Tuesday, March 11, 2008

Processing New Information

It is with great interest that I have been following the events relating to HHS conceding the claim brought before the VICP by the parents of 9-year-old Hannah Poling.
I am a strong proponent of adhering to truth and utilizing appropriate lines of logic and reasoning to arrive at my understanding of the truth. I have stated publicly and openly for quite some time that scientific data do not support the theory that vaccines nor the vaccine preservative Thimerosal cause autism. I still adhere to that statement. I also have supported the position that one must change one's position as new evidence comes to light.
What has occurred with the Poling case (I hate to refer to it as a "case". Hannah Poling is a 9-year old girl who is a loved, valued person and deserves individual respect as a whole person without regard to what caused her condition, how that condition has manifested itself, or how that cause has been contested in any venue. But her suit against HHS does, in fact, constitute a "case") is that a legal hurdle has been presented and overcome. The VICP did, in fact, deem that the Polings had enough evidence to warrant their claim that Hannah suffered physical harm from her vaccinations at around 18 months.
I do not think that Hannah Poling flips a true/false switch on the statement that "vaccines cause autism", but I am now more likely to consider the merits of data that is presented that includes the role of mitochondrial dysfunction as an explanatory factor in the onset of autism, and furthermore that mitochondrial dysfunction could correlate to vaccinations. In other words, I am willing and able to consider new information and adapt my understanding of the scientific body of evidence as a result. This is not a direct result of the concession, but instead is a result of the focus that the concession has brought on this emerging area of research and my initial reaction to the quality of the data.
Having said all that, and with apologies since my time to complete this post is short, I have some interesting questions/issues with regard to this issue in general and with regard to Dr. Poling's post to AoA today specifically:

- I find it fascinating that a paper that was co-authored by Dr. Poling was actually used as a supporting document in the case. Is this not a conflict of interest? Is it possible to factor in the existence of a potential large settlement/award from VICP as a COI for Dr. Poling while at the same time not including the other authors in any implication of bias?

- If you read the post by Dr. Poling on AoA, you will see that he clearly avoids making a statement regarding thimerosal/autism causation that he could be questioned on. In other words, he offered an implication while avoiding a "mine-able" quote. Observe:

5. Thimerosal—On or Off the Table?I don’t want to dwell on mercury, as this theory is not why HHS conceded Hannah’s case (imo)....
My opinion is that mercury is a potent neurotoxin. Therefore, don’t inject it into kids! Interestingly, basic research studies have shown that Thimerosal toxicity occurs through mitochondrial pathways.
Is this statement a way to avoid making his stance debatable while at the same time influencing the reader to deduce that he does consider thimerosal a causative agent? Or is he simply adhering to the language of science which precludes him from making an overly strong statement in the absence of compelling evidence?

- Dr. Poling, at the end of the post, discloses numerous COI's. None of these concern me or have any effect on my opinion of his acumen as a neurologist or researcher. Can people like JB Handley say the same thing? Can all the members of EOHarm list and organizations like TACA, parents such as Jenny McCarthy and Lenny Schafer, author/journalists such as David Kirby, in general people who have backed their claims of government conspiracy over and over and over for years simply wave their hand and ignore the declared COI's simply because Dr. Poling's VICP-related efforts support their position instead of contesting it? Anyone who has observed the debate over the years will acknowledge that a primary Talking Point of the supporters of the mercury/autism theory is that a government coverup is involved. Just two or three days ago Jenny McCarthy put out a call to parents to blitz the White House with calls for Julie Gerberding's (of the CDC) resignation. But what, then does that same group make of these statements from Dr. Poling and the editor of AoA?:

-"He also would like to declare his conflicts of interest. First of all, he is the father of Hannah Poling. Dr. Poling has also accepted consultancy or speakers honoraria from Pfizer, Eisai, Ortho-McNeil, Biogen, Teva, Immunex (now Amgen), and Allergan.)"

-"Dr. Shoffner furthermore advocates, along with us, that vaccination is important even for kids with mitochondrial dysfunction. "


- I thought for a while that I was the only parent following this discussion who was thinking to myself, "This is all very valuable in terms of adding to the scientific body of knowledge, but is anybody thinking about/talking about autism in the blogosphere aside from this topic?" Until I saw my thoughts echoed by Kristina. And then I looked at the Autism Hub in general. What I saw was a huge range of people and opinions covering all kinds of topics including, but not limited to, discussion of the Poling case. Let it be known that I sincerely hope Hannah Poling is an Autism Hub contributor someday. She would fit right in over here. Not so much at AoA, where autistic people dare not tread. I wish Dr. Poling would have considered that issue when deciding where to post his response to Dr. Novella today.

6 comments:

Another Autism Mom said...

Hi Steve, you expressed my thoughts exactly. And just to make your point more valid, there are a few comments on AoA accusing Dr. Novella of being a Pharma shill. How predictable.

I'm not against the re-evaluation of the vaccination schedule, and the pre-screening of children who may have imature immune systems. In this regard I consider the Poling case to be an important breakthrough. Still, I'm not passionate about this issue because I don't believe this to be a primary cause of autism. Besides, I'm more interested in research that will improve brain functioning on individuals that already are autistic, since witholding vaccines won't stop the majority of autism cases. We have millions of autistic people all over the world, and their families, that want to improve their communication and learning skills. Will winning a huge sum of money from the government improve their child's autism? Even if they use the money exclusively to pay for ABA or supplements, that won't make the child become more high functioning than she would had the parents not received the settlement. I'd rather fight for the money to be used wisely in advancing research on medical and educational tools to improve my child's quality of live.

Club 166 said...

I've got little problem with what Jon Poling has said "after the fact", when he has not been quite as much in the spotlight as he was at the press conference, when he appeared to be reading from an anti-vaccination script.

I've got big problems with the way the Polings appear to have formed a symbiotic relationship with the anti-vax movement. Perhaps it's for the money, perhaps it's for social redemption (It's not our fault, the government damaged our daughter). They've conveniently downplayed the real disease that there daughter has (mitochondrial disease), and ridden the "vaccines destroyed our normal daughter" train all the way to the bank.

And the post hoc insertion of "we're not anti-vaccine" statements don't change the fact that probably thousands (if not tens of thousands) of parents won't vaccinate their kids because of this.

Joe

Schwartz said...

Steve,

I also made note of the COI after I found out Dr. Poling was the father (after reading the study). I only have the excerpt of the study posted by LBRB, so I don't know if there is a COI section elsewhere or not.

Clearly Dr. Poling has a COI and as such, one must scrutize the study results very carefully. However, this was a case study, co-authored by the primary physician. Case studies are far easier to evaluate for accuracy since most of the information is laid bare for all to see and it doesn't involve statistics or assumptions applied to large populations. As such, I haven't seen any complaints about the quality of the study... yet. Additinally submiting it to the VICP case is perfectly valid, because obviously there is no attempt to hide the COI there, and he could easily be questionned along with the co-author about the study. Again, the case details would have been laid out for anyone to evaluate had a trial actually taken place.

WRT to his comments on Thimerosal, I think his position and statement during the press conference were pretty clear:

"This leads me to discuss the two potential theories of how Hannah's vaccination may have caused the injury. The first Theory is that Hannah had an inborn genetic problem. Following vaccination, that illness produced stress leading to permanent brain injury as manifested by Autism and seizures. This succeptibility, i.e. mitochondrial disfunction may never have manifested as disease if not for the vaccinations Hannah received in July 2000. The second theory which Mr. Shoemaker and colleagues were preparing to present, was that the preservative Thimerosal which contains mercury directly caused mitochondrial disfunciton. There is extensive literature that Thimerosal and mercury do cause mitochondrial disfunction so this is not a... this is certainly not a leap of faith. This mitochondrial disfunction resulted in brain injury as manifested by regressive encepalopathy, autism, and seizures. Although both theories have merit and deserve further consideration, there is also extensive literature on mercury toxicity."

All of his statements are consistent so far. From his own statements, he believes there are two plausible theories that merit investigation. One of these theories involves Thimerosal as a causative agent. I think his hesitancy to jump straight into the Thimerosal debate head on, is because his primary objective is to raise awareness of issues that need addressing. He is clearly a supporter of vaccination, and I suspect he knows very well that focusing on Thimerosal will distract the discussion from other important things and won't necessarily bring the outcome he desires.

I personally believe that the Polings have gone public to accomplish the following:
1) To help others in a similar situation find treatments or avenues of investigation that might help them
2) To make the public aware of the lack of general support and understanding for parents of Autistic children (this was pretty clear to me from T. Poling's statements in the press conference)
3) To promote areas of research he thinks hold promise for helping a subset of the Autistic community or even prevent Autistic regression in a percentage of children.

"This is all very valuable in terms of adding to the scientific body of knowledge, but is anybody thinking about/talking about autism in the blogosphere aside from this topic?"

I have seen a lot of discussion in both email and newsgroups about potential diagnosis and treatment of Mito Disfunction in Autistic patients. Granted there is a lot of backslapping and spin going on that doesn't directly help anyone. But this whole case has opened up a lot of questions, and has also pointed people to a swath of data/studies that were previously underreported IMO. Reading up on Mito disfunction, it has become clear to me, that it is often misdiagnosed and clearly misunderstood by physicians as well as the general public. If indeed there is a significant percentage of Autistic patients suffering from this (even 7% is significant) then awareness and diagnosis can easily lead to improved health and quality of life as it did for Hannah.

It's certainly no magic bullet. But I doubt there is one anyways.

Camille said...

I think Dr. Poling's big COI is that he appears to have drank the DAN! Kool-Aid, not that he's in the pay of Big Pharma. Who knows how his association with a group that is practically psychotically devoted to the idea that vaccines above all else cause autism has affected his ability to see his daughter straight and report what happened to her accurately? Yes, there are objective measurements of her health, etc, but that's not all that the HHS was going on, they were going on reports from the parents of a daughter healthy before and destroyed afterwards... and then recovered with ABA and a mito cocktail and no mention of the chelation...ooops, that mommy described that the child had at about age 3. Three years old!!???

And I agree with Club 166, you can say "oh isn't this interesting and blah blah and more research and blah blah" all you want, there's a good chance that the fat mouths of certain antivaxers will lead to the deaths and maimings of many children before the parents decide that maybe a live child is better than a dead one, and that the autism anti-vaccine hysteria was cooked up by trial lawyers and self-centered parents who want to avoid any possibility of looking like it was their "fault" because of their genes.

I don't trust the Polings, they seem to me to be talking out of both sides of their mouths. But I am grateful that they have said they think vaccines are important and necessary (while they are talking out of that side of that one side of their mouths). It makes them less popular with the more psychotic branch of the antivaxers.

Anonymous said...

Back in the day Dr. Poling was even thinking of becoming a DAN doctor (see link below) but apparently he changed his mind and is still working as a regular neurologist.

http://groups.yahoo.com/group/RecoveredKids/message/4721

Steve D said...

I apologize to my several commenters for not being more responsive on this. The last few days have been hectic and I just haven't had the time to respond.

To all - Look, I have made no secret how I feel about DAN! (still do), how I stand on the position of the validity of the Mercury/autism causation hypothesis (no merit in my opinion), and that certain rhetoric can be very harmful to the public in several ways (bad pub for autistics, negative impact on vaccination rates).
Having said all that, can I ask for a "time out" so I can try to determine the merit of the mito/autism connection that played out in this case? I'm not a fan of the Hannah Poling's parents for a variety of reasons, but I have no real reason to indict Dr. Poling's findings at this time. In truth, they align with my understanding of mito- dysfunction, as limited as that may be.
I am certainly factoring in bias, as I believe it must be present in its two strongest forms (The "save my daughter" form and the "millions of dollars" form). These are powerful motivators. But other researchers were involved, and they weren't shooting from the hip (such as the Geiers and their testosterone-related theories). It seems to me that mitochondrial dysfunction and autism may be related in certain cases. I'd like to learn more about this case, from top to bottom.
Let me make clear. The VICP case, in my opinion, is about the money and the false "vindication". What I am interested in is what may benefit the lives of autistic people in any way.