Controversy over new treatment causing rifts in Canadian MS society

From Canwest News Service:

Janet Heisey will spend $10,000 to fly from her Toronto home to Bulgaria next weekend for a treatment she hopes will halt the progress of her multiple sclerosis and prevent her from winding up in a wheelchair.

It’s a relatively minor, cheap and safe procedure — a balloon angioplasty to clear the blockage of veins carrying blood from the brain — but it’s one that MS sufferers like Heisey, 51, can’t pursue in Canada.

This “liberation therapy” is driving a wedge between the board of directors of the Multiple Sclerosis Society of Canada, who are urging for more research to examine the consequences of the treatment, and those, like Heisey, who say they simply don’t have “the luxury of time” to wait.

Heisey’s husband, Brock Winterton, and Linda Molyneux, whose son has MS, are running for two of the five spots up for grabs on the charity’s board of directors this Friday, with the intent of bringing the therapy to the forefront of the society’s agenda, if they’re elected.

Winterton and Heisey said there is little support among the board’s 13 current members for the treatment, citing a lack of information on chronic cerebrospinal venous insufficiency, or CCSVI, a condition that could be linked to the debilitating disease, the most common neurological ailment among young people in Canada.

The society has 28,000 members, but only a small percentage typically take part in board elections.

Should Winterton and Molyneux garner enough votes to join the board, their aim would be “to see the MS Society encouraging provincial health boards to allow people with informed consent to go head and have this kind of procedure,” said Winterton.

“The reality is that this discovery is the first time that there has ever been hope for MS sufferers,” said Heisey, who’s been diagnosed with the condition for 29 years.

“MS was, before now, an inescapable, slow decline.”

Employing balloon angioplasties in MS patients was first used in 2008 by the Italian vascular surgeon, Dr. Paolo Zamboni, who coined CCSVI.

His initial study found that 73 per cent of patients who underwent the procedure reported a decrease in the symptoms associated with MS.

The results are indeed promising, but the MS Society has maintained that more research needs to be done before it can recommend the treatment.

In an e-mail sent to society members Friday, Ontario board member Valerie Hussey wrote that “Dr. Zamboni’s claims needs a great deal of further research, something the MS Society supports.”

Hussey urged members to vote for the current board members up for re-election instead of “supporters of CCSVI (with) a desire to push a single agenda to the forefront of the Society. The MS Society functions on well balanced principles: support to people living with MS, and research to find a cure. If those who believe that CCSVI is a cure and should be the primary or only agenda for the MS Society are able to assume a strong position on the National Board, it could have very serious implications for MS research broadly and services to people with MS.”

Winterton said he disagreed with the characterization in the e-mail.

“People with MS don’t have the luxury of time,” he said. “We’re not saying that this is a cure or a panacea, (we’re) just encouraging governments to allow this procedure to be done on the people who want it done.”

And Heisey is resolute in pursuing it.

“I’ve had it for 29 years,” she said.“There is no question in mind that I want to do this. I am a very informed consumer. I’ve researched the issue a lot and all I have to do is hear about the incredible success stories to want to try it, whether or not the results are positive or not.”

Heisey said she considers herself lucky that her condition isn’t worse after nearly three decades.

She said her right side is very weak. She’s unable to raise her right foot, and must use a cane to get around. Without treatment, she said, she’ll likely be in a wheelchair in a year’s time.