One year later: Sadly, it was only a matter of time: An autistic boy dies during chelation therapy

Note: 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, as 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 first 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:

I started my vacation out with a bit of a bummer of a thought. Unfortunately, it looks as though I'm going to close it with an even bigger bummer. I hadn't planned this. My original plan for today was either to take the day off and post nothing at all (the comment spam issue took care of that) or to post something brief, light, and fluffy, maybe doing the same on Saturday and/or Sunday, using a couple of amusing things I witnessed while traveling the Midwest, I would then resume regular topics on Monday when, unfortunately, I have to return to work, do clinic, and be on call.

However, this story, e-mailed to me by more than one person, compelled me to do change my plan:

A 5-year-old autistic boy died Tuesday in a Butler County doctor's office while undergoing an increasingly popular though controversial medical treatment touted by some as a cure for the lifelong neurological and developmental disorder.

Abubakar Tariq Nadama died while receiving chelation therapy, an intravenous injection of a synthetic amino acid that latches onto heavy metals and is then passed in the urine.

State police at Butler are investigating Nadama's death, which occurred at about 10:50 a.m. Tuesday in the office of Dr. Roy Eugene Kerry in Portersville.

Authorities said Kerry's office reported that the child was receiving an IV treatment for lead poisoning when he went into cardiac arrest.

An update to this story can be found here. My heart goes out to these parents, who no doubt thought that they were doing something positive for their child. Unfortunately for Abubakar and them, they found out in the hardest way possible that they were not.

Now, I realize that I'm a couple of days late commenting on this topic. I even wondered whether I have anything left to say that hasn't already been said. Indeed, Prometheus, Kev (1, 2, 3), Autism Diva, and numerous others have already commented ably on the story. Given that I've written before about chelation therapy as used to treat atherosclerotic heart and peripheral vascular disease in adults, how randomized double-blind studies have shown it to be no better a treatment than placebo, and how there is not a single study showing that it decreases the size of atherosclerotic plaques or improves blood flow through diseased vessels, I thought I should add my 2 cents.

Sadly, since learning of chelation therapy being used to "treat" autistic children, I've feared that it was only a matter of time before a child died during therapy, and now it has happened. It was inevitable, given that more and more parents of autistics, desperate to do anything to help their children, are opting for this unproven and ineffective therapy. Unfortunately, they usually do so on the basis of incomplete or erroneous information promoted by various organizations like Generation Rescue, whose literature states quite bluntly that "childhood neurological disorders such as autism, Asperger's, ADHD/ADD, speech delay, sensory integration disorder, and many other developmental delays are all misdiagnoses for mercury poisoning" (which also makes it puzzling why it is being reported that Dr. Kerry was treating the child for "lead poisoning," given that even the thimerosal/autism advocates don't generally argue that lead causes autism). If you accept that premise that mercury exposure during infancy causes autism, then chelation therapy sounds reasonable. However, even if that premise were true, one has to remember that brain damage is usually permanent and it is hard to propose a plausible biological mechanism by which removing mercury months or even years later would improve neuronal function.

The purpose of chelation is to bind ("chelate") heavy metals with a molecule that allows them to be secreted more rapidly in the urine. EDTA is fairly avid at chelating calcium ions, and that was the original rationale for the use of EDTA in "dissolving" calcified atherosclerotic plaques by "leeching" the calcium out of them. Given that children tend to develop electrolyte imbalances more easily than adults and to be more sensitive to them, utilizing a therapy designed to chelate electrolytes is not something to be undertaken lightly in children. What most likely happened in Abubakar's case is that he suffered a fatal arrhythmia due to hypocalcemia brought on by chelation of the calcium ions in his bloodstream. It may be possible that he died of another cause and that the timing of his death was merely a coincidence, but that would have to be a hell of a coincidence, given how rare it is for an otherwise healthy 5 year old boy to drop dead suddenly from a cardiac arrest.

I'm not going to get into the issue of whether or not mercury in the thimerosal used to preserve childhood vaccines has a role in the pathogenesis of autism yet again. My position on this issue should be abundantly clear to anyone who's read my blog regularly over the last few months, and, if it isn't, you can always check out some of my older articles (1, 2, 3, 4, 5, 6, 7, 8, 9). Suffice it to say that the preponderance of evidence presently existing does not support a role for exposure to mercury as a major cause of autism in the vast majority of cases. Mercury may be a neurotoxin, but overwhelming evidence fails to support a role for it in the pathogenesis of autism. Given that the mercury hypothesis represents a biologically implausible explanation for the pathogenesis of autism, any therapy based on "removing" mercury is likely doomed from the start to be ineffective, and any doctor who administers such a treatment for autism (in this case, Dr. Roy Eugene Kerry) should be considered guilty of negligence at best and malpractice at worst.

For the sake of argument however, let's play Devil's advocate for a moment and discuss this tragic case operating under the assumption that mercury does play a major role in the pathogenesis of autism. Even in that case, if the child's death can be shown to be due to electrolyte imbalances caused by chelation therapy, this doctor still should be considered guilty of unethical conduct at best and malpractice at worst. Why? First, as has been pointed out, in physiologic conditions in the body EDTA is a relatively weak chelator of mercury ions compared to the -SH group-containing proteins in the body's tissues. This means that, at equilibrium, mercury ions will remain preferentially bound to -SH group-containing tissue proteins in the body and EDTA will not be effective at competing for binding mercury. Effective mercury chelators contain -SH groups and have higher affinity for mercury than body tissues. Examples include compounds such as 2,3-dimercaptosuccinic acid (DMSA) and 2,3-dimercaptopropane-1-sulfonate (DMPS). In comparison, EDTA is a poor choice as a therapeutic agent to remove mercury from the body, even though in the test tube it binds mercury more avidly than calcium. (Perhaps this is one reason why Dr. Kerry was reported to have claimed to investigators that he was treating the child for "lead poisoning," for which EDTA is approved). In contrast, EDTA is a strong chelator of calcium and magnesium ions, which is why dangerous hypocalcemia is a risk when using EDTA intravenously. Similarly, EDTA chelation therapy can also lead to kidney failure, anticoagulation resulting in bleeding, vasculitis, autoimmune reactions, and depletion of serum zinc ions (which EDTA binds more strongly than calcium or magnesium), leading to compromise of the immune system. Anyone administering chelation therapy in an office not connected to a hospital needs to be prepared to deal with immediately life-threatening complications like cardiac arrhythmias right then and there, because there won't be time to get the patient to a hospital in time to save his life if such complications ensue. At minimum, this would require a fully stocked crash cart and personnel well trained in ACLS and (if treating children) PALS. If Dr. Kerry did not have these resources available, plus cardiac monitoring equipment, it would have been quite reckless of him to be administering intravenous chelation therapy in his office.

Because there are no good studies that demonstrate its efficacy in treating autism, chelation therapy for this purpose should be considered at best an experimental therapy (at worst it is a completely ineffective therapy). As such, chelation is not and cannot be considered the standard of care. Also, it is generally considered dubious at best and unethical or even malpractice at worst to administer unproven experimental therapies outside the context of properly designed and conducted clinical trials, which brings up the issue of informed consent. Did Dr. Kerry tell the parents the truth of the situation, which is that there is no evidence from even minimally controlled trials that chelation therapy does any good whatsoever for autism and that, in addition, intravenous chelation therapy has the risks of dangerous electrolyte imbalances, sometimes fatal cardiac arrhythmias, kidney failure, etc.? It is impossible to say with the information available, but my guess is that, like most altie doctors, Dr. Kerry probably played up the perceived "benefits" of chelation therapy for autism on the basis of almost zero supporting scientific or clinical data and understated its risks. If there is a lawsuit (as there should be if chelation did kill Abubakar), this issue will become very important. Another issue that will become important is that Dr. Kerry is apparently an otolaryngologist, not a pediatrician or a pediatric psychiatrist. What's an Ear, Nose, and Throat doctor who also claims to specialize in allergies doing administering chelation therapy for autism? Where and how did he learn to administer it safely? What are his qualifications to be treating "lead poisoning" or autism? Or did he just start doing it on his own? (I note that the University of Pittsburgh has apparently removed Dr. Kerry from its website; however, the cached page can be found here.)

But, say chelation advocates, no one has died from chelation therapy in decades until now. Well, that's not entirely true. Nonetheless, reply chelation advocates, the risk of death is very small when chelation is properly administered. Maybe so, but it still comes down to a risk-benefit ratio. In the case of serious and often fatal diseases such as cancer, we accept a higher level of risk of treatment-related complications, such as immunosuppression from chemotherapy, and a lower chance of success, because the consequence of no treatment is death. In contrast, in the case of a condition such as autism, where quite a few children improve over time to lead normal or near-normal lives without such interventions as chelation therapy, even a very small risk of death is unacceptable. This is even more true when the treatment risk being taken is due to a therapy whose efficacy is dubious at best, that is likely completely ineffective, and whose premise is not even based on sound science, as is the case for chelation therapy for autism.

Before I leave you temporarily for the last weekend of my vacation, please consider two things. First, one of the hallmarks of quackery is seen when a single therapy is touted as the remedy for a wide variety of diseases of unrelated pathogenesis. For anything other than documented cases of heavy metal or iron poisoning, chelation therapy definitely fits that description. Indeed, chelation is touted as a treatment for atherosclerotic coronary artery and peripheral vascular disease, autism, Alzheimer's disease, kidney stones, diabetes, osteoporosis, skin ulcers, multiple sclerosis, psoriasis, muscular dystrophy, arthritis, poor memory, and even cancer. Ask yourself: How can one simple treatment possibly work for such a wide variety of diseases of vastly differing causes? Is it reasonable to believe that it can? No, it is not. Second, in these cases the question comes up about whether the doctor administering the therapy is a huckster. I have no information on which to base an opinion in this case. However, in most cases I have encountered, the doctor is usually a true believer in the quack therapy he or she is advocating. More than likely, Dr. Kerry genuinely believes in chelation therapy for autism, regardless of the paucity of evidence that mercury causes autism or that chelation therapy makes autistics more "normal." It's easy to lose one's objectivity as a physician when one deals with conditions or diseases that do not have good "conventional" treatments. As has been pointed out by Gregory L. Smith, the very reason medicine has come to insist on evidence-based approaches to evaluating treatments through randomized clinical trials is not because doctors and scientists are wiser than the general population, but rather because they are human and can be just as easily deceived (or just as easily deceive themselves) into believing in a treatment they desperately want to be efficacious. Even so, that does not excuse Dr. Kerry, nor should it stop the State of Pennsylvania from taking immediate action to strip him of his medical license or the parents from suing him for malpractice if the autopsy results demonstrate that Abubakar's death was indeed caused by chelation therapy.

Sadly, such an outcome seems unlikely at present:

I, too, will be awaiting the results of Abubakar's autopsy and may have more to say once it is reported.

This post originally appeared on August 26, 2005 on the old blog.