Ten years ago I wrote an article here making the case against doing research into chelation therapy for autism. The case is pretty straight forward – there is no basic science reason to suspect that chelation therapy should be helpful for autism, and no preliminary evidence to suggest that it works. Further, the people promoting or using chelation therapy will not listen to the scientific evidence, and those who listen to scientific evidence already know enough to conclude that chelation therapy is not an appropriate treatment for autism. So what would be the point?
Now, a decade later, the situation has not changed, except that there have been a few studies that had no effect on the use of chelation therapy. A 2015 systematic review found 10 studies of chelation and autism. Nine studies were not controlled, which means that they are essentially useless. There has been only one controlled study looking at chelation therapy for autism, and it was completely negative. The authors conclude:
As such, no clinical trial evidence was found to suggest that pharmaceutical chelation is an effective intervention for ASD. Given prior reports of serious adverse events, such as hypocalcaemia, renal impairment and reported death, the risks of using chelation for ASD currently outweigh proven benefits. Before further trials are conducted, evidence that supports a causal link between heavy metals and autism and methods that ensure the safety of participants are needed.
I agree – there needs to be a rationale, and some assurance of safety, before more clinical trials are warranted. All of this is normal medical science. We test new ideas all the time, and most do not pan out and are abandoned. There was never any good reason to suspect chelation might work for autism, and early adoption has demonstrated it is risky, while the only good clinical study shows it does not work. The story should be over, a footnote in the annals of medicine. But of course, it isn’t.
Chelation therapy uses either oral or intravenous chemical to bind to heavy metals and help remove them from the body. It is a legitimate and approved therapy for heavy metal poisoning. However, there are several unscientific uses of chelation therapy, based on the preliminary or false notion that some condition is caused by heavy metals. The use of chelation for autism derives from the notion that autism is caused by mercury poisoning from thimerosal in vaccines. The vaccine/thimerosal-autism connection has been thoroughly disproven.
Therefore the entire basis of using chelation for autism is false. However, a 2013 study found that half a million children are subjected to this risky treatment in the US for autism each year. Use is not limited to the US, and it is common in Canada and Europe as well. A recent article in the Canadian news outlet, CBC, highlights the problem. They write:
Parents often discuss alternative treatments they’re considering for their children with autism with Anagnostou, and she’s fine with many of them as long as they’re safe and used in conjunction with proven autism interventions. But she draws the line at chelation therapy.
Anagnostou is a pediatric neurologist who treats children with autism. While I agree with her opposition to chelation therapy, I believe she is underestimating the harm of using “alternative” treatments that she considers “safe”. Often that means there is not evidence of direct immediate harm, but this ignores all the indirect harm. There is an opportunity and resource cost to using unproven therapies, and this burden may be massive, especially on families that are already experiencing increased burdens from a chronic condition. This may delay or even replace proven therapies.
Also – using unproven treatments does not occur in a vacuum. The practitioners offering those treatments are part of a culture, a network, and an industry of unscientific treatments. By patronizing them for one treatment that you think is individually benign, you are supporting the entire industry – an industry of quackery. I’m sorry, but there is no such thing as harmless pseudoscience in medicine.
The story gets worse, however. Borden King runs an autism advocacy group. The CBC article reports:
So when Borden King found out that Dr. John Gannage, a physician in Markham, Ont., was offering chelation therapy to children with autism, she called government agencies to try to find out if there were any clear regulations preventing that — and found there weren’t.
“It’s this Wild West,” she said. “There is no law that says that you can’t do these things.”
King was told to contact the appropriate regulatory body, the College of Physicians and Surgeons of Ontario, so she did. They said that Dr. Gannage was in compliance with their policy, stating:
Although the [College] does not take a position on individual therapies or treatments, we have developed policies to guide physician conduct while supporting patient autonomy. If physicians offer complementary treatments to patients, their diagnosis must be based on their clinical assessment, be supported by sound clinical judgment and informed by evidence and a risk-benefit analysis.
If patients have concerns about the care or treatment they’ve received, we encourage them to contact our public advisory service.
Patients have the right to make health care decisions that accord with their own values, wishes and preferences. This includes decisions to pursue complementary/alternative medicine either as an adjunct to conventional medicine, or instead of conventional medicine. The Medicine Act, 1991 states that physicians shall not be found guilty of professional misconduct or incompetence solely on the basis that they practice a therapy that is non-traditional or that departs from the prevailing medical practice.
This is partly how the purveyors of pseudoscience and health fraud remain in business – through these very types of regulations. What this regulation essentially says is that there is no science-based standard of care, as long as what you are doing is “alternative”. The standard of care has been successfully erased from medicine. As the response above states, the default now is – if something bad happens, make a complaint (not that anything will happen if you do).
The medical profession has simply rolled over and accepted the eradication of the standard of care, in favor of “patient autonomy” (which is really code for the freedom of purveyors to sell quackery). In my dealings with my colleagues I find that many think this kind of quackery is on the fringe, but they are wrong. This is now fully infiltrated into the mainstream. They just haven’t noticed. When norms slowly shift, it is easy to miss.
Chelation therapy for autism is a good example of the problem with this approach. This is a risky intervention, even with documented deaths, that has no basic science support, and clinical evidence for lack of efficacy. It is offered to desperate parents in a manner that amounts to exploitation. Meanwhile the regulatory infrastructure turns a blind eye because, hey, people apparently want it.
What people actually want are safe effective treatments. They only accept chelation therapy for autism because some medical authorities are telling them this is a good option, while the majority look the other way. This is the legacy of the alternative medicine movement, and the medical profession needs to wake up to this reality or the slide into mainstream quackery will continue.