Concerned that multiple sclerosis patients are not getting proper follow-up care after experimental treatments abroad, Ontario has set up a panel of doctors to develop guidelines for all physicians.

The move by Health Minister Deb Matthews is a first for Canada and follows the death last October of a Niagara Falls man, Mahir Mostic, after receiving controversial “liberation therapy” in Costa Rica.

“We’ve heard anecdotally that patients are coming back and they don’t even really know what procedure they’ve had done so it’s very hard for the doctors here to provide the best care,” Matthews said Tuesday.

She hopes to have a report in hand from the panel — including neurologist Paul O’Connor, director of the MS clinic at St. Michael’s Hospital — before the Oct. 6 provincial election.

Patients and the MS Society of Canada hailed the effort as long overdue, even as Matthews cautioned it’s not a signal the government has enough medical evidence to warrant clinical trials of the therapy.

“People won’t feel so left out in the cold,” said Paul Stock, of Scarborough. He had liberation therapy in India for $20,000 a year ago and will soon see a Barrie vascular imaging doctor for follow-up.

“You feel like a hamster on a wheel. It’s like, ‘Sure, I got this treatment done, but now what?’ ” added Stock, who said he is thinking more clearly and feeling better after the treatment but still uses a cane and scooter to get around at times.

Liberation therapy involves using angioplasty — typically employed in cardiac procedures — to thread a small balloon into certain veins in the head and neck to open narrow portions or blockages.

It was pioneered by Italian Dr. Paolo Zamboni in 2009 based on a small, uncontrolled study of 65 patients under the unproven hypothesis that brain lesions causing MS arise from blocked or twisted veins.

“There is insufficient evidence that it is safe and effective,” said Matthews.

The procedure — which has raised skepticism from doctors here but has been publicized by patients saying it has eased their MS symptoms — is not covered under Canadian public health insurance. Research is ongoing, with two double-blind trials now taking place in the United States.

The president of The Multiple Sclerosis Society of Canada said the expert panel should come up with broad treatment guidelines for family and emergency room doctors to vascular specialists and neurologists.

“Follow-up care to experimental treatment requires some protocols and best practices,” said Yves Savoie.

The tricky aspect for doctors in Canada has been that the angioplasty work for MS is done on veins, which are much thinner and prone to deflating to their original size after the balloon passes through. Cardiac angioplasty is done through arteries, which are stronger and wrapped in muscle. Savoie says it’s like comparing Saran Wrap to hard PVC tubing.

In the case of Mostic, the man who died last fall, he was given a stent to hold open one of his veins. His MS symptoms initially improved but later returned and he had no luck seeing a specialist here. He decided to go back to the Clinica Biblica hospital in Costa Rica, where doctors tried unsuccessfully to dissolve a blood clot around the stent. He died of internal bleeding.

However, not enough is known about the case to determine if any doctors in Canada dropped the ball.

The College of Physicians and Surgeons of Ontario has said doctors here must treat a patient requiring urgent care, but refer patients to someone else if they are non-urgent and the doctor feels the patient is requesting care beyond their knowledge.

http://www.thestar.com/news/canada/article/946532--ms-patients-to-get-more-help-at-home