“Abdicating responsibility” is what she says the federal government is doing.

The Liberal MP and health professor held a press conference with Liberal MPP Aileen Carroll in Barrie Wednesday to talk about treatment for patients with multiple sclerosis that continues to fall under the realm of experimental and isn’t, for the most part, available in Canada.

Duncan, the federal politician, is part of the Opposition in Ottawa. Carroll, the provincial politician representing Barrie, is part of the government at Queen’s Park.

What they share is a political party and an issue that continues to float aloft without any indication of landing and taking firm root in this country.

Multiple sclerosis patients, which populate Canada more than just about any other country, often have a physical problem that can be repaired, relieving some of their symptoms, it was recently suggested. Until Italian Dr. Paolo Zamboni identified the problem, labelled it CCSVI (chronic cerebrospinal venous insufficiency) and identified a solution which he said worked on his wife and dozens others, MS remained a mysterious neurological illness.

Maybe shortened winter days with limited sunlight has something to do with the prevalence of MS in this country, goes one hypothesis. There’s been some research on the correlation of the lack of Vitamin D and MS. The Multiple Sclerosis Society of Canada has funded several other areas of research, including many aspects of the neurological impacts. And there are medications designed that don’t stop but inhibit some MS symptoms.

But real attention on Zamboni’s suggested cause and treatment has escaped the national framework on MS. The Canadian Institutes of Health recommended this summer not to bother with it until more information is available because it’s too premature. Federal Health Minister Leona Aglukkaq accepted the recommendation, deciding not to pursue the cause.

Meanwhile, hundreds of desperate Canadians are flocking to medical centres across the world, accessing the treatment which has been forbidden at home. They can get it “through the back door” in the United States, all over the place in India if the ads on the Internet are any indication. Kuwait is offering it to all of its residents with MS. Poland, Egypt, Italy, Mexico, Bulgaria are all destinations to which Canadians with MS have travelled to seek help, paying up to $10,000 and sometimes more.

The Liberal ladies said in Barrie yesterday this is all wrong.

For one, MS patients identified with CCSVI should be able to get what they want at home, if only through clinical trials, even if they have to pay for it for themselves. They also say we are missing the boat. Duncan figures 2,500 people have undergone the angioplasty procedure somewhere in the world since January. She says she’s been in contact with 1,000 Canadian MS patients, 170 have undergone angioplasty in another country. She figures if there was some sort of protocol to follow the impact of the procedure on the Canadian patients that have been treated, we’d all be further ahead.

Hope is at the core of this movement.

There had been previous consideration of MS having some sort of connection to the body’s vascular system, but Zamboni’s approach exploded to the fore with significant help from the Internet and social networking. He found a good portion of patients diagnosed with MS had blocked veins, often the jugular. And he found angioplasty, commonly used for heart patients, could do the trick to restore regular blood flow and ease some of MS’ nasty symptoms like cognition fog and inhibited movement.

Suddenly, there was something where there was previously nothing.

Patients with MS had been watching their bodies deteriorate, their movement diminish until they could no longer move. They have argued that time is not on their side. Every day presents risk and the likelihood of physical deterioration.

This hope MS patients harbour isn’t difficult to grasp. And for those able to access even some emotion, the hope isn’t difficult to feel. But access to this treatment continues to elude Canadians with MS. They can’t even be part of a study, because the research hasn’t reached the level of clinical trials yet in Canada.

And that, say the Liberal ladies, is where the system is flawed and Canadians are ill served.

“With 2,500 procedures done worldwide, why is that not enough evidence to suggest the need for clinical trials,” asked Duncan.

Right now MS patients have a glimpse of hope that previously didn’t exist. To dash it while the scientific community argues about the timing of the whole thing further exacerbates the problem. An alternative group to the MS Society has arisen, nonprofit groups for research and access to treatment have been developed. And politicians are pushing. There appears to be a great deal of energy on this issue, but it’s fractured and divisive. And unless patients with MS have the means to travel, they simply wait, hopefully.

http://liberationtreatmentccsvi.com/2010/10/liberal-ladies-lobby-for-liberation/