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Sunday, November 24, 2013

Pitching Autism Woo? Bridges May Be for Sale Today in Belmont, MA

Watch Your Children and Your Wallets!

By Anonymous
November 25, 2013

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NOTE: This provocative special post was provided to us "over the transom" by someone knowledgeable in the field who because of the sensitivity of his/her position, wishes to remain nameless.

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On Tuesday, November 12, a seemingly innocuous announcement with “Diet Talk in Belmont 11/24 – Free” in its email subject line was sent to MassPAC listserv subscribers. MassPAC is the statewide organization providing information, training and networking opportunities to Massachusetts special education parent advisory councils (PACs), and the professionals who collaborate with them.

The full title of this workshop is, “Dietary, Nutritional and Medical Treatments for Autism and Asperger’s Syndrome.” It will take place from 3:00 - 5:00pm on Sunday, November 24th in the Belmont Public Library, at 336 Concord Avenue.

The speakers listed were Professor James B. Adams, Ph.D. of Arizona State University and Stephen M. Edelson, Ph.D., director of the Autism Research Institute (ARI). Adams is also an adjunct professor at Southwest College of Naturopathic Medicine, and the parent of a child with autism.

Impressed?

So was the listserv's ordinarily sharp-eyed moderator. Gulled by the speakers' degrees and titles, she allowed the announcement to be posted without any special vetting. And why not? Not everyone is, or should be, up on the science--and politics--of autism, or familiar with those who would exploit the families affected by it.

Rather, the meeting's sponsors, who curiously neglected to identify themselves in the announcement, should have recognized their ethical obligation to disclose that ARI and Dr. Adams, closely aligned with SafeMinds, Generation Rescue, TACA and several other anti-vaccine groups, have long been proponents of various controversial, expensive and risky autism “treatments” of dubious efficacy.

The Autism Research Institute

Quackwatcha nonprofit corporation whose purpose is to combat health-related frauds, myths, fads and fallacies, includes the Autism Research Institute, on whose Board Dr. Adams once served, and where he is currently co-Leader of its Science Advisory Committee, on its list of "Questionable Organizations":

“ARI holds to the medically-discredited belief that autism is partially caused by vaccinations; it also suggests chelation therapy, a treatment which is dangerous enough to have caused multiple deaths and has never been shown to be an effective form of treatment for autism.”

In an April, 2013 article entitled, "How the "Urine Toxic Metals" Test Is Used to Defraud Patients," Quackwatch reported,

"In 2005, the Autism Research Institute,which promotes a spectrum of questionable autism treatments, issued a 42-page consensus position paper called Treatment Options for Mercury/Metal Toxicity in Autism and Related Developmental Disabilities. Referring to provoked testing of urine specimens, the document states that "the reference range for the urine or stool generally involves a comparison to people who are NOT taking a detoxification agent, so that even a normal person would tend to have a high result."

Secretin, a hormone involved in the control of digestion, was another highly-touted "miracle treatment" for autism that has since been discredited scientifically. It didn't come cheap, at a cost of around $200 per injection. 

No studies have ever found clinically significant differences between Secretin and placebo. Researchers at Vanderbilt University who reviewed seven such studies found that, “Secretin did not work as a treatment for autism in any of the studies that used proper research methodology.” They argued that, “The weight of the evidence against Secretin is such that future studies on Secretin for autism are unwarranted.” In 2004, RepliGen, the company manufacturing human recombinant Secretin, discontinued their Phase III study of children with autism for lack of evidence of efficacy.

But here’s Dr. Edelson commenting recently: “Secretin was and still is a very promising treatment, and it has the potential to be one of the most effective interventions available for individuals on the autism spectrum.” 

Edelson’s remarks appeared in Age of Autism, the "Daily Web Newspaper of the Autism Epidemic," which, according to its editors, was "triggered" by mercury. A of A  is the online home base for anti-vaccine activism, pseudoscience, outright science denial and the promotion of questionable therapies and big pharma/big government conspiracy theories.

Hyperbaric oxygen therapy (HBOT) is also on the agenda for today’s workshop. No studies have found any statistically significant differences in the results of HBOT vs. placebo, or what one study called “sham air.” Behavioral effects reported anecdotally have proven to be transient. Many of these studies were conducted by practitioners with manifest conflicts of interest, in that they offer HBOT treatment in their own clinics, or consult to organizations promoting its use, and lacked appropriate controls.

HBOT is not recognized as an autism treatment by health insurance companies, which makes its cost especially burdensome to families; at least one hour or, more typically, 2 hours per day of exposure are recommended for at least a month or longer, at a cost of $100 -$120/hour. Families have the option of buying their own hyperbaric chambers, which can cost upwards of $10,000, or renting one for around $1500/month.

Professor James B. Adams

Dr. Adams’ 1987 Ph.D., from the University of Wisconsin – Madison, is in materials science and engineering. His Arizona State profile notes that he has done “extensive research in developing computational models of materials and applying those models to the study of the properties of materials.” He is not a biologist or medical doctor.

This bears repetition: there is no evidence that he has any of the qualifications in neurology, endocrinology or toxicology that would customarily be required to conduct this type of biomedical research involving humans.

In his words, the focus of that research “is primarily on biomedical issues, including nutritional deficiencies, heavy metal toxicity, and bacterial/yeast overgrowths in the gut.” Forbes Magazine Science Writer Emily Willingham has characterized this as “a laundry list of autism woo.” ASU itself once sanctioned Adams for conducting a study without adequate oversight by an Institutional Review Board.

More troubling is Adams’ long collaboration with, and support of, Dr. Mark Geier and his son, David Geier, with whom he is listed as co-author of three “scientific” papers, and whose other work he often cites. In autism circles, the Geiers are infamous for their development of the Lupron treatment protocol, which has been characterized as barbaric.

Along with Adams, the Geiers, who operated a chain of autism clinics in various states, endorsed the discredited notion that poisoning by mercury (as found in the discontinued vaccine preservative Thimerosal) and other heavy metals was a principal cause of autism.

They further hypothesized that in boys, the mercury was bound up with testosterone, making it more difficult to excrete or remove by chelation (which they called “detoxification”), itself a therapy not without risk, for which there is little evidence, and in the course of which they sometimes employed agents off-label or lacking FDA approval for use in the U.S. Sometimes, patients were misled as to what chelating agents were being used.

To unbind mercury from testosterone, the Geiers treated their young male autistic patients with Lupron, a powerful anti-androgenic used to chemically castrate sex offenders! Many of these patients, some of whom they Geiers never even examined in person, were intentionally misdiagnosed with precocious puberty to qualify the treatment, for which the Geier’s charged as much as $6000/month, to for insurance reimbursement.

Mark Geier characterized Lupron as “the miracle drug” for autism. But in 2009, more than two dozen prominent endocrinologists dismissed the treatment in a paper published by the journal Pediatrics, saying it was supported only by “junk science.” Noted autism researcher Dr. Simon Baron-Cohen of Cambridge University said it was irresponsible to treat autistic children with Lupron.

"The idea of using it with vulnerable children with autism, who do not have a life-threatening disease and pose no danger to anyone, without a careful trial to determine the unwanted side effects or indeed any benefits, fills me with horror."

Lupron injections are extremely painful, and can disrupt normal development, interfering with natural puberty and potentially putting children's heart and bones at risk.

Adams offered expert testimony on chelation in defense of the Geiers in a disciplinary hearing before the Maryland Board of Physicians, a proceeding which ultimately resulted in the revocation of Dr. Mark Geier’s medical license. David Geier was found to have been practicing medicine without a license, and was fined $10,000.

The comments by the Board make compelling reading:

“Dr. Geier, however, is not a "trained clinician." He completed only a one-year residency in obstetrics and gynecology, has no formal specialized training in the treatment of autism, and is not Board certified in any medical specialty. Nor did he complete an "appropriate examination" of these patients.

“Dr. Geier has displayed in this case an almost total disregard of basic medical and ethical standards by treating patients without properly examining or diagnosing them, continuing treatment without properly evaluating its effectiveness, and providing "informed consent" forms that were misleading and in at least one case blatantly false.

“He provided treatments supposedly according to an investigational protocol, but the investigation was approved only by a sham Institutional Review Board, and he applied protocols to patients who did not fit his own profile. He provided treatment by a drug not approved for use in this country while informing parents that a different drug would be used. His actions toward his patients were not those of an honest and competent physician, nor do they appear to be those of an objective and ethical researcher.

Dr. Geier made little use of those methodologies that distinguish the practice of medicine as a profession. At the same time, he profited greatly from the minimal efforts he made for these patients. In plain words, Dr. Geier exploited these patients under the guise of providing competent medical treatment. Such a use of a medical license is anathema to the Board. The Board has no hesitation in revoking his medical license.”

For its part, the Medical Licensing Board of Indiana found that Mark Geier:

a.) misdiagnosed autistic children with precocious puberty and other genetic abnormalities and treated them with potent hormonal therapy ('Lupron therapy') and chelation therapy, both of which had a substantial risk of adverse side effects, thus exposing children to needless risk of harm;

b.) failed to conduct adequate physical examinations of patients in several instances before starting Lupron therapy;

c.) failed to obtain adequate informed consent from the parents of autistic children he treated;

d) endangered autistic children by administering a treatment protocol that has a substantial risk of harm and is neither consistent with evidence-based medicine nor generally accepted in the relevant scientific community;

e. misrepresented his credentials by declaring himself to be a board-certified epidemiologist and geneticist, which he was not; and,


f. maintained an Institutional Review Board which does not meet Federal regulations.


Geier’s license has now been revoked by every state in which he has ever practiced.

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