That’s how Dr. Steven Novella refers to various alternative medical practices used by parents on their autistic children in the May 8th Neurologica blog. Among those practices is chelation, in which medications are administered to remove “heavy metals” from a person’s body and thereby to “detoxify” his or her system. Dr. Novella discusses the recent dropping of charges against Dr. Roy Kerry, who was accused of causing the death of 5-year-old Abubakar Tariq Nadama. In 2005 Nadama went into cardiac arrest after undergoing chelation therapy with Dr. Kerry. Dr. Novella not only points out the dangers of chelation, but also considers why parents—desperate to help a child—-might choose such untested procedures and invest both dollars and hope in the “autism treatment subculture.”
Dr. Novella writes that the death of Nadama is a case of a doctor acting “out 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 [my emphasis].” Dr. Kerry is an ENT surgeon (ear, nose, and throat specialist). Dr. Novella continues:
Then – practicing a specialty for which he was not trained – [Dr. Kerry] decided to give a treatment [i.e., chelation] 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.
Chelation itself is based on a hypothetical theory about what causes autism, the notion that autism can be linked to vaccines or something in vaccines, such as mercury. It is not an approved treatment for autism and is, again, one of many alternative biomedical treatments that have been regularly referred to as “successful,” along with (to name a few), hyperbaric oxygen therapy, sauna therapy, holding therapy, the lupron protocol, and many others (such as this).
Hence the emergence of an “autism treatment subculture,” as Dr. Novella writes:
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.
Dr. Kerry, then, is “not an isolated case” and is rather “representative of a systemic problem in our society,” the public’s increasing adherence to a “treatment subculture” whose players may not only have questionable credentials, but who also may engaged in questionable tactics to “prove” their theories about autism.
Two individuals who are part of the “subculture” that Dr. Novella describes, and who are rather well-known (indeed, a bit notorious) in the annals of vaccine-injury litigation, are Dr. Mark Geier and David Geier. Over at Neurodiversity, Kathleen Seidel has written extensively and cogently about them and the “autism treatment subculture”; she has specifically discussed the dangerous effects of the Geiers’ “Lupron protocol” treatment on autistic children.
At the end of March, Seidel was issued a subpoena commanding her “to appear for deposition and document production in Rev. Lisa Sykes and Seth Sykes’ $20,000,000 personal injury lawsuit, Sykes v. Bayer (Case No. 3:07-CV-660, Eastern District of Virginia, Richmond Division).” The subpoena was issued by lawyer Clifford Shoemaker and was quashed in April. In her latest post, Seidel describes the response of Shoemaker “to the court’s April 21 Order to Show Cause regarding the omnivorous subpoena issued against [her] in the case Sykes v. Bayer.” Shoemaker, that is, has now filed a response to the quashing of the subpoena he issued against Seidel. According to the response, Seidel is said to
“‘…head a group’ that seeks to personally and professionally discredit Rev. and Mr. Sykes and ‘witnesses who have given support to the family’s positions’ — presumably Dr. Mark Geier and David Geier.”
Seidel’s public writing about autism and vaccines is alleged to be a “form of harassment and interference with business relations” and she is said to have received “direct or indirect assistance for ‘efforts to damage [the Sykes and their witnesses] personally for their participation in this lawsuit’ from Bayer Corporation.”
To set these accusations into context, Seidel writes about a lawsuit that was initiated two and a half years ago in noting that “this is not the first time that citizens [like her] participating in public debate about scientific matters have been accused of tortious conduct for persuasively criticizing Dr. and Mr. Geier.” She carefully details the circuitous narrative of the older lawsuit in which
“Dr. and Mr. Geier alleged that they had been defamed and otherwise harmed by the four co-authors and publisher of a medical research review that questioned the reliability of their epidemiological analyses.”
This lawsuit has been dismissed, as Seidel writes in Debate or Defamation?. But Seidel picks up on a pattern of responses among some proponents of alternative medical treatments for autism: Criticize their work and claims of “defamation” will be brought against you, while it is precisely “free and open debate” that is key to advances in science. (And here I thought we were talking about theories of autism causation and treatment and whether or not there is scientific evidence for them…….not whether or not anyone felt that their character was “damaged” by someone criticizing their work. )
One of Dr Novella’s observations about Dr. Kerry on the Neurologica blog is relevant in view of the legal back and forth that Seidel has been made part of, and that seems to be increasingly used—consider the case of Hannah Poling—in efforts to prove theories of autism causation. Writes Dr. Novella:
“Conspiracy theories are used to deflect any criticism, any lack of confirming evidence, or the presence of any disconfirming evidence.”
Instead of simply standing up for the science behind their “Lupron protocol,” the Geiers filed a lawsuit. Instead of referring to studies and research about vaccines and autism, Shoemaker accuses Seidel of “harassment” and “interference with business relations.” Instead of strategizing how to provide for autistic individuals for their whole lives with jobs, housing, and services, much energy, dollars, and (digital) ink is devoted to proving or disproving theories about what might or might not cause autism.
In such an atmosphere, I guess we should not be surprised that treatments such as chelation are prescribed even though large scientific studies have not found them to be effective. In the name of (as Dr. Novella writes) “‘alternative’ ideologies and clever marketing under the banner of ‘health care freedom’” have we become too willing to be eternally “open-minded” about what to do to treat disease and, especially, to “treat” autistic children? Is it possible that there isn’t some magic panacea out there that will cure all of our children’s needs? Is it possible that autism is life-long and that rather than chasing after not only causes, treatments, and lawsuits, it might be best to help the individuals in front of us, every day?