EDMONTON — Alberta’s health minister says patients who need treatment following controversial out-of-country surgery for multiple sclerosis will get help.
“This is one of the problems you have when you have something that is classified by the medical community as experimental in nature,” Gene Zwozdesky told reporters Tuesday following a protest by MS sufferers outside the legislature.
“But the fact is that if somebody goes out (for the surgery) and has a complication that develops, then we in the province have no choice but to help them best we can to alleviate their difficulties.”
Zwozdesky was referring to treatment for chronic cerebrospinal venous insufficiency, or CCSVI.
Rather than using drugs to treat MS, the CCSVI “liberation” procedure uses angioplasty to open up twisted or blocked veins in the neck and spine.
Doctors in Canada are studying the procedure, but say it remains unproven.
It’s not funded under medicare. As a result, many Canadian MS sufferers are now paying thousands of dollars to have the procedure done in countries such as the United States, Poland and Mexico.
Ginger MacQueen, a Calgary woman who was among the 50 protesters at the legislature, said she went to Poland for CCSVI treatment but said it was clear from her family doctor when she got home that there is a reluctance in Canada to get involved.
“I asked my GP ’What about after-care? Don’t I need to be referred to a vascular specialist now?’ He said no. He kind of hemmed and hawed, and I realized I was on my own.”
“He said if there was some type of emergency then he would refer me, but I think what that means is we’re kind of SOL.”
MacQueen, 46, and the other protesters say it’s important that governments begin funding the treatment immediately given that if nothing else it provides patients with a better quality of life. And if they don’t fund the treatment, they can at least take an ownership role in the followup, she said.
“I didn’t have a future before CCSVI treatment. My future was getting worse. I was going into a wheelchair and for me that’s not quality of life. I was going to go to Switzerland and euthanize myself,” said MacQueen.
“My husband and I (now) want to move to Hong Kong. I can handle heat now. I don’t have heat intolerance anymore. I can go hiking in the sun with my dogs. We have a future.”
The MS Society of Canada says it, too, is concerned about reports that some Canadian patients have had complications and can’t get proper followup treatment.
“We’ve heard these stories as well but I can’t quantify the number,” said society spokesman Stewart Wong in an email.
“The MS Society believes people with MS who have travelled outside of Canada to receive CCSVI treatment should be allowed post-treatment care and followup from the health-care system,” he added.
Health Canada is now studying the liberation treatment. Health Minister Leona Aglukkaq has said when the results are known they will make a decision on whether to fund clinical trials.
The issue is moving along on a number of fronts in Canada, which has one of the highest rates of MS sufferers in the world (pegged most recently as high as 240 out of 100,000).
Zwozdesky said he is pushing to get the studies done and a decision made as quickly as possible, and said he’ll do what he can to help “fill the gap of evidence.”
Saskatchewan has already committed to helping fund clinical trials.
In British Columbia, the provincial College of Physicians and Surgeons is working to try to fasttrack testing to see if liberation treatment is a viable tool.
In the meantime, the B.C. College will continue to treat patients who need help, said Susan Prins, the college’s director of communications.
Prins stressed doctors are not ethically obligated to re-do an experimental CCSVI procedure, but would treat complications that result, such as a blood clot.
“The expectation would be that they would take care of that patient in need, absolutely,” said Prins.
In Quebec, the province’s College of Physicians warned MS patients last week not to seek the treatment at clinics outside Canada because the procedure remains scientifically unproven and may have unknown risks.
However, the Quebec body has also assured MS patients that anyone who develops complications from the procedure will be treated at home.
Liberation therapy is a new frontier in the search for a cure for the debilitating neurological disorder that has confounded scientists for two centuries.
The CCSVI theory is that the MS brain complications are caused by problems related to poor or obstructed blood flow from the brain to the heart due to constricted or twisted veins in the neck and spine area.
In CCSVI treatment, doctors cut a small hole in the groin and insert a catheter to open the vein obstruction using a small balloon.