REGINA - Opposition New Democrats and advocates for Amyotrophic Lateral Schlerosis (ALS) are calling on the province to investigate a clinic in Moose Jaw that claims to offer treatments for ALS.
NDP Rural and Remote Health critic Jared Clarke called for a full investigation into the Dr. Goodenowe Restorative Health Center in Moose Jaw, following a CBC investigative news story that raised concerns about their operations.
“A damning CBC investigation found that this facility that opened last July is offering expensive, unproven treatments to people living with neurodegenerative disorders, such as ALS, Parkinson's, MS, and other cognitive disorders like dementia and Alzheimer's,” said Clarke.
“They are charging up to $90,000 US for programs based on unapproved supplements and unsupported medical claims. The facility markets itself as offering restorative health services, yet the CBC investigation found that it employs no nurses or doctors. Its founder, Dayan Goodenowe, is not a licensed medical doctor in Canada and is not regulated in any or by any professional body. 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. This is false hope being sold for profit. This is not just unethical, it is dangerous.”
Clarke called for immediate action from Health Minister Jeremy Cockrill.
“This is not a gray area. This is a clear and urgent matter of patient safety. We cannot allow unregulated facilities to target vulnerable people with misleading claims without any oversight or accountability.”
Denis Simard, Executive Director of the ALS Society of Saskatchewan, said their organization had been “wanting to have this investigation done for quite some time.”
He said they submitted a letter back in February to the office of Health Minister Jeremy Cockrill requesting that an investigation took place, and also collaborated with members of the media. He also confirmed there had also been meetings with Cockrill.
Simard called what was going on a “complete disrespect of our, what I would consider Canadian ethics and values.”
Simard also said he would encourage the City of Moose Jaw to "look at everything they can do in regards to looking at this individual, his clinic, what kind of certifications are existing on a municipal level.” Among the suggestions was to look at denying building permits to prevent Goodenowe from building a new facility.
Terry Loustel, an ALS patient who is confined to a wheelchair and who has advocated for ALS patients, started off his remarks by saying that he was “elated that somebody has come up with a cure for this disease. A little bit of sarcasm there.”
Then Loustel got serious. “There is no cure. This guy is peddling snake oil. It reminds me of the 1800s when the peddler would come into town with his horse and wagon, throw the tarp up, and there would be all these bottles of cures for everybody in town.”
He particularly blasted the Goodenowe clinic for its exorbitant costs.
“We're already in a vulnerable position. We would gladly pay money to get rid of this disease if it was a valid clinical process that had shown that it worked. But this guy's got no proof. He's got no clinical trials. He's got nothing to say, to show, other than people that have tried it, their testimonies. And for the most part, those people have regressed. I just can't believe this is happening in Saskatchewan, 80 km from where I'm sitting right now.”
Loustel says that he has participated in studies through the ALS clinic in Saskatchewan with medical professionals. But he said he hasn’t pursued anything outside of what he considered to be valid research.
“There are some things that help the genetical version of ALS. But so far there's been nothing that works for people like myself. And as much as I'd love to jump in the van and shoot off to Moose Jaw and get this miracle cure, I know it's not a miracle cure.”
The CBC investigation also found that the Moose Jaw clinic mainly focused on an American clientele. Clarke offered that he thought part of the reason why there weren’t a lot of Saskatchewan patients, clients is “because of the good work that the ALS Society has done in educating their members about the potential issues at the clinic there.”
“I think Moose Jaw is an amazing community, amazing city in this province. And I think it is a blemish to their reputation to have this facility operating there when there are so many questions and concerns about what is going on.”
In a recent interview with Moose Jaw Today, Goodenowe refuted the CBC story and the allegations against his clinic.
“It was a very false reporting (by CBC), to say the least … ,” Goodenowe told Moose Jaw Today. “This will not go over well for them.”
He told Moose Jaw Today he would “probably” take legal action against the CBC.
“We’re local. We feel very passionate about the work we do (and the beliefs we have),” Goodenowe said. “We care deeply about every single person we work with, just like anyone in Moose Jaw does … . We’re in Moose Jaw for the long haul.”
In response to the NDP news conference, Health Minister Cockrill has provided this statement:
"Unfortunately, at this time, there is no cure for ALS. We encourage Saskatchewan residents diagnosed with ALS to work with their licensed family physician or primary care provider.
"Dayan Goodenowe’s business in Moose Jaw has no ties to the Saskatchewan health care system. At this time, we are not aware of any Saskatchewan residents living with ALS who have accessed Mr. Goodenowe’s services.
"Physicians who hold a valid license with the Saskatchewan College of Physicians and Surgeons can be found here:
."
Later in the afternoon Minister Cockrill issued an additional statement in which he confirmed that he "recently met with the ALS Society of Saskatchewan and had previously reached out to their Executive Director regarding Mr. Goodenowe’s claims about treatment of ALS."
"It’s important to clarify that Mr. Goodenowe’s business in Moose Jaw has no ties to the Saskatchewan health care system. It is a private business, not a provincially regulated health centre or affiliate, and the individual operating it is not a licensed medical doctor, so he does not fall under any established health regulatory body.
" As a government, we remain committed to regularly reviewing and updating legislation and regulations to ensure the safety and well-being of Saskatchewan residents. 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."
With files from Jason Antonio
