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.