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Being told you have ALS is a devastating thing to hear, according to Terry Loustel, who had to have that conversation in 2022.
The resident of Buena Vista, a village about 51 kilometres northwest of Regina, said there are people who would pay any kind of money on a hope and a dream to just be able to continue their lives.
That’s why Loustel said the Dr. Goodenowe Restorative Health Centre in Moose Jaw is selling snake oil.
”I think it’s absolutely disgusting that this guy is allowed to give false hope to people with this disease,” he said.
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The clinic offers nutritional and metabolic supplements to “reset core biochemical systems” and fix “plasmalogen” deficiencies, which it says contribute to chronic diseases.
The ALS Society of Saskatchewan said the clinic is offering people a cure for ALS, with no proof. ALS is a degenerative disease which slowly steals a person’s ability to move, ending in death.
The restorative health website claims improving biochemical health can make a person more responsive to physiotherapy and cognitive therapy, giving examples in a table that a person with pain and discomfort can reduce or eliminate their pain, and a person confined to a wheelchair could end up walking without help.
A video of testimonials on the website includes two men who had ALS, one who talked about being able to speak better after the treatment, and both who said they had better movement.
Denis Simard, Executive Director of the ALS Society of Saskatchewan, said the clinic is charging people tens of thousands of dollars for its services, but has no real proof they work.
There is a disclaimer listed at the bottom of the centre’s website saying it’s not a medical facility and the services provided are “for educational and research purposes only and are not intended to diagnose, treat, cure, or prevent any disease or medical condition.”
There is no Dr. Dayan Goodenowe listed with the Saskatchewan College of Physicians and Surgeons, but the Dr. Goodenowe website describes him as a PhD neuroscientist, biochemist, synthetic organic chemist, inventor, and clinical research expert.
Most, if not all, the centre’s patients are from out of the province, as Simard said he doesn’t know of any ALS Society members who’ve undergone the treatment.
In February, Simard said he sent a letter to the Minister of Health Jeremy Cockrill, asking him to investigate the clinic, but the response was that the clinic was operating in a legal grey area and there was nothing the ministry could do.
Call for an investigation into clinic
The ALS Society and the Sask. NDP are now calling for the provincial government to start an investigation.
Jared Clarke, the NDP’s rural and remote health critic, said the province is responsible for delivering medical care in Saskatchewan and is required to ensure patient safety is being met.
“In this province there should not be a clinic that is preying on that vulnerability,” said Clarke.
He said the investigation should look into what’s happening at the clinic and whether it meets safety and ethical standards.
“An investigation is important to be able to assess whether there is a gap here, whether we need additional legislation to be able to enforce these kinds of ethics and standards of medical procedures that are being provided in the province,” said Clarke.
Simard said Saskatchewan has a sense that we’re stronger together, that we’re supposed to stand up for each other and to stand up for the most vulnerable.
“What I know for a fact — and this is the only fact that matters to the ALS Society — is people like Terry and people like Kelvin (another ALS patient), they’ve got no time to waste, and so this province needs to step up and make sure they don’t waste any other time,” said Simard.
In response to the NDP and society’s call for an investigation, the Health Minister’s office responded with encouragement for people in Saskatchewan who have ALS to work with their doctors.
The statement said the centre in Moose Jaw doesn’t have any ties to the Saskatchewan health-care system, and the ministry isn’t aware of any people in Saskatchewan who’ve access its services.
Cockrill’s statement didn’t mention anything about whether an investigation would or wouldn’t be conducted.
A representative for Goodenowe passed on responses to questions about the centre and services by email.
He said the centre doesn’t offer cures or formal treatment for ALS and doesn’t guarantee specific outcomes or cures.
“Our self-directed nutritional support program draws on peer-reviewed biochemical research and anecdotal, observational improvements reported by our clients. However, these observations should not be confused with formal clinical trial evidence,” read Goodenowe’s statement.
He said the group is working with Health Canada and other bodies to ensure the operations adhere to their guidelines. Goodenowe denied any suggestion of misconduct, saying he’s deeply committed to “transparent, ethical interactions with all clients.”
When asked why, if the services are so helpful, they aren’t being offered within the health system, Goodenowe said the program is supportive, rather than clinical, offering advanced nutritional guidance, so it isn’t structured for conventional health-care settings.
He said in the statement that he would welcome dialogue and cooperation, and that he would be willing to speak with the ALS Society and the NDP when Goodenowe is in Moose Jaw at the end of the month.
