A NEW BLOG, BUT THE SAME OLD QUESTIONS
Although I may address our family's background in the autism debate in a later post, today is devoted to this morning's edition of Meet the Press, in which Tim Russert hosted -- in Mr. Russert's words -- "a very civil discussion" between David Kirby, author of Evidence of Harm: Mercury in Vaccines and the Autism Epidemic, and Dr. Harvey Fineberg, President of The Institute of Medicine. What made the presentation so refreshing for some of us was the balance.
Unfortunately we too often see coverage by the national media that presents this issue as being between all scientists and physicians in the world unanimously agreeing that there is no connection on the one side, and a bunch of crazy moms who think there is a connection on the other side. There is never any mention of the scientists and physicians who risk their professional reputations to present evidence supporting the theory and who pioneer treatments to help our children. Those one-sided stories are invariably followed by advertisements for pharmaceutical companies. Of course, just about any story on a national news program has a good chance of being followed up by a pharmaceutical ad considering how we can no longer turn on the television without being told to ask our doctors if [insert name] is right for us. The inherent conflict of interest in the national media covering this story is self-evident. To be sure, there have been a few pockets of media that have been more sympathetic; Don Imus and Montel Williams come to mind. But with the exception of some very fair stories by Sharyl Atkinson on the CBS Evening News, the major news operations have pretended that the science only supports one side. Today, Mr. Russert helped NBC News regain some of the credibility it lost as the result of -- to put it politely -- sloppy reporting by its "science" correspondent. The discussion on Meet the Press included credible and well-spoken representatives from both sides of the issue, who were both given an opportunity to state their positions. (One can quibble with the opportunity being a little unequal, but the inequity had more to do with Dr. Fineberg's drawn-out delivery than with any impartiality on Mr. Russert's part.)
Dr. Fineberg made some statements that need to be examined because they raise more questions than were answered. (In fact, the questions are the same ones we keep asking in the hope that someday we may actually get an answer.) First, Dr. Fineberg admitted that no one can know with certainty how much of the marked increase in autistic disorders we have seen in recent years is due to differences in diagnostic standards and how much is due to increased exposure to environmental insults. That is something folks who believe there is a link must also admit -- that we cannot not know with certainty. Certainty can only come when we have learned a lot more about the effects of thimerosal on the neurological development of susceptible children. Even though we cannot know something with certainty does not mean, however, that our suspicions are unreasonable. Common sense tells us that the astronomical difference in the old numbers and new numbers cannot be completely explained by saying we know a lot more about it all now. Personal observations may not be scientific, but they count for something. Even before my son was diagnosed or started showing autistic tendencies, I observed how many more children seemed "different." To be sure, there are autistic adults who grew up before the changes to the vaccine schedule greatly increased the level of exposure to kids. But casual observation does not reveal the same percentages of autistic adults as there are children, especially when one considers the severity of symptoms we are seeing in young children. Unfortunately, there does not seem to be any good means of getting an accurate number for autistic adults by which we can compare the different generations.
As could be expected, this morning's discussion addressed what many of us believe to be the greatest weakness in the 2004 IOM report: its complete reliance on epidemiological reports, and its rejection of any biological studies. Epidemiology serves a useful purpose in examining the issue, and it can provide clues. Population studies, however, cannot be the sole determinant of the question because they cannot fully account for genetic predisposition, and they are too subject to preordained results. I liken epidemiological studies to forensic accounting because changing the input parameters changes the results. We can't have a real answer without clinical, biological, and animal studies. That's why I nearly fell out of my chair when Dr. Fineberg, at a fairly early point in the discussion, stated:
... When you're dealing with a problem as complex as autism, Tim, you have to look at it from many different points of view and assemble evidence from many different vantage points. Biological evidence in humans and in animals, toxicologic evidence, how does the body deal with toxins, and evidence looking at the actual experience in populations.
Well said, Dr. Fineberg. So why did the IOM rely solely on epidemiological reports? The deficiencies in those reports have been well covered elsewhere. In trying to refute criticisms of the five studies on which the IOM relied, Dr. Fineberg ignored most of the objections and instead focused on the one criticism for which he had a pithy response:
When the letter you read states that these five studies were not replicated, I can't help but think that each one of them has been replicated four times. We have now a growing body of evidence, while imperfect, altogether convincing and all reaching the same conclusion, even though they vary in their methods and in their approaches. And that conclusion was no association between the receipt of vaccines containing thimerosal and the development of autism.
How can a study replicate another study when it varies in its method and approach? Why is the approach even valid when -- as could be said of the much-debated Danish studies -- the researchers looked at two completely different groups to measure the differences in vaccines with and without thimerosal? And why should we not consider the funding of the studies (i.e., the regulatory agencies who devised the vaccine schedules and the pharmaceutical companies who manufacture vaccines)?
Late in the conversation, David Kirby tried to return the debate back to the non-epidemiological evidence that seems to preponderate in favor of a link between thimerosal and the development of autism in susceptible children, and he posed a challenge to the IOM:
MR. KIRBY: ... These are the types of things that I think need to be researched further. Yes, we need to look at the epidemiology. There's a whole lot of new biology. This has all been published. None of the biology was published at the time of the IOM hearing. It has since been published, and I actually wonder if the IOM would consider reconvening a new committee or a new hearing to consider the evidence that's come out in the year and a half since the last report.
MR. RUSSERT: Would you?
DR. FINEBERG: Tim, Mr. Kirby's description about the certitude of this evidence, I think, exceeds the actual balance of evidence that is produced when you look at the totality. It's true that mercury is handled differently in the body when it's in the form of so-called ethyl mercury, which is in vaccines, and methyl mercury, which was actually the form, which was -- on which the standards of exposure were based. That's the type found in fish, as has been mentioned. But when you look back at the studies of actual poisonings of children with large amounts of methyl mercury and ethyl mercury, most toxicologists believe that the ethyl form of the mercury is less toxic than the methyl form -- less toxic to the nervous system. And that's based on many experiences with poisoning by these different forms of mercury.
Had Dr. Fineberg been testifying on a witness stand, the examining lawyer would have immediately turned to the judge and objected to the non-responsiveness of the answer, after which the judge would have turned to Dr. Fineberg and sternly warned the witness to simply answer the question, after which he could add in his own explanatory comments. But this conversation was not being held in a court, and Dr. Fineberg was free to evade the question. In doing so, Dr. Fineberg chose to rely on a mantra intoned repeatedly by the pro-thimerosal crowd that has been shown to be false: i.e., the myth that ethylmercury is not as dangerous as methylmercury. The recent Burbacher primate studies demonstrated that a normal primate processes ethylmercury out of the body more rapidly than it does methylmercury. The problem is that the children who have been affected by thimerosal are not "normal." (As the study by Jill James shows, some children are deficient in glutathione, an enzyme that enable the body to process toxic metals from the body.) The Burbacher primate study further indicates that ethylmercury, if it is not processed out of the body, actually is capable of greater harm than methylmercury.
Unfortunately, inconsistency and inaccuracies are what we have come to expect from the people who are supposed to be protecting our children. The following exchange addressed the IOM's recommendation (and it was only a recommendation) of several years ago to remove thimerosal:
MR. RUSSERT: Why was thimerosal then taken out of the vaccination?
DR. FINEBERG: There's no question that mercury is a neurotoxin. And if there were ways, which there are, to protect vaccines without using mercury-containing substances, it was prudent to remove it, not because there was evidence that it caused autism or even definitive evidence that the amounts in those vaccines caused any neuro problems, but because it was an added measure of precaution that was sensible and correct. And I might add that the latest vaccines that contained any thimerosal as a preservative, with the exception of some flu vaccines, were completed in 2001 and outdated in 2003. So anyone watching this program, any parent can be confident that when they take their child to the pediatrician to be immunized this year, they will receive vaccines without thimerosal as a preservative.
Dr. Fineberg is, of course, right that mercury is a neurotoxin, and that safe alternatives to thimerosal exist. Unfortunately, Dr. Fineberg inaccurately reassured America that thimerosal is no longer present in vaccines (a bit of misinformation that Mr. Russert unfortunately repeated at the end of the program). First, and most obviously, thimerosal is still used in most flu vaccines -- vaccines that the CDC strongly recommends be administered to the youngest of infants and pregnant women. Second, thimerosal is still used in the manufacturing process of many vaccines. Although efforts are made to filter the thimerosal out before the vaccine is shipped out, the finished product still contains "trace" amounts of mercury. Indeed, there have been some indications that some manufacturers are more proficient than others in removing the thimerosal. But even if there are only "trace" amounts, the fact remains that thimerosal is still present, and there has never been any real safety study to show that thimerosal is safe at any level for a child that has a genetic inability to excrete mercury. Children are still at risk.
To David Kirby, I extend the thanks of a parent for, once again, being the articulate voice of children who are unable to speak for themselves. Thank you especially for saying that the parents -- the ones fighting this war on the front lines -- need to be listened to.
Tim Russert, you were not perfect. You could have asked more follow-up questions when Dr. Fineberg evaded the issues, and you repeated the misinformation about the supposed lack of thimerosal in current vaccines. Nevertheless, you were refreshingly fair and, unlike so many in the national press, you treated our opinions with respect. Thank you.
Dr. Fineberg, you were obviously prepared, and you have my thanks for showing up and listening to the questions. Now, if we can just get a few answers . . .