EMC News - A group of about 70 Multiple Sclerosis sufferers and their families staged a quiet and respectful rally on the steps of the Parliament Buildings on May 5, calling on the federal government to allow research into the treatment of MS with venoplasties - the 'Liberation Treatment' offered in other countries that has given many sufferers their lives back.

The crowd, many in wheelchairs, others holding signs, were not visibly angry like most demonstrations seen on the Hill, rather, they were exhausted and frustrated with their country's inexplicable inaction on the matter. Many - those who could afford it - had travelled to the United States to have the fast and relatively inexpensive procedure performed, and now want the government of Canada to make the procedure available within its borders.

The treatment involves opening constricted veins (via balloon or stent) in the neck that drain blood away from the head - a condition known as Chronic cerebro-spinal venous insufficiency (CCSVI). Many MS sufferers have been found to have compromised blood flow in these veins, which would impact the body's central nervous system.

The Canada Health Act doesn't cover the procedure as it is not approved in Canada, nor is the country conducting research into the efficacy of the procedure, despite the fact venoplasties have been performed on other blood vessels in the body for years (and are covered by the CHA for those non-MS applications).

However, increasing numbers of desperate Canadians are crossing the border to have the procedure done as a last resort to stop the increasingly debilitating symptoms of MS.

The Hill marchers united their voices with those attending other marches - especially one at Queens Park the same day - in the hopes of being heard by their government.

"From my perspective, and from the perspective of many other people, the things that have been done by the federal government are inadequate - they just don't cut the mustard," said Ottawa resident Andrew Katz, speaking with some difficulty from his wheelchair.

"What we are asking for is actually quite simple - we're asking for testing, proper testing, we're asking for treatment too, and we're asking to be looked after afterwards...(the situation) is not improving, not at all."

Bart Bakker was not in a wheelchair, but feared that he would one day be confined to one if not treated. Diagnosed with MS five years ago, he recently found out (after driving to Barrie for a few-minute exam) he meets four out of the five criteria for CCSVI. Upon his return, his doctor wouldn't agree to send him to a vascular specialist for an official diagnosis.

Paying for a treatment in the U.S. is out of the question.

"I need to find a way to get my blood circulating again," he told the EMC. "I need to find a way to restore myself."

The Liberation Treatment remains controversial even though CCSVI is recognized as a legitimate medical condition. However, the link between CCSVI and MS symptoms has not been proven, even though research has found that a high number of MS sufferers have the narrowed or blocked veins described above.

Advocates state they aren't looking for a cure, just an effective treatment, and if the procedure alleviates symptoms of MS by treating CCSVI, then what's the problem? Currently, MS sufferers are treated by neurologists and prescribed medication to treat symptoms, but with serious side effects similar to chemotherapy.

"It's amazing how when you're (being treated) in the field of neurology, they don't want to open the door to other possibilities," said Bakker. "The only way we can move forward is if we have hope."

Bakker said the current drugs are mostly ineffective in treating symptoms and have a dose limit, as well, the seriousness of the side effects cancels out any gains to quality of life. He doesn't understand skeptic's focus on the risks of the Liberation Treatment, when the multitude of drugs available for treatment carry similar, if not worse, risks.

The march on the Hill didn't go unnoticed by elected representatives.

In attendance were Kanata North Coun. Marianne Wilkinson, Ottawa-Orleans MP Royal Galipeau, and Leeds-Grenville MP Gord Brown.

"This is a very important thing," said Coun. Wilkinson. "All of us who don't have MS, and I'm lucky enough not to, know people who do. Our city manager (Kent Kirkpatrick) has MS, and he's still able to operate but I see the difficulties that he sometimes go through. People in my church have MS, and I've seen how they change over time with this disease. The more we can do to find ways to improve your lives - even if it is not a permanent cure - if it improves your life, it's worth doing...I wish you luck in what you're doing, and I'll be raising this with my council colleagues and some of the provincial members of parliament to see if we can get at least some start of trials in Ontario. If we don't do something, we'll be falling behind the rest of the world."

Brown recalled sitting, along with his riding's provincial representative, in the kitchen of a constituent who suffered from MS, listening to her story for two hours.

"We need to make more politicians aware, provincially and federally, about CCSVI... We're now seeing some provinces that are undergoing clinical trials and the federal government has taken action. Two things have happened - the government announced back in March about the new monitoring system that will also include CCSVI, and it was during the campaign that the Prime Minister announced an additional $100 million towards brain disease research. These are some positive things that are happening, and may not have happened without the efforts of all of you."

Galipeau came to the Hill May 5 because he was invited - an invitation he thanked organizers for.

"The Canada Health Plan - a wonderful gift that Mr. Pearson gave us in 1965 - was financed from '65 to '95 fifty-fifty. 50 cents on the dollar paid for by the government of Canada each year for 30 years. In 1995 - just like that - the funding from the federal government for health care, which is administered by provinces, just like that funding was cut from 50 cents on the dollar to 14 cents on the dollar. In the last five years, incrementally, we have increased that funding from 14 cents on the dollar to 27 cents. In the last budget in March - which Parliament didn't get to vote on, but that will come soon - there is a department in there about more funding by the federal government to the provinces for increased health care. Increments of six percent a year for each of the next four years. Soon we'll be back at the 50 cents where we were. We're here, and we're listening, and we're getting it done."

He added, and stressed, "Make sure that at the provincial level, when they receive this federal money, that they also hear your voice."

Rebecca Cooney, founder of the 600-strong MS Liberation group (www.msliberation.ca), was in attendance as well. She organized the rally on the Hill and is working with the all-encompassing national organization Angioplasty For All in their efforts to sue the Ontario government.

Cooney had done extensive research on CCSVI and has testified at the Subcommittee on Neurological Disorders on the Liberation Treatment's efficacy. She underwent the procedure but the benefits were undone as the stents used to hold open her veins became blocked with blood clots - clots that haven't been cleared out due to delays in administering clot-busting drugs commonly prescribed to stroke patients.

"Now it's too late - if it was done early, there'd be no problem," she said, adding that she's been forced to go back on medication and disability. "Think of the cost to the country now. We need to get treated and tested in Canada - I paid $20,000 in the United States to have the 45-minute angioplasty done, but most people with MS can't afford that, most are on ODSP."

Cooney describes her daily life as being "an 85-year-old woman trapped in a 40-year-old woman's body," a process that only took two years, she said.

Sharon Taylor, who attended with her husband James and sons Jordan and Nicholas, said she's doing good after having a follow-up ballooning in her left jugular vein due to a blockage.

"I'm doing great - I don't nap, my fatigue is gone, my cognitive function is good, and I use my cane very infrequently," she said.

Her husband spoke at the microphone on her behalf that day, describing the profound changes in his wife following the treatment that has given her a life again, after 11 years of increasing disability. Taylor has joined the cause since receiving the treatment, lending her newfound time and energy to organizing advocacy events in Ottawa.

"It's ridiculous," she said of the struggle MS sufferers have to go through. "It's an unbelievable fight."

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