Canadian music icon John Mann will be starting off the New Year by going abroad for stem cell therapy to treat early-onset Alzheimer's disease, but researchers say the treatment is far from benign and hasn't been proven to be effective.
"John's in really good physical condition, but he's reached the end of what he can do with any medical intervention with the Alzheimer's," said Jill Daum, his partner of 29 years.
Mann announced the Alzheimer's diagnosis last fall, saying he then needed the help of an iPad to sing his own songs. He was still in remission for colorectal cancer at the time.
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An online fundraiser in December quickly amassed $55,000 for the controversial treatment. Daum says he will start the therapy on Jan. 9. They have yet to choose a clinic, but they've narrowed it down to two choices, both in Mexico.
They had tried to get into the same Mexican clinic that Gordie Howe went to treat the effects of two debilitating strokes, but it's fully booked until April.
Stem cell treatment or clinical trials for Alzheimer's has yet to be approved for treatment in Canada or the U.S.
Rapidly worsening symptoms
Daum speaks on behalf of Mann, 53, because he's no longer able to have a conversation — he has trouble remembering questions before he can answer them.
But she says the most recent hardship he's had to face is that he can no longer play guitar.
"That's really a difficult thing for him, because he plays guitar and sings every day," she said.
She says the experience of watching her partner and father of their two children, 23 and 25, slowly drift away has been overwhelming.
"Basically you have this extended deep daily pain as you experience a little bit of loss every day," she said. "It's awful; it's devastating for every person who's dealing with this."
Daum said she's "very skeptical" about trying stem cell therapy, but Mann insisted on it.
"John had to try it just because … it's pretty hard not to, if it could help," she said.
"He will tell you that a big reason he wants to do this is so that he has more time with his kids."
Mann has maxed out on the little Alzheimer's treatment that's available in Canada, Daum said, having taken medication for two years now.
Dr. Larry Chambers, the scientific advisor for the Alzheimer Society of Canada, says there is no cure for the disease, which he emphasizes is not a natural part of aging — although age is a risk factor, with the risk of diagnosis doubling every five years after 65.
"We are very fortunate to have a lot of knowledge based on science and medicine, but there are frontiers, and this is one of the frontiers that we haven't got through yet," he said.
There are four drugs approved in Canada to help manage Alzheimer's symptoms, he said, the last new drug having been approved in 2005. But he says advances in stem cell research have been "quite promising."
"Stem cell research is one of the most active areas in neuroscience research these days," he said. "And of course a lot of the researchers involved with Alzheimer's disease are looking to it as a possible way of treating people with Alzheimer's and other types of dementia."
Chambers said he's not surprised by Mann's choice to seek stem cell treatment abroad, given the limited options available in Canada.
"It's a devastating disease and people become desperate," he said. "There's always someone out there who will sell you something."
No evidence to support claims
But some researchers in Canada strongly caution against seeking stem cell treatment abroad.
Dr. Mick Bhatia, scientific director at McMaster University's Stem Cell and Cancer Research Institute, says there is little evidence to support clinical trials, let alone treatment, for Alzheimer's — especially given that there are still no answers regarding the exact cause of the disease.
Nor is the treatment devoid of risk, he says.
"There's no way of controlling what those cells will do if they undergo any kind of mutation that might make them continue to keep going," he said.
"With the Canadian health care system, any therapies are quite rigorous and they're checked over by many groups and jurisdictions, so anything abroad might not meet those standards."
As a researcher, Bhatia says he's frustrated with the growing number of clinics abroad that offer stem cell therapy to an increasingly long list of patients.
"No one benefits from rushing the process," he said. "If something catastrophic happens … it could shut off legitimate research and legitimate progress in the area of cell transplants."
He says private clinics abroad don't contribute to the scientific process, because they don't share their findings with other researchers and they don't publish peer-reviewed work.
Bhatia wishes Mann and his family well and hopes there are benefits to his treatment, but he wants details about the exact type of stem cell treatment he's receiving and the outcomes to be more publicly available.
As for Mann and his partner Daum, they're keeping their expectations in check.
"For our hope, we just think, wow, wouldn't it be great if John could play the guitar," said Daum.