Dr. Landis Resigns from the Interagency Autism Coordinating Committee
By Katie Wright
I think our community should accept Dr. Landis’ apology. I too have made mistakes in public. Landis quickly took responsibility for the content of the note. Prior to her resignation, Landis pledged to support vaccine research. As a Mom of a once healthy and typical child, who is now profoundly autistic and chronically ill, I greatly appreciate Landis’ support for the study of children who have been adversely affect by vaccines and regressed into autism. I am sure these actions will galvanize IACC to reinstate the vaccine research proposal that Insel and other federal members had unlawfully removed from the strategic plan. Comprehensive and independent vaccine research upon the effect of multiple vaccines and their toxic adjuvants on babies’central nervous system has never been done. It is about time.
The only element missing from Dr. Landis’ statement was an apology to Lyn Redwood. As our community is well aware Lyn Redwood and Lee Grossman are the sole IACC autism advocacy representatives. Lee and Lynn are the only ASD organizational representatives of the nearly 2 million American families living with autism. When hostile IACC committee members like Dr.Yvette Janvier dismiss a mere discussion of our children’s suffering as “offensive” it has been Redwood who has urged the committee to come to grips with the fact that autism is frequently a multi-system disease with profoundly disabling co-morbid disorders. Redwood has continually advocated for research into regression, adjuvants, adverse vaccine reactions as well as GI disease and dietary interventions studies that would be relatively inexpensive and lead to a better quality of life for some many of our children. Lyn Redwood is a parent, a pediatric nurse and has been autism advocate longer than anyone in that room.
Redwood deserves and apology not only from Dr, Landis but also from Dr. Matt State and Dr. Ed Trevathan. I was astounded that these gentlemen sat back allowing Landis to accept all responsibility, for what was surely a group effort. I am honestly unclear about who wrote what. The parent who gave me the notes only witnessed State and Landis passing the paper back and forth. State is clearly as culpable for the sentiments expressed in the note as Landis.
Another disturbing element easily extrapolated from these notes is the implication that IACC business has been discussed- outside IACC meetings- between committee members. Such communication is expressly forbidden. When Story or Matt wrote “That is what Ed thinks too” in response to “is Lyn making autism into a multi-symptom disorder…in order to feed into vaccine injury”, it is clear Ed, Matt, Story and whomever have discussed this subject earlier. I listen to all the IACC meetings and Ed Trevathan has never expressed these beliefs in public, therefore this conversation took place in private. Why has Tom Insel allowed such flagrant violations of the committee’s integrity? Is it any surprise that the autism community widely distrusts IACC?
Tom Insel had the opportunity to rectify this situation during the creation of the autism research subcommittees. Lyn and Lee nominated a number of well known parents who are either respected autism clinicians or advocates, or both: Dr. Bryan Jepson, parent, clinician and researcher, Dr. Jerry Kartinzel, parent clinician and researcher, Dr. Jeff Bradstreet, parent, clinician researcher, Jane Johnson, parent author and president of Defeat Autism Now!, Peter Bell, parent, former president of CAN and vice president of Autism Speaks, Sallie Bernard, parent, researcher and co-founder of SafeMinds, Laura Bono, parent, advocate and co-founder of the National Autism Association, Lisa Ackerman, parent, advocate and founder of TACA, Stan Kurtz, parent, advocate and president of Generation Rescue… These parents could have provided the much need balance and perspective that IACC clearly lacked. Instead of creating a space for this community of families, IACC federal members voted in blocks for ultra conservatives, non parent members with archaic p.o.v.s like Dr. Robin Hansen, Dr. Manny Bloom, Dr. Matt State, the note passer from Yale and Dr. Ed Cook, yet another NIH representative. This was a huge mistake.
Finally, the fact that such bizarre and disturbing theories (families fabricating illness in order to build cases for vaccines court) abound amongst IACC committee members is a direct result of the manner in which Tom Insel assembled IACC in the first place. There are 19 committee members and only 3 are advocacy representatives: Lee, Lyn and Stephen Shore. My parents, Autism Speaks founders Bob and Suzanne Wright had many, many, many meeting with Congresspeople and Senators about the need for families to have a bigger role in autism research via the Combating Autism Act. 3 out of 19 was NOT the ratio anyone had in mind. IACC has been packed with too many federal members, most of whom have no personal, clinical or research experience with autism. Two other public members are Insel’s friends: one sits on the committee because she is neighbor and the other represents a tiny mystery org with secret financial and membership stats. We can do so much better than this. At least Stephen Shore is a true representative of the Aspergers community. Meanwhile large and well established and national autism organizations like Autism Speaks, the National Autism Association, Generation Rescue and Defeat Autism Now! were not allotted IACC seats. Incredible, right? It is like a federal committee on breast cancer composed entirely of men.
In order for IACC to succeed it needs to make big personnel changes immediately. HHS president Sebelius recently pledged that autism research is one of her top priorities. The parent community already did the hard work in securing the funds, now we need to rehabilitate IACC by transforming the committee into a well informed, revitalized and scientifically progressive body that will support unbiased and innovative research. Secretary Sebelius could demonstrate this commitment by appointing new IACC members and a new IACC chairperson as soon as possible. We have already wasted enough time
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.
How rewarding for us all that the work of a great parent has resulted in a positive change for our kids. Thanks Katie. You are an amazing advocate.
Tick tock Alison Singer. Hope you're next.
Posted by: Margo | October 22, 2009 at 06:03 PM
With the accounts surfacing of collusion, incompetence, and malfeasance on the IACC, one has to wonder how this group could possibly address the needs of the hundreds of thousands of children in our country who struggle with autism. There is little justification for their existence.
Posted by: Anne McElroy Dachel | October 20, 2009 at 07:59 PM
Thank you Katie....
Again, your continued coverage is much appreciated in keeping us parents informed on what is going on in the land of autism bureaucracy. This is beginning to sound like a soap opera....."he said, she said, he leaves, she steps down, she votes, they pass secret notes, notes are found, she changes her mind, she resigns.....".
Can't we get back to the matter at hand? While all these IACC members play footsie under the table, I wish they would just cure our kids.
Thanks to you and Lyn and Lee who have the EXTREME PATIENCE to sit through and deal with the government. I, seriously, don't know how you all do it. But thank god you do!!!
- Jacey Capurso
Posted by: Jacey | October 20, 2009 at 11:31 AM
Just to demonstrate the bipartisan nature of our cause and our challenge, take a gander at this story in The Hill (inside the beltway news), which explains why we have our work cut out for us. It seems the one thing that can unite bitter enemies in Congress is the agreement that vaccines are safe and effective, and everyone should get them.
Posted by: Garbo | October 19, 2009 at 11:27 PM
Jeff C., I doubt that Katie meant "ultra-conservatives" in a political sense as in Republicans and political conservatives. It took it to mean people into conserving the status quo, the current power structures (pharma/mainstream medicine/govt agencies), the archaic view of autism as solely genetic and related to brain structure, and the view that vaccines are above reproach. This contrasts with the newer biomedical paradigm of autism, which is radical in the sense of being a change that shakes up tradition, power, money, etc.
I agree that these issues transcend political parties and that there are political "liberals" and "conservatives" on both sides of autism issues.
Websters' definition of "conservativism":
"a disposition in politics to preserve what is established" and "tendancy to prefer an existing situation to change"
I imagine Katie is applying this to the specific issues at hand rather than to political party allegiances etc.
Posted by: Twyla | October 19, 2009 at 10:51 PM
I agree with Ms Blanco, at this point I would not even trust a vax vs unvax study conducted by the gov't. It has to be an independent group, the gov't is too invested in vaccines!
Landis was the person thrown out of the sleigh to appease the wolves ( that's us) but will this change anything with the IACC? I am working on letters to Sebelius(waste of time) Sen Harkin and Michelle Obama to appeal to her as a mom. Although Mrs Obama has a public health background and they are the worst when it comes to questioning vaccines.
Posted by: julie | October 19, 2009 at 09:42 PM
Katie and Henderson,
Thanks both for your reply. Sincere apologies for jumping to conclusions regarding a small point in an excellent post.
Posted by: Jeff C. | October 19, 2009 at 09:13 PM
I feel like I'm missing something here and had the same type of reaction as Jake Crosby's post. Is there any other basis to assume that Landis supports vaccine injury research then the incriminating note? That note seems to indicate that if you acccepted a multi-system conceptualization than you'd be compelled to study the vaccine-injured, not that she was advocating for it.
I'm thrilled she resigned, but she certainly didn't aplogize for what she needed to apologize for based on what I've read here. She and the others need to apologize for blocking all scientific inquiry into the role of vaccines and biomedical treatment. She seems to be apologizing for having poor conduct during a meeting and at the most not pretending well enough that she respects parents who identify a multi-system problem. She might as well have apologized for coming in late to meetings and resigning on that basis. There is nothing of substance in her apology and it certainly isn't the one the biomed community needs to hear.
To attribute Lynn's comments to a desire to rake in money can be nothing short of classic projection. Why are these people on this board other than to secure another source of income and build their career so they can eventually rake in more income? I'm beginning to think that it sincerely didn't dawn on them that parents are reporting a legitimate crisis and that we are pleading for help. And apparently, it's never dawned on them that they are at least supposed to be pretending that they are in a position to help.
Thanks for all of your amazing work Katie!
Posted by: ginnie | October 19, 2009 at 07:46 PM
Just wanted to add that I am in no way minimizing his poor brother's death. The genetic obsession seems to have stemmed from this very personal experience but we are now 10 years later and this fruitless search needs to be curtailed.
Posted by: Teresa Conrick | October 19, 2009 at 07:43 PM
Robin, your post was awe inspiring, and I am with you in spirit. Just want to say, your probably the only parent that gets it.
Thanks for you...
Posted by: Kathy Blanco | October 19, 2009 at 07:21 PM
I then might be incorrect on this Ed being the "Ed"-(note the date on this genetics R us letter)
So "Ed" is this Ed?
Posted by: Teresa Conrick | October 19, 2009 at 06:44 PM
Sorry I meant no offense!
I used the word conservative as in "autism is genetic" we should never study vaccines mindset.
I should have found a better adjective
Posted by: Katie Wright | October 19, 2009 at 06:16 PM
Jeff C. When I read Katie's sentence with the word conservative, I did not jump to Republicans and Democrats (or the Liberal, NDP, Green or Conservative parties up here in Canada).
I really think she meant persons who are only interested in staying with the status quo.
From google definitions (in order):
# resistant to change
# having social or political views favoring conservatism
# cautious: avoiding excess; "a conservative estimate"
# a person who is reluctant to accept changes and new ideas
# button-down: unimaginatively conventional; "a colorful character in the buttoned-down, dull-grey world of business"- Newsweek
# a member of a Conservative Party
# bourgeois: conforming to the standards and conventions of the middle class; "a bourgeois mentality"
And, if we really want to get political... both sides of the aisle down there are on both sides of just about every issue related to autism... as it depends on which big pharma/big food producer/big coal pollution/you name your poison lobbying firm is paying their bills (or not)... same goes up here :).
And... Go Katie Go!
Posted by: Henderson | October 19, 2009 at 05:53 PM
Just to clarify: Bernardine Healy was head of the NIH from 1991 to 1993 which was some while before the vaccine-autism controversy started, although contemporaneous with the Hilleman memorandum to Merck about mercury overload.
Posted by: John Stone | October 19, 2009 at 05:11 PM
Great article Katie and please keep up the good work! I greatly admire your determination and steadfast commitment to our children.
I've commented on this phenomena before, but there is one minor nit in the article that I fear detracts from the mission. You wrote:
"Instead of creating a space for this community of families, IACC federal members voted in blocks for ultra conservatives, non parent members with archaic p.o.v.s like Dr. Robin Hansen, Dr. Manny Bloom, Dr. Matt State, the note passer from Yale and Dr. Ed Cook, yet another NIH representative."
While it may not have been meant in a political sense, labeling opponents as "ultra-conservatives" needlessly alienates up to half of the country. This is not a political issue, it's an ethical issue. As a bio-med dad and a conservative, it concerns me that I so often see such broad-brush political generalizations made by leaders in this movement. These are all leaders that I respect tremendously thus making criticism all the more difficult.
I appreciate that HuffPo and Kos help spread the message, but please don't take that to mean that the bio-med movement is a political monolith. We come in all political stripes and need to work together to keep the pressure on.
Posted by: Jeff C. | October 19, 2009 at 04:22 PM
I do not believe that Landis' note implied that she was secretly,all along interested in studying vaccines. No way. From day one of IACC Landis had been the most vocal opponent of any and all vaccine research.
Believe me, I actually tortured myself listening to all those meetings.
The idea that Landis was about to turn on a dime and suddenly come out as our biggest supporter is ridiculous. But this isn't personal, if the embarrassment of the notes was so great that she "re-intrepreted" their content for public consumption- fine. I was looking forward to Landis living up to her promise to research the children adversely affected by vaccines.
Lyn Redwood is still owed an apology by Landis, Matt State of Yale and Ed "Ed agrees" Trevavthan of the NIH. This trio had obviously been discussing Lyn's "angle"-about us seeking big awards- in private. Such discussions between IACC members outside of IACC are strictly forbidden.
Posted by: Katie Wright | October 19, 2009 at 04:19 PM
Most of these people are in fear of their jobs in this economy. We had friends who's father was a Chancellor at a major university. He has been out of work for one and a half years, and is on foods stamps now. This is the reality. The reality is, autism fetches a lot of $$$, money for research that goes off on tangents far and off base, and money to shut up with. I talk to researchers, and they WANT to be funded, but never get funded because of the implications of their research. Implications don't save major universities from going into the red. Most of the good researchers are affiliated with teaching hospitals and universities where they have "equipment"-but on the same hand are funded by pharma and interested parties. A lone researcher would not have the resources to do a major study, even one like the vaccine no vaccine group one we all want. What needs to be done is a concerted effort by all the orgnaizations who say, make over a million, coming together, pooling their monies and resources, and finding someone who doens't mind putting their neck on the line. Good luck...because even that one person who puts his neck on the line, will need a job for the rest of their lives because of the implications against the AMA and their "collegues" to support themselves and their families. As soon as that report is out, they will be, count on this, blacklisted for further research. It would be, in my estimation, at least a ten million dollar research item-leaving money or a position for that lone researcher for life. That's how much money one wouuld need to have the resources, the people, the equipment, and the know how, to put this together. That's nothing to NIH, they get that all the time. And for no reason other than they are NIH.
I strongly urge all, to ask NVIC, who is the researcher and what are the resources, and what is the equipments and methods used for this research. I want an IRB proposal IN MY HANDS, with actual numbers (line by line), actual names of people and their strong affiliations and background checks, and then, and only then will I fund a vac no vaccine study. Until then, I think we are blowing money up some chimney or someones ass that will go nowhere.
I for one, wish I was a PhD at this point, because I wouuld love to design such a study, but alas, a lowly mom in the trenches....who has been in this autism bizz now for 28 years...and I have seen, heard every excuse on the planet, and am sick of the stalling. I am sick of the political action groups, and sick of some of the NPO's, who's well intentioned items, seem to never address the why of autism, and how to get out of this fine mess. For those who do that, I apologize ahead of time. I am getting too old for this, and my time is short. I don't want another study to be disseminated by NIH fools and media sound bites. I want the real mccoy truth. And let's be honest...vaccines are not the whole and only cause of autism, so how are we going to thin out, so to speak, the herd of kids who eat MSG everyday, live under a coal plant, or mother had amalgams, and so on and so forth. The fact is, the perfect storm of autism, is not one item or ingredient, it is a recipe for disaster...God help our children to survive and endure this onslaught. God help those individuals who hid this truth from us mothers, who deserve further answers.
Posted by: Kathy Blanco | October 19, 2009 at 04:01 PM
Thank you, Katie. What would we do without you and your reporting of IACC's total lack of respect for victims of autism and their families. You couldn't have summarized it better:
"It is like a federal committee on breast cancer composed entirely of men."
Posted by: we shall overcome | October 19, 2009 at 04:00 PM
Who is on the short list to replace Dr. Landis ???
That would be the next key issue.
Posted by: curtis | October 19, 2009 at 02:37 PM
About some of those swine flu vaccines being given at Wal-Mart and mandated in NY for health care workers, courtesy of Mark Crispin Miller:
This article, about Novartis's use of dog tumor cells to make its swine flu vaccine, appeared in Bild, the German newspaper, on August 21.
The dog tumor line used by Novartis is MDCK (Mardin-Darby Canine Kidney).
For a scientific account of the process that the corporation used, see this article in the New England Journal of Medicine (specifically, the passage beginning, "The seed virus was grown in Madin-Darby Canine Kidney (MDCK) cell culture...."):
(And here is Novartis's press release on its
successful use of cell-based technology to produce its H1N1 vaccine:
What are the dangers of jabbing people with vaccines derived from cancer cells?
How dare you ask!!!!!!
Vaccines are good. We need herd immunity. You are a bad parent, a bad citizen and possibly a subversive for asking.
Posted by: David Taylor | October 19, 2009 at 02:31 PM
Robin I'm actually going through my House Rep and Senator and the connection I have on the inside of the NIH.
I did just now call the 877 number and it led me to the following numbers for the Secretary: 202-205-5445 and 202-690-6392. The 202 number came from the website.
I do suggest sending a note to Sebelius in the mail, stating your concerns. A couple of hundred show up on her desk by the weekend and she just might want to read one or two of them.
Posted by: bensmyson | October 19, 2009 at 12:49 PM
Perhaps I’m seen as horribly intolerant. Let me try to explain my anger at this ready forgiveness.
Bernadine Healy spoke out in support of parents who’ve said “My child was fine until he or she was vaccinated, then he slipped into autism. Oh and btw look at all of this evidence for a link between neurological and digestive and auto-immune disfunction, and vaccines.” When she did this, she was embraced by the ‘autism community’. She was given an award, by Autism Speaks, at the Cleveland Rock and Roll Hall of Fame, for all that she has done. Never mind that she spoke out a good decade too late. Ok fine maybe she was unaware of the link between vaccines and autism, earlier. Some would say she SHOULD have been aware-- she was only the head of the NIH after all. But fine, she wasn’t aware. She did do the right thing, eventually, in speaking out in support of parents who know their child was vaccine damaged. So perhaps some forgiveness is in order. But this wholesale embracing disturbs me a lot, and here is why.
She STILL isn’t saying all of the things that she ought to be saying. If you visit Autism Speaks website, you will see an interview between Don Imus and Ms. Healy, in which she has stated that the mercury is no longer in flu vaccines given to children. Granted the interview has been archived and I don’t know when it was originally published on Autism Speak’s site. But if Ms. Healy, or Autism Speaks, or Mr. Imus has done anything to publicly correct this misstatement, I’m not aware of it and I go out of my way to be aware of these things. I’ve contacted both Don Imus and Ms. Healy, Ms Healy by snail mail at her home. I’ve told her that it’s not true, her statement that the mercury is gone from children’s flu shots.
I was in my local Walmart, in Strongsville Ohio just a couple of weeks ago. The nurses there are giving the S.O.S. at the flu shot clinics there, and they are giving these shots to children. I looked at a package insert and the package insert said that doses from multi-dose vials contained twenty five micrograms of thimerosal. I asked if the shots being administered were from multi-dose vials and was told yes and I then asked the nurses “are you giving those to children?” and was told “yes if the parents want us to.”
So what do we have here? We have people who should know better STILL giving parents dangerous misinformation, while all of the while the ‘autism community’ is patting them on the back telling them what a marvelous job they’ve done. I find myself wondering if the ‘autism community’ doesn’t give a rat’s rear end about the additional children who are being poisoned. I find myself wondering if they are saying to themselves “ah well, my child has already been poisoned. What do I care if the poisonings continue?” I really can’t come up with any valid explanation as to why this behavior, this incessant feeding of misinformation to the public, continues and is in fact, it seems to me, so often fostered by the ‘autism community’.
For five years now I’ve watched as so many who’ve attempted to speak publicly about their view that vaccines are complicit in autism have been shunned, censored, lied to, lied about, told to shut up, forced to shut up, threatened with arrest, and given the most asinine responses (or no response at all) to legitimate questions about vaccine safety. I’ve watched as people have either supported the status quo (vaccine makers/public health officials) or submitted their resignation.
And yet, in my experience, over and over again the people who behave this way are always forgiven, are always accepted. It seems to me that if the ‘autism community’ doesn’t stop making excuses for this sort of behavior, it isn’t ever going to stop.
Posted by: Robin Nemeth | October 19, 2009 at 12:38 PM
The BBC is not responsible or liable for any diagnosis made by a user based on the content of the BBC Health website.
A variety of other environmental factors that affect brain development before, during or soon after birth, also play a part (possibly acting as a trigger). Despite reports suggesting a possible link between MMR vaccination and autistic spectrum disorders, scientific evidence has confirmed the vaccination does not increase the risk.
Dr Patricia Macnair,
BBC - Complaints
Posted by: Robin Rowlands | October 19, 2009 at 11:50 AM
Thank you so so much, Katie, for your continuing coverage and advocacy.
Posted by: Twyla | October 19, 2009 at 11:36 AM
Actually, I don't think Dr. Landis was seriously suggesting that children with vaccine-related injuries get looked at. There could be other notes she was referring to in that meeting when she claimed this. However, in the note that formed the basis of her resignation, she merely stated that showing how autism is multi-systemic would open up more opportunities to study autism in people who were compensated in vaccine court. She introduced it as a supporting claim to advance her conspiracy theory about the motive behind Lyn Redwood and others for wanting autism to be studied this way.
I don't know about what her other notes said, she may very well have taken such concerns seriously, but based on that particular note and that note only, it did not read as though she was seriously suggesting that avenue of research at all. Quite the opposite, in fact.
Posted by: Jake Crosby | October 19, 2009 at 11:33 AM
What Katie said, x 10!!
Posted by: JB Handley | October 19, 2009 at 11:25 AM
I wouldn't hold my breath waiting on Dr Janvier to follow suit and resign. She clearly believes her own press: http://www.autismfamilyservicesnj.org/pdf/ezine/vol1/Issue_5.pdf
Her fans do not believe in biomed and neither does she. Of course she is offended by the idea that autistic children are sick. There is no way she's going to admit even the possibility that she completely missed the boat.
Dr Landis is only getting out now because she's smart enough to realize she would be under our microscope from here on out and would be shredded. So she's slinking back under her rock. I have no doubt that her true opinions are unchanged. Or that she'll be replaced by another one just like her.
CAA = Pretending to Combat Autism Act? Don't know whether to laugh or cry.
Posted by: Val from Ohio | October 19, 2009 at 10:44 AM
Have you actually tried calling these numbers you’ve listed? I’m just curious, because when I tried to call them, I ended up having the same sort of surreal conversations that I had a few years ago when I spent some time trying to find out what percentage of flu vaccines still had twenty five micrograms of thimerosal per dose.
First I called the toll free number you listed. The phone was answered by a woman who spoke so fast I could barely understand a word she said. I had to ask her to repeat herself about four or five times before I finally understood her to say “Health and Human Services Hotline”. I told her I would like to speak to someone about the Interagency Coordinating Committee, regarding the spending of money for autism research. She told me that she would transfer me to my State Department of Health, in Ohio. I was pretty confused by that, so I asked her why she would be doing that. “Does my State Dept of Health have any input into who is on this committee?”, I asked. I was told that yes they did.
So I got transferred to the State Dept of Health, where, surprise surprise, the woman there had no idea what I was on about. “Have you heard of the Combating Autism Act?” I asked her, because it’s been my impression that the IACC was set up to determine how CAA money would be spent. Perhaps I’m incorrect about that. Anyway, she had heard of the CAA, but not the IACC. While I waited on hold for a few minutes while she tried to find out further information about the IACC, I went to the IACC website-- http://iacc.hhs.gov/ -- which is, as you can see, a US Dept of HHS site. I read, there at that site,
‘The IACC mission is to .. facilitate the efficient and effective exchange of information on ASD activities among the member agencies.’
Something they do, I presume, by passing handwritten notes to each other under the table, ahahah.
The woman with my State Dept of Health couldn’t help me at all but I told her that that didn’t surprise me any as the IACC is a federal committee and I didn’t know why the US Dept of HHS transferred me to her in the first place.
I called back the US dept of HHS again, at the toll free number, 877.696.6775. (The ‘hotline’ number) The woman there told me that the only questions the hotline number is set up to answer are questions about referrals to State Departments of Health.
I thought I would try calling the 202.619.0257 number. Perhaps, I said to myself, I will have better luck with that phone number.
It is out of service.
I double checked the federal government’s website to find out what the phone number at HHS is supposed to be. Perhaps you’d posted the wrong number? Nope. You’ve got the numbers right.
They just don’t feel that they have any responsibility to answer any questions.
Posted by: Robin Nemeth | October 19, 2009 at 10:29 AM
This tragedy has to stop - it has gone well past the point when common sense and simply decency should have kicked in.
The smoking industry for years was able to state that there was no link between smoking and cancer because they went out of their way to avoid any research that they feared might establish such a link and were quick to terminate any research that was going of message.
With vaccines and autism Government and Industry have been playing this game together for some years now ( both in the USA & UK ) and turned a blind eye to the many thousands of children whose lives have been ruined.
Posted by: Robin Rowlands | October 19, 2009 at 10:28 AM
I 'kind-of' agree Robin. However, it is better that people of this mindset leave the board to show what a farce the whole committee really is. Obviously, this person thinks little of us parents and don't deserve to be anywhere near this whole controversy.
ps. Yeah, I'm after the money. My son no longer qualifies for the court because we passed the statute of limitations. We had to file for BK last year. Yeah, we're gonna make millions!
Posted by: Kevin | October 19, 2009 at 10:09 AM
Alison Singer is a chairwarmer for Dr. Offit.
Posted by: Stagmom | October 19, 2009 at 09:49 AM
Katie wrote: “I think our community should accept Dr. Landis’ apology.”
No. No, no, no no no no NO NO NO!
Why has she resigned now? Why didn’t she speak what she ostensibly believes, earlier, in front of that committee and openly?
This is just exactly what way too many people have been doing for way too long. Profiting off the poisoning of our children, going along with the charade, winking, pocketing funds under the table, cashing their checks, then apologizing when they’re caught.
The apology doesn’t change a damn thing. There are never any consequences, and nothing ever changes.
Well it’s always been damn near impossible for me to be a part of any community. If this is what the ‘autism community’ is going to stand for, ya all can count me out of this one as well.
Follows is my comment to David Kirby’s column on this story on the Huffington Post:
Adults, presumably neuroypical adults, passing notes like grade school children. Hmm. Sounds to me like they’re somewhat lacking in social skills. How ironic.
I don’t know, maybe I’m missing something here. Forgive me if I am, it’s just that I have little time for grade school antics.
Here’s the question that I’ve been asking myself for the last five years: Why is it that whenever people want to speak their mind about this issue--speak what they believe to be the truth--they find that they can’t? They find themselves whispering, passing notes, being told to shut up, being forced to shut up, being censored, threatened with arrest or with losing their jobs? Either that or else they’re mysteriously resigning.
The late Bernard Rimland, I am told, referred to the CAA as the ‘pretending to combat autism act’. Nothing is going to change until people stop worrying about their jobs, their friends, the spigot of research funds and charity funds that pour into their coffers. They need to STOP PRETENDING.
I myself would consider accepting Ms. Landis’ apology only after she explains to parents why it is that she couldn’t speak her mind openly at that IACC meeting. Why couldn’t she just speak about the other part of her note, there at that meeting? The part that “addressed the fact that it is important for autism researchers to study the children who have been most profoundly affected by their response to vaccines.”
And why has she resigned NOW?
Posted by: Robin Nemeth | October 19, 2009 at 09:38 AM
Another who should resign...Dr. Janvier.
Posted by: Pamela | October 19, 2009 at 09:24 AM
Again and again I ask, "Why does Alison Singer have a seat at this important table?"
She is a PR expert who was obviously appointed as a representative to advocate the policy agenda of Autism Speaks. The fact that she resigned from that organization and hastily set up another, clearly unrepresentative non-profit and soapbox for vaccine promoter Dr. Paul Offit, who is not an expert on autism, should have resulted in her immediate disqualification from the panel.
Alison Singer should be removed from this critical committee. She is not an expert on anything other than public relations. Her organization's goals are questionable, at best. Her support within the community is negligible, if one looks at the historic record.
"Ms. Singer says she intends to keep the Autism Science Foundation extremely lean, with no paid employees and an office in the basement of her home."
The above from her own "Press Kit"
With no constituent base in the autism community and only a desire to hyper-promulgate the views she and her allies
deem worthy, is this the kind of voice our community needs on this Committee? I think not.
I will be calling on Dr. Insel, Kathleen Sibelius, Kareem Dale, and others to ask for Ms. Singer's prompt resignation in favor of a representive who has a broad constituency within the autism community.
Dr. Insel might be wise to make it a twofer and offer his as well.
Posted by: Dadvocate | October 19, 2009 at 09:23 AM
Katie, thank you so much for continuing to speak the truth about the IACC. The time you put into staying on top of every meeting and keeping us informed of their ridiculous behavior is so helpful to our community. Knowledge is power---and you continue to keep us in the know about this sham-of-a-service to our families.
I agree with Bensmyson---Kathleen Sebelius and her crew need to know that we are not fooled by the pretense of this committee. We, as a group, should demand that REAL action be taken to help our children and Sebelius should feel some pressure and accountability for making that happen.
This charade has gone on far too long...It's deplorable.
Posted by: Sunny | October 19, 2009 at 08:30 AM
I am in total agreement. Thank you Katie!
Posted by: Jeanne | October 19, 2009 at 07:20 AM
Someone with some media contacts needs to push the announcement of the resignation of Landis as a door opener for the rest of the story regarding IACC and the points Katie brought up.
At the very least we should all write Secretary of the Department of Health and Human Services Kathleen Sebelius and express our concerns.
The U.S. Department of Health and Human Services
200 Independence Avenue, S.W.
Washington, D.C. 20201
Toll Free: 1-877-696-6775
Posted by: bensmyson | October 19, 2009 at 07:03 AM