic, that is, MANKIND is causing this disaster (not only by vaccines by vectored bacteria, food supply, birth methods, yadah yadah). So, let's get out of the way of that, and let NATURE do what it is designed. Instead of building defences for non harmful chilhood diseases THAT MANY LIVE THROUGH WITH FLYING COLORS if taken care of properly with the added assurances of hygeine and nutrition and not quick fixes, lets build immune sysetms, a way different look at health. My grandchidlre are living testaments that vaccines INITIATE the autism condition...they have not autism, no neurological problems, BECAUSE, they did not get vaccines EVER. If autism is so genetic...???

Unlike you, and some others, I am bold in this stance because I saw true injury from vaccines/not just coincidence and timing, and have evidence to back it up. And because of that misfortune, all the days of my life will be about going about the public as my right and duty, and putting doubt and more doubt into the whole program. FOR, as you study how the immune system works, in essence, this modern day practice is causing all our MODERN illnesses to BLOSSOM from "genetic", or initiating or worsening them. Back in the bible, it even stated, to not mix animal blood with human blood...that's good enough for me.

I don't get that Jenny can say, ok, when we do this impossible task, you general public, can have this new vaccine. WAIT A MINUTE...that means, she too doesn't care what happens to some one elses child OR MY CHILD? I don't think she thinks that way or even operates on that level, but if you put the logic down, it's suggesting that. The communication has broken down in our autism population because frankly, we mothers who saw this true injury, are not going to take this shit anymore, and we want bold stances. We want to know that you are going to be OUR mouthpiece, not the mouthpiece of a minority who think we should be still workable, plyable, able to be worked with. In simple terms, a mercury free vaccine, is still a shit vaccine, an aluminum free vaccine, is still a shit vaccine, and so on and so forth. I want the doubt to spread farther, that these organizations are calling for not only the impossible and improbable, but that they are pseudo concerning autism in many parents lifes, foregoing that many autism cases result in DEATH, by seizure, by stopping breathing, and or lifetimes sentences of no communication. I hold that very serious to me, and I don't think a greened tobacco ciggarette is any different.

[Twyla]

I know parents who currently forgo vaccines because they have lost confidence in the safety of today’s vaccines, and also because after one child has a vaccine reaction they are concerned that there may be a familial susceptibility to vaccine reactions.

Yet these same parents do not necessarily advocate for doing away with all vaccines. They do advocate for a vax/unvaxed study, study of individual injured children, better studies of ingredients, fewer vaccines, removing all thimerosal, not giving several vaccines together at the same time, better study of long-term and short-term effects, and not having the only safety reviews performed by people who have a vested interest in denying problems.

As a child, I received vaccines for polio and smallpox and tetanus. My generation had much fewer vaccines, much fewer adverse reactions, and much lower rates of autism, ADHD, asthma, etc. I believe there is a middle ground where some vaccines are given for some of the most serious diseases, and adverse reactions should be studied instead of ignored, and vaccines should be made as safe as possible.

The smallpox vaccine has a risk of serious adverse reactions. It is no longer given today because the smallpox virus has been pretty much eradicated from planet earth (knock on wood). But perhaps those risks were worth taking when smallpox was epidemic.

The polio vaccine had some problems which were addressed much too slowly – contamination with a monkey virus associated with tumors, and the live polio virus in the vaccine sometimes causing polio. But my parents’ generation suffered from a polio epidemic, and my generation did not. I credit the vaccine.

I am not trying to convince anyone that some vaccines have value. My point is that some of us honestly believe than some vaccines have value. This is not hypocrisy nor inconsistency nor being afraid to speak the truth.

I can understand why Jenny McCarthy would not vaccinate her child (nor future children) any more, and yet would say that she is not anti-vaccine and she does not advise others to forgo all vaccines. Instead, she advocates for making the program safer, and she advises parents to educate themselves. Each parent must make the best decisions they can for their children.

I am for parental choice in vaccines. I am fortunate to live in a state that has a philosophical exemption. I believe all states should allow parental choice. Consistent with the parental choice philosophy, I would not try to make decisions for another parent.

My other point is that I have tremendous respect and appreciation for the work being done by Lyn Redwood and the other public members on the IACC (except for A. Singer of course), and I think it’s so important for these issues to be addressed on many fronts – within various systems as well as without.

Raising money for independent research – great! Criticizing anyone for trying to work within our government – not great!

Sorry if I’m repeating myself. I think I’m done now.

[Lisa @ TACA]

A lot of general public folks saw the Green our Vaccines rally on television, popular magazines, and websites. A lot.

More people are talking about vaccines and their ingredients than ever.

Green our vaccines rally? In my opinion - A positive step in the right direction.

[Twyla]

OK, I'll save my peace sign for the next "autism study conducted by boobs"! (although Kim's photo choice was much better!)

[rileysmom]

HA HA HA HA!!!!
Twyla,
I appreciate the attempt but I was thinking that your "peace" symbol looked like droopy boobs. I had to read your comment to figure out what they were. I was thinking...OK now she's just making fun of me! How did she know my boobs droop???? Thanks for the boobs/peace sign/laugh!!!

[Kelli Ann Davis]

"Vaccines will never be made without toxins or "questionable ingredients" and I am surprised anyone would think this is even possible."

Who ever said it was possible???

The point is they are UNSAFE NOW and unless and until they are PROVEN to be safe, no one should be injecting this unsafe product into their bodies. Period.

"I could care less about making it seem more palatable for the people in the Pharma. companies and their cronnies by taking a "we just want a safer schedule and greener vaccines" stance."

The "Greening" message isn't for pharma and their cronies -- it's for the PUBLIC!

Translation: "RED FLAG! BEWARE!! THIS PRODUCT HAS CRAP IN IT AND IS LINKED TO MY CHILD'S AUTISM. DO YOUR RESEARCH."

Seriously, folks. How hard is that to understand.

Oh and Kathy: I'm surprised you decided to write letters today considering your remark from 2 days ago:

"I tried, I was on a committe, like you to bring about changes.. I called ACIP members...not fun. You should hear the blasphemy that came at me, it was not only uncool, it was down right evil. So if you want to deal with the evil bastards, all the days of your life, go on right ahead, good luck with that..."

So, I guess you've changed your mind and decided to engage with the "evil bastards" right alongside the rest of us???

[not falling for it]

Vaccines will never be made without toxins or "questionable ingredients" and I am surprised anyone would think this is even possible. How in the world can a vaccine be considered a vaccine without all of the toxins they put in them? What exactly WOULD be in a vaccine for it to be considered "safe" and non-toxic? It will never happen. NO vaccine is the only safe vaccine and trying to convince these Pharma. companies to "green a vaccine" is just plain useless. Taking out Thimersol is one thing, asking them to remove everything else, which is what would be needed, is another. I could care less about making it seem more palatable for the people in the Pharma. companies and their cronnies by taking a "we just want a safer schedule and greener vaccines" stance. I think that sounds crazier personally and puts thousands and thousands of kids at risk and bottom line, it's about not destroying anymore kids.