Alberta MS patient says Regenetek researcher was seen as ‘some sort of god’
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Hey there, time traveller!
This article was published 15/01/2015 (2939 days ago), so information in it may no longer be current.
Before flying to India for experimental stem-cell therapy, Alberta businessman Lee Chuckry quit taking Tysabri, a drug many multiple-sclerosis patients use to shrink brain lesions and reduce attacks.
“It was quite effective for me,” said Chuckry from his home in Airdrie, Alta. “I didn’t have attacks when I was on it.”
Doug Broeska, founder of Winnipeg-based Regenetek Research and the clinical trial’s principal investigator, told Chuckry that Tysabri would damage the effectiveness of the implanted stem cells.
Tysabri is one of a long list of medications Broeska advised clinical-trial participants to avoid, all mentioned in a blog posted last fall.
“My first attack started just when I was leaving India,” said Chuckry. “I’d stopped the drug three months before.”
Chuckry knew Broeska was not a physician, but believed Broeska had a PhD and was a bona fide health researcher. Chuckry felt no better after the $24,000 stem-cell therapy. He became increasingly skeptical of Broeska and Regenetek when he returned home from India in May 2013 — his MS just as bad, if not worse.
Chuckry spent 10 days trying to get in touch with Broeska to find out whether going back on his MS medication, this time a steroid called prednisone, would interfere with the effectiveness of his newly implanted stem cells. He could not get an answer from Broeska for days, and said there was no real followup care typically seen in a proper clinical trial — no MRIs, no examination by a physician, no tests, no questionnaires.
Chuckry would become one of Regenetek’s most vocal critics. He assumes, though has never been told, he’s been disqualified from the study.
“Doug has made himself out to be some sort of god, and people have actually fallen for it,” said Chuckry. “It was bogus right from the start.”
Manitoba’s Medical Act bars anyone who is not a licensed physician from practising medicine, “the carrying on for hire, gain, or hope of gain or reward, either directly or indirectly, of the healing art or any of its branches.”
But it’s not clear who enforces the rule. In a statement, provincial Health Minister Sharon Blady urged anyone who believes medical credentials have been misrepresented to contact the College of Physicians and Surgeons of Manitoba. But the College of Physicians and Surgeons says it can only discipline its own members, not the general public.
In an email to the Free Press, Broeska said he never gave medical advice.
“At no time has Regenetek represented that it was providing medical care during any portion of the clinical study,” he wrote.
“Regenetek’s role in the clinical study relates to review and followup, only. To be clear, all medical assessments or treatments are performed by duly registered and qualified physicians, in India.”
He said Regenetek has two medical doctors working on its research in Canada and is about to hire a third.
Some patients agree with Broeska, including Linda Friesen of Tisdale, Sask., one of the most outspoken supporters of “Dr. Doug” and his stem cell treatment.
“He made it very plain he wasn’t a medical doctor from the get-go,” she said by phone Wednesday. “He didn’t give me any medical advice.”
Friesen said Broeska changed her life. She was destined for a motorized wheelchair before she had the stem cell therapy in the fall of 2013 and now she’s walking, her arm function is restored and her vision has improved.
“Am I cured? No. Am I getting better? You betcha,” she said. “Do I owe everything to going to India? You bet.”
Updated on Thursday, January 15, 2015 12:48 PM CST: Adds comment from Linda Friesen