The Raw Reality of the Autism Omnibus Program: Rebecca Estepp Speaks Out
By Rebecca Estepp
The Court of Federal Claims Bar Association held its annual Judicial Conference last week in Washington DC. On Tuesday, the Special Masters of the Vaccine Program were made available to the petitioners’ bar to discuss the decisions of the first six test cases as well as talk about the future of the Omnibus Autism Program (OAP). I decided to attend and prepared a statement to read during the question and answer period. Before the panel discussion started I was informed that statements would not be allowed. However, I was notified that statements could be made during the public comment portion of the Advisory Commission on Childhood Vaccines (ACCV) meeting on Thursday. I wrote this statement to read in front of the Special Masters and I am sorry that didn’t occur. However, I was able to ask the Special Masters questions during the panel discussion. And I am grateful for the opportunity to convey my frustrations of the OAP during the ACCV meeting:
My name is Rebecca Estepp. My son Eric is a petitioner in the Omnibus Autism Program. I attended one week of the Cedillo hearing in 2007 and one week of the Mead and King hearings in 2008. I am here today to provide you feedback on the Omnibus Program from the petitioner’s point of view. I am speaking for my family today, however, I would like you to know that my feelings are very similar to many of the 5000 families still left in limbo in this program.
My family is just an average American family. We are not radicals or troublemakers. My husband is a Lieutenant Colonel in the Marine Corps Reserve. Since 2003, he has been deployed to Iraq twice and Afghanistan once. My husband’s civilian job is with the federal government. So my family is almost identical to several people’s families sitting in this audience today. Except there is one major difference, my son had a vaccine reaction and then regressed into autism.
I have been in the autism community for ten years. In fact, I have the Omnibus Program to thank for starting me down the advocacy path. The first parent support meeting I arranged was with an attorney who educated parents of their rights in vaccine court. At that time, parents had no idea that this program existed. I speculate that is largely still true today.
From the beginning, it was obvious to my husband and I that Eric’s autism was caused by his childhood vaccines. Raising a toddler with autism is beyond challenging. We spent most of those early years just trying to obtain proper therapies and medical treatments for him as well as trying to survive Eric’s tantrums and sleepless nights. We were exhausted most of the time and my husband and I started losing faith in many of the resources that were supposed to be helping. Our pediatricians gave us pearls of wisdom such as spanking our son severely when he had tantrums. These same physicians also told us that Eric would be institutionalized when he was older. We had no faith in our insurance company as they denied claim after claim. And dealing with our local school district was anything but easy.
When I received a call in 2002 from an attorney who explained that parents like my husband and myself had a remedy in federal court, I felt reassured. I began to have a little more faith in our country. Later when I looked up “Vaccine Court” on the Internet, I was very happy to see the words, “intended to provide individuals with a swift, flexible, and less adversarial alternative to the often costly and lengthy civil arena of traditional tort litigation.” I thought that sounded promising.
As time went on, I began having serious doubts about vaccine court. First, since there was no movement in this program for years, I began to question the term “swift.” In fact, at this point “swift” is almost laughable. My son was in preschool when we filed his claim. He is now midway through his middle school career.
It was during this time, I learned of the absurd statute of limitations in Vaccine Court. As most of you know, the statute is three years. But it is not three years from the date of autism diagnosis. No, it is three years from the first symptom of developmental delay recorded in the child’s medical records. And get this; the clock starts at that time whether or not the doctor even mentioned the recording of a symptom to the parents. A simple scribble from a pediatrician of “motor delay?” or “speech delay?” can start the clock without the parent’s knowledge. Since many children do not receive a formal autism diagnosis for years, it is quite possible that their statute ran out before they could ever enroll in the Omnibus Autism Program because they had not received the autism diagnosis in time. This three-year statute of limitations is a miscarriage of justice and hopefully the Cloer decision will change it.
Then I found out that the petitioner’s attorneys were blocked from using the Vaccine Safety Data (VSD) to prove their cases. This is beyond belief. Taxpayers fund that data! The VSD information should be made public for everyone and anyone that wants to see it. It should especially be made available for the attorneys of children who are seeking compensation. If the vaccine program is so safe, why is the data being hidden? Where is the transparency?
As I mentioned before, I attended two weeks of the test case trials. It was at that time that I knew “less adversarial” was also a facade. I watched the DOJ attorneys use ad hominen personal attacks against the petitioner’s experts. They dredged up small professional regulatory technicalities from decades ago to discount the experts even though there was no jury. Thus it had no bearing on the testimony they provided. The respondent’s attorneys made being an expert witness for the petitioners as painful as possible which puts the petitioner’s cases in a tough spot. Now experts cannot justify going through a public flogging by participating in this court.
Case in point is Special Master Hastings’s decision in Cedillo. He wrote, “After studying the extensive evidence in this case for many months, I am convinced that the reports and advice given to the Cedillos by Dr. Krigsman and some other physicians, advising that there is a causal connection between Michelle’s MMR vaccination and her chronic conditions, have been very wrong. Unfortunately, the Cedillos have been misled by physicians who are guilty, in my view, of gross medical misjudgment.”
I couldn’t believe my eyes when I read that paragraph, “gross medical misjudgment?” Not only is Special Master Hastings, in my opinion, very wrong about Dr. Krigsman; but think of the message that was sent to experts that may have been considering offering their opinion in one of the claims. These people now know that they could be risking their career by helping one of the claimants. Why would any credible expert spend any effort in this court when a Special Master could smear their professional reputation?
And surely everyone in this room knows that cases rely on their experts. Think about the attorneys who may have been considering taking a case to vaccine court. Why would they want to try a case if they cannot get experts to back up their theories? So not only can the petitioners no longer access experts to back up their claim, but also these families can no longer find attorneys to try their cases. Ultimately, this leads to the legitimate scientific debate of vaccine injury being kept out of the program. I am beginning to think keeping a legitimate debate out of this court was the ultimate goal.
I must say a few words about Dr. Arthur Krigsman. In our house, Dr. Krigsman is a saint. Eric had horrible gastro-intestinal problems until Dr. Krigsman treated him. I know with all my heart that Eric would not be mainstreamed for part of his day today if it were not for him. Seeing the professional assassination of Dr. Krigsman as well as the other experts in the Cedillo decision from a Special Master broke my heart and made me incredibly angry.
However, I think what made me the most furious was Special Master Vowell’s statement in the Snyder decision. To refresh memories, Special Master Vowell wrote, “To conclude that Colten’s condition was the result of his MMR vaccine, an objective observer would have to emulate Lewis Carroll’s White Queen and be able to believe six impossible (or, at least, highly improbable) things before breakfast.” As if it were not heartbreaking enough for families like mine to see the test cases fail, Special Master Vowell made sure that she added insult to injury by making a mockery of our children’s experience by comparing it to a work of fiction. I was stunned when I read her words and it demonstrated to me further the bias was there from the beginning in this court.
What I am about to say may shock some in this room, but I do not believe that every case of autism was caused by vaccines. In my years in the autism community, I have met parents that have told me that their child was delayed from the beginning. Guess what? I believe these parents, why would they lie? I also believe the thousands of parents who have described their child’s vaccine reaction. I am sure that one day that autism will be similar to diabetes with a type 1 and type 2 distinctions. I envision Type 1 autism being classified as “classic autism” and type 2 as “regressive” autism. The cases this court heard in 2007 and 2008 were, in my opinion, type 2 “regressive.” I believe the current epidemic of autism is largely made up of “regressive” cases. I think these test cases were unsuccessful because you all were thinking these “regressive” kids should fit the mold of the “classic” kids and they are most definitely different.
So yes, this court has been a set back for my family. As my husband so succinctly said on the day of the first test case decisions, “This is a court where government attorneys, defend a government program using government funded science decided by judges who work for the government, kids like Eric NEVER had a chance.” I am so glad that ABC, CBS, CNN, the AP, the NY Times as well as hundreds of other outlets throughout the world picked up that statement. It hit a nerve with many and exposed how unfair this court really is.
However, in no way do the decisions in this court make me give up. It certainly does not make my colleagues stop their advocacy for a safer vaccine program either. Pharma can keep bank rolling more and more PR campaigns and non-profit organizations with the “vaccines do not cause autism” message. But the fact of the matter is that 89% of parents rated vaccine safety as their number one health concern according to a study from the University of Michigan from just days ago. Pediatrics reported last March that 1 in 4 parents believe that vaccines can cause autism in a healthy child.
Do you want to know why this is happening? Because parents know that Hannah Poling’s vaccines not “causing” but “resulting” in her autistic symptoms made for the same outcome. It’s also because on the playgrounds, schoolyards, parks, and cul-de-sacs of this country; parents are reporting that their healthy child changed after their vaccines. There are so many affected children now that any PR campaign is going to be rendered useless versus the eyewitness accounts of vaccine injury. The nation’s parents are losing faith in the vaccine program. That’s not the fault of parents like me. That is the fault of the powers that be that continue to bury their heads in the sand and not respond to this dire situation appropriately.
The CDC reports that 1 in 110 children now have autism. I hope most of you know that rate is 12 years old. It is a statistic from the last century. It is amazing to me that the CDC can pinpoint where tainted eggs are in a matter of days but yet not be able to give our country an accurate rate of autism. I have a feeling they are sitting on the current number because the true incidence rate is probably so disturbing that the CDC doesn’t know what to do or how to spin the news yet. Needless to say, our country is going to be hit with a tsunami of disabled adults very soon. The vaccine compensation trust will be kept solvent because these 5000 claimants will never be paid out of that fund, but the government is going to be responsible for the care for these individuals for the rest of their lives. So in the end, are you really out ahead?
Taxpayers are going to have to pick up the tab for these kids. I don’t think that is fair. I think the people who made this mess should clean it up, meaning the federal government and the pharmaceutical companies should be grabbing some brooms and mops very soon. Together, you can take care of these kids. Pharma may have to forfeit a quarter or two of their billion dollar profits to do so, but so be it. They were the mess makers. And members of the government, you were pretty much duped by the pharma lobbyists when the Vaccine Injury Compensation Act was passed. Please take off your blinders and recognize the correlation between the expansion of the vaccine program once that pharma was assured of liability protection. When those vaccines were added, the schedule became bloated and the autism epidemic was born.
As mad as I am at this country for wiping its hands of this tragedy, I think it is ironic that I have more faith in it than you all do. You see, I think if we collectively work together we can take care of the individuals that were harmed and change the vaccine program to make it safer for all people. I just wish you all saw it the same way too. Until that time comes, I am going to keep advocating, helping families, and lobbying for a better future for the vaccine injured in our country.
kerbob1 - your article "A Snake in the GRAS" is fantastic! I wish I had seen it earlier. I've added your blog site to my favorites.
The issue of "placebo" fraud in the vaccine industry is of EXTREME importance. I knew about the aluminum adjuvants in the placebo arm of the pivotal Gardasil studies. I only recently learned that this year's flu shots were approved on the noninferiority margin using antibody titers as a proxy for efficacy and a currently or previously marketed flu "inoculation" as an active "safety" control. I did not know that there was a control "placebo" arm with thimerosal. This is outrageous. Are they still doing that?
We should quickly try to locate the pivotal studies upon which FDA granted "approval" for each one of this year's flu shots, including the new super potency flu shot for seniors, to specifically identify the placebo employed in gaining market approval. Why the urgency? It would provide yet more evidence that we are being systematically poisoned by the vaccine schedules and mandated vaccines.
Are there any "ingredients" in any of the marketed vaccines which are NOT being disclosed to either FDA or to the public? real question!
Why do this year's flu shots seemingly lack an adjuvant in the U.S. while they have adjuvants outside the U.S.? There's something VERY FISHY here!
Posted by: patrons99 | November 09, 2010 at 10:06 AM
This article was written in hopes of encouraging people to investigate further.
Suppose a pregnant mom is targeted by these stupid flu shot studies?
First, she is given a placebo with Thimerosal, but the fact that the Thimerosal is in the placebo is not disclosed.
Then, still pregnant, she is told that she needs to have the real shot. Since she's never had the shot before she'll get two doses?
And oh yeah, because the idiots have lied to everybody in America, the pregnant mom is told she needs to have the Swine Flu shot.
1 Thimerosal-containing placebo
2 Thimerosal-containing flu shots
1 Swine Flu shot
Oh, she's now had the baby. Well, her infant child is now going to get not one, but two flu shots, and maybe a Swine Flu vaccine to boot.
A Snake In The "GRAS"
Or Snake People visit The "Baghdad Bob" School of Vaccine Research
http://kerboblog.blogspot.com/2008/10/snake-in-gras.html
Posted by: kerbob1 | November 08, 2010 at 12:52 PM
Lately there's been talk about taking Aspeger's Syndrome off the Autism Scale.............Hmmmmmmmmmmmmm.................... Why? so they can fudge the numbers even farther?
Posted by: Theresa | November 07, 2010 at 09:35 AM
Becky - thank you for writing & delivering such a powerful statement. It is people like you who give me faith in helping changing the course of the autism epidemic in America.
Posted by: Ali Hoffman | November 03, 2010 at 09:05 AM
Hey Kerbob1 - Just wanted to let you know in my son's school there are NO children with autism or even an aspie in kingergarden or first grade. I found one kid in general ed first grade with a gait and dyslexia. If you want to see real autism in my son's school - look at the fifth graders (born 1999 or 2000.)
Posted by: Mary | November 03, 2010 at 06:11 AM
Re: "The CDC reports that 1 in 110 children now have autism. I hope most of you know that rate is 12 years old. It is a statistic from the last century. It is amazing to me that the CDC can pinpoint where tainted eggs are in a matter of days but yet not be able to give our country an accurate rate of autism."
The CDC has the current statistics but they are not going to release them because the facts are condemning. It has previously been determined for 2007 from government public school records at 1 in 67. [However this does not include those who are home schooled and those in private schools.]
When 1 in 150 is really 1 in 67
By Raymond W. Gallup & F. Edward Yazbak, MD, FAAP
http://web.archive.org/web/20071223152720/www.vaproject.
org/yazbak/1-in-150-is-really-1-in-67-20071005.htm
On February 8, 2007 the CDC released “New Data on Autism Spectrum Disorders (ASDs) from Multiple Communities in the United States.” (1)
"Since then, most people and the press have been under the impression that in the United States, the “new” CDC- reported ASD prevalence rate of 1 in 150 was a recent discovery that was current for 2007 when indeed it was not at all. The study did not document a prevalence of 1 in 150 among children born now or five years ago. The study revealed that among U.S. children born in 1994, thirteen years ago, 1 in 150 on average had a spectral disorder."
The actual statistic at this point was more than twice as bad as the CDC was claiming. Therefore, we can double the current "statistic" for a more realistic estimate and that would be 1 in 55.
What we need to realize here is that the majority of so called medical statistics are manipulated to produce the desired outcome. In conventional cancer therapy statistics for instance, the only patients counted are those who "complete the therapy". This means that all of those who die before therapy completion are excluded thereby resulting in a totally false average remission rate.
The mother of one of my daughter's friends received chemo for a brain tumor, but she obviously didn't "complete the therapy" because it was a 12 month chemo program and the chemo killed her within 4 months. The official report is always that the "cancer" caused the deaths, but either way, those who die are not permitted to become an inconvenient testament to the fact that the cancer survival rates haven't improved since the 1950's and therefore the so called "therapies" are not successful.
Another statistical manipulation occurs when patients temporarily go into remission until their damaged immune systems result in cancer returning worse than originally. Regardless of the fact that the cancer returns in the vast majority of cases, these patients are listed as "success stories" because they experienced temporary remission, even though the cancer returns and ends up killing them. The drug industry knows how to prevent the inconvenient facts from interfering with their sales pitch and their profit margin, regardless of whether it is cancer drugs or any other drugs that not only don't work, but are killing people or permanently damaging their health. The same goes for vaccines.
The cancer fund raising for research is a total fraud and is in reality an ingenious method of raising money to give to the pharmaceutical industry in their "search for a cure". There are hundreds of documented cancer cures in alternative medicine all over the world, but since they cannot patent herbs such as those in Esiac Tea and Hoxey, or water, baking soda, hydrogen peroxide, calcium, Laetril (Vitamin B-17) etc. they pretend that "no cure exists so we need your money to find the cure".
All of these people who unknowingly participate in "the race for a cure" are equivilent to "walking for autism" sponsored by Autism Speaks. It's the SAME DAMN SCAM.
The Science and Politics of Cancer:
http://video.google.com/videoplay?docid=5528328984547372206#docid=-3957307988644640556
Posted by: Autism Grandma | November 03, 2010 at 01:27 AM
Bravo, Becky!
Posted by: Lisa Rupe | November 03, 2010 at 12:05 AM
Thank you so much for traveling all the way to Washington D.C. and speaking out so articulately! It is just so crazy that the system which is meant to replace tort liability and provide assistance to those injured by vaccines is instead so completely lacking in speed and responsiveness. The vaccine injured have no recourse. They are simply abandoned by our government and by the fund consumers pay into which is supposed to provide services and care and treatment.
Posted by: Twyla | November 03, 2010 at 12:00 AM
Jim,
The Special Masters had no idea that a parent would be in the audience before the panel discussion started. This was a judicial conference and 99% of the audience were attorneys. So to be fair, they weren't expecting me. However, I knew that the Masters had two to three hours to go over about 30 minutes of content so I thought a ten minute statement from a petitioner was a reasonable request.
Posted by: Becky Estepp | November 02, 2010 at 10:18 PM
Becky, What a beautifully written statement--every single paragraph is a powerful message. Thank you for saying exactly what needs to be said.
Posted by: Cat Jameson | November 02, 2010 at 10:10 PM
Wow. Just--WOW. What a powerful statement.
Can you send this as a letter-to-the-editor to EVERY major newspaper out there? And maybe some magazines as well?
Posted by: Taximom | November 02, 2010 at 09:34 PM
Cherry,
The job of fudging the figures is in the hands of CDC anti-litigation bloc autism research fraudster Poul Thorsen.
At last corner, he was hard at work attempting to prop up sagging ASD numbers by manipulating the DSM criteria.
Reports from school districts across the country indicate that rates of autism are going down and the majority of children now are considered "quirky" kids. These would be Aspberger's cases.
If you look at the US Senate's behavior when they ratified anti-litigation funds for Autism Speaks they actually told the US Centers For Disease Control and Invention to STOP COUNTING Autism.
Now why'd they do that?
It makes no sense in the middle of an Autism epidemic.
It means one thing. They blew it. They mercury poisoned our children.
Posted by: kerbob1 | November 02, 2010 at 09:21 PM
Becky, thank you for describing so articulately the profound frustration and unending anguish felt by families in the Omnibus Autism Proceeding.
How perverse it is to live in these grotesque times when taxpaying vaccine consumers have been so utterly betrayed by the very people paid to protect the health of our children.
Posted by: nhokkanen | November 02, 2010 at 05:22 PM
I couldn't have said it better myself. Exactly what's on my mind. Thanks.
Posted by: 4Bobby | November 02, 2010 at 04:03 PM
Kerbob 1, Thanks for the info on Don Vito . I think its important for the history of autism that we keep track of the great men of public health who had a hand in keeping mercury in children's vaccines all over the world. I mean, Hey, mercury wouldnt have been used in medical systems all over the world for thousands of years if there weren't something good in it !
And Friends, just be a little patient. The last data for the incidence of autism is from the last century? In a couple of years, when the cohort of swine- flu vaccine autistics of 2009 is old enough to be diagnosed , the CDC will be on the job, getting the stats out and telling the doctors- "See, we took the mercury out of the vaccines and autism is still rising" That's what early diagnosis is all about.
And Rebecca, You're terrific- Truth , Simplicity and Real Science. I was just thinking today that there needs to be a book published with the real autism stories- not just the nice ones about autistic people who pet cows and play golf. I hope you find a place in that book.
Posted by: Cherry Sperlin Misra | November 02, 2010 at 02:06 PM
WOW! This is so powerful! And so correct!
Way to go, Rebecca!
We will keep fighting for our children, and hopefully save more from the same fate!
Posted by: Judith | November 02, 2010 at 01:08 PM
What a great letter, Rebecca! I feel so bad for what you guys have to go through. That statute of limitations thing is a joke and they damned well know it.
Posted by: Jen | November 02, 2010 at 01:03 PM
Since vaccine court refused to allow this as an official public comment this is basically useless.
Becky forgot to mention the fact that the chief medical officer, Vito Caserta, of the vaccine injury compensation program (vaccine court)was at the June 7-8, 2000 CDC Simpsonwood secret meeting which most accept as nothing more than collusion between government officials and corporate interests.
Vito even suggested ways to avoid a study of vaccinated versus unvaccinated individuals.
As a result of Caserta's active participation in avoiding a vaccinated v. un-vaccinated study, I probed the issue and found that vaccine studies pit Thimerosal-containing vaccines against Thimerosal-containing placebos.
There's only one reason they invented a Thimerosal-containing placebo, to avoid detection of adverse neurological outcomes caused by the ethyl-mercury vaccine(s).
I like Becky and agree with the things she said. Send it to Dan Burton or John McCain and maybe they'll read it during floor speeches?
Posted by: kerbob1 | November 02, 2010 at 12:30 PM
AMEN!
I think if we faught the 'taxpayers are going to pay out the rearend' fight, I think MAYBE more people who otherwise might not be 'concerned' will start to become concerned...I mean, its just a matter of addition/multiplication really....IF our kids are NOT protected with the program they are supposed to be, the Vaccine Injury Compensation program Fund, then the taxpayers pay for it...and the VICP fund is actually a surcharge on vaccines, so in essence we are paying TWICE for these injuries!
Hmmm...I think the 'tax' angle is a great one, especially with the 'anger' and 'taxes taxes taxes' political fights these days!
Angie
Mom to Ethan, Alex, and Megan
Posted by: Angie | November 02, 2010 at 12:12 PM
A poignant and articulate analysis that in essence nails the court (and government) for turning their backs on our kids. Great job Beck!
They can change this and do the right thing.
Posted by: Lisa @ TACA | November 02, 2010 at 12:12 PM
Becky,
You are my hero! I am always impressed with your calm yet powerful approach. Thank you!
Posted by: Teresa Conrick | November 02, 2010 at 12:10 PM
One of the best statements I have ever read.
Posted by: Sylvia | November 02, 2010 at 10:38 AM
Thanks Becky. You are the voice for thousands. Many blessings to you and your family.
Posted by: Lisa in Texas | November 02, 2010 at 10:35 AM
Bravo, Becky!! Thank you for being such an eloquent voice for our community.
Posted by: Donna L. | November 02, 2010 at 10:21 AM
Excellent piece Becky! You covered so many important aspects.
Indeed I would love to know the current rate of autism. They studied NJ and found 1 in 94, and then decided not to study NJ again. Sure looks like they don't want to know the real count.
Posted by: AnneS | November 02, 2010 at 09:22 AM
Excellent article. Thank you so much for your thoughts. You said so eloquently what a lot of us are thinking - my family included.
Posted by: Mike | November 02, 2010 at 08:59 AM
Rebecca this is the best statement that I have read it is just amazing thank you for all your energy and efforts.
Posted by: victor pavlovic | November 02, 2010 at 08:44 AM
So sad to read, but so true. My sentiments exactly. You can't even drive down your street without knowing which houses have children with autism in them.
Posted by: Kevin | November 02, 2010 at 08:33 AM
Rebecca, thank you for this powerful message.
Why are the Special Masters so fearful of parents' statements?
Posted by: Jim Thompson | November 02, 2010 at 08:04 AM