The SickKids Foundation supports woo

It really and truly saddens me to have to do this.

The Hospital for Sick Children in Toronto is one of the finest children’s hospitals there is. Unfortunately, as I documented yesterday, the hospital has, either knowingly or unknowingly, lent its good name to the metastasis of the quackfest known as Autism One from its primary site in Chicago to a metastatic deposit sullying one of the finest cities in our fair neighbor to the north, Toronto. The metastasis is a secondary quackfest known as Autism One Canada, and, unfortunately, the SickKids Foundation and the Dalla Lana School of Public Health have even facilitated this metastasis by apparently cosponsoring Autism One Canada. As a result of my post on this disturbing development, several of you, my loyal readers, wrote to SickKids Foundation, the Hospital for Sick Kids, School of Public Health, and the University of Toronto. So far, there has only been one answer that I’m aware of, and it comes in the form of a clearly canned response from the Grants Officer at SickKids Foundation, Pam Gilliland, which several of you forwarded to me:

Dear Mr. [suppressed],

Thank you for your email concerning the conference: Changing the Course of Autism in Canada, organized by Autism Canada Foundation in collaboration with the Dalla Lana School of Public Health University of Toronto and Autism One.

The goal of this conference is to provide a respectful forum for parents, therapists, doctors, researchers and individuals with Autism Spectrum Disorder to share, learn and work collaboratively to expand knowledge of treatment interventions for Autism.  There will be a cross section of speakers.

As part of SickKids Foundation’s National Grants Program, support is offered for conferences, workshops or symposia which are relevant to the health of Canada’s children.  The purpose of the conference grants program is to support events which are organized by and/or for families with children with health challenges.

The review process is competitive and funding is limited, with a maximum of $5,000 per grant. Each conference grant application is assessed in terms of its relevance to the health of Canadian children up to 18 years of age, as well as for its fit with the conference grants program goals.

The Foundation sees value on information sharing between medical staff, community organizations, and families. It is important for families to have opportunities for open dialogue with health professionals in order to get an understanding of current research and practices.

The Foundation takes a neutral stance on complementary and alternative health care.  We actually have a history of funding research on complementary and alternative health care for paediatrics.  The use of complementary and alternative health care products and therapies are on the rise across Canada and there is little research on the safety and efficacy of many of these treatments and products for children and youth, as well as the effects of the interactions between natural health products and conventional medicine.  For this reason, the Foundation has taken a first step to build research capacity on which to base practice and policy in these areas.

To this end SickKids Foundation funded Autism Canada in the amount of $5,000 to support their conference:  Changing the Course of Autism in Canada.

I hope this helps to answer some of your questions.

Best regards,

Pam Gilliland
Grants Officer, National Grants
SickKids Foundation
525 University Avenue, 14th Floor
Toronto, Ontario  M5G 2L3
(P) 416.813.6166 x 2354
(F) 416.813.7311
Pamela.Gilliland@sickkidsfoundation.com

http://www.sickkidsfoundation.com/nationalgrants

My response to this is below.

First off, it’s very disappointing that there wasn’t another explanation for the involvement of SickKids Foundation in helping to bring this quackfest to fruition. I had originally hoped that Autism One was simply renting space from the University of Toronto and pulling a Discovery Institute by trying to imply that that renting of space meant that UT was supporting its viewpoint. It wasn’t. Autism One has the full support of SickKids Foundation and, apparently, the UT School of Public Health. Ms. Gilliland appears to have confirmed this.

It’s sad to see what should be a science-based organization hiding behind the “respectful” label. It is not necessary to sponsor a conference, a large portion of which will clearly be devoted to promoting quackery, in order to show “respect” to the parents of autistic children. That crosses the line from respect to pandering and promotion. Moreover, not only is SickKids lending its name to this highly dubious endeavor, it’s actually awarded $5,000 to Autism One to help it put this conference on! Ms. Gilliland claims the grants program is very competitive. If Autism One won one of these grants, I hate to see what the competition was? Why not dole out funds to Generation Rescue to sponsor a conference? It wouldn’t be that much worse than this. As for the “diversity” of opinion on display, all I can say is that it is indeed pretty diverse except for two notable and obvious omissions: A truly science-based viewpoint and anyone who doesn’t support biomedical woo. I guess we wouldn’t want to be too “diverse,” would we?

Let’s look at the speaker list again. I already discussed in depth why the Amy Yasko, Rudi Verspoor, and the keynote speaker Martha Herbert are not exactly paragons of science and reason when it comes to treating autistic children. After all, Amy Yasko sells RNA supplements to treat autism and all sorts of other conditions; Martha Herbert has been slapped down by the courts as not qualifying to be an expert witness regarding autism; and Rudi Verspoor is a frikkin’ homeopath! I also discussed the lineage of Autism One Canada from the even quackier Autism One, which has featured the spokesperson for the anti-vaccine movement in the U.S., Jenny McCarthy, for the last two years in a row, as well as Mark and David Geier, who “pioneered” chemical castration as a treatment for autism.

I could go on. In fact, why don’t I go on, as there are a couple of other luminaries who will be speaking at Autism One Canada that I didn’t mention the first time around? For instance, there’s Bryan Jepson, who comes straight from Andrew Wakefield’s Thoughtful House. His talk will be:

Treating Autism: Understanding Biomedical treatment options

Dr. Jepson will describe the multiple organ system involvement of the autism spectrum including the brain, the gut, the immune system and the detoxification/metabolic system. He will discuss the mechanisms for disease in each of these areas and then talk about treatment options that are being used by clinicians in order to try to correct the underlying biochemical abnormalities that are contributing to the behavioral presentations of the disorder.

Whenever you hear anything about “detoxification” and “biomedical” in the same talk, run, don’t walk. You’re almost certainly hearing only the finest anti-vaccine and environmental woo. If the speaker is someone like Dr. Jepson, who is currently working with the Dark Lord of the Anti-vaccine Movement himself, the man who, while on the payroll of a lawyer who sues vaccine companies, produced an incompetently done and fraudulent study that launched a thousand anti-vaccine quacks in the U.K., in the process producing a scare that the MMR causes autism so great that vaccination rates fell to the point where the measles has become pandemic again, you’re certain to hear anti-vaccine quackery.

Let’s see. There’s also Pamela Ferro, RN, who:

is the president of the Gottschall Autism Center. She is the parent of a child with autism and is also the co-founder of Hopewell Associates, Inc., a nurse-owned and operated psychopharmacologic and biomedical practice specializing in the treatment of adults and children with developmental disabilities. Pam is the director of the Children’s Autism Program at Hopewell as well as a Defeat Autism Now! practitioner, providing intensive and highly specialized biomedical treatment for children. She founded Hopewell Autism Initiative in 2000, a 501(c)3 not-for-profit agency, to provide educational, recreational and social opportunities for children with autism.

She’s a DAN! practitioner? She might as well wear a pin with a rubber duck on her shirt to signify the level of science behind her treatments. Looking at the website of the Gottschall Autism Center, I see all sorts of warning signs that science-based medicine is not what it is about there. All the buzzwords of the anti-vaccine movement are there, in particular they myth of the “autism epidemic,” the invocation of Bernard Rimland and “biomedical” treatment, the discredited idea that opioids from the gut due to gluten, and the listing of vaccines or mercury in vaccines as potential causes for regressive autism, along with the dismissal of a genetic cause for vaccines:

The intensive search for a genetic cause of autism has not been established as researchers have failed to identify a specific gene or complex of genes that can account for the significant increase in the incidence of autism that is now recognized to have over the past decade include issues related to triggers, contributors or potentiators : (1.) genetic predisposition with the recognition of specific polymorphisms and specific metabolic defects, (2.) prenatal insult or postnatal infection has been considered a trigger for some autistics, (3.) immune system dysregulation, including IgA and IgG deficiency, autoimmune reactions, aberrant cytokine profile T cell abnormalities, chronic inflammation and autoimmunity, etc., has been described in the scientific literature, (4.) biochemical abnormalities in regards to amino acids, pheno-sulfertransferase problems, G-alpha protein defects affecting retinoid receptors in the brain which are crucial for sensory perception, language processing, vision, etc. have been established in some autistics, (5.) neurochemical/toxic insults resulting from exposures to chemicals agents including heavy metal/mercury toxicity (thimerosal preservative in vaccines, etc.) with dysfunction of detoxification pathways, (6.) dietary triggers including formation of opiate peptides from incompletely digested casein and gluten proteins, (7.) nutritional deficiencies of vitamins, minerals, amino acid and/or essential fatty acid abnormalities, etc, (8.) occurrence of marked gastrointestinal dysfunction/pathology characterized by intestinal permeability, dysbiosis (with overgrowth of pathogenic yeast, bacteria, parasites and viruses), malabsorption problems, food allergy/sensitivities, digestive enzyme deficiencies, inflammatory gastrointestinal conditions (autistic enterocolitis, gastritis, esophagitis, duodenitis, colitis, etc) as well as ileal lymphoid nodular hyperplasia, (9.) role of vaccination additives, including the MMR (Measles, Mumps and Rubella) triple vaccine, in triggering the onset of autism (10.) the possible role of metallothionine impairment which could lead to compromised immune, gastrointestinal and detoxification function in some autistics, (11.) detoxification impairments and abnormalities with disordered methylation defects, (12.) metabolic imbalance involving impaired antioxidant defense with alterations in glutathione leading to disruption of cell function and signaling. The current thinking is that a combination of factors are possible triggers and/or contributors in the etiology of regressive autism.

No, the current thinking among the anti-vaccine movement and biomedical quacks is that many of these factors cause autism. The current thinking among scientists is that autism is caused mostly by multifactorial genetic changes.

Then there’s Sonja Hintz, RN, who:

has worked with children with disabilities since the age of twelve. At 16 she began working in group homes as a counselor, which included living there part-time, teaching activities of daily living, and advocating in situations involving discrimination. Following, this Sonja worked as a public health nurse, a psychiatric nurse, and a neonatal intensive care nurse. Through the use of a therapeutic diet, homeopathy, herbs, vitamins, essential oils, and chelation in addition to many other therapies, Sonja’s son has recovered from autism. For the last 10 years, she has also helped other children improve their quality of life. Currently she is working at True Health Medical Center with Dr. Anju Usman.

Chelation therapy? Homeopathy? There is no therapy that is more obviously pure quackery than homeopathy, and chelation therapy is not only ineffective but potentially dangerous, having resulted in the death of an autistic child a few years back. Neither have any role in treating autistic children–or anyone else for that matter. The sole exception chelation therapy, whose only real indication is to treat acute heavy metal toxicity–certainly not autism, heart disease, or any of the other myriad conditions for which it is sold.

I realize that this conference isn’t all as bad as this, but so much of it is pure pseudoscience and quackery that it completely taints any value that anything else in the conference may have. It’s like asking Laetrile pushers and advocates of the Hoxsey therapy to give a talk at a cancer conference in numbers equal to or greater than those by science-based practitioners.

Two other things really disturbed me about Gilliland’s letter, one that was actually in the text of the letter and one that was apparently intentionally ignored. The first thing, which was in the letter, was the statement that SickKids “takes a neutral stance” with respect to “complementary and alternative medicine” (CAM). Ms. Gilliland repeats the usual tropes about how, because so many are using CAM, there must be something there that works and is worth studying. She appears to have bought into the concept that natural products must be “alternative,” when they are not at all. The study of natural products has existed for a long time in the perfectly respectable subfield of pharmacology known as pharmacognosy. Moreover, she seems proud that SickKids is funding woo. Indeed, if you look at the SickKids portfolio of funded studies in 2005-2006, it’s clear that the foundation has been funding a lot of CAM, mostly herbal remedies, but also some serious, serious woo, such as therapeutic touch. Indeed, it boasts:

We know that children – particularly children who have significant health challenges and are being treated at SickKids and other hospitals – are being administered a variety of complementary therapies including acupuncture, chiropractic treatment, naturopathy, herbal medicine, use of vitamins and certain diets, homeopathy, massage, and various mind-body healing practices. In many cases, we do not know if these treatments are effective, safe, or how they interact with conventional therapies – there is not a lot of research on many of them, and this is particularly true in the paediatric population. SickKids Foundation is the only granting agency in Canada funding in the area of Complementary and Alternative Health Care with a specific focus on children. The Foundation is investing $400,000/year into research training, workshops, a national research network, and to research projects in the following areas: utilization data so that we get a picture of who is using what for what conditions; the efficacy of various complementary and alternative therapies; and policy issues in this area.

$400,000 a year to study woo? That’s some serious bucks for a private foundation! And, in case you want to give SickKids a pass because most of what it funds is herbal remedies and products, there have been grants funded to study homeopathy! Any organization that thinks there is anything to homeopathy sufficiently compelling to be worthy of study of efficacy has a serious, serious problem. True, a recent announcement states that there will be no longer be a separate grant program for CAM, but that applications for grants to study CAM were still welcome within areas viewed as priorities by the Foundation. In other words, SickKids is–if you’ll excuse the term–“integrating” CAM into its general funding. Certainly, if Ms. Gilliland’s letter is any indication, there doesn’t appear to be any desire to pull back from funding CAM.

But what bothered me even more than this is what Ms. Gilliland did not say. I know for a fact that several of you complained to her about the anti-vaccine slant of Autism One conferences. Some of you sent me copies of your e-mails. Yet, Ms. Gilliland writes not a word about vaccines, as if she were assiduously and intentionally ignoring this very important point, namely that by funding Autism One Canada, the SickKids Foundation is lending its name to one of the greatest threats to the health of children: the anti-vaccine movement. If the anti-vaccine movement gets its way, vaccination rates will fall, and children will suffer and die. I realize that the anti-vaccination movement doesn’t see it that way, that its adherents think that vaccines cause autism, but the end result of their efforts will be the suffering and deaths of children nonetheless. Yet, here is a charity dedicated to helping children through scientific research and which funds a large amount of truly good research supporting a group that is part of a movement that is the most serious threat to public health in general and children’s health in particular. I would like to think that Gilliland probably has no clue that this is the case, but her refusal to address the issue implies to me a level of shame, as though she knows what Autism One really stands for.

I really don’t know how to respond to this right now. On the one hand, I want to convince the powers that be at SickKids that they have made an enormous and tragic mistake in helping to fund this conference. On the other hand, in doing so I don’t want to hurt an organization dedicated to such a noble calling. The only thing I can think of is to keep the pressure up with e-mails, blog posts, and even phone calls and to shine the light on this situation. It’s highly unlikely that SickKids will withdraw its support from Autism One Canada, given that it was already given, but hopefully, if the publicity and expressions of displeasure at this turn of events reaches a certain level, the SickKids Foundation may rethink its position regarding the funding of highly dubious conferences in the future.

And don’t think that leaves the Dana Lana School of Public Health off the hook, either. It’s mentioned more than SickKids, and it’s just as complicit. Indeed, given the importance of vaccines to public health, it’s even more of a failing that a school of public health–any school of public health–would sponsor a conference rife with anti-vaccine quackery.