The Vaccine Theory Goes to Court

June 11th is the date that hearings in start for 4,800 claims filed by parents of autistic children who believe that their child’s autism was caused by the U.S. government’s vaccine program. The hearings will be held in U.S. Federal Claims Court in Washington, D.C.. As journalist Arthur Allen, author of Vaccine: The Controversial Story of Medicine’s Greatest Lifesaver, writes in today’s Slate, it is the theory—the hypothesis—that “vaccines cause autism” that is going to court. He writes:

The scientific consensus rejects the idea that thimerosal, a mercury-containing preservative used in vaccines, causes autism. Still, it’s conceivable that some of the claimants could win, because the vaccine court requires a lower standard of scientific evidence than regular courts. And so the parents are trying to enhance the legitimacy of their arguments.

The means for this “enhancement” of the “legitimacy of their arguments” is not via appeals to science but, as Allen relates, by some parent advocacy groups’ re-presenting the “remarks of a CDC scientist to make it appear that he shared their views” and also by harassing scientists whose research they disagree with by using tactics that recalls those of “certain animal rights groups” (see Nature Neuroscience editorial). Allen also details the reliance of anti-vaccine activists on the work and testimony of Dr. Mark Geier, “a fixture as an expert witness in vaccine court, where he has testified about 100 times” and his son, David Geier: “The special masters who run the vaccine court have tossed out their testimony on 10 occasions, and federal district courts have been similarly skeptical.” Dr. Geier has also “moved into a new arena—by becoming a doctor for autistic children” and claims that he has treated 120 children with his “Lupron protocol”:

The theory that thimerosal—which was largely removed from vaccines by 2002—is the cause of rising rates of autism has spurred scores of alternative practitioners in recent years to “detoxify” kids with sulfur-containing compounds (called chelation agents) that bind to heavy metals. Although various advocacy groups swear by this treatment, it does not seem to have cured autism in most, if any, kids who’ve tried it. This is where Geier’s Lupron protocol comes in. His theory, stated in patent applications and a 2005 issue of the journal Medical Hypotheses, is that chelation fails to remove mercury from some children’s brains because the mercury binds to testosterone. Get rid of the testosterone with Lupron, the Geiers argue, and the mercury will come out with chelation.

Allen cites the investigative reporting of Kathleen Seidel, who oversees the Neurodiversity website, on the “significant misrepresentations” of the Geiers’ Lupron protocol.

“The link between MMR vaccination and autism seems to be a meme that just won’t die,” as Johnathan M. Gitlin recently wrote in Nobel Intent. As Allen notes at the end of his Slate article,

The potential impact of the vaccine case Geier will testify in is huge. If the court finds that vaccines are guilty of triggering autism, it could order lifelong payments for the care of thousands of autistic children. This would bankrupt the vaccine-compensation program, created two decades ago to shield the drug industry from lawsuits while providing the parents of vaccine-damaged children with a no-fault means of payment. The compensation fund, which currently contains about $2.5 billion, is financed by a tax on pediatric vaccines. But concerns about potential liability already have helped drive the price of vaccines to levels that are making it hard for pediatricians to continue administering them.

The Geiers’ “Lupron protocol” involves familiar procedures if you been following developments in biomedical treatments for the past decade (as we have been; we learned about the DAN! protocol from Bernard Rimland’s Autism Research Institute just as Charlie was being diagnosed with autism). Children have to have elaborate testing done for various biomedical “abnormalities”; this usually requires the drawing of a great deal of blood. Allen notes that this can be “especially traumatic for autistic kids” and I can attest to this: The sweaty memory of two nurses attempting to draw blood from my then-five-year-old son who I tried (tried) to “hold down” in my lap lingers. After the testing, children receive “multiple injections” of (in the case of the Lupron protocol) Lupron and also oral doses of (for instance) a chelation medication.
Vaccine: The Controversial Story of Medicine's Greatest Lifesaver
I suppose more than a few of Slate‘s readers may be somewhat alarmed or even shocked to hear about the testing, injections, and administration of medications and/or supplements that are part of the Lupron protocol. I have to say, I was not: More and more, these are referred to as standard procedures for biomedical treatments for autistic children, treatments based on theories themselves—-but how would they stand up in court, or under scientific scrutiny?

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    • http://www.blackmarketbeauty.com SageRave

      It is frightening that people will cling to ANYTHING to affix blame for the tragedy of Autism. This modern day witch hunt endangers us all, but more so those children who may face the return of many childhood diseases that maim and kill thousands more than the number of projected new cases of Autism.

      People who pursue these lawsuits also endager our freedoms to choose alternative methods for treating ourselves with herbs and vitamin preparations. Their hysterical state of mind along with their propensity for scapegoating will lead governmental agencies to pass laws to “protect” the citizenry from itself, thus eliminating the choices of level headed, intelligent people through bans on substances that have been used for centuries with no harm to the majority of those who have used them successfully.

    • Richard

      I do not know the laws around IRBs. But with the Geier’s IRB egregious violations, aren’t there clear penalties? Can’t government authorities stop their study?

    • http://www.autismvox.com Kristina Chew, PhD

      Seeing as how “the Geiers’ homemade IRB included the Geiers themselves, Mark Geier’s wife, a vaccine litigator, and the parent of a child on the protocol, who is also a vaccine litigant” (as Allan notes), their “IRB” seems mostly a family matter.

    • Richard

      But IRBs are governed by federal laws to protect human subjects. Surely there must be ways the government can shut them down.

    • http://www.autismvox.com Kristina Chew, PhD

      This is a link to Bioethics Resources on the Web via the NIH. Under Human Subjects Research and IRBs there are “Regulations, Policies and Guidance” and then a link to Inclusion of Children Policy Implementation—–and then NIH POLICY AND GUIDELINES ON THE INCLUSION OF CHILDREN AS PARTICIPANTS IN
      RESEARCH INVOLVING HUMAN SUBJECTS
      , from which, under “Justifications for Exclusions” is:

      It is expected that children will be included in all research involving human subjects unless one or more of the following exclusionary circumstances can be fully justified:

      [this is #2]

      There are laws or regulations barring the inclusion of children in the research. For example, the regulations for protection of human subjects allow consenting adults to accept a higher level of risk than are permitted for children.

      [perhaps #5 is of some relevance?]

      Insufficient data are available in adults to judge potential risk in children (in which case one of the research objectives could be to obtain sufficient adult data to make this judgment). While children usually should not be the initial group to be involved in research studies, in some instances, the nature and seriousness of the illness may warrant their participation earlier based on careful risk and benefit analysis.

    • http://www.autismvox.com Kristina Chew, PhD

      The IRB Forum is based at the Center for Bioethics and Department of Medical Ethics at the University of Pennsylvania School of Medicine—several IRB home pages are listed.

    • E. Nicol

      Let me preface this by saying that I am not stating that people should not immunize their children. I am also not stating that I feel everyone should sue either. I am only stating that people should have the informed choice. Some children are born Autistic and clearly some children become so. It is apparent that the person who indicated that this is a modern day witchhunt obviously does not have an effected child. If you saw your thriving, speaking, walking child wake up the day after shots and be able to do none of the above, you might reconsider your witch hunt opinion. As far as the return of deadly diesease, I completely understand the fear. But, that is a risk those who choose to not immunize take. It will not effect the children of those who feel strongly that their children be immunized. Aside from seeing firsthand a functioning child drastically decline and later be diagnosed with Autism, I have two friends whose children had uncontrolled seizures immediately following their shots. One is now dead and the other required brain surgury and lifelong medication. They have chosen not to immunize their other children. They deserve that choice.

    • Jacey Capurso

      I am still amazed that people still do not research their own children and still take the word of many government agencies instead. As a firm biomedical follower for my child, I would like to make clear a couple issues that was previously bought up.
      1) The biomedical autism community does NOT suggest NOT immunizing children. They DO suggest immunizing their children without mercury or aluminum (the “new” preservative in the shots.) in the shots. DAN! doctors DO also suggest spreading the shots out a bit, rather than giving 4 shots in one visit to your pediatrician, to spread each one or two out every month or two. Their vaccine schedule does not vary too much than the CDCs. It amazes me that most people take huge precautions to not get babies sick….(ie: washing hands near newborns; not being around newborns if you have a cold) because the infant’s immune systems are not yet developed. Then parents walk into a pediatricians office and subject their kids to – at times – 8 different viruses. Seems rather contradictory. So, SageRave, your point is completely mute.

      2) Richard, why do you care what other people are studying? Why is it hurting you? Maybe parents like myself research all biomedical interventions prior to actually giving them. The Grier’s are not FORCING the parents to give their kids their protocol. Parents make the decision. And YES – there is a grave need for some kids to follow a protocol.
      As quoted “While children usually should not be the initial group to be involved in research studies, in some instances, the nature and seriousness of the illness may warrant their participation earlier based on careful risk and benefit analysis.” I believe my son’s metal issue was ONE factor in his RECOVERY….and we followed a doctor’s protocol after months and months of studying which would be the best. There are other’s besides the Greir’s protocol. At age 5 – he is going into a main stream setting. Metal is not the ONLY issue and is sometimes not an issue but it must be tested for and determined by the parent if to do something about it. It is a CHOICE.

      3) E. Nicol – thank you for letting each parent find their own way in this madness they call autism. I don’t bash any other parent for what they do with their autistic child. We all know our kids the best and no one can tell me or them what is the best approach. We all have to live with ourselves and our children day in and day out. We each have to find our own way.

      4) Kristina – I am sorry you had a horrific experience with Charlie’s blood draw – but you have not – obviously – been reading the more recent methods of testing. A majority of the testing can be done with a urine test. Not just metals but a whole long list of other tests. At the last DAN conference in April in VA, a new French company has designed a very sensitive test for metals that is done with the child’s urine. Yes, we also do blood test but only when Alec is due for a blood test to test his liver since he is on seizure medication. Since that is an obviously very important test to take, I just have them draw additional vials for other tests. No additional needle pricks. Bet you don’t condem me for testing his seizure meds. Don’t condem me for doing additional tests too. Maybe a parent should write a book on what the DAN protocol does .. and how it can be used in many fashions …. to fit each child and parent. Your author’s story does not hold water since this person obviously does not have a child with autism and has not spent the countless hours with my son and the endless hours of research that helps me determine his medical care. I cannot “cure” anyone else, but I can “recover” my son. Don’t get in my way with your pathetic books and stories. Trust me – I will not get in YOUR way. I don’t have the time. You obviously have too much of it.

    • http://www.autismvox.com Kristina Chew, PhD

      Thanks for commenting here; I am writing about our experience with the DAN protocol as part of my book. I have indeed heard of the French lab test and, while we are no longer using biomedical treatments, try to stay informed. If I may ask, how old is your son?

    • Jacey Capurso

      Kristina, You can ask me anything. I am obviously not shy. And given an open forum…I try to contain myself but some things set me off. I allow everyone a voice (as you remember I put you on the cover of [the newsletter; location removed by the blogger].) but I will also have a voice when I feel it is necessary.

      Alec is five years old. We started the GFCFSF diet at age 3 and we have not stopped trying the many different methods of “curing” autism. All of us parents have tried “everything” – and I am the first to stand up and say we did some non-biomedical interventions and wasted a lot of time and money on them. But the biomedical approach has helped him tremendously. It is NOT the sole reason for his “recovery” (I do say that with quotes as we are not completely there yet.) but was part of MY protocol for Alec…and only Alec. I don’t believe EVERYONE should do DAN but it works for him and me. Others should try it, though don’t have to stick with it if it does not make a difference. Not all kids need DAN and there is no reason to bash us who do. Maybe we all need to keep our minds open until they know what is causing autism. We need to turn over every single stone until we find the answer. I don’t think Alec was affected by the vaccines but I do KNOW he has a ton of lead and mercury in him. How did it get there? Maybe others got the metals from the shots…others get if from the environment. I believe the parents whose kids got the shots with the mercury. I have no reason not to believe them. You should not either. How would you know either way? Who are you to judge? If those parents wish to sue, then let them. Being a New Jersey resident and living within 10 miles from every major big pharma – they are NOT hurting from this legal battle. They have plenty of money. The question should not be “why are the parents hurting the big pharma?” but rather, “why is big pharma hurting us?” Are the pharmaceutical companies ALWAYS right? Was Vioxx a little boo-boo? Do the families of those who died on that drug have the right to sue? I think they do. Why is it the “little guys” fault?

      “Dare to examine your own heart before casting the first stone!”

      Please watch what you say about your experiences with DAN as you may be putting ideas into “newly diagnosed” parents minds that it is not worth a try. You may be – in the long run – be hurting a child. I read a NIH brochure on autism and the writer mentioned the GFCF diet as being an intervention but immediately stated how difficult it was. I found that writer at the NIH and said that once you are on it – it is not that hard. The wording was not appropriate as it may sound like this impossible diet and may actually persuade parents to not even TRY. She said that at the next printing of the brochure she would change the wording to encourage parents to attempt the diet.

      My autistic son and neurotypical 4 year old daughter were always covered from head to toe with eczema until we put them on that diet. No joke. Now BOTH are on it and have been for 2 years. Last year we had them both scoped and their intestines were perfect. It was not until the biopsies came back that there was evidence of colitis. Yes – a 2 and a 3 year old had had colitis. And I cured it with diet alone. The doctor who scoped them (a Harvard doctor and professor) said that he was amazed … !! Funny thing is – my son never had the autistic gut issues. It was my typical daughter who had all the gut issues they talk about in the biomedical treatments. Never persuade someone not to try…..

    • http://www.autismvox.com Kristina Chew, PhD

      Thanks, Jacey. I have written a lot about the gfcf diet (which we are fading out with Charlie) and noted that it is not difficult (not for us, at least, as my cooking is “vaguely Asian” and does not use a lot of wheat or dairy products).

      It’s been interesting to follow the vaccine-autism debates. Patterns emerge in the way people describe how a child “suddenly” and “overnight” changes from being “normal.” There are also patterns to how the experience of using the DAN protocol is described; I’ve found it of interest that some treatments, such as chelation, are used to treat other illnesses, such as Lou Gehrig’s disease, and do not seem to be particular to autism.

    • derrick ray

      its funny how some people have the nerve to address there opinions when they have no link with actually dealing with the situation first hand.my son jr has been diagnosed with autism and ive have been told by numerous doctors that he will always be this way. should i just accept that there is no reason for him being this way when i nor my wife have no history of autism in our intire generation!
      hell no ther is a reason for his unfortunate affect and my or my wifes petty jobs can’t afford the countless research needed to take care of him so who are what is the blame?would you not want to know if a vaccine can harm your child?me and thousands of others that are in our shoes know what it is like to live in the life a child in a world of his own that you feel powerless to help.i don’t know what to real truth is i just want a solution ,some help and availability of it is limited to the east and westcoast while i live in the midwest? if i could afford to move i would but not everybody can do that to cater to their problems. so what do i do?my son was born during the time of themerisol and medically there has been no other reason or solution for his having it so what is the truth?i have tried DAN doctors chelation meds,detox and i still haven’t seen a change.guess im just one of the unfortunate silent majority that has to deal with this huh?if its not themerisol,genetics,or what ever then what is it?and why aren’t we focusing on more treatment and parental assistance instead of just pointing fingers?

    • http://www.autismvox.com Kristina Chew, PhD

      Hi Derrick, I know my son was born the way he is. We’ve tried some of the DAN methods; my son began his life and education in the Midwest and we have continued to try to teach him. My own main focus here is to advocate for, indeed, education and more resources for families and for autistic persons—-childcare and after school programs and really good school programs. It does seem like those who believe in an autism-vaccine link are pointing fingers at one clear culprit, in their view.

    • Jacey Capurso

      Derrick
      I believe you are right. There needs to be more help from the government and schools. I think some kids were born that way, kristina, and others were not and were affected. Again, it does not seem fair you are angry at these parents who do believe their kids were affected. They do have a right to sue, don’t they?
      I do not think that alec was affected by vaccines, but i do believe that he was affected by all the other environmental crap in our society. There is no way in hell we all can fight that!!
      I need the help too as we used to have a savings – now it is gone. Blew it all in alec’s first 18 months of treatment. So we are looking for help too.
      I think there are many organizations out there (like OAR) trying to find the help….but it will be slow. I do hear you loud and clear but what I am trying to say is that don’t condmen people for what they believe is the truth. Maybe it is. Aren’t we all in this together….forever?
      Jacey

    • http://www.autismvox.com Kristina Chew, PhD

      And very gladly so! It’s a good life with our great kids.

    • Jacey Capurso

      A life I never anticipated…yet so greatly appreciate.

    • http://www.autismvox.com Kristina Chew, PhD

      It’s been very unexpected for us, that’s for sure. I just try to keep learning.

    • derrick ray

      I agree kristina, i just get so frustrated sometimes and for years i thought that i wasn’t allowed to feel this way because of my son.my comments were not to accuse but to try to focus on a solution.something that can ease the hardships that struggling parents like me face because you love your child so much that you would do anything in this world for them.spend every last dime,see any doctor even if you can’t afford it .listen i love my son and i will never give up on him never!but i have to admit that i do need some help.im becoming financially strapped and it makes me feel bad when i don’t have the means to offer my little heartbeat the help that he needs.i know that they are trying to do something about it and i know that new programs are opening up every year.but i have been dealing with this since my son was 2 and in september he will be 7 and the school district that he attends ,matter of fact the school districts within the entire state and bordering states do not have programs worked into ther curriculums,educated teachers etc.and how long will i have to wait for them to catch up a year?,five, ten?meanwhile my son gets denied the help he truly needs because they stick him in the disabled classes and just let him roam(ive watched his class and teachers,talked to the principle)by the time they have a requirement for autistic curriculums in the school my son will be high school age and where will he be? as a working dad who has to pay the bills (my wife also)we have no down time and family and relatives don’t understand and don’t want to so there is no support.they act like its a disease that they don’t want to catch.i would say thats pitiful but people around us when we go out react the same way even when we tell them what his ailment is?society as a whole is just now trying to catch up and i feel that by the time they are fully aware it will be too late for my only son.kristina,i learn somthing new everyday from my son and so does my wife and my only daughter.and even though its the best i can do and the only thing i can do im smart enough to know that its still not enough.

    • http://www.autismvox.com Kristina Chew, PhD

      Derrick, This is going to sound lugubrious—-”more die of heartbreak” is how it feels like sometimes (too many times)? We’ve been fortunate to find a good school district for my son by moving in with my in-laws. Memories of him sitting blankly and bored at a desk remind me of all that has to be done to keep that not happening to him again. Does your school district have any plans of making changes (maybe I’m being too positive here…)?

    • Jacey Capurso

      derrick, where do you live, do you mind asking…you can just give me the state.

    • derrick ray

      missouri, and yes ive asked about there plans for changes an adaptation in the school districts we just recently came from an IEP meeting about my son not only are the teachers not educated in dealing with autistic kids but funding to do so is limited.this was out of the mouth of several different schools within the immediate area where i live and they all looked perplexed at the idea of me even asking them for accomedation.im stuck! our family doesn’t want anything to do with it the refer to my son as rainman(dustin hoffman,tom cruz) ive tried to move but the cost of living elswhere would kill me before i got on my feet and neither of our jobs have companies outside of the state.ive heard of maybe one or two programs that may be starting within the next couple of years but time is still against us.its ok to be positive i still try to be sometimes. do you know this is the first time ive ever talked to anyone about our situation other than my family , i feel trapped.

    • http://www.autismvox.com Kristina Chew, PhD

      Derrick,

      My son was born in St. Louis. We moved back to New Jersey in 2001 for the schools—my husband is from here. I was not very happy with the services we were receiving. I know a few parents in Missouri with autistic kids who have also had interesting times with the school districts—if you’d like, I can point them to you or vice versa.

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    • http://www.readwhitelies.com Sarah Collins Honenberger

      Choice is a parental right. Informed choice is the standard in present day America. If the government, the drug companies, and the doctors are insisting on complete loyalty from parents without meeting their responsibility to give out accurate information, then the parents can’t make an informed choice. The resurgence of whooping cough scares everyone, but when doctors proclaim it’s the anti-vaccine parents who caused it, they’re failing to report that more than half of the new cases are children who were vaccinated and contracted the disease in spite of the vaccine. Why don’t the doctors recite the whole truth?

      Each child reacts differently to each vaccine. The drug companies know that. The doctors know that. The goverment knows that. It set up the compensation fund to help the expected injuries. SO why have they changed the law repeatedly since 1988 to make it harder to get that help?? Why have they made the parents fund the recovery dollars with surcharges on each vaccine and then suggested the surplus be given to drug companies for supervaccine research?? Why do doctors not report the adverse reactions? 4 out of 5 are not being reported.

      The truth, that’s all parents want. Who doesn’t remember thirty years of denial about Agent Orange by the government before a single instant turn around when they started paying the claims, without any apology for all those years of doubt and shame of veteran dads for something they didn’t do and couldn’t help. The truth, hard as it is.

    • http://www.autismvox.com Kristina Chew, PhD

      That’s what you’ll find here, intermixed with true accounts of life with my autistic so, Charlie.

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    • http://www.blisstree.com a.w.green

      i think it’s unbeleivable how many people will comment on a issue they have not educated themselves about based on one extremely bias writers opinion. please for the sake of all children especially those here in the u.s. educate yourselves with the facts about vaccinations.the issue is the poisons in the vaccinations and the over use of them,not to vaccinate or not to vaccinate.