Tuesday, January 22, 2013

Vaccines and Autism Spectrum Disorders

This controversy isn't a new one.  This debate hasn't just begun.  For many years, there have been people who alleged that vaccines cause autism, and for as many years there have been detractors.  Study after study have shown that there is no link, and yet this question keeps surfacing.  If there is no link, then why does it seem so often like there is one? 

Why are there parents out there, struggling with this issue every day, wondering if there really is a connection?  Why are there parents, myself included, who are spacing and delaying immunizations when a child starts reacting to them?  If these things are so harmless, why do we still doubt?

I'll tell you why.

It's because something is causing it.  Something is taking the brains of these children and changing them.  Something that wasn't happening very often thirty years ago is happening with increasing and increasing frequency today, and parents are rightfully suspicious.

If we are to believe, as we are told repeatedly, that all vaccines are safe, then why did the Vaccine Injury Compensation Program recently award two families of children with autism monetary damages?

 
In this post, I will describe the government's handling of the vaccine injury claims, I will address the specifics of each case, I will talk about the implications of these decisions, I will tell you my personal views, and finally discuss why this is important for us all. 

How the Government Handles Vaccine Injuries in General
The Vaccine Injury Compensation Program (VICP) was established in 1986 to compensate families for injuries resulting from vaccines, to shield the manufacturers from liability for defects, and to keep these cases out of the traditional court system.  It is a no-fault system, meaning that the parents who assert these cases on behalf of their children must show that specifically recognized injuries occurred within the time frames acknowledges by their guidelines.   Those injuries, if sufficiently demonstrated, are assumed to be caused by the vaccine. The injuries recognized are referred to as table injuries.  Claimants are eligible for medical and legal expenses, loss of future earning potential, pain and suffering up to $250,000 and a death benefit of up to $250,000.  The program is funded by an excise tax on all vaccines administered.

It is administered through the Office of Special Masters through the United States Court of Federal Claims. By and large, vaccine injury cases are not permitted in the ordinary court system without special circumstances.

The VICP was created in direct response to safety concerns over the DTP.  Manufacturers were being sued and juries were awarding large amounts of money to plaintiffs.  Many manufacturers ceased production of the vaccines because of the threat of litigation, and the government stepped in for a few reasons.  One, they did not want the manufacturers to stop making the vaccines.  Two, the findings of fault were tenuous in many of the cases.  Three, parents were afraid to immunize their children, and the government was afraid that the effect of herd immunity would cease to occur.  Essentially, this means that in order for most people in the population to be protected, enough people within it have to be immunized, and the government was afraid we would fall below that threshold.

Ryan Mojabi
In this case, the parents of Ryan Mojabi alleged that his Autism Spectrum Diagnosis (ASD) was a result of injury from his immunizations, primarily the MMR (measles, mumps, rubella) vaccine.  Specifically, they claimed that he suffered encephalopathy which consequently resulted in his ASD diagnosis.

Notably, encephalopathy is a compensable table injury in the VICP.

Mojabi was immunized with the MMR and a few other shots just before his second birthday.  He was diagnosed with encephalitis within 15 days of the vaccination.  His symptoms also included difficulty breathing, a high fever, febrile seizures, lethargy and rash.  After he recovered from the persistent high fever, his parents noticed changes to his behavior, and a backslide in his development.  He stopped using words that he had been using before. 

His parents alleged that the cumulative effect of the vaccines, and that MMR shot in particular, led to brain injury resulting in his ASD diagnosis.  The Department of Health and Human Services finally conceded and his family was awarded almost $1,000,000 in damages for lost wages and pain and suffering, with potentially millions more in annuities to cover the cost of his care for the rest of his life. 

The specific exhibits that led to the concession are under seal, and the government made no admission of a connection between the vaccine and his ASD diagnosis.  The full text of the decision is available through the link here.

Emily Lowrie
Emily's struggles began shortly after she received several vaccinations at her 15 month appointment.  She spiked a very high fever, developed a rash, started having seizures and began engaging in repetitive actions such as arm flapping.  Over the following years, she was found to have encephalopathy, speech delays, developmental delays.  Her mother filed in 2003 for an encephalopathy injury under the VICP for those injuries, prior to her daughter being diagnosed with ASD. 

The case dragged on for years.  After Emily was formally diagnosed with ASD, the government agreed to settle.  She received over $1,000,000 in damages, plus annuities to cover the cost of her care for the rest of her life.  The HHS refused to admit a link between the vaccines and her injuries, instead claiming they were tired of dedicating resources to the fight.  The text of this decision is also available as a pdf through this link. 

The Implications of These Decisions
Obviously, these cases say that, at least in the eyes of the court, injuries to children who develop ASD are compensable under the VICP.  Though there was no connection admitted, no formal acknowledgement of a link, the government is paying these families millions of dollars because of the damage the vaccines did to these children.

In Lowrie's case, her mother fought for almost a decade.  She was badgered on the stand, accused of being a bad mother and more.

What do these cases mean for the approximately 1 in 110 kids who are diagnosed with ASD?  Does this mean that those children, if their symptoms began shortly after they received their vaccines, are then also eligible to receive compensation under the VICP?  Does it mean that their injuries were possibly preventable?  Does it mean that vaccines are not safe?  Does it mean that parents are rolling the dice every time their kids receive shots, hoping they are the 109, not the 1?

If this means that ASD is now a compensable injury, the VICP will rapidly go broke.  The VICP is designed to compensate the very rare side effects, the episodic side effects, not the life long damages that were awarded in these cases. 

My Personal Theory on the Connection
This is my personal opinion, based on years of medical research.  I am not a scientist.  I did, however, learn a long time ago to question the results of any study that comes out.  I have studied in public health and law, worked in risk management in hospitals.  The vast majority of medical research in this country is funded by factions with a vested interest in the outcome.  It's my belief that we need to strongly fund objective, unaffiliated research into this area, for the sake of the children and families dealing with these diagnoses. 

I believe that the connection is more complicated that most assume.  I believe that ASD is essentially an autoimmune condition brought on by a perfect storm in the children it affects.  I believe that these kids have some underlying, undiscovered issues that somehow make them vulnerable, and that triggered at the right time, their nervous systems overreact. 

When we are immunizing children these days, they are getting several vaccines at once.  The way vaccines work is essentially to challenge their immune system to build up a response to that disease.  We are injecting them with several at a time, and I think that what happens is that the immune systems of some children get overloaded, then overreact, triggering changes in their neurological systems.

It's not the vaccines themselves, per se, but how they trigger reactions in the bodies of these kids.  The trouble is, as parents, we don't know if our children are vulnerable until it's too late and the changes have occurred.  It's entirely possible that the toxins in our environment (and in the vaccines themselves) are contributors.  Without adequate research, there is no way to know for sure.

My youngest has had trouble with vaccines.  He also seems to be on the path towards Type 1 diabetes, which is an autoimmune disease.  We have elected to space and delay his vaccines, skip some entirely.  I know that his immune system can't handle too much.

Again, this is my personal theory, and I would love nothing more than to see research into this specific area...but I'm not independently wealthy and can't fund it.

Why This is Important
This is important because of conversations like the one I had with a dear friend a few days ago.  Often at a loss of how to help her children, she finds herself frustrated with a medical system that doesn't understand her kids.  They treat symptoms the best they can, but that's all they can do.  Therapy and IEPs and all the worry in the world haven't changed the fact that sometimes her boys don't know how to cope with the world they live in.  As a parent, she is tired.  She is overwhelmed.  She is worried.  For their present and their future.  For herself.

And she isn't alone.  There are thousands, maybe millions of families figuring out how to navigate the world when a child (or children) is diagnosed with ASD.  These children are smart, they are kind, they are our babies, and they need us. 

I hope that these cases will prompt our medical society, and our society in general to dig deeper.  To find out how we can help these children.  How we can help these families.  If this is something that can be prevented, we need to know that, and we need to accept that seeking prevention doesn't detract in any way from the reality of those who are already there. 

It kills me to see the debates on this issue turn nasty and mean.  I hate hearing my friend tell me that she has blamed herself, questioned what she could have done differently.  I cringe at the irresponsibility of the media when they report on any story that carries a connection with ASD, too often laying blame at the feet of mothers who have only ever done the best they can to care for their children.  What we need is a discussion about this, not an argument.  We need compassion and new ideas.  We need to stop pointing fingers and start finding answers. 

Maybe, just maybe, these cases will be the urging force behind that. 

The unyielding optimist in me hopes so.

30 comments:

  1. As always, so beautifully written. I agree, there needs to be more funding to find out why and to help those who are already suffering.

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  2. well-written, insightful and knowledgeable post. i do not have a child on the spectrum, but i fully remember reading an article questioning the link just before i was to take my now 19-year old daughter for her 1-year check up where she would receive the vaccinations which were being hotly debated. i agonized over the decision to vaccinate her.

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    1. Too many of us have, myself included.

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  3. These cases are very interesting and also a little curious. Sometimes it seems that the government speaks out of both sides of its mouth.

    I think all possibilities should be explored and nobody should be condemned for having a theory. Theories are meant to be tested and without them we will never find a cure or a prevention. I think all of us can appreciate that.

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    1. It does, though if anyone knew the danger of precedent, it's the government. There is more to these stories.

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  4. Well done my friend. I know you were worried about feedback on a hot button topic, but as always you delivered your post with a well thought out dialogue, links on articles and studies to support your opinions and the facts you were stating. Above all, you delivered this with passion and love for the affected children, as only a wonderful Mom and a loving person could do.

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    1. Thank you. So far, so good. Crossing fingers.

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  5. this was flawlessly executed. cogent, balanced and fair. who could ask for anything more? oh yeah, the parents whose fears teeter on this delicate matter. i wish there were answers.

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  6. Thank you for writing this, Kelly, and thank you for being informed. Being the parent of a child on the spectrum I believe there is some kind of connection. However, it's not just children who are suffering. I know a lady who acquired an autoimmune disorder after having Norplant inserted into her body. Another lady I've spoken with had a severe reaction to a flu shot in her 40s. She was partially paralyzed among other ailments. I, too, wish more digging would be done but I fear Big Pharma has too much money and a big PR machine to discredit any studies against their products.

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    1. Absolutely. The rise in autoimmune diseases and disorders is alarming, and we simply cannot trust big pharma to tell us the truth about anything.

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  7. I agree with everyone else that this is a very eloquent, soundly written piece approaching this tender subject. I have some of the same opinions as you, some differing. I do believe that in SOME children it may cause the perfect storm that you are speaking of. However, I don't know that research would ever be able to adequately be able to develop a test for what could be several different factors. The cost of that alone would be magnanimous. I do believe that it would be worse if we didn't vaccinate. I fully support a parent's right not to, but not agreeing with their position I'd hope they'd support me not wanting my child around them. Sounds harsh, I know. It's just my opinion. I would hate to have a child develop something so awful from a vaccination. But at the end of the day, I couldn't have known. I'd take that scenario over my child getting a very easily prevented disease like polio any day. Hopefully, I never have to experience either.
    I think that there is a connection that people haven't yet realized. Maybe it's in vaccines, maybe it isn't. But I truly feel something is making the rates for autistic children rise, but ALSO the rates are rising due to better screening and diagnostic procedures and awareness. Same thing with other mental health issues. Schizophrenia has been around forever. We just know what to call it now and treat it, instead of putting someone in a home.
    Great post. I love and appreciate that you tackled it from a point of research and fact! (A girl after my own heart! lol)

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    1. It is such a complicated issue, and the amount of money that would be required to find the truth is staggering...but I believe it's worth doing. Thank you. :)

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  8. This is very insightful. My daughter & son both have autoimmune disorders. And my son has gotten sick from his vaccines, and has not been diagnosed with ASD. He does have several problems. My daughter is 13 and has immunodeficiency and has not been able to take her vaccines. We live in the state of Texas where it is not an option. You can not go to school if you have not had them. The dr has written several letters to the school stating that giving her these vaccines will kill her yet they still argue with us every single year. I agree that someone needs to do the research and I know it will not be cheap. But is there a price tag we can put on the lives of our children?

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    1. If we live in a world where tons of money is thrown at lifestyle medications for adults, we can absolutely spend it on our children. Thank you.

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  9. You did it again Kelly! You took the words from my brain and put them on the page!!! I was a behavioral therapist for children with Autism in college and have worked as a special education teacher for many years and have developed the same opinion you have about the underlying cause of ASD. Every parent I have worked with has said they thought their child was developing normally and then started regressing and I think that is what creates the guilt and blame within the parents themselves- they saw what could have been and something changed it.
    From my own studies, work experiences, and research I 100% feel that there is an underlying biological button in these children that is triggered by outside events- illness, vaccine, etc. The prevalence in twins and siblings would lend itself to the genetic/biological link. I am hopeful that an independent study can be done that will help shed light on how to identify if your child is at risk for such a reaction and how to avoid it. It is the unknown that is fueling fears, even within myself.
    With all of my experience with ASD I have not been a parent to a child with ASD and I can only imagine how difficult it would be. I was so afraid of unknowingly doing something to cause trigger within my children that during my pregnancies I refused to take any medications and had natural childbirths. I then gave my children only breastmilk and organic foods and spaced out all vaccinations to avoid any unknown triggers. I guess it was for my own peace of mind but with a 1 in 110 shot who knows?
    Thank you for writing this. It is so important for people to understand the complexity of the rulings and the impact on vaccinations.

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    1. These are complicated conditions and these cases just made them more so. I hope we can find answers.

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  10. Such a well written post. While I don't have any children who have been affected by immunisations, I am very skeptical on the increasing amount required. Where once you got chicken pox and got on with your life now you need not one but 2 vaccinations for this. Perhaps splitting MMR back up and administering separately may stop the problem. Who knows. Unfortunately we're working against giant corporations more interested in the money than the actual health of people that we cannot trust what they are giving us for our own good. My newest fear is the possibility of the HPV vaccine becoming compulsory for all children at 11-12. They tried to give it to my 11 yo son when he went for his boosters of all other required vaccinations. I argued with the nurse who got quite irate at me, after I laughed in her face... The boy doesn't even have a cervix! That said I truly believe, as do you, we need more INDEPENDENT studies to find the truth. In the mean time I pray for all the families affected and hope solutions can be found.

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    1. We absolutely need well funded, independent research. Absolutely.

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  11. Fantastic! It remains an incredibly difficult decision for our family to vaccinate. First, we concern ourselves with the origin of the vaccine, then weigh its importance. Secondly, I probably make myself sick with worry how it will affect our child/children. As I understand it, no state run school will admit an unvaccinated or partially vaccinated child. That goes for day care centers (even not state run) and of course public aid, ie: Medicare/MediCal, WIC and foodstamps. So many are more than struggling not to be homeless. These state programs keep many afloat.

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    1. It's complex, for sure. I wish you wisdom and peace with your decisions.

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  12. Incredibly well written. And you are correct, there needs to be more non-basis research and study put into vaccinations and the effects of them. I also think there needs to be more research done into food processing and the chemicals in them. For all we know it could be a combination of food, vaccines, environment, etc…like you said, the perfect storm.

    I also wouldn’t be surprised if this piece gets picked up by others and reprinted.

    Nice work honey.

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    1. I didn't even talk about food and environmental issues....this was big enough to tackle. xo

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  13. Excellent. Goes without saying.

    So my belief since becoming a mother is this:
    If children were not vaccinated, as so many have, we would live in a global pandemic. Diseases like Polio...Smallpox...diseases that were prevelent when my mom was a kid - we wouldn't [society] stand a chance. I have wondered about Jenny McCarthy's view on her son, Evan, and his autism. I have also wondered...what if NOT getting vaccinated can be linked to autism.
    My main point being this: If there existed enough data linking vaccines to ANYTHING harmful, I would do my due diligence...But
    somebody put a little bee out there and BAM...scared parents.
    To each his/her own. I just happen to consider what would happen if my child contracted a devestating disease and also
    how it would feel as she infected kid after kid
    after kid who also were never vaccinated.
    Mine had hers.
    There's my 2 cents (:

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    1. No question that vaccines have saved lives. Love to you, my friend.

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  14. Nicely written.

    As the mother of a child on the spectrum, I do see both sides and as my 3rd child grows, immunizations scare me.

    But here's the question I want you to ponder, IF it did affect your child, as much as it changes your life, I promise he/she is still your child.

    He/She will make you just as angry and just as proud in there given moments of life. Try to see the beauty there.

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    1. Absolutely, and a beautiful point to illustrate. Thank you so much for adding your voice. :)

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  15. Jerri Lynn Stewart WarburtonJanuary 23, 2013 at 5:04 AM

    Listen. I haven't read it yet. I am just SO excited that you wrote this! Now, I can tell you without sounding crazy. My daughter was diagnosed with type 1 about 3 years ago. I have told you that. We have talked briefly on Fbook about type 1 and its heartbreak. BUT what I did not tell you is that I think it COULD be in direct correlation to a vaccine. You see, the year she was diagnosed is the year that Swine Flu reared its ugly head. And people were dying. CHILDREN were dying. They made a vaccine for it. They said GET THE VACCINE. My daughter got the swine flu vaccine and 6 months later ended up in PICU (pediatric intensice care)for a week and when she got there she was in DKA (diabetic ketoacidosis)and almost comatose. Her A1C was over 11. That means her blood sugar had been high the past 3 months. I cannot say that getting that vaccine that they had JUST DEVELOPED (and DON'T use anymore) is what tripped her immune system. I cannot say that if she had NOT gotten that vaccine she would be a healthy child today. BUT I CAN WONDER. And that is what kills me. Now. I will go back and read your blog. Thank you so much for making me feel sane!!! Jerri Lynn WArburton

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  16. You are on a hot-button tear, my friend! Been flipping through your recent posts. As always, I might not agree with every stance and point you take, but I love that you argue with passion, intelligence, and clarity.

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