Respectful Insolence

i-e7a12c3d2598161273c9ed31d61fe694-ClassicInsolence.jpgNote: One year ago today, an autistic boy, Abubakar Tariq Nadama, died of a cardiac arrest while undergoing chelation therapy to try to “cure” his autism. Today, because I am on vacation, I have scheduled several of my old posts on the topic to appear.The investigation into his death is ongoing regarding whether to file criminal charges against the doctor, although it irritates the hell out of me that they are arguing over whether Tariq was given the “right” agent when in fact there is no “right” agent for chelation therapy for autism. The boy should never have been getting chelation to “cure” his autism, period.

This is the second in a series that I wrote over the ensuing months that I have scheduled to appear throughout the day today, the first anniversary of Tariq’s death. Stop back later for more:

OK, I surrender.

I tried not to write anything during this last weekend of my vacation, but then I became aware of David Kirby’s CYA response to the tragic death of a boy during chelation therapy for his autism last week:

But even as the grieving immigrant mother makes funeral arrangements for her beloved boy, opponents of the theory that drew the family to America (the theory that mercury triggers autism, and removing it through chelation may improve symptoms) are holding his death up as proof that the idea is bogus. They claim that the use of chelation to treat autism is foolishly dangerous, and should be shut down at once.

Some people have come perilously close to exploiting this tragedy to further their own political or personal agendas. Some blame the boy’s death on his mother, who has been labeled as reckless and “desperate.” Others blame the Pennsylvania doctor — and any autism doctor willing to try chelation (the use of certain chemicals to remove heavy metals from the body) – for the tragedy. Some fault me, for writing a book that dared to include the topic of chelation and autism within its pages.

Kirby’s probably feeling the heat over this death, as well he should. The popularity of his book, Evidence of Harm, and its favorable treatment of the claim (I refuse to dignify it by calling it a “theory” given that scientific theories require a lot of evidence to support them) that mercury from childhood vaccines causes autism, very likely have played a role in the recent popularization of this bogus “treatment” for autism. As for “exploiting this tragedy to further their own political agendas,” Kirby is being rather selective in his criticism. The mercury/autism activists routinely feature autistic children labeled “mercury poisoned” at political rallies to further their agenda. (One could even argue that Kirby’s own attempt to spin this tragedy to deflect criticism of chelation is “exploiting this tragedy to further his own political agenda.”) In any case, when a boy dies during a dubious treatment that almost certainly doesn’t work, of course the incident should be used as an argument to criticize the treatment, no matter how “daring” it was of Kirby to have mentioned it in his book.

Kirby continues:

First of all, only an autopsy will reveal the actual cause of death, and I think it is prudent to wait before jumping to any conclusions about the general safety of chelation and autism. That said, the boy did die while undergoing the procedure, and it’s possible the controversial treatment is what killed him.

Give me a freakin’ break! It’s way more than “possible” that the chelation treatment killed the boy. It’s highly likely. Otherwise healthy five year olds don’t just drop dead of cardiac arrest for no apparent reason, particularly while sitting in a doctor’s office. It happens, but it’s extremely rare. For this boy to have just happened to have droppped dead of a cardiac arrest while he was receiving a therapy that can lower serum calcium and magnesium levels to levels low enough to cause cardiac arrest is one a hell of a coincidence. Unfortunately, the autopsy results may never conclusively show that chelation killed the boy. Electrolyte abnormalities leading to sudden cardiac arrest (the most likely cause of death in this case) can be hard to pin down in an autopsy. If the autopsy fails to find conclusive evidence for this cause of death, it will allow the chelation advocates wiggle room to claim “reasonable doubt” over whether their pet treatment killed the boy.

Worse, Kirby is now trying to blame the scientific community for Abubakar’s death, rather than where the blame should be placed if chelation killed him, at the hands of the doctor who administered the chelation for a condition for which it is not indicated and those who support this quackery. (At least he properly asks the question why this doctor was using intravenous EDTA, rather than other, safer methods.)

He goes on:

Just think, if the government had listened to the very IOM report it commissioned back in 2001, we might know a lot more about chelation and autism than we know today. If clinical trials had gotten underway then, we would know with certainty whether chelation could heal, or kill.

Please. We already know whether chelation can kill. We’ve known it since the 1940’s and 1950’s. Deaths have been rare since the 1960’s, true, mainly due to better cardiac monitoring and more care with infusions, but kidney failure, cardiac complications, and electrolyte deficiencies have not. The correct question is whether chelation can “heal” autism at an acceptable risk-benefit ratio, not the false dichotomy of whether it can “heal or kill.” One has to wonder why Kirby chose to quote the 2001 IOM report and its tepid recommendation that chelation therapy should be studied, rather than the more recent 2004 report. Could it be that the evidence developed in the interim that failed to show a link between mercury exposure and autism led the IOM not even to consider chelation as a viable therapy anymore? (I’ll have to go back to the 2004 report to check on this.) After all, if mercury is not the etiologic cause of autism, then there’s no reason to think that chelation therapy would do any good for it and therefore no reason to waste resources studying it. Even if mercury is involved in the pathogenesis of autism, it’s unlikely that chelation treatments given months or years later would do any good, but in that case at least there would be a reason to consider studying it.

Finally, Kirby says:

If hard scientific proof had been uncovered that chelation was 100-percent worthless in the treatment of autism, no parent or doctor would still be pursuing the therapy today. If evidence had surfaced in clinical trials that children could be harmed or even killed by chelation, no one would be using it today. The doctor in Pennsylvania would have halted chelation therapy long ago, and this poor grieving family would never have crossed the ocean from the UK in pursuit of its false promise.

How reasonable-sounding. How charmingly naïve. (I also have to wonder if Kirby is aware that it’s pretty rare for a clinical study to provide 100% evidence of any conclusion. Medicine deals with probabilities, and those probabilities only very rarely turn out to be 100%.) Kirby clearly doesn’t have much experience with “alternative medicine.” Studies don’t matter to alties, and that goes triple for conditions for which conventional medicine does not yet have highly effective treatments. Study after study showed that Laetrile didn’t help advanced (or even early stage) cancer back in the 1970’s and early 1980’s. Altie practitioners still use it, and patients still seek it. Recent studies have shown that homeopathy does no better than placebo for a variety of conditions, but do you think that homeopaths will stop using it or people stop seeking it? Studies have come out showing that echinicea doesn’t help common colds, but I wouldn’t sell my stock in companies selling the herb if I were you. Study after study have shown that chelation therapy does no better than placebo for coronary and peripheral vascular disease. It’s still being used, and NCCAM has even funded a large study to see if it works, not because of the science so much but because of its popularity. If the NCCAM study fails to show a benefit for chelation over placebo, you can bet that alties will dismiss the study and that chelation will continue to be used for heart disease. If a study ever conclusively shows that chelation does no good for autism, you can further bet that it won’t be believed by the mercury/autism advocates and that chelation will continue. None of this means that we physicians and scientists shouldn’t do the studies, of course. That’s how science progresses and ineffective treatments are slowly weeded out of our medical armamentarium. However, Kirby’s faith that such studies can cause such a rapid halt to the use of dubious treatments is almost touching in its naïveté.

This comment by Kirby, however, is not so touching or naïve:

But what if the opposite were true? What if the “rigorous science” recommended by the IOM had yielded proof that chelation can indeed help some kids — provided that it’s done with the safest agents, at the safest doses, and through the safest routes of administration (not to mention in combination with other therapies)?

Either way, if America had done its scientific homework, as recommended by its top science professors, Abubakar might still be alive today.

In essence, what Kirby seems to be trying to do here is to deflect the blame for Abubakar’s death from chelationists to the scientific community that hasn’t studied chelation therapy for autism. Does he even know how clinical studies work? Even if a large randomized, double-blind study had been organized immediately after the 2001 IOM report, four years would probably not be long enough to write the proposal, get it funded, get it approved by the various IRBs necessary at the multiple centers it would have to be done at, accrue enough patients to have enough statistical power to detect the outcomes studied, and have adequate followup to make hard conclusions, and it certainly wouldn’t have been long enough to document long-term outcomes of therapy! Preliminary results would probably be available now, maybe even more final short term results, but that would be about it. Also, remember that one negative study would likely not be sufficient to convince doctors (much less activists) who believe that chelation is of benefit in autism (although I’m sure one positive study would be more than enough, even though initial positive studies are wrong 1/3 of the time). It would take more than one study to convince. I would also make the prediction that such a randomized, placebo-controlled study would have an accrual problem. Many parents interested in chelation would likely not want to agree to be randomized to the placebo group. Getting them to sign up might be a hard sell. Such a problem would make a gold standard randomized, double-blind, placebo-controlled study even more difficult to do and take longer.

Sadly, it appears that Kirby is more interested in spinning this tragedy to decrease criticism of him and the mercury/autism hypothesis that he’s become so enamored of than in critically looking at the claims that underlie the use of this dubious “therapy” for autism.

This post originally appeared on August 27, 2005 on the old blog.

ADDENDUM: Peter Bowditch weighs in on the death of Abubakar Tariq Nadama. Stand back. He’s really pissed off.

ADDENDUM #2: More information here and here.