Is there a split in the autism-vaccine groups?

1 Mar

For people who watch the public discussion of autism and vaccines, organizations like Generation Rescue, SafeMinds, the National Autism Association and TACA (and others) come to mind. One less public organization is Focus Autism. Focus Autism is a private foundation. In other words, they don’t accept donations from people outside the foundation. Here are tax forms submitted by Focus Autism in 2010 and 2011:

2010 tax form 990
2011 tax form 990

In 2011, Focus Autism pulled in $1.7M, which makes it as big or bigger than most of the other groups named above. If you peruse their website, it is clear that they have promote the vaccine-epidemic idea. Their “about” statement is:

FOCUS AUTISM is dedicated to finding answers about autism causation, no matter how inconvenient it might be. We believe in accountability, transparency and above all, a sense of urgency.

Childhood vaccine policies must be carefully administered. We demand strict avoidance of neonatal vaccination and vaccination of vulnerable children.

We must hold leaders of government, corporations, and the medical establishment accountable for failures that have led to the autism epidemic.

Leaders in the field agree there is a subset of vulnerable children who are predisposed to vaccine-related injury. We want those children identified, so that we do not needlessly harm innocent children.

Millions of dollars have been funnelled into genetic research in a frantic search for the single gene or a small number of genes responsible for the autism epidemic. Emerging consensus rejects a purely genetic cause. Most experts now agree that the primary causes must be a combination of genetic and environmental factors.

They have funded a mix of projects and groups. In 2010, most projects were not vaccine-focused. In 2011 they funded: Autism Speaks ($51,000), the Marcus Autism Center ($50,000), projects in Africa and many other non-vaccine focused projects. In 2011, Focus Autism funded vaccine-oriented groups such as the National Vaccine Information Center ($37,500), SafeMinds ($70,000), Generation Rescue ($40,000).

In 2011, Focus Autism added to its board Louise Kuo Habakis and Katie Wright, both vocal proponents of the vaccine-causation idea. The board currently includes Brian Hooker, who is also a vocal proponent of the idea. There has been some discussion lately about Mr. Hooker’s involvement with the autism hearing held by the Committee on Government Oversight and Reform last year. The idea being presented that Mr. Hooker, lone citizen, made contact with members of congress and got the hearing moving.

Consider that Focus Autism was founded and is apparently run by Barry Segal. Mr. Segal’s family foundation has over $50M in assets, and seems to be doing a great deal of good work, especially in sub-saharan Africa. Mr. Segal’s company sold for an undisclosed amount, but had sales of $1.7B (yes B) in 2006.

Here is a picture from Facebook showing Mr. Hooker in the audience of the congressional hearing from Focus Autism’s facebook page. Sitting next to him is Mr. Segal’s wife, then Mr. Segal.

Hooker-Segal 2

I consider it possible he had a bit more support in his efforts than, say, I might have.

Focus Autism includes in its list of partners: Age of Autism, EBCALA, the National Vaccine Information Center, the Canary Party and the Dwoskin Family Foundation. All groups promoting the idea that vaccines cause autism.

As to the split mentioned in the title of this article, consider this short blog post on the Focus Autism website: The Fragmented Autism Community:

The so called autism community is represented by:

#1 Autism Speaks, which because of Bernie-Julie thing refuses to meaningfully go after environmental issues, especially vaccines.

#2 Safe Minds, another disaster and I don’t know (or care) what their agenda is.

The rest of the community is fragmented, acts like our congress, accomplishes nothing and has an approval rating similar to congress. In both cases we need to change.

“Bernie” is most likely Bernie Marcus, co-founder of Home Depot and founder of the Marcus Autism Center. I’m not sure who “Julie” refers to. SafeMinds, well that reference is clear. It is also interesting in that Focus Autism donated money to both the Marcus Autism Center and SafeMinds in 2011. Somewhere in the past couple of years, there seems to have been a falling out.

Given some of the current discussion about the way the congressional hearing was put together, specifically Mr. Hooker’s and SafeMinds’ roles (see here, here and here), it is interesting to see the organization he works with taking such a harsh stance on SafeMinds.

The name Barry Segal was familiar to me, and it took me a few days to recall where I saw it before. It was on a discussion at the Forbes website. I usually avoid bringing discussions held on other sites to this blog, but I think these statements show the possibility of further rifts, both between autism organizations and within organizations. Here are the statements made by Mr. Segal (or someone using his name, but I have no reason otherwise) at Forbes:

First this one (actually two, it was repeated):

I guess you are aware that in 1960, 3 years before the measles shot, 100 people died of measles. In 2012 over 80,000 of the babies born that year will end up on the spectrum. Bob Wright knows certain children are vulnerable to vaccines but Bernie Marcus won’t let him go there. Do you really give your child or grandchildren a Hep b shot at birth, or do you have them practice safe sex till they are 6 years old. (That is when the shot wears off)

Indicating his opinion that Bob Wright (founder of Autism Speaks) wants more vaccine research but that Bernie Marcus (Marcus Autism Center and Autism Speaks) is blocking it.

Mr. Segal went on:

I won’t discuss Hepatitis B with you except that the following five countries, Denmark, Sweden, France, Germany and Japan only give the Hepatitis B vaccination to children whose mothers test positive.

As far as Bob Wright, I have met with him and he shared with me, the following thoughts:
1.That there needs to be more vaccine research
2.That there should be no more thimerosal in any vaccines or medicines

I had dinner with Bernie Marcus in Florida. Towards dessert, I mentioned what Bob Wright had said and he told me, “There is no thimerosal in this country today,” to which I replied, “ You’ve got to be kidding me, you can go to your local drug store and get a shot of thimerosal in your flu injection.” He is clueless and after starting the Marcus Autism Center and hearing Bob Wright had an autistic grandchild, he reached out to Bob Wright to form Autism Speaks with the intent that they do not address the vaccine issue. Peter Bell and Holly Peete both have vaccine injured children and will not vaccinate their subsequent children as mandated.

And this:

I had breakfast with Peter Bell on 12/8/11. He explained to me that the increase in the vaccinations alters the immune system. When he lived in CA, he didn’t have to vaccinate his children (philosophical exemption is available in CA) but when he came to NJ, he slowed it down as much as possible. Peter suggested Tylenol could be part of the problem.

Rodney Peete said in his book, “NOT MY BOY!” co-authored by Danelle Morton:

“At home that night, R.J. had a terrible fever and started shaking violently, just short of something like a seizure. Holly called the pediatrician to ask him what could have caused this. Should we take R.J. to the hospital? The doctor was unruffled and told us it was not a reaction to the shots. He recommended that we give R.J. some Tylenol to help him with the fever and he promised that R.J. would be fine. R.J. had a terrible reaction to the Tylenol and we rushed him to the emergency room late that night. We believe he went into some kind of toxic overload shock. After that, we didn’t hear the words “Mommy” or “No” for about four years.”

As far as vaccine safety, the problem is much more than just thimerosol. Today, the autism incidence rate is 1 in 88 and this is for children born in 2000. If we apply a more conservative 8% growth rate to this rate, we’re looking at over 80,000 children born this year being on the spectrum!

In these two suggesting that Peter Bell (Autism Speaks), Holly Robinson Peete and her husband Rodney Peete (HollyRod foundation, Autism Speaks) are also proponents of the vaccine-causation idea.

All this again indicating tensions between and within autism orgs over the topic.

For anyone who thinks the vaccine-autism-epidemic idea is going away from the public discouse any time soon, keep in mind that this is not a grass roots movement. There are millions of dollars being spent by these groups every year. Much of it from wealthy donors.

Mr. Segal had some very interesting things to say about the departure from Autism Speaks of their previous president. That is discussed in Was Mark Roithmayr pushed out of Autism Speaks over vaccines?


By Matt Carey

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19 Responses to “Is there a split in the autism-vaccine groups?”

  1. lilady March 1, 2013 at 08:17 #

    Wow, just wow. So it is big money that is funding all of these incestuous inbred anti-vaccine, anti-science organizations. We’ve known for a long time that J.B. Handley funded Generation Rescue, which is affiliated with Age of Autism and that fund-raised Gen Rescue money was handed over to Wakefield’s Strategic Autism Initiative. Now we find out that Mr. Segal’s private Foundation provides complete funding to the Focus Autism organization which is run by him and his family, with the stated purpose to fund yet more research to revive the *theory* that vaccines cause autism. Focus Autism’s website is pathetic and replete with old and disproven studies about Thimerosal, hepatitis B vaccine and autism research.

    Not content to fund other crank organizations such as the NVIC, Segal has the colossal gall to reveal private communications and private conversations with Bernie Marcus and Bob Wright. This, IMO, has all the elements of a power play on the part of Segal. It appears that his bile is directed at other autism groups, including the very powerful Autism Speaks. Hostile takeover, perhaps?

    I always wondered who was behind Brian Hooker and who was funding the court cases where Hooker hauled the CDC into court…I think I have my answer.

  2. Anne March 2, 2013 at 01:18 #

    Who is Julie? According to a certain member of what I fondly think of as the paranoid community, a former CDC Director, code-named “Julie,” has her mojo working on Bernie for the benefit of Big Pharma. According to this source, Julie is a femme fatale with charms so powerful that she can use them to influence Autism Speaks policy. Clearly Big Pharma, thinking outside the box, has ramped up its vaccine outreach program and has been busy as a beaver snatching power for its own evil ends.

    • AutismNewsBeat March 5, 2013 at 03:18 #

      “In 2012 over 80,000 of the babies born that year will end up on the spectrum.”

      That’s 50:10,000, or 2%.

  3. Sullivan (Matt Carey) March 5, 2013 at 17:57 #

    For whatever it may be worth, Mr. Segal started a new entity last year “Facing Autism”, with an alternate name “Autism Truth”.

    http://lbrbblog.files.wordpress.com/2013/03/facingautism.pdf

    [note: edited to correct link]

  4. Barry Segal March 6, 2013 at 17:48 #

    Matt,

    Julie, is Julie Gerberding, former Head of the CDC and now (can you believe this?) Head of the Vaccine Division at Meck.

    We were in the same type of business as Home Depot and heard of the affair from an ex-employee.

    Bob, Bernie and myself have enjoyed our lives, so if we take some pain, so be it. Autism Speaks knows that a certain subset of children are vulnerable to vaccines, David Amaral has said the same thing. The CDC says 3% are vulnerable. What I am saying is that if you know children with earaches, who are on antibiotics, can regress on a vaccination, why would you not tell everybody? Why take any chance and why would you give them catch-up vaccines?

    By the way, light on the 50 million, like saying Michael Jordan had a lifetime scoring average of over 15 points a game.

    As Yogi says “I’ll never, never, never give up.”

    • Sullivan (Matt Carey) March 6, 2013 at 18:29 #

      Mr. Segal,

      Thanks for clarifying the “Julie” statement. I was aware that she went to Merck. I wish she hadn’t due to the very example you give: it allows people to argue impropriety.

      “so if we take some pain, so be it” I apologize if this has resulted in any pain.

      You do a lot of speaking for other people and groups, without providing public information to bolster your claims. It is basically an appeal to authority, but without actually giving people the opportunity to confirm your interpretation of authority.

      $50M is in reference to your family foundation, whose most recent tax forms state $50-60M in assets. Congratulations on your successes in business. From what I could see, you are doing a lot of good in Africa and I appreciate that effort.

      “As Yogi says “I’ll never, never, never give up.””

      I for one am not asking you to give up. For those who are in pursuit of the truth, I hope they don’t give up. For those who are in pursuit of verifying a preconceived notion, I know it is fruitless to try to convince them. When I see statements which I feel are incorrect and need addressing, I will respond. Such is the case with the “vaccine-epidemic” hypothesis.

  5. Barry Segal March 6, 2013 at 17:48 #

    LiLady,

    I don’t feel that vaccines cause autism, they contribute. Barbara Loe Fisher says it very clearly.

    “When symptoms of brain and immune dysfunction labeled by doctors as “autism occurs after vaccination in a previously healthy child, it is likely a combination of individual biological/genetic, health and environmental co-factors that intersect with the particular vaccine or combination of vaccines given. In other words, the biological mechanisms for vaccine-induced autism are many and are based on host vulnerabilities and the vaccine(s) given and these biological mechanisms will become even more complex and varied as new technology is used to create genetically engineered vaccines.”

    • Sullivan (Matt Carey) March 6, 2013 at 18:20 #

      Thank you for responding Mr. Segal:

      Ms. Fisher also quoted Rick Rollens as stating:

      If by 2009-2010 there has not been ANY change in the rate of increase of new cases of autism entering California’s developmental services system, then we can scratch mercury in vaccines off our list of agents contained in vaccines as a cause, and; then begin concentrating on the numerous other poisons and toxic agents in vaccines such as aluminum, formaldehyde, MSG, live viruses, etc., and most importantly, the interaction of these and other toxic agents contained in the 34 doses of vaccines children receive from birth to two years old today

      It is 2013 and the adminstrative prevalence rates (using the supposed “gold standard” Mr. Rollens cited, the CDDS data. Add to that special ed data) are still climbing.

      While I note that Mr. Rollens built in a goal-post shifting statement, it is time for the groups that pushed the idea that Thimerosal caused an autism epidemic to admit they were wrong. It only takes courage to make the statement in the first place if one is willing to admit the mistake.

      As to Ms. Fisher’s comment, I’ve already given you my interpretation. But I will present it again here: it lacks substance. Boiled down, it says, “We still believe it’s vaccines, but we don’t have any idea of the mechanism to propose”.

      If you check the article cited, you will notice Ms. Fisher first quotes Eric Fombonne as saying, “The DDS data do not support the hypothesis that exposure to thimerosal during childhood is a primary cause of autism,” then goes on to build a straw man argument that Fombonne argued agains the idea that there could be small susceptibility groups.

      I’ve said this before, but I’ll say it again: groups promoting the idea that vaccines cause autism need to accept that the rise in diagnoses is not caused by MMR and thimerosal. Those data are in. Also, the geographic differences in rates and increase in rates argue strongly against a single exposure model for the increase. Why, for example, is the rate extremely low for Hispanics in the midwest, and high for whites in Utah?

      There are a number of social influences involved with the increase in autism rates. Again, I’ve said this before, people need to abandon the “epidemic” idea and switch to saying, “the social influences are so great that it would be impossible to determine if a small susceptibility group is involved using standard epidemiology.” Basically use the facts to bolster their arguments. Claiming the facts are wrong is a pathway to failure.

      Studies into the biology and risk factors of autism are the areas with the most funding right now. Those areas feed in to all possible etiologies.

  6. Barry Segal March 6, 2013 at 21:42 #

    Matt,

    Below is some correspondence with David Amaral from June 18, 2012.

    From: Barry Segal
    To: David Amaral ['dgamaral@ucdavis.edu']
    Sent: Monday, June 18,2012 3:03 PM

    David,

    You’re probably not aware, but I have been going back and forth with Deirdre Imus on the vaccine issue.

    I noticed that when you were on with Robert MacNeil in April 2011, that you said, “There is a small subset of children who may be particularly vulnerable to vaccines. An in their cases, having the vaccines, or particular vaccines, particularly in certain kinds of situations, vaccinations for those children actually may be the environmental factor that tipped them over the edge of autism.”

    Can you expand on that and tell me what are some of the characteristics of those vulnerable children are?

    I have to assume that the M.I.N.D. Institute has researched this heavily.

    Barry

    ___

    Many others have explained the vulnerable children situation. You can visit our website to see some studies we have found that all show the same trend. http://focusautisminc.org/resources/new-zealand-and-germany-studies/

    The CDC refuses to do studies on the vaccinated and unvaccinated. If you do have any other studies, I’d be interested to see them. My battle is more than autism.

    • Sullivan (Matt Carey) March 7, 2013 at 02:11 #

      “My battle is more than autism.”

      I don’t have a battle going on with this discussion. And I don’t have the luxury of spending a lot of time on non-autism subjects. Vaccines take away too much time as it is from more important topics.

      thank you for providing the information you used to cite Prof. Amaral. Consider your two comments above:

      “Autism Speaks knows that a certain subset of children are vulnerable to vaccines, David Amaral has said the same thing.”

      and

      “There is a small subset of children who may be particularly vulnerable to vaccines. An in their cases, having the vaccines, or particular vaccines, particularly in certain kinds of situations, vaccinations for those children actually may be the environmental factor that tipped them over the edge of autism.”

      The major difference in your two statements lies in the use of “may” by Prof. Amaral used it in both sentences of the quote. Most readers would take the first statment to read that “Amaral knows there is a subset” where his statement is actually, “There may be a subset”. Given his position as a researcher, it is very important to be precise in reflecting what he has and has not said.

      Your website lists a number of studies (and I use the term loosely) relying on surveys of members of vaccine-refusing organizations. For example, your NVIC study sent the surveys out to it’s own membership. A pretty significant source of bias.

      ” If you do have any other studies, I’d be interested to see them.”

      Have you read the NVIC survey paper? It cites a number of studies with various results. So, you should have other studies already. Like the self-styled “National Vaccine Information Center”, you are presenting, and apparently only aware of, some weak studies which support your ideas.

      Using that study as an example–

      Did you check out the poster the author presented https://cdc.confex.com/cdc/nic2004/recordingredirect.cgi/id/1475

      Nonvaccinated kids were much more likely to get the measles. Obvious, but strangely contended by some groups. Or, in other words, the NVIC funded a study which shows vaccines work.

      Back to the paper, I don’t use the term “antivaccine” often, but the paper does “We collaborated with the NVIC, which has many members allied with the antivaccine movement.” More important are the quantified differences between the populations–factors like smoking behavior, breastfeeding, age of children, and more point to biases. The authors note and can’t quantify the biases in the attitudes of the parents surveyed. Consider this statement in their conclusion:

      These data are limited by potential biases inherent in the population studied, and findings need to be replicated in a more representative group before inferences can be drawn.

      But that’s not the spirit you seem to be using on your website.

      I notice your recent blog post. It has many of the old critiques of the CDC. But, let me focus on this one sentence:

      “After thimerosal was taken out of most vaccines, the CDC allowed pharmaceuticals to export the mercury- laden drugs to developing countries. ”

      Perhaps with your interest in improving the lives of those in Africa, you could see fit to support improving the cold-chain infrastructure to allow preservative free vaccines? Consider Bill Gates. His org is working on this topic. He’s going to have another lasting legacy, if some people and groups don’t screw things up. Assisting in the eradication of polio. Rotary clubs are also involved and have donated $75M to the cause. I am glad to have offered some small help.

      If Gates and Rotary succeed, they will reduce the number of vaccines given worldwide. Surely that is an attractive proposition for you.

      If my grandchildren don’t see Polio like I see smallpox, an eradicated disease, it will be in no small part to those who spread fear of vaccines. The fact that they use my community to creat such fear bothers me a great deal.

  7. Anne March 8, 2013 at 05:40 #

    Barry, I have an adult son with autism. There are a number of difficult issues that autistic people and their families deal with every day, such as education, health care, safety, housing, employment, meeting financial and social needs and so on. I don’t like the idea of autism organizations being controlled by people who are focused solely on vaccines and who don’t have any interest in addressing the day to day needs of autistic people. If you want to use your considerable resources to to fight a battle against vaccines that’s up to you, but clearly you don’t have a focus on autism and therefore shouldn’t be trying to control the agenda of autism organizations. It’s a shame that you don’t want to be an ally of autistic people; you could do so much good if you wanted to.

    • Lawrence March 8, 2013 at 11:10 #

      @Anne – but the ant-vaccine groups do focus on things other than vaccines….they focus on giving their kids Bleach (MMS), performing chemical castrations (giving them Lupron), and subjecting them to industrial chelation therapies…..yeap, really contributing to the health and well-being of autistics there (more crazy in one place than I’ve seen in a long, long time).

  8. Barry Segal March 11, 2013 at 14:40 #

    Anne- When I started philanthropy, I read that Bill Gates said that people should find their focus in philanthropy and not be all over the lot. The Segal Family Foundation in Sub-Sahara Africa does many things, but tries to focus on planned parenthood. In Autism, we would like to prevent children from needlessly regressing. Other people can deal with the many problems in the community. Focus Autism is a small operation and except that we don’t want Autism Speaks to ignore the vaccine issue. We don’t try to control other organizations. We feel strongly that tinkering with the immune systems has created many problems, including “subtle damage” and as time goes on the problems will expand exponentially.

    • Sullivan (Matt Carey) March 11, 2013 at 17:29 #

      Mr. Segal,

      I forgot in my previous comment that groups have moved somewhat in the direction I suggested. They are taking the paradoxical view of “there are a number of epidemics” *and* it’s “subtle damage”.

      The “subtle damage” type arguments have grown as it became clear that the previous ideas were testable and tested. As the data came in that MMR and thimerosal do not raise the risk of autism, do not cause epidemics, groups have moved to these untestable and vague discusssions.

      By the way, “tinkering with the immune system has created many problems” reads as a plausibly deniable way of saying “we are against vaccines”. These arguments go around and around, so I try to avoid them. But, there are no vaccines which do not interact wih the immune system (or “tinker” as you put it). But you never said, “I’m against vaccines” either.

      Frankly, I think Claire Dwoskin at least gets credit for saying what she believes. Calling vaccines a “Holocaust of poison” makes it clear. When people say, “I’m pro safe vaccine” but refuse to give an example of a safe vaccine, or create a definition that makes all vaccines unsafe, well, it’s pretty clear to all readers what is going on.

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