May Feitsma of Ponoka is disappointed the controversial “liberation therapy” treatment that claims to help those suffering with multiple sclerosis is still unavailable in Canada.
The experimental procedure, pioneered by Italian physician Dr. Paolo Zamboni, is suspended on the premise that MS is linked to chronic cerebro-spinal venous insufficiency (CCSVI), a narrowing of the neck and chest veins. It involves widening and/or unclogging blocked veins in the neck and upper chest through angioplasty or ballooning.
“If you have blockage in the veins going to your heart, they fix that in an instant here,” she said. “It’s too bad.”
Feitsma, who has secondary-progressive MS, travelled to California last month to have the procedure done for the second time.
It cost her $8,000 and though she hasn’t seen a difference in her condition as of yet, she said she’d do it all over again.
But the recent warning issued by the U.S. Food and Drug Administration in regards to the mixed-results therapy has many Central Albertans glad the Canadian government is being cautious.
The FDA is warning health care professionals and patients about injuries and even deaths associated with the experimental procedure, which is still unavailable in Canada.
More research and continued clinical trials are key, said Judy Gordon, newly elected to the board of directors for the Alberta division of the Multiple Sclerosis Society of Canada.
“MS is a very complicated disease and it varies greatly from individual to individual,” said Gordon, the former mayor of Lacombe and also a former MLA, and a passionate advocate for those with MS.
Gordon was diagnosed in 2007 with MS, an immune-mediated disorder of the brain and spinal cord. Researchers have yet to find a cause and a cure for MS.
“We need more facts, guidelines and criteria to work with to understand the procedure as much as possible,” said Gordon. “Right now, we don’t know how many people have had the procedure, how many have died, how many have got sick, how many have been turned away because doctors can’t find the vein blockages, etcetera.”
Furthermore, studies on the link between MS and CCSVI have so far been inconclusive, stated the FDA, and the criteria used to diagnose CCSVI has not been “adequately established.”
The FDA said it has received reports of at least one death from the procedure. They listed many other serious complications as well, including blood clots and displaced stents.
Canada has taken a direction forward, though, when the health minister approved clinical trails, which began last June.
“Much like our Canadian system, the FDA has decided that more research is needed in this department and that is a good thing so we can understand it more,” said Lorraine Evans-Cross, executive director of the Central Alberta chapter for the MS Society of Canada. “We do however believe that everyone has a choice and we want to make sure that those who have had the procedure know the MS society is here for them no matter what.”
The society has put forth $1 million towards that clinical trail and much more to other studies of its own on CCVI.
Hazel Flewwelling, a retired Red Deer teacher, and also a new board director with the MS Society’s Alberta division, said she thinks there’s “something to the therapy” but that they need more data collected and closer record kept on it.
“I’ve seen with my own eyes the wonders the therapy can do for some people,” she said. “But as with any treatment there are risks. We have to responsibly manage those risks.”