“These patients and families are being misled and taken advantage of.”
Larissa Kurz
Regina Leader-Post
Terry Loustel recently heard about a health centre in Moose Jaw claiming it can stop and even reverse symptoms of amyotrophic lateral sclerosis (ALS).
Diagnosed with the neurodegenerative disease in 2022, Loustel was surprised by the claims because, if true, they would be no less than a medical miracle.
ALS, also known as Lou Gehrig’s disease, affects the nerve cells in the brain and spinal cord, causing loss of muscle control that gets worse over time.
There is currently no known cure.
After a small amount of research, Loustel said he emerged skeptical of what Dayan Goodenowe of the Dr. Goodenowe Restorative Health Centre was saying could be done for people like him.
“There is no cure for ALS,” said Loustel. “It is a devastating disease.”
Loustel fears the centre is exploiting vulnerable people who are “wishing and praying” for a cure.
He joined the ALS Society of Saskatchewan and the Sask. NDP on Friday, calling for the provincial government to launch an investigation into Goodenowe’s centre and its operations.
Denis Simard, executive director of the ALS Society, said Goodenowe’s treatment program “lacks scientific validation” and is giving false hope to patients seeking valid options to treat the difficult disease.
“These patients and families are being misled and taken advantage of,” said Simard. “Dr. Goodenowe is exploiting the trust of people facing the most devastating diagnoses. This is a serious breach of public trust and medical ethics.”
The Regina Leader-Post reached out to the Dr. Goodenowe Restorative Health Centre seeking comment Friday, but did not receive a response before publication deadline.
Goodenowe was the focus of a recent CBC Saskatchewan investigation which found U.S. patients have paid as much as US$90,0000 to travel to Moose Jaw for treatment at his facility. Many said they saw no lasting results, and CBC could not find any research or peer-reviewed support validating Goodenowe’s ALS treatment.
CBC found that Goodenowe’s facility does not employ any doctors or nurses, nor is he registered as a medical doctor with any regulatory bodies in Canada. His website describes him as a “PhD neuroscientist, biochemist, synthetic organic chemist, inventor and clinical research expert.”
Goodenowe’s website also purports that his programs can treat autism, dementia and other neurodegenerative disorders like Parkinson’s disease and multiple sclerosis (MS).
According to the site, clients would undergo treatment at the centre for one to three months, which includes “restoring your biochemistry through scientifically targeted supplementation, biochemical assessments, and personalized health plans.” It also lists “scientifically-targeted physiotherapy, operational health assessments, and tailored rehabilitation exercises” to restore physiological health.
Patients would then transition back home with “continued” support for four to 12 months.
“We’re talking about people with an incurable disease who are desperate for hope being misled with promises that are not backed in any scientific evidence,” said Jared Clarke, Opposition critic for rural and remote health. “This is false hope being sold for profit. This is not just unethical. It is dangerous.
“This is a clear and urgent matter of patient safety. We cannot allow facilities to target vulnerable people with misleading claims without any oversight or accountability.”
Simard said the ALS Society reached out to Minister of Health Jeremy Cockrill in February, flagging Goodenowe’s centre as unregulated and potentially violating medical ethics.
Simard said the response was that the centre doesn’t fall under the jurisdiction of any government legislation. Because Goodenowe is not a physician, Simard said other mechanisms for accountability also are not applicable.
“We think that’s unfair,” Simard said. “If grey areas exist, how do we correct those? How do we fix what’s missing in the law? I think there’s ways for (a special) committee to be able to look at that, in a bipartisan way.”
In response to a request for comment from the Regina Leader-Post, a statement from Cockrill said Goodenowe’s centre is a private business that “has no ties to the Saskatchewan health care system” and “does not fall under any established health regulatory body.”
The statement did not directly indicate whether the province could or would launch an investigation.
“As a government, we remain committed to regularly reviewing and updating legislation and regulations to ensure the safety and well-being of Saskatchewan residents,” said Cockrill’s statement. “We continue to encourage Saskatchewan residents diagnosed with ALS to work closely with their licensed family physician, specialist, or primary care provider to ensure they are receiving evidence-based, medically approved care.”
Clarke said it is the provincial government’s responsibility to ensure that any medical care being provided in Saskatchewan is “above board.”
“And if not, then the government is responsible to take action to keep patients safe in this province,” he said.
As far as the ALS Society is aware, no Saskatchewan patients have sought treatment at Goodenowe’s centre. But Simard said his organization is concerned that, if left unaddressed, patients could be exploited in the future.
“Eventually, this is going to become negative publicity,” added Loustel. “I’m proud of this province (and) I don’t want to see our reputation soiled four or five years down the road because all of a sudden there’s hundreds of people saying, ‘Why didn’t they do something to prevent this from happening?’”
lkurz@postmedia.com
