Thursday January 18th 2018

MS study a waste, says CCSVI group

A new web-based study launched by the Alberta government has some concerned that three years is being wasted before the CCSVI (chronic cerebro-spinal venous insufficiency) treatment can enter clinical trials.

The Alberta Multiple Sclerosis Initiative (TAMSI) comes with a $1 million price tag. An online survey funded by Alberta Health and Wellness, it’s designed to gather more information about people who are living with MS.

“The observational study is absolutely a critical precursor to the clinical trials,” said Gene Zwozdesky, Minister of Health and Wellness. “We can’t help you if you can’t help us gather the information that experts say is still missing.”

The procedure, pioneered by Italian doctor Pablo Zamboni, involves a widening of the veins in the neck, which allows more blood flow to the brain. It’s commonly done for stroke patients.

Zwozdesky said questions surrounding the lasting effects, effectiveness and cost need to be answered before moving forward.

Debbie Golden, president of the CCSVI Society of Grande Prairie and District disagrees.

“They have the evidence out there; they don’t have to do this observational study,” she said. “It’s a waste of $1 million in taxpayers’ money and more importantly, it’s a waste of three years of an MS patient’s life.”

MS is an autoimmune disease that affects the brain and spinal cord. People can experience up to 20 different symptoms, each of which vary in severity.

While the procedure isn’t available in Canada, it’s offered to MS patients in clinics around the world. With travel and medical expenses costs range from $10, 000 to $15,000.

Pastor Wes Brown of Spirit River was diagnosed with MS in 1999. He’s had the procedure done twice and believes Canada is “leading the world in caution.”

“All this hype about it being experimental and dangerous, I think it’s just an excuse,” he said.

When Brown decided to have the procedure done in Mexico, there was no waiting list.

“In Canada, we have waiting lists. What I call real health-care, you go and pay for what you get right away, and there is no wait,” Brown said.

Brown’s energy, balance and strength were all improved, something that his MS medication has never achieved.

“This is the only treatment that comes along in the 15 years that rolls back your symptoms. I felt like it took me half way back from where I was.”

Michelle Jones travelled to Costa Rica in 2010 for the procedure and recalls feeling different minutes afterwards.

“Immediately, even on the recovery table, I noticed a difference in my hands. The numbness was gone.”

Jones’ balance and circulation greatly improved. Now that the effects are starting to falter, she’s worried that the veins might have once-again closed off.

She’s having the treatment again, this time at the Synergy Clinic in Costa Mesa, California. It’s the same place where Stacey Hodgins will undergo the procedure today.

Hodgins has four children and since her diagnosis in 2004, her symptoms have gotten much worse, especially in the last three months.

“I have headaches every day; they never go away. I can’t handle heat well, so I don’t leave the house much,” she said, adding that leg weakness is a big problem for her.

It took some time before she decided she wanted to get the CCSVI treatment, but at a certain point, she said she had to try something.

“It feels like you’re giving up a part of yourself. It’s your independence,” she said. “After I have a shower, I’m drained because I’m so weak. (My daughter’s) only 11, she shouldn’t have to do her mom’s hair.”

Both Hodgins and Jones feel the web study is a waste of three years.

“We don’t have time on our side,” Hodgins said.

“The sooner it can be done, the better,” Jones added. “What would it be like if I would have had this done 15 years ago, with less nerve damage?”

Despite their personal feelings, Brown and both women said they’d participate in the study.

The federal government is committed to start clinical trials once safety and ethics approval are granted.

“They’ve pledged to be there and so have we. We’ve allocated $67 million out of the health and wellness budget to proceed with clinical trials once we’ve gotten the approval,” Zwozdesky said.

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