May 08 2008

Charges Dropped in Chelation-Autism Death

Dr. Roy Kerry, who is an ENT surgeon (ear, nose, and throat specialist) decided that he would extend his practice to treating children with autism by giving them chelation therapy for presumed heavy metal poisoning. In other words, he decided to completely abandon the scientific and ethical standards that should guide the practice of medicine. Back in the day, states actually took it upon themselves to enforce reasonable standards, but the world today is swept up in a collective delusion – often referred to as complimentary and alternative medicine (CAM) or “integrative” medicine – the essence of which is the wholesale abandonment of the standard of care in favor of wishful thinking and magic.

As economist Paul Krugman observed, in a different context (and I am paraphrasing), “When the public believes in magic, it’s springtime for charlatans and con-artists.”

In the case of Kerry, his medical shenanigans lead directly to the death of 5-year-old Abubakar Tariq Nadama in 2005. The story is tragic: Abubakar had autism. His parents, reasonably and lovingly wanting to do everything they can for their child, apparently became caught in the web of misinformation claiming that autism is associated with mercury poisoning. The scientific evidence does not support this contention, nor is there scientific evidence that treating autistic children with chelation to remove mercury is of any benefit. That such misinformation is out there is an unavoidable consequence of free and readily available information in an open society. But it is also a symptom of a scientifically illiterate society grappling with scientific medical issues, and the current atmosphere of distrust of the medical establishment combined with the allure of anything “alternative.”

Abubakar’s parents reasonably sought the advice of a trained, licensed professional – Dr. Kerry. Unfortunately for Abubakar, Dr. Kerry’s advice and practice do not reflect the respect that his profession has bestowed upon him. Dr. Kerry was acting outside of his specialized area of training – something which is specifically noted to be unethical behavior in most state statutes dealing with the ethical guidelines for physicians. Then – practicing a specialty for which he was not trained – he decided to give a treatment that was not indicated based upon a theory that is rejected by the consensus of opinion of actual experts in the relevant field. Such behavior can only be described as overwhelming (and deadly) hubris. Beware someone who presumes to know better than the experts in another legitimate field of study.

Unfortunately, Abubukar suffered a cardiac arrest and died while in the office of Dr. Kerry after receiving EDTA (a chelation drug) by IV push. There is some dispute about some of the details of the story – whether or not the proper form of the drug was used, and whether or not it is advisable to give the drug quickly by IV push vs slowly by IV drip. These details are certainly important in determining if Dr. Kerry was criminally negligent, but they are not important to the bigger issue, and that is Dr. Kerry’s use of chelation to treat autism. Dr. Kerry had been charged with negligent manslaughter, but these charges were recently dropped.  I don’t want to comment on the legal aspects of the criminal case, because often legal details get in the way of the bigger issue.

Chelation therapy is not a legitimate treatment for autism. This is the overwhelming opinion, based upon significant evidence, of the medical community. If a physician goes against the current standard of care the burden is on them to provide adequate justification. In this case, there simply is no adequate justification, and this is worsened in Kerry’s case because he was practicing outside his specialty.  Any risk from chelation is therefore not justified.

Clinical practice is based largely on the calculation of risk vs benefit. Treatments do not have to be without risk (and few are), they simply must provide more than enough potential benefit to justify that risk. This is true even for clinical research, although here there are significant unknowns (by definition) and so proper informed-consent and ethical oversight must be given. The treatment given by Dr. Kerry was not done as part of an approved study, and the evidence does not support the risk of chelation. Therefore what Dr. Kerry did was both substandard and unethical, in my opinion.

The even larger context is more distressing.  There is now a subculture of those who believe that they know better than the consensus of scientific medical opinion. This subculture includes private citizens who just want answers and either don’t trust the establishment or don’t like the answers they are giving, it includes lawyers who are happy to make money off the whole thing, journalists who are happy to make a career out of hysterically misinforming the public, and most alarmingly it includes doctors who are willing to practice unscientific and unethical medicine (for whatever reason).

Further, an infrastructure has arisen to support the whole enterprise. It’s like a separate health care system existing in fantasy land. Of significance to this case, there are labs that are happy to make money by providing worthless clinical tests to support the quack notion of the month. They either use tests that have not been validated, or that are virtually designed to provide false positive results.

I occasionally encounter such lab tests in my practice, often brought in by unsuspecting patients who have no reason to think that the results are not legitimate. By coincidence very recently I was brought such a lab test that was performed on a patient with dementia. The ordering physician suspects (without reason) that the dementia may be due to mercury or other heavy metal poisoning. Standard blood tests were negative, but this outside lab found a significantly positive result. I looked over the lab report and found that it was a “provoked” urine test for lead and mercury. “Provoked” means that prior to collective the urine a chelating agent was given to draw lead and mercury out of the tissue so that it could be excreted in the urine. However, at the bottom of the lab sheet was a small disclaimer admitting that the reference range was based upon normal values for an unprovoked urine level (which should be much smaller than a provoked level). In other words – this test was worthless, and worse it was designed to produce a false positive test. And yet the patient was being chelated to treat the fake diagnosis made by using an invalid test, while the valid test was negative.

This is exactly what is happening in this subculture of autism and mercury  – provoked urine tests are being used to validate the a priori belief in mercury toxicity, then chelation is given to treat the fictitious cause. Then, of course, subjective validation and the placebo effect come into play (as well as normal development – autistic children still develop and can improve as they age), giving the appearance that the chelation had some benefit.

What we have is an internal belief system that is completely cut off from external falsification. Conspiracy theories are used to deflect any criticism, any lack of confirming evidence, or the presence of any disconfirming evidence. The trappings of modern medicine have cropped up to lend a patina of legitimacy to the whole enterprise – and is sufficient to fool, or at least profoundly confuse, the general public.

All of this is happening at a time in history when the normal scientific and ethical standards that should keep this from happening are being systematically eroded and undermined in the name of “alternative” ideologies and clever marketing under the banner of “health care freedom”.

Dr. Kerry is not an isolated case  – he is representative of a systemic problem in our society. Abubakar is not an isolated victim. But hopefully cases like this will draw attention to the insanity that underlies them.

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