Is The Vaccine Injury Compensation Program Covering-Up An Autism-Vaccine Link?

Geek Culture

immuzation-image-475x356For years–at least a decade, as it was a question among the psychology community when I studied abnormal psychology about one decade ago–there have been questions regarding why autism rates are rising. One of the many theories is that rates are not rising. Instead, the medical community has gotten better at recognizing and diagnosing Autism Spectrum Disorder (ASD), coupled with a much expanded definition of ASD.

The last two weeks were really cool for me. Two exciting studies were released regarding autism. One study out of the UK indicates that autism rates in adults are the same as those in children. Many of the subjects of this study had no idea they fell under the spectrum, nor had they ever been diagnosed with autism. Another study out of South Korea, indicates higher rates of ASD in South Korean students–2.6% compared to 0.9% in the US–simply as a result of expanding testing to include students who are not considered to be in high-risk groups. Both of these studies are excellent starting points to answering the question, “Have ASD incidence rates increased or are we just more aware and therefore doing a better job diagnosing it?”

This good beginning was overshadowed by other autism news.

Last week, a number of press releases went out stating that a new study, published in the student-run Pace Environment Law Journal, proves a vaccine-autism link. Quoted from one press release:

“As this study shows, vaccines can and do cause brain damage and subsequent autism in certain children,” said Fournier.

Another press release stated:

The question is no longer, “Can vaccines cause autism?” The answer is clear.  Now, we have to ask, “How many cases of autism have vaccines caused and how do we prevent new injuries from occurring?”

Before I speak to this study, I want to make it clear that there are known risks to vaccines, including seizures and encephalopathy. These risks have never been denied and vary depending on the vaccine.

I want to make it clear that immunization is not 100% effective. Depending on the vaccine, these rates vary. Also, not all vaccines provide lifetime immunity and booster shots are required. However, if you want to weigh the risks of severe complications from the disease–1 in 1,000 die from measles–compared to the rate of severe complications from the vaccine–Encephalitis or severe allergic reaction: 1 in 1,000,000. Seizure: 333 in 1,000,000 from MMR–the odds are in favor of the vaccine.

This study did not show vaccines can and do cause brain damage. It was an already known fact that has never been denied or disputed. In fact, with every single case sited in this study, the reasons for compensation were due to seizures and/or encephalopathy. None were awarded compensation because the child became autistic as a result of immunization and this study states as much.

In the introduction, the authors state (page 4):

This assessment of compensated cases showing an association between vaccines and autism is not, and does not purport to be, science. In no way does it explain scientific causation or even necessarily undermine the reasoning of the decision in the Omnibus Autism Proceeding based on the scientific theories and medical evidence before the VICP.

What the conclusion actually states is (page 53):

While there are likely many routes to “autism,” including prenatal neurological insults and toxic post-natal exposures, this preliminary analysis of VICP-compensated cases suggests that autism is often associated with vaccine-induced brain damage. It raises the questions if the VICP’s decisions have been fair to reject all claims of vaccine injury that use the term “autism.” This preliminary assessment also suggests the possibility that other contemporary childhood neurological disorders, including attention deficit disorder and learning disabilities, might be less severe after-effects, on the same spectrum of vaccine-induce brain injury.

Based on this preliminary assessment, there may be no meaningful distinction between the cases of encephalopathy and residual seizure disorder that the VICP compensated over the last twenty years and the cases of “autism” that the VICP has denied. If true, this would be a profound injustice to those denied recovery and to all who have invested trust in this system that Congress created. This preliminary study calls for Congress to investigate the VICP and for scientists to investigate all compensated cases of vaccine injury to gain a fuller understanding of the totality of consequences of vaccine injury.

Also stated by the authors (page 14):

Because autistic disorder is defined only by an aggregation of symptoms, there is no meaningful distinction between the terms “autism” and “autism-like symptoms.” This article makes the distinction only to accurately reflect the terms that the Court of Federal Claims, caregivers, and others use. It is not a distinction to which the authors attach significance.

The problem with the above statement is that there is a significance, especially as there are a number of disorders that can appear like autism, having many things in common with autism, but are not autism. This is a very dangerous way of thinking. Imagine if the medical community had this type of thinking when it came to treating any disease or disorder that shares traits with, or has a tendency to mimic, other diseases and disorders.

All the authors did was search a database for specific terms and compiled the search results together, then try to report a causality link, while acknowledging that the legal standard of causation is not the same as the scientific standard. Using their method, I could pick any word I wanted, one that I know is in the database, then create a paper designed to show causation.

Another thing that is very important to know about this study is that two of the authors represent clients who have claims on behalf of family members in the Vaccine Injury Compensation Program. This is not an independent study. The authors are biased. The authors have a vested interest in the outcome. Also, all authors are on the board of the Elizabeth Birt Center for Autism Law and Advocacy, which is an autism advocacy group.

The authors also state that they had help from Pace University Law School. One press release–the original has subsequently disappeared from the internet–stated:

Investigators from Pace Law School in New York will be joined by parents and children with autism to announce a groundbreaking study that strongly suggests a link between vaccines and autism.

I spoke with the media relations department at Pace University Law School,via telephone and e-mail, and was told that was not the case. To quote:

Pace Law School had no participation in the paper. Pace Law students assisted with legal research of the vaccine court decisions and creating an objective database of the case holdings and facts, but neither Pace Law School nor any of our students had anything to do with the article or its findings or conclusions nor do we express any opinion on the article or its findings.

Furthermore, as published on About.com and confirmed by myself, via telephone and e-mail:

The article, titled, “Unanswered Questions From the Vaccine Injury Compensation Program: A Review of Compensated Cases of Vaccine-Induced Brain Injury,” is authored by four board members of the Elizabeth Birt Center for Autism Law and Advocacy. It will be published in the Winter 2011 edition of the Pace Environmental Law Review, Volume 28.2. It will be available May 10 on the Pace Environmental Law Review’s website.

The article’s authors are Mary Holland, Research Scholar and Director of the Graduate Legal Skills Program at NYU School of Law; Louis Conte, an independent investigator; and Robert Krakow and Lisa Colin, attorneys in private practice who represent clients who have claims on behalf of family members in the Vaccine Injury Compensation Program. They are all on the board of the Brooklyn-based Elizabeth Birt Center for Autism Law and Advocacy, which provides training, resources and a forum within which to advance legal and advocacy strategies to improve the lives of those with autism.

Established in 1982, the Pace Environmental Law Review (PELR) was one of the first scholarly journals in the then-new field of environmental law. It is run and edited by Pace Law School JD candidates. Since August 1, 2009, the law review has used an anonymous peer review process to select articles for publication. Submissions are reviewed internally, and then forwarded to a selected group of peer reviewers: academics, practitioners, and experts in the field, including members of Pace Law School’s world-renowned environmental law faculty.

The way in which SafeMinds.org has presented this study is very misleading. Not a single thing about this paper, or the involvement of Pace Law School, has been represented accurately. How many parents are going to take the time to read the 66-page paper or are they just going to listen to the press and believe the presentation? How many of the parents who do take the time to read the study are going to be able to understand it? Not every one has a background or education in research. Without such a background or education, reading these types of papers and interpreting them correctly can be quite difficult.

The result: More fear and panic surrounding vaccines and autism. Instead of funding other possible causes such as: genetics; environmental; and whether or not there is an actual increase in autism spectrum disorder or is it because of a broader definition and are we just better at identifying it, more funds are at risk for being diverted to researching questions that have already been answered.

As a parent, I know we want nothing more than for our children to be safe. On a daily basis, we do things to protect them. Many of the things we do carry a higher risk than the possible severe adverse reactions of immunization, plus they are not nearly as effective as immunizations. Using a seat belt is one of many examples. Seat belts are shown to be only 45% effective in reducing the risk of fatal injury to front-seat passengers. Child safety seats are 71% effective for children younger than one year old and 54% for children 1-4 years old. Seat belt use is also shown to increase the risk of abdominal injury. Immunization effectiveness ranges from about 80% to near 100%.

I can also understand why so many parents are wanting more transparency. When I was preparing to write this article, I asked a group of moms whether or not they felt they received full disclosure when vaccinating their children, if they understood the risk and if they didn’t feel they received full disclosure, would they have made a different choice upon receiving it. The responses were pretty much split down the middle between those who felt they understood the risks and those who did not. I know this is not a scientific survey in any form.

I asked because I wanted to know what it is like for a parent in the US to navigate this issue. I needed to understand this as I’ve always been aware of the risks and I am often baffled by why there is so much confusion surrounding this issue. Living in Canada, our system is quite different. Every thing, from how and where vaccines are administered, to how reactions are reported, to how data about vaccination rates are collected, is different. My boys were born in 1995 and 1999. Before there was an autism-vaccine scare, I received more than enough information during their immunization appointments to make an informed and educated decision.

I also decided to search the internet for US-based, parent-friendly equivalents to the resources residents of British Columbia receive for free. I asked Leart Shaka, the editor-in-chief of The Vaccine Times, to send me links to sites containing the information I was looking for, as it appeared my Google-fu was weak that day. I discovered that my Google-fu was not weak. The reality was there is nothing US-based that presented the information I was looking for in, what I would consider, a parent-friendly way. They were all a hassle to navigate, difficult to find the wanted information and contained things that turn me off, such a celebrity endorsements or things being sold on the front page. To say it was frustrating is an understatement.

I invite you all to visit the ImmunizeBC website. The site is easy to navigate. The answers are short and sweet, in easy to understand language, with links to more information. On the front page, you’ll find the answers to the two most common questions asked today: “Is there any link between the MMR vaccine and autism?” and “Will multiple injections overwhelm my baby’s immune system?”

I am not a doctor. I cannot give you any medical advice. I can say the science has shown, time and time again, that there is no link between vaccines and autism. It is also important to understand that when you vaccinate your children, you are not only protecting them but those around them. There are some people who cannot be vaccinated for medical reasons. They rely on those around them for herd-immunity.

Our generation has been lucky to grow up in a time where we did not see the effects, first-hand, of the diseases that vaccines protect us against. Our parents’ generation was not so lucky. I had a teacher who was crippled because of polio. It would be terrible if we had to see these effects, once again, in order to get the necessary incentive to protect our children from these diseases. Already, the cases of measles and whooping cough have increased in the United States, with nearly 50% of those who contracted measles in the last few months ending up in hospital and a number of babies hospitalized and dying from whooping cough.

Many argue that we should have a choice in this area. My personal opinion on that issue, and it just that, an opinion, is that when it concerns public health and safety, we do not have a choice unless there is a medical reason why one cannot be vaccinated. We don’t allow people to drive while under the influence. We don’t allow people to drive without a seat belt. There are many things we do not allow because, to quote Gene Roddenberry via Spock and Kirk, “The needs of the many outweigh the needs of the few… or the one.”

I will not tell you to vaccinate. I will ask that you please speak to your doctor or local health nurse. Through immunization, you are not only protecting the life of your children, but also the lives of those around you.

In the interest of full disclosure: I am the layout and design editor of The Vaccine Times, a quarterly print-publication, by parents who are trying to find out as much information as they can about vaccines and vaccine preventable diseases. I volunteer my time and resources, and receive no compensation for doing so.

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20 thoughts on “Is The Vaccine Injury Compensation Program Covering-Up An Autism-Vaccine Link?

  1. Every time I go to the doctor for vaccinations the nurse hands me a sheet (for each shot — and one for each child, if we’ve that weird confluence of events that has both of them due) to read and sign — then she go away to prepare the medication leaving me time to read.

    Every time.

    If I sign the paper without reading it then I might not be properly informed but that is not the doctor’s fault. So I wonder, did these women who feel that they weren’t informed sign all the paperwork or is that something unique to my doctor?

  2. Jules, I’m really appreciative of you digging so deep behind the headlines and into the research, especially on this particular morning where I’ve just come from getting my baby’s MMR shot at the pediatrician.

    As a parent, I trust in science. Though not infallible, it’s the best we’ve got at any point in time. Also, I really researched pediatricians before settling on an office, and now I lay my trust in them. My kids are 5 years apart, and their methodology on many things has changed over those years as they listen to the latest scientific findings. One thing that hasn’t changed in that time, though, is their policy of vaccines. They believe that the benefits strongly outweigh the risks, and so do I.

  3. Thank you for writing this. When topics as frightening as a potential vaccine-autism link hit the media, people often have a strong, immediate reaction. We go into panic mode, desperately worrying that we may be harming our children. We forget that our grandparents survived a time when diseases like polio took the lives of many of their friends and family members.

    Part of this reaction comes from the fact that we trust our news sources. We depend on reporters to ask all the right questions, verify all the information, and apply the necessary critical thinking before they bring such a serious matter to our attention. Unfortunately, this is not always the case. We have to keep in mind that the news is a business, too, and they may broadcast a hot topic of questionable verity in order to promote ratings or readership. The result in the vaccine case is that more and more young children are suffering from harmful yet preventable illnesses.

    I will soon find out whether or not the doctor provides me with enough information about vaccinating my little one. However, I have already made my decision. I would never forgive myself if my child were to die from a disease like rubella or whooping cough (or to suffer from it and infect other children) when I could have taken steps to prevent it.

  4. Nicely done. I was worried (when I read the abstract on GeekDad) that this was going in a different direction. Thanks.

  5. Good article, although I would have started the strong debunking immediately. Excerpts around the net would make you think GeekMom is giving the anti-vaxers some credit. They deserve NONE.

    1. And here is my confusion, John. I’ve seen similar comments on GeekDad, when I did debunk it right away. SafeMinds etc said this proves a link, I quoted directly from the paper where it states it demonstrates no such link. Not only that, but the paper is not science.

      I’m not sure how I could have debunked it any quicker when the paper itself says it doesn’t claim a link.

      Maybe if I immediately talked to each point I quoted from the paper? I don’t know. The original article was close to 5000 words. Editing to something more readable, while still demonstrating: No, this paper proves nothing other than good database search skills; was difficult.

  6. “Also, all authors are on the board of the Elizabeth Birt Center for Autism Law and Advocacy, which is an autism advocacy group.”

    EBCALA is an anti-vaccine group.

  7. With my minimal knowledge of statistics, I think I can safely say that this study is completely useless. They used a self-selected group to base their results on, not a general, randomly selected group. People who had no problems don’t look for compensation.

  8. Thank you very much for the information. I have always been pro vaccination and it’s nice to see someone take the time to really do the research and get the information out there.

  9. Like others, when I saw your link show up in my Tweet feed I cringed. I thought I would be reading another diatribe accusing the industrial medical complex, the FDA, the CDC, and Halliburton Group of hiding the “link” between vaccines and autism. Like others, I wish that the headline you used and the introduction to your article debunked this “story” upfront and then allowed us to dig deeper into your excellent analysis. In truth, it was Wakefield who was in cahoots with plaintiffs’ lawyers trying to manufacture a link between the MMR vaccine and autism that resulted in the vaccine scare, huge drops in the vaccinations of children of white, educated, affluent parents, and corresponding outbreaks of disease that killed children. He committed medical fraud and pieces like the article you so effectively refute continue to perpetrate it, in part because media outlets cannot report science and in the absence of cogent, clear explanations such as what you offered, people don’t and can’t understand it. My thanks for your refutation.

    1. This helps. Thanks! If I end up having to do a follow-up or another similar article, you’ve given me feedback that will help me to shape the flow of the article differently.

      How articles are written in Canada are much different than in the US. I’m still learning to write in a style that is very different from how I was taught. It is quite the adjustment.

  10. Great article Jules, like others i was a bit wary at first as to which direction you were going in. This is a very well researched article. I like the way you broke down the legal-ese and explained it in simple terms and then compared that to science.

    If you do a follow up maybe you could focus on the difference between how lawyers and scientists define causation?

    Or how to spot a bias/flawed study?

  11. I haven’t seen the other version, but in America the article structure tends to follow the format:
    – Title
    – Most Important Information
    – All of the Information
    – A recap of the Most Important Information.

    The article is fantastically well-written, and debunks the myths perpetuated by the anti-vaccine nutjobs completely, but America seems to be the home of “TL;DR”, so while the people who would see this site tend to read full articles, you have to work with the assumption that people might only skim the beginning.

  12. As I family physician I too, cringed when I first started reading your article on Geekdad (sorry to belabor the point). However, you might have lured in some who are anti-vaccine and then through your well laid out dismantling of the article helped to give them pause!
    So, I hope you changed a few minds in that way, because I have tried to coax, convince and really struggle with parents to get their kids vaccinated. Though you are “not a doctor,” (don’t apologise for that-you argue and research much better than many!) I sincerely appreciate your hard work on this topic as sometimes the mom to mom link is much more potent then me saying the same old thing.
    It just demonstrates more bad science and frankly research (they did a good job gathering data, but if they’re going to discuss scientific topics then they should be held to scientific standards, not just legal ones). This is all that has come from the anti vaccine camp-bad science, fear and now preventable death of children-several in my own state.
    Keep up the good work

  13. Excellent piece but I have a quibble – it’s Spock, not Spoke. Mr. Spoke is clearly Spock’s evil twin. Might want to change it before you lose any of your geek cred. Keep up the good fight!

  14. ok I have to admit, I haven’t read it all , it’s really long and my ADD just doesn’t let me concentrate that long lol.
    But I have to put it out there , the reason for a higher rate of diagnosis is because science has grown and they CAN diagnose it. The same reason for higher rate of ADHD dx, because those kids are no long shoved into the bad kid or kid suffering from bad parenting category.

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