The government says childhood vaccines are safe. So why are they quietly making payouts to so many kids with autism?
Mary Holland: “There have been people who were compensated for vaccine induced brain damage, who have autism. That is not a trivial finding in our view and it requires further investigation.”
Many parents and advocates say this is all about hypocrisy and lots of money.
Now from Centerville, Tennessee, here is Greg Dobbs with his story: “Vaccines and Autism: Mixed Signals”
Sadly, You don’t need a medical expert to tell you that Kimberly Sue Leteure of Centerville, Tennessee is not normal. And you can say the same of Michelle Cedillo of Yuma, Arizona. Both girls are brain damaged and both have limited language and socialization, lots of repetitive movement, no eye contact, no tolerance for change. This is a traditional picture of severe autism.
Both families, Kimberly’s and Michelle’s insist that the cause of their autism is the vaccines they received as little girls. But there one big difference between them: despite the fact that the United States government insists, because of some studies, that vaccines don’t cause autism, Kimberly was compensated for her condition by a special court created 25 years ago by Congress to pay damages to people for what are called their vaccine injuries. She’s been compensated, Michelle has not.
Becky Estepp: “Eric was born January 23, 1998. He was 8 pounds, 13 ounces. It was a long labor. He was much bigger than any of us would have expected. He was perfect.”
Although much more mildly autistic, Becky Estepp’s now 13 year old son Eric is another example. Perfect, until nine months. That’s when, although he was sick, Eric had his first vaccination for Hepatitis B. Then after that and after each subsequent vaccination, screaming and diarrhea and infections and fevers and rashes. And over the next two years, a slow slide backwards.
Estepp: “I looked up what to expect the toddler years, and I saw a checklist for autism. And I could put a check in every single box. Speech delay. He spoke, but it was echolalia. I would say, ‘Hi Eric, how are you?’ And he’d say, ‘Hi Eric, how are you?’ He had speech, but it wasn’t meaningful speech. It wasn’t reciprocal. And I just looked at my husband and I said, ‘He has this.’ I read him the checklist and my husband said, ‘He does.’”
But, like Michelle Cedillo, Eric hasn’t won compensation for a vaccine injury. Which leads to the question, if the government says autism cannot be blamed on childhood vaccinations, then why have some families with autistic children still been compensated, while others haven’t? Why the inconsistency? It turns out it seems to be determined by both timing and semantics. When the special Vaccine Court ruled that Kimberly’s vaccinations were to blame for her condition, it awarded her the resources she needs for round-the-clock care. The money came from a trust called the National Vaccine Injury Compensation Program funded under a Congressional mandate by pharmaceutical companies for victims of vaccinations gone bad.
Michelle, whose medical record show she was just fine before her first vaccinations for mumps, measles and rubella, went to the same court claiming the same kind of cause and effect between her vaccinations and her condition, but the outcome was different. The National Vaccine Injury Compensation Program denied a link and didn’t award her a cent. Yet the chilling story that Kimberly’s mother Sue tells mirrors what Michelle’s mother says also happened to her.
Sue Leteure: “Kimberly was born perfectly normal, no medical issues at all.”
But at nine weeks, came the first of Kimberly’s childhood vaccinations. It changed the family’s life forever.
Leteure: “When she was given the shot, Kimberly screamed like a wild animal, a feral cry. I have never, and I pray to God I never hear it again, heard a baby cry like she did.
This was not just a child screaming because of a needle going into the arm?
Leteure: “This wasn’t a baby crying because of that. It was within 15 seconds of her getting that shot.”
By that night, Kimberly was even worse.
Leteure: “She was full-blown grand mal.
For people who don’t know what that means.
Leteure: A grand mal seizure is when the head goes back, the arms are flailing and jerking, totally involuntary.”
Today Kimberly, born in the early 80s, is almost 30 years old, mentally disabled, subject to seizures, and autistic. Compensation from the federal fund relieves a financial burden, but that’s all.
Leteure: “I would give everything we have got, everything she will ever have, everything we would do, and not be on this road if I could have a normal child. Money means nothing. The only thing it means to me is my daughter’s comfort later in life–not even comfort, safety. A good foundation for her.”
But there’s no money like that to provide a foundation for Michelle Cedillo. Born in the mid 90′s, she’ll be only 17 next week. Or for Eric Estepp who is just 13. The timing of their births was bad. Because, unlike Kimberly Sue Leteure, by the time Michelle and Eric were having their childhood vaccinations, every state was mandating them and a lot more kids were getting them. And a lot more parents were reporting awful reactions. In Michelle’s case, that includes seizures which continue to this day. And in most cases, loss of language, diminished social development, part of the sometimes slow but certain onset of autism. …
Becky Estepp and her husband a lieutenant colonel in the Marine Corps, filed in the Vaccine Court for compensation, compensation for an injury they believe was caused by Eric’s vaccines. They didn’t have scientific proof, but they saw no other plausible explanation for the behavior disorder that haunts their son.
Estepp: “If I would have had Eric and I would have delivered a baby that was disabled from the beginning, I kind of would have accepted that that was my lot in life. But that’s not what happened. My husband and I were given perfection, and then something happened.”
Could it have occurred independently?
Estepp: “I have asked myself that but three hours after the injection, it’s way too much of a coincidence….”
For all the troubles to have start……
Estepp: “for all the troubles to start. I can’t see that. How do you go from healthy bouncing baby boy to all of these problems within three hours.”
The problem is, now flooded by claims, with about 5,000 families all telling essentially the same story as Eric’s, the Vaccine Court took six so-called test cases on which all the other claims would then be judged. They called it the Omnibus Autism Proceeding.
Michelle was one of those test cases. And the government used 17 expert witnesses to argue against her claim of a vaccine injury, none of them actually having examined her. And in the end, although Kimberly Leteure had won a similar claim a few years earlier, the goalposts seemed to have moved. Michelle, along with each of the other test cases, lost, which basically killed the claims of 5,000 autistic children and every claim since. So if you happened to be born in the 1980s, you were compensated. If you were born after that, you weren’t.
Louis Conte: “These are cases from our research. And in this case, right in the case decision, frankly right on page one, it says the DPT vaccine caused this young man to suffer a hypertonic, hypo-responsive collapse.”
Earlier this year, Louis Conte coauthored a report called “Unanswered Questions.” It’s based mainly on the discovery that in the Omnibus Autism Proceeding, the court did compensate kids who did claimed, not that the vaccines had autism, but that they had caused encephalopathy, damage to the brain.
Conte: “The injuries resulted in permanent disabilities involving significant developmental delay, moderate autistic characteristics, and mental retardation.
Conte, a probation officer in Westchester County in New York, has three boys, triplets, two of whom are autistic. He and other researchers found that many of the kids compensated for encephalopathy also are autistic. And they say since autism is a disorder in the brain, to compensate one group and not the other is just semantics.
Conte: “What we did was we looked at the cases of individuals who were compensated for encephalopathy and for seizure disorder and we asked another question, does your child also have autism. And in a surprising number of a handful of interviews, we hardly got to, we don’t even know what percentage of the real population, but in a surprising number of those cases, the answers came back yes.”
Holland: “The government denies there’s any substantial link between vaccine injury and autism. We believe the study that we just did calls that into question.”
NYU law professor, Mary Holland, is another coauthor of “Unanswered Questions.” What their study discovered was, of the 150 families they were able to reach, whose kids had been compensated for vaccine injuries, more than half those kids are autistic.
Holland: “The program hasn’t worked the way it was intended to work. What we found, by contacting families who were compensated, is that since the very earliest years of the program there have been people who were compensated for vaccine-induced brain damage, who have autism. That is not a trivial finding in our view and it requires further investigation.”
The authors of the report wanted to investigate further so they could talk to more than just the 150 families they were able to find on their own, but they ran into a roadblock. When they asked the Dept. of Health and Human Services, which oversees the vaccine compensation fund, for all pertinent documents about it, they were sent this letter saying it would take four to five years to assemble everything and cost them three quarters of a million dollars. But one of the compensated vaccine victims the group did find was Kimberly Sue Leteure.
Conte: “If a child from 15 years ago could get compensated for encephalopathy, but they also had autism, how come a child today who has autism, clearly an encephalopathy and other features as well, just because they have the word autism associated with their case, does that mean they’re not to be considered? Or is this really a matter of public policy because we have an increase in autism.”
Holland: “So I think the key difference between those who are compensated and those who are not, is the A word. The government would tell you the key difference is that in Kimberly Sue’s case, there was an acute encephalopathy. She got a vaccine and within a very short period of time she developed clear symptoms of brain injury, maybe accompanied by a very high fever, seizures often and that that child needed to go to the hospital. And that because of that, she is compensable, whereas the children who had slower onset of their autistic symptoms without that acute episode-typically of seizures–those children are not compensable.”
Yet the onset of Michelle Cedillo’s symptoms was, as the law defines it, acute, but still, her claim for autism as a vaccine injury was rejected.
What the department of Health and Human Services has said in official statements is, encephalopathy can be accompanied by autism, which critics take to mean, vaccine might result in autism, but not actually cause it, which they call transparently tortured logic.
Holland: “They said, we concede that her encephalopathy has features of autism, but we do not concede that her vaccines caused her autism. That to me is word play. It’s mundacious”
Conte: “If you view autism as a separate disease, and right now we have people running around looking for genes for this separate disease of autism, they can’t find it. Despite mapping the genome 10 years ago, no one’s been able to find the autism genes. So what is autism really? When you look it up, it’s not defined in the medical books, other than being referred to as an encephalopathy. It’s defined as a behavioral disorder.”
In other words, it is not a disease that you could identify as a result of a blood test or anything like that
Conte: “Correct. Exactly. Exactly. What it is is a behavioral syndrome that’s the result of something else. It’s always secondary to some sort of other phenomenon, injury, or basically an injury to the brain.”
Ever since the 1990s when vaccination mandates by the states, encouraged by the federal government, became so common there has appeared to be an epidemic of autism in America. And while they don’t have strong scientific research to back them up, those who blame vaccines say they are the only common denominator.
Estepp: “What is the same thing all over America in the early post-natal period? These babies are not all eating the same food, they’re not drinking the same water, they’re not breathing the same air, but we know from the CDC, that over 90 percent of these children in America have received their vaccines. And of that 90 percent, it’s all of their vaccines. So that is the low-hanging fruit. You have all of these parents reporting that their children were fine until they’re vaccinated, and the government’s refusing to look at it. It’s ridiculous.”
Ridiculous they say, when you look at the law, the Vaccine Injury Compensation Program that was created to help Americans who have adverse reactions to their vaccines. The original legislation said that judgments on claims should be settled “quickly, easily, and with generosity.” A federal court ruled that close calls should be “resolved in favor of injured claimants.” But with only one claim in five winning compensation for vaccine injuries, which includes reactions like paralysis and blindness that have nothing to do with autism, it hasn’t worked out that way. Which many of those families attribute to the potential cost to Washington.
Estepp: “And if vaccines were so safe, why do they have a Vaccine Injury Compensation Program? They mandate these vaccines, they say you can’t go to school without them and if they cause all this damage, you know all the autism, they’re on the hook for billions and billions of dollars.”
But the federal government says no, the reason for denying the claims is the majority of credible research finds no links between childhood vaccinations and autism. The other side’s response is that while several studies find no link, they also find no cause.
Even on the website of the United States Surgeon General, the language is tentative. “It seems likely,” it says, “That the roots of most mental disorders lie in some combination genetics and environmental factors, including pervasive developmental disorder and autism.”
In fact, to underline just how little we fully understand, longstanding conventional wisdom that autism is mainly genetic, was upset earlier this year in this study from Stanford and the University of California at San Francisco which looked at twins where one or both has autism and concluded that assumptions about autism being mainly genetic are wrong. Yet this study, published last week by the University of California at Davis, says children with autistic siblings are more likely to be autistic themselves, suggesting once again a stronger genetic link. There is no consensus.
We wanted to interview officials in Washington who would offer the best arguments against the supposition that vaccines can cause autism, but no one would talk. We asked repeatedly to interview someone from the Department of Justice, which argued against the families making claims. Our requests were rejected with the response, “The court’s opinion speaks for itself.”
We also tried interview any of the arbitrators from the Vaccine Court who are called “special masters,” some of whom had mocked the parents as “victims of bad science” with “reconstructed memories” and the doctors who supported them as guilty of “gross medial misjudgment.” None could do it.
We worked with the FDA to get an on the record interview. They declined.
And we tried to repeatedly to interview someone, anyone, from the Department of Health and Human Services, which administers the Vaccine Injury Compensation Fund, including Secretary Kathleen Sebelius. The Secretary was quoted last year in Reader’s Digest saying of those who argue that there’s a link between vaccines and autism, “We have reached out to media outlets to try to get them to not give the views of these people equal weight in their reporting.”
When we asked her agency last week whether she had really said that, they responded, “No one here can remember or determine that this quote is factual.”
All they did offer by way of an interview was to accept written questions, which means no follow-up. So we asked in an email, is all the science in on the question, what causes autism? Their response, in part, no, scientific inquiries continue on autism, including causation. We asked if Health and Human Services ruled out vaccinations as a cause. Part of their response, “There is no credible scientific evidence which points to vaccines, or any of their components, as causing autism.” How does the agency explain cases, we asked, where compensation was made to autistic children? “Over the past 23 years, the Vaccine Injury Compensation Program (VICP) has compensated cases where a child showed sudden serious brain illness (called acute encephalopathy) at the time of vaccination.”
Many of those who fight against granting compensation strictly for autism, begin with the argument, if vaccines were the cause, more parents would opt their children out of vaccination programs which would mean higher rates of the very diseases the vaccines are designed to prevent. There are statistics to back that up. These people say that is a more dangerous risk than the risk of autism. But that doesn’t make things any easier for the families in this battle.
Leteure: “Now I must tell you before I go any further, I am not anti-vaccine. Kimberly has had her DT, she has had her MMR, which I was horrified to even think about giving her. She has had her tetanus shots. I think vaccines are extremely important to this society and to our children. But what I think is as important, if not more important, in my own opinion, we need safer vaccines. If this were your child, if this were your grandchild, you couldn’t look at your child or grandchild and say, it’s okay, it may have happened to you, but look at the people we saved. I’m sorry, as a parent, that doesn’t get it with me. .And I am thankful everyday for my child. That little girl, well young lady, has gone through more in the last 29 years than anyone should ever in a lifetime.
Along with safer vaccines, parents also call for safer conditions for vaccinations.
Don’t do it if a child is already sick and the immune system is down.
Don’t do more than one shot at a time.
Don’t automatically get the shots if there’s any indication like from a family history, of a predisposition to adverse reaction.
And they call for more research, as they say, it was once considered safe to measure your feet in shoe stores and to prescribe thalidomide to pregnant women.
Even a member of the government’s advisory commission on childhood vaccines told us research on vaccine safety remains flawed and incomplete.
Estepp: “It makes me terribly mad. My husband is a lieutenant colonel in the Marine Corps. He’s just about to leave for another deployment. I’ve sacrificed anniversaries, birthday parties, vacations. We’ve lived our life in service for this country and our child was harmed by something that the government mandated, and I’ve been working hard to get them to notice this and to show that I’m not a crazy person. I’m not a radical. I’m just a parent of a child that was harmed.
The discovery that the government has compensated some children with autism, children like Kimberly Sue Leteure, doesn’t prove that the vaccines actually caused it. The newest scientific research about autism doesn’t either. But in the debate over what does cause the disorder, the fact that science is inconclusive and the government inconsistent, gives one side some ammunition it never had before.