The Reformed Multiple Sclerosis Society

The Reformed Multiple Sclerosis Society

September 07, 2010 09:00 ET

MS Activist Group Slams Ottawa for CCSVI Clinical Trial Rejection

VANCOUVER, BRITISH COLUMBIA--(Marketwire - Sept. 7, 2010) - Federal Health Minister Leona Aglukkaq was strongly attacked today by an activist MS group, The Reformed Multiple Sclerosis Society, for refusing to fund clinical trials for the treatment for CCSVI, Canadians continue to be forced to assume the risks and costs of foreign treatment for blocked veins.

ReformedMS head, Steven Simonyi-Gindele, questioned the legitimacy of the Canadian Institutes of Health Research's and the MS Society of Canada's joint report, upon which the Minister's decision was based.

"Their conclusions regarding CCSVI are flawed and biased. They nitpick testing methodology while ignoring the irrefutable test results and the living evidence of two thousand plus treated patients. The so-called panel of experts that were assembled for the August 26 meeting included no scientists or doctors with first-hand CCSVI experience. This was a kangaroo court whose members have major professional and financial conflicts of interest. They do not speak for MS patients and this decision proves that they are unmoved by the ongoing suffering of 70,000 Canadians," Simonyi-Gindele said.

He added that MS patient advocates were refused permission to attend the meeting, as were scientists and doctors with a recognized background in CCSVI.

"It is unethical and hypocritical to withhold from MS patients venography when the same treatment is legal to treat other indications. It is unconscionable to require MS patients to continue to suffer irreversible damage or to force them to seek foreign medical help when a simple, safe and inexpensive treatment is locally available. The Honorable Minister must allow MS patients to make informed decisions for themselves regarding treatment for CCSVI," he added.

Dr. Paolo Zamboni, who has pioneered the treatment of CCSVI, was also critical.

"Primary progressive MS patients do not have any available treatment at the moment, and venous angioplasty seems useful in treating their symptoms and improving the quality of their life," Zamboni said. "It is irresponsible to avoid clinical trials when there is no other treatment available."

Simonyi-Gindele said that his Reformed MS Society urges Health Minister Aglukkaq to reject the CIHR recommendation, and set up an independent group of advisors, whose livelihood and professional careers are not based on treating MS patients or doing MS research. "The Honorable Minister needs to hear unbiased opinion regarding the existing studies and to listen to the voices of the over 2,000 successfully treated patients whose testimony about the effectiveness of CCSVI would be accepted in a court of law. With 70,000 Canadians living in misery, and a suicide rate of 7 times the national average, fast tracking clinical testing is essential."

Contact Information

  • The Reformed Multiple Sclerosis Society
    Steven Simonyi-Gindele
    MS Caregiver and Founding Director