Update: For those following the story of the CDC Whistleblower, the twitter hashtags trending are #CDCWhistleblower, #CDCFraud, #Vaccinegate and #HearThisWell, which carries moving video of parents sharing their stories.
CDC Whistleblower
The only thing I found more troubling than the written admission last week by a whistleblower at the CDC (Center for Disease Control) of burying significant and important data in an autism study were the apparent efforts by most media outlets to censor and downplay this story and try to discredit people reporting on it. One journal that had published a re-analysis of the original data that proved the vaccine-autism link summarily took down that study. The original CNN ireport that initially broke the story has also been censored and taken down. Epoch Times was one of the only media outlets to cover this story accurately.
No Time for Credibility Trouble
I understand during an Ebola epidemic, it is important to trust an agency like the CDC because they are on the front lines, but the truth should not be the very first casualty of the war on infectious disease. It is distrust of medical authorities that is making the fight against Ebola extremely difficult. A story about the CDC fixing autism-vaccine study data to fit a preconceived conclusion that affects so many worldwide is a bad thing to have out there right now. But the CDC could do wonders if they just come clean and follow up on the original findings.
If the CDC had handled the initial study outcome 12 years ago differently, i.e. ethically, transparently, and with a mea culpa, we would not be in this situation right now. Because the CDC scientists were so anxious to avoid admitting a result they did not anticipate, they refused to investigate further. Parents are so distrustful now that it doesn’t matter what the CDC spokespeople say, they will not be believed. Credibility is crucial at times like these and the CDC squandered any goodwill they may have had 12 years ago.
Official Censorship
What makes the finding of an MMR vaccine-autism link found in African America boys under 3 years old hard to take, is having had a decade to watch the utter contempt and vitriol directed at parents who suspect the MMR harmed their child. I have had a lot of that vile anger directed at me simply for mentioning the words vaccine and safety in the same sentence. The fact that Kathleen Sebelius, former head of HHS bragged in a Readers Digest interview that she actively encouraged media censorship on the vaccine – autism issue is what has caused parents who have vaccine questions to be shunned and officially ignored. “There are groups out there that insist that vaccines are responsible for a variety of problems despite all scientific evidence to the contrary. 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 to what science has shown and continues to show about the safety of vaccines,” Kathleen Sebelius for Readers Digest interview with Arthur Allen February 5, 2010 That statement is also no longer available online....
Name-calling Needs to Stop
The name calling really needs to end. The term “anti-vax” – which is used to quickly shut down all debate needs to be retired. It is not accurate. The parents convinced that the MMR harmed their child took their children to get vaccinated. If they were anti-vaccine, why would they do that? They want safer vaccines. They want to know ahead of time exactly which children need to avoid a particular vaccine, or exactly how many are safe to take at once, or if their child would benefit by waiting just a few more months. They want fewer additives in the vaccines. They want more answers. They are not getting any.
A Personal View
My interest in this issue is personal, because I am one of those rare folks who has a medically accepted reason for skipping shots. I am severely allergic to egg yolks and for years was not allowed to get the flu vaccine. I am one of those folks that “herd immunity” is supposed to protect. One of those folks that vaccine advocates often say they want to protect but they actually think we are Unicorns – imaginary beings - because they will shout that nobody should ever be exempt from a shot. As an allergic person, these angry vaccine advocates scare me. I have nightmares where they strap me down to a table and over my protestations, shoot me up with egg yolks, you know, for “herd immunity”. The thing is – even I am not allowed to even mention the word vaccine without freaking out my own friends – who are usually more open-minded and tolerant. The fact that I have to skip shots that might land me in the ER makes me a little more considerate when talking to a parent with an autistic child. The fact that I exist and doctors accept that an egg-containing vaccine could actually kill me, (even if my friends don’t think so), means that there is a possibility that there are other folks with peculiar susceptibilities or allergies or mutations that might make them react to vaccine ingredients too. After all, only 1 in 50 children has an egg allergy. Eggs are safe for 98% of children. The same may be true of vaccines. But that 2% needs to be protected. That is about the same proportion of children with autism right now, one in 50. If we figure out exactly which children should not have a shot, and exactly why, that will alleviate the fear of vaccination as well as injuries at the same time.
Side Effects
The CDC’s own website acknowledges that there are side effects to vaccines. One side effect of vaccines is Guillane Barre Syndrome. The fact that seizures are one acknowledged vaccine side effect and over 30% of autistic children have seizures should be at least investigated, shouldn’t it? Many parents of autistic children report seizures after the MMR.
The MMR
The truth is, the one study that would completely answer questions once and for all, is a vaccinated vs un-vaccinated child study. We should do one sooner rather than later, while there are still children who are un-vaccinated. For reasons that I cannot possibly fathom, the CDC has refused to even consider such a study. Based on what they found out twelve years ago, perhaps they were afraid what a larger study broken down by race, and age at vaccination might find. I do find it very interesting that the particular vaccine most cited by parents who watched their children regress is the MMR, the very vaccine at the center of the study Dr. Thompson expressed such regret over having participated in.
Ingredients
One of the issues that caught parents’ attention, just after autism rates abruptly rose in Scotland when new vaccines were rolled out, (ten years before Dr. Wakefield published his Lancet study) was the presence of mercury in vaccines because some autistic children test high in heavy metals. This may have to do with the fact that autistic children with a certain genetic mutation in the RNF8 gene, may be low in glutathione – which is the body’s natural chelator and removes heavy metals from any source. However, the MMR does not contain mercury-containing Thimerosal, although some versions of the flu shot – given to pregnant women still do. CDC whistleblower Dr. Thompson also offered his opinion on the flu shot that he was not happy that the flu shot still contains thimerosal because of the possibility of tics developing in the child.
The fact that thimerosal is not in the MMR, means we need to examine further what other ingredients in the MMR might cause problems. Currently, gelatin is being looked at, but there are other ingredients that have not been tested because they may have been given GRAS status, like MSG. Here is a list of the vaccine ingredients. Here is another.
Recently, a gene deletion was discovered for autism that NIMH Head Thomas Insel thought was promising. The gene deletion, which is found on the X chromosome, which would affect boys more often than girls is 20 times more prevalent than the gene for PKU and it interferes with the formation of the amino acid carnitine which allows proper fat metabolism and also keeps glutamate levels in check.
The glutamate blocker Memantine is being investigated to treat autism because glutamate is suspected of being involved in autism. Perhaps it would be a good idea to remove MSG from the MMR and other vaccines. A glutamate connection might explain a gluten-free casein free diet since both foods are naturally high in glutamate. Perhaps it would also be good not to give Tylenol with the shots either, since acetaminophen can compromise glutathione status further. But we won’t know for sure about any of this if we stop studying it.
Insult to Injury – A Conflict of Interest
What has added insult to injury is a fact that in the US, in 1986, before the vaccine manufacturers rolled out reformulated new vaccines with new ingredients – like MSG in 1988, parents were no longer allowed to sue vaccine makers in a court of law for vaccine injury. They needed to go to a special court. The problem with this approach is a basic and fundamental conflict of interest. The same US Government agency involved in administering the program - HHS and on whose behalf the Department of Federal Claims acts in making a decision - is charged with promoting vaccination and the very same one that now has to foot the bill to compensate a family. The HHS was also the agency headed by Kathleen Sebelius who bragged about stifling dissent on vaccine safety. So the incentive is to downplay or deny claims so that the government does not foot the bill for a mistake on the part of a vaccine manufacturer. The Government takes all the risk and the pharmaceutical companies make all the profit. Currently to try to deal with this problem, Congressional hearings were held to investigate. Unfortunately, folks like Beth Clay who participated in these first hearings 11 years ago were stymied and prevented from getting data from the CDC. Even Congressional investigators had trouble getting straight answers out of the CDC.
Stigma
Now many parents who do report a problem to their doctor are usually dismissed and ridiculed. The stigmatization of the “anti-vaxxers” has nearly been utter and complete. Even though there is a reporting system in place – for adverse vaccine reactions, because of the hysteria ginned up by vaccine advocates, many may go unreported.
Censorship Breeds Mistrust
The problem with the mainstream media restricting parents voices and preventing doctors asking questions in “acceptable” journals is that these parents are forced to seek outlets with less than stellar journalistic credentials. If the only places where these parents can be heard is on conspiracy websites, these parents will be further marginalized. They need real journalists that are not afraid to cover this story in real news outlets. Even Katie Couric (I know, right?) has been smeared after having the audacity to have a balanced show where she covered both sides of the debate. It is difficult when the vaccine makers, like the oil and gas industry, which has confused the climate change issue until we had to watch the glaciers melt recently, flood the media sphere with money and paid bloggers to shut down real honest debate.
The voices of the parents I have spoken to are not hysterical. They are exhausted. Having 16 year old children still in diapers and unable to speak is the daily reality of many of these parents. They just want justice for their children and a cure if there is one. They want answers. They desperately need them.
Pro-vaccine Hysteria
The hysteria and anger I have seen has mainly been by parents with small children who think that me not getting a vaccine will somehow kill their vaccinated child. Those around the age of 50, don’t understand the anger and hysteria of these young parents who are apoplectic that other parents claim vaccines harmed their children. The terrified young parents misunderstand herd immunity and somehow think unless ALL children are vaccinated NO children are safe, even their vaccinated ones. One woman on Facebook, who caught whooping cough as an adult was outraged that some parents were choosing not to vaccinate. She then became whooping cough Mary, contagious and expecting everyone else to carry herd immunity for her when she could have gotten an adult shot and prevented the problem.
“When I was your age….”
Years ago, when I was a child, if I or my sisters got chicken pox or mumps or measles, we would all have to stay home together so we all got it at the same time and got it over with. They didn’t quarantine us from our siblings, they intentionally made us infect each other. It was better to get mumps as a kid than as an adult. And our parents were not terrified we would die from it. They just kept us home from school till we stopped itching. To those of us who had these diseases, the terror ginned up over measles, mumps, and chicken pox seems out of proportion to the reality of actually experiencing it. I’ve caught all three and so have most folks my age. We look at vaccines for these as more of a convenience of not having to stay home for a week to get eventual immunity. The flu shot is considered more important, because the flu has historically been deadly and most adults my age get that one but prefer the doses that do not have mercury in them.
Hannah Poling’s Aunt
In May of 2008, when I attended the IACC Interagency Coordinating Committee meetings on autism, I met the aunt of a young girl who was one of the very few to get compensation for autism based on her receiving 9 vaccines in one day. Hannah Poling was lucky, her parents were scientists who could speak with authority on her behalf. Her parents appeared on Nightline in 2008 with Hannah, but that video is difficult to get. And, there is a gag order on most parents who win in vaccine court. Hannah Poling’s aunt was not allowed to speak at the IACC meeting that day, but she did give me her written statement. It is what I will leave you with. It is right in line with the many thoughtful (non-hysterical) responses I have encountered among family members with a vaccine injured child. This was written years after the study where the CDC did discover a link but chose to bury the finding by manipulating the data to remove the effect.
“Statement of Margaret Dunkle
Senior Fellow, Center for Health Services Research and Policy, George Washington University Director, Early Identification and Intervention Collaborative for Los Angeles County
Recipient, American Academy of Pediatrics’ Dale Richmond Award for Outstanding Achievement in the field of Child Development
May 12, 2008
Federal Interagency Autism Coordinating Committee
My name is Margaret Dunkle. Some of you know me through my current position as Senior Fellow with the Center for Health Services Research and Policy at George Washington University, and some from my prior work running policy seminars on Capitol Hill.
Some of you know me as recipient of the American Academy of Pediatrics’ Dale Richmond Award for outstanding achievement in the field of child development, or for the collaborative efforts I direct in Los Angeles County to ensure all children receive good developmental screenings and effective follow-up.
More recently, some of you have come to know me because my nephew’s daughter, Hannah Poling, is the little 9 -year-old girl from Athens, Georgia who was the subject of a case the government conceded in vaccine court. The nine vaccines Hannah received on one day in July of 2000 significantly aggravated an underlying mitochondrial disorder, which predisposed her to deficits in cellular energy metabolism and manifested as a regressive encephalopathy with features of autism spectrum disorder. Indeed, Hannah has autism, with a clear DSM-IV diagnosis based on the Diagnostic and Statistical Manual of Mental Disorders.
I believe in a strong and safe immunization program. Yet, every day more parents and some pediatricians reject the current vaccine schedule. I am concerned that many people are missing Hannah’s clearly scribbled handwriting on the wall. She has provided a critical clue (mitochondrial dysfunction) and a historic opportunity for our public health leaders and policymakers to act responsibly and decisively - undertaking serious science to address the very real concerns so many parents and families are raising.
Hannah’s condition is not rare. The best evidence available strongly suggests that at least 7%, and perhaps as many as 20% or 30%, of children with autism have mitochondrial dysfunction similar to Hannah’s. With one in every 150 children on the autism spectrum, these issues are both urgent and important.
Now that we know this, it is time to follow the prestigious Institute of Medicine’s 2004 report that said:
“Determining a specific cause [for autism] in the individual is impossible unless the etiology is known and there is a biological marker. Determining causality with population-based methods requires either a well-defined at-risk population or a large effect in the general population.”
Mitochondrial dysfunction defining an autistic subpopulation and the role of neuro-inflammation in autism are not esoteric theories. They are real leads that need to be quickly followed.
I urge you to support the following recommendations that reflect your Committee’s mission to coordinate, monitor, and recommend changes concerning federal autism efforts.
#1 First and most importantly... With Marshall Plan speed and focus, I recommend a new, intense basic science research program to get to the bottom of what is going on with the many Hannahs out there - specifically focusing on the role of mitochondrial dysfunction and neuro-inflammation in autism.
How many Hannahs with mitochondrial dysfunction are there? 4%?, 7%?, 10%?, 20%? Where do these dysfunctions come from? How do they work? Can the negative effects be undone or limited?
This research must be bold, going wherever the science takes it, with nothing off the table.
I estimate $200 million will be needed to jump-start this research. This money must be a new or redirected appropriation, not borrowed or taken from the Vaccine Injury Compensation Program (VICP).
#2 Quickly find ways to screen for and identify the subset of children like Hannah for whom vaccines can cause or exacerbate mitochondrial damage and lead to symptoms of autism.
For example, start screening the siblings of children with autism to identify biomedical markers that could lead to screening tests and treatment.
#3 Piggyback new research onto existing studies to answer important questions about autism, vaccines, mitochondrial dysfunction and neuro-inflammation. For example:
Test alternative vaccine schedules and frequencies through the National Children’s Study and use this data set of 100,000 children to get longitudinal data on these issues; and
Build new analyses into existing studies and cohorts of patients with known mitochondrial dysfunction - such as research already underway at Hopkins, the Cleveland Clinic Foundation and Columbia.
#4 Institute an immediate nationwide initiative to spot children, like Hannah, who have adverse vaccine reactions and speed them into intense early intervention (specifically, the federal IDEA Early Intervention program for children ages 0-36 months and the Preschool Education program for children ages 3-5).
An important corollary is to strengthen the Vaccine Adverse Event Reporting System (VAERS) so that it actually does the job it was set up to do - collecting information about adverse events, including “side effects,” that occur after the administration of vaccines.”
#5 Reform and improve the current vaccine schedule and practices to ensure they are as safe as they possibly can be. For example, examine the number and frequency of vaccines, use of combo vaccines, preservatives used, and ages administered to identify changes that would minimize damage to children, especially susceptible children such as Hannah Poling.
It is significant that the federal Advisory Committee on Immunization Practices’ recently downgraded its preference for a MMRV vaccine (four-vaccines in one shot: measles, mumps, rubella and varicella) to “no preference” because of increased seizures among children receiving the MMRV.
#6 Update the Vaccine Injury Compensation Program. For example:
Allow parents longer than three years to file, especially given the newly identified “mitochondrial dysfunction” implications of the Hannah Poling decision and because we want parents and families to devote 100% of their energy to early intervention as soon as they learn their child has a problem; and
Update the list of “table injuries” to reflect the emerging discoveries about autism, mitochondrial dysfunction and immunological disorders.
#7 Improve the way the federal government approves and monitors vaccines and vaccine safety - perhaps establishing an independent agency (separate from the Centers for Disease Control, which also runs the National Immunization Program) to research, approve, and monitor vaccine safety and effectiveness.
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I am proud that my family is providing hope and voice to many families across our country who have their own Hannahs. I am also proud of their leadership to nudge those of us who care about good public health and good public policy to do the right thing and to do it right.
A little 9-year-old girl has raised incredibly tough and important questions. Your challenge, as leaders concerned about autism, is to tackle these issues in a way that is effective and unflinching - and that responds to her clear scribbling on the wall with equally clear advances in science and improvements in immunization practices.
