Thursday, August 15, 2013

A Snapshot of the Deep Pockets of the Anti-Vaccine Movement

Research is expensive. Lab techs, study coordinators, grad students and post-docs have their salaries (often a pittance compared to the importance of their work and the skills required); primary investigators (PIs) have theirs. Then there are the costs for materials - drugs or other substances under investigation, reagents, etc., as needed. Statisticians, equipment. The expenditures add up.

And PIs spend a considerable amount of their time just seeking out grants to support their research. Many rely heavily on government entities like the National Institutes of Health, one of the largest funders of research in the United States. Some research funds come from industry sources, the results of which need somewhat greater levels of attention to suss out the valid results from the bias. Others find support from private donors and foundations.

This latter source is the bread and butter of cranks and pseudoscientists (well, with the addition of the NIH's National Center for Complementary and Alternative Medicine, but that's a whole other post). For example, Mark Geier (who has had his various medical licenses stripped for unethical conduct) and his son, David (who has no medical licenses and was found by the Maryland Board of Physicians to have practiced medicine without a license), essentially fund themselves through their non-profit corporations CoMeD, Inc. and Institute of Chronic Illnesses, Inc. Other anti-vaccine researchers, perhaps lacking their own wealth, rely on other individuals and families devoted to the "vaccines cause autism" myth who happen to have significant assets to fund their dubious research.

Such is the case with a new study by Christopher Shaw and Lucija Tomljenovic, titled Administration of aluminium to neonatal mice in vaccine-relevant amounts is associated with adverse long term neurological outcomes (back in December 2011, Orac pointed out the flaws of the study). This study received significant funding from The Dwoskin Family Foundation and the Katlyn Fox Foundation, both of which have funded previous studies by one or both of this duo.

The Dwoskin Family Foundation

The Dwoskin Family Foundation is a philanthropic vehicle for Albert and Lisa Claire Dwoskin. They established it as a 501(c)3 non-profit foundation in 2001. The sole contributions to the foundation are from the Dwoskins themselves (not unusual for a family foundation) to the tune of $600,000 in 2010 and $750,000 in 2011. In addition, a significant portion of the foundation's assets are held in off-shore accounts and cash investments. The foundation's 990 form for 2011 (the latest available via GuideStar.com, free registration and login required to view) lists net assets at $3.5 million. Needless to say, they have a lot of purchase power, as it were.

Claire Dwoskin is a board member of the anti-vaccine group National Vaccination Information Center. Her husband, Albert, is president and CEO of A.J. Dwoskin & Associates, Inc. Through their foundation, they funded The Greater Good Movie, giving $25,000 to the project in 2010. Two years ago, they made two donations to the American Foundation for University of British Columbia, academic home to Shaw and Tomljenovic. One contribution, for $10,000, was just for "general expenses". The more significant donation was for lab costs for the "Aluminum Toxicity Project", for which they donated $125,000. This is in addition to approximately $200,000 for NVIC.

In 2011, the Dwoskins also underwrote the anti-vaccine "safety" conference in Jamaica. As Matt Carey notes, the venue was not exactly a frugal choice. The family, along with several other organizations, paid out a fair bit of change to cover the costs of the conference. Speakers included the aforementioned Christopher Shaw and Lucija Tomljenovic, as well as several individuals that have been described as quacks or cranks: Dr. Russell Blaylock, Dr. Richard Deth, founder of the antivaccine NVIC, Barbara Loe Fisher, and the disgraced Andrew Wakefield.

And, if their financial support of anti-vaccine individuals and organizations doesn't illustrate their bias that vaccines are, unquestionably, bad, this 2010 quote from Claire Dwoskin in response to John Stossel's segment on vaccines is rather telling:
I just saw the show and am so sorry to hear that other than what Chris had to say, not a word of truth was spoken by Stossel or Offitt. What a travesty – I hope someday he will recognize the error of his ways and realize the fear and damage that he is contributing to by allowing falsehoods to rule the air. At least his daughter is alive, smiling, educated and enjoying life. That cannot be said for the hundreds of thousands of vaccine injured children in the US. What his daughter went through is NOTHING compared to what the families of autistic children go through every day of their lives. No disease can match this record of human devastation. Vaccines are a holocaust of poison on our children’s brains and immune systems. Shame on you all.
She accuses Dr. Offit of lying and says that no disease matches the "devastation" of autism. Mrs. Dwoskin apparently has not looked into the history of infectious diseases very much, at all. And what is it with anti-vaccine activists comparing vaccines to the Holocaust? How offensive is it to the survivors and their families and to individuals who have autism, to compare autism and vaccination to this:

Bodies in a mass grave, from yadvashem.org
The Katlyn Fox Foundation

Although it lists itself on its web site as a not-for-profit charitable orgnization, the foundation is not registered with the Canada Revenue Agency. Since they are not registered as a charity, unlike the Dwoskin Family Foundation, their financial filings are not available. In addition to the latest article from Shaw and Tomljenovic, the Katlyn Fox Foundation has been supporting them since at least 2011.

Although I had difficulty finding why the Dwoskins got involved in the anti-vaccine movement, the Katlyn Fox Foundation makes it quite clear why they are anti-vaccine activists. From their "About" page:
On the afternoon of August 16th 2001, our precious little girl Katlyn passed away in her sleep. She was only 22 months old. After conversations with various medical professionals and through extensive personal research we believe that Katlyn passed away due to complications from vaccines.
I won't talk about their account, as I don't have any of the details. My heart does go out to them for the loss of their daughter. No parent should have to go through anything like that. I do think that their crusade against vaccines is misplaced, though, and how far they have gone down the anti-vaccine rabbit hole is evident from the posts on the foundation's site.

The foundation reproduces stories from such dubious sources as Natural News, NVIC, Suzanne Humphries and similar folk with established histories of playing fast and free with reality. Despite their mission to "provide parents with the best possible information about vaccines, so that they can make informed decisions on whether or not vaccines are suitable for their children", they instead promote myths and misinformation.

Follow the Money

Anti-vaccine activists make much of real or imagined conflicts of interest in studies examining the safety or efficacy of vaccines. Any study that receives funding from, well, just about any source that does not tout the anti-vaccine line is automatically written off as completely worthless and hopelessly biased in favor of vaccines. Funded or conducted by NIH or CDC? Biased, since the government, in the anti-vaccine mindset, is in bed with Big PharmaTM. Funded by a university? If the results favor vaccines, then it is biased, because the university, at some point in time, received funding from Big PharmaTM or the researchers have some other tenuous connection, clearly. If any financial link can possibly be found between the researchers and a pharmaceutical company, even if it's one of the researcher's brother's roommate's cousin's father's next-door-neighbor, that is sufficient reason to disregard anything the researchers have to say. The methods don't matter. The data doesn't matter.

But what happens if we apply their own reasoning to studies that they support? What about this latest study by Shaw and Tomljenovic? Well, it was funded by two organizations with well-established biases to finding fault with vaccines. If the source of funding is enough to hopelessly bias the results, then no matter the quality of the work done by Shaw and Tomljenovic, we should expect the results of their research to find vaccines or a vaccine component unsafe, that it causes some sort of injury.

It just so happens that the studies performed by Shaw and Tomljenovic that have been funded by the Dwoskin Family Foundation and the Katlyn Fox Foundation, including this most recent one, have, indeed, found that vaccines or their components cause injury and are likely unsafe.

The anti-vaccine approach to viewing conflicts of interest is not what I would call particularly productive or legitimate. While looking at the source of funding can be a flag that one should pay a bit closer attention to the details, it is not cause, in itself, to write off a study. Examine the claims more closely and pay attention to the methods used, certainly, but do not simply dismiss the study out of hand based only who funded it.

So What's the Point?

If the source of funding doesn't matter as much as anti-vaccine activists like to think it does, then you might be wondering what was the point of discussing the wealth and beliefs of the Dwoskins and the Katlyn Fox Foundation? It's two-fold, really.

First, while I disagree with the more extreme anti-vaccine activists in how much power to attribute to funding sources when it comes to evaluating the quality and conclusions of a study, it is important to understand the motivations of the funding source. If a study is funded by Merck, I will take its results with a bit of a grain of salt, especially if the results favor a Merck product. Likewise, if a study is funded by the Dwoskin Family Foundation, the Katlyn Fox Foundation or a similar group (e..g, NVIC), and the results favor the anti-vaccine stance, I won't just accept the results at face value. Knowing the motivations of the funding organization can serve as a signal to look for potential bias in the results. When a researcher appears to rely on funding from an organization or group with a very clear mission, they might design their study in such a way that they will find whatever results are favorable to their patron. The stronger the funder's convictions, the more likely it becomes a potential source of bias. It's not a sure thing, and it certainly is not a black-or-white metric, but it is a factor to consider and understand.

Second, I wanted to show that there are very, very wealthy individuals and groups behind the anti-vaccine movement. They have the resources to gin up studies that appear to support them, fund PR campaigns to spread their misinformation and lobbying legislators. I only highlighted two. There are plenty of others, like Barry Segal, Gary Kampothecras, Robert F. Kennedy Jr., businessman and founder of Generation Rescue J.B. Handley.

I may go into the actual science of the Shaw and Tomljenovic study later, if I have time (or let some actual scientists chime in on it), but the financial aspects of the anti-vaccine movement are what intrigued me. There is a lot of money there, and those of us who support vaccination based on the scientific evidence would be well-advised to keep that in mind. A lot of us don't have those resources (I certainly don't) and do our best with the limited resources we have.

5 comments:

  1. Many vaccines are probably beneficial for most recipients. Some vaccines are definitely harmful for some people. There have been far too many serious adverse reactions and deaths because of the HPV vaccine and much of the work done by Lucija and Chris focus on this. It only backs up what is actually happening to our children. Our daughter had an immediate reaction to the HPV vaccine, deteriorated daily over several weeks until she went into a coma-like sleep for 13 weeks. She has missed 2 years of school and life. The manufacturers actually state that their vaccine is not suitable for everybody, that their are contraindications and side effects which can be serious. In the UK there have been 7232 Yellow Card reports and acceptance that 1200 reports are considered serious and their have been 4 deaths. Yet the health authorities and pro-vaccine lobby tell parents it is safe!!!!

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  2. Mr. Hinks: Some vaccines are definitely harmful for some people.

    Please post PubMed indexed studies by researchers not funded by either the Dwoskin or Fox families that show the relative risks of vaccines versus the diseases.

    There have been far too many serious adverse reactions and deaths because of the HPV vaccine and much of the work done by Lucija and Chris focus on this.

    Please provide a replication and note of those injuries that do not come from those two researchers, nor are financed by the Dwoskin and Fox families.

    Our daughter had an immediate reaction to the HPV vaccine,

    My sincerest condolences for your daughter. If you are in the USA are you going through the NVICP at the present? Is there a case file in VAERS? Our son had a terrible reaction (seizures) to an actual disease before the vaccine was available. I know it is stressful, though at least in the USA there is program for vaccine reactions. Obviously there is nothing for disease reactions, which actually occur more often (unless you have evidence to the contrary).

    In the UK there have been 7232 Yellow Card reports and acceptance that 1200 reports are considered serious and their have been 4 deaths.

    Citation needed. It also needs to show the followup of those cases, because in the USA many of the reports were things like auto accidence, overdose, etc.

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  3. There is just one think I really do not understand yet and would be great if someone would provide some non-fanatic answer.
    In your article, you talk about doubtful funding sources of tha anti-vaccine movement, that supported the studies. Ok. It is understadable that you when you are trying to prrove something, you look for sources to cover your expenses in search for evidences. It works both ways. But for me, there is one difference between the pro-vaccine and anti-vaccine funding.
    If you sell vaccines, you make money of it, so it is good for you to prrove its safe.
    The think I do not understand is why would someone invest energy, money and possibly put own scientific reputation in risk, when there is no profit in the end, just some belief..? I am not favouring either side, I just started to doubt the flawlessness of vaccines after my little daughter got a pretty severe reaction to infanrix hexa and still searching for some non-fanatic answers.
    I have seen many discussions on this topic, most of them pretty flame-like and it makes me a little sad that many parents, that are desperatly searching for some reliable answers are treated as crazy fools...

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  4. @Yenix

    You underestimate the power of belief. Fervently held beliefs can be great motivators to action. Think, for a moment, about those who are most vocal about how bad vaccines are. Typically, they have a story where they had their child vaccinated and after that, they noticed some change. The stories vary. Sometimes its within hours, sometimes days, weeks, months or even years. But invariably, the blame is put on vaccines. As they talk with others who are already invested in the "vaccines as cause" belief, their own are reinforced. They understandably want something to blame, and here is this perfect scapegoat. The reasons to affix blame to vaccines appear to sound: lots of anecdotes, research that, to someone who might not be well-versed in reading scientific studies, look like they are good, quality studies and so on. Finally, an answer. Something to explain why all these bad things happened to them! That is a very powerful motivator. Take that and couple it with the sense of community and emotional support provided by the anti-vaccine movement and the reason to continue pushing and promoting the belief is that much stronger. Take a look at what happens when a parent decides that vaccines maybe weren't the problem at all. They are quickly shunned and ostracized from the community, becoming pariahs. So breaking out can be a very difficult and frightening prospect.

    Then, of course, there are the reasons that have nothing to do with belief alone. Some actually do make money by promoting the anti-vaccine agenda. There are books to be sold, lecture fees to collect, sponsors to take money from, not to mention a small bit of fame and ego-stroking. Some may have "cures" or "treatments" to sell that depend on the anti-vaccine talking points being right. Some are involved in litigation the success of which, again, depends on vaccines being to blame.

    As I wrote above, my point in this post was not to point at the source of funding and say, "This is horribly corrupted and cannot be trusted" as many in the more extreme end of the anti-vaccine movement like to do with pharma-funded studies, but to point out that there are motivations that should be considered when reading a study. The families and organizations providing the money need science that supports and validates their belief that vaccines are bad. The researchers are ensured a steady funding stream if they produce results that their sponsors like. The more varied the funding sources, the less likely there will be bias from the sponsor. Not a guarantee, of course, but better.

    As to how heated many discussions get, I understand. A lot of the sharpest rhetoric comes when the extreme and well-known voices of the anti-vaccine movement crop up and when the same, tired arguments are trotted out. It can be difficult answering the same question countless times over the years, so the response can come across as unduly acerbic. But I find that those who keep their cool, even in the face of blunt responses, and seem willing to actually listen and think about what is said generally earn a measure of respect and more measured replies later on.

    Finally, bear in mind that no one on the pro-vaccine side believes that vaccines are "flawless". That is a trope that is often bandied about by those opposed to vaccines. Anyone on the pro- side will readily tell you that, as with everything in medicine and even life, there are risks. Those risks are small and rare, but they are there. The only ones promoting the illusion of some "perfect, flawless" vaccine are the anti-vaccination activists.

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  5. @Yenix

    Here's a story you might be interested in reading: Leaving the Anti-Vaccine Movement. In particular, check out the third-to-last paragraph.

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