Press Release: Open Letter to Colin Carrie

Dear Mr. Carrie,

We watched the debate on Bill C-280 that took place yesterday in the House of Commons. We take issue with several comments that you made in speaking for the Government on Bill C-280.

We take issue with your claim that Canada is leading internationally in CCSVI research. That simply is not true. Canada is lagging far behind other countries such as the United States, Poland, and Bulgaria. We recommend that you conduct some research yourself into what is being done in other countries and report back to the House with facts. We are sure that Dr. Duncan would be willing to help you since you also stated that you want to work together with other members of the House.

We take issue with the way you have twisted the facts regarding Dr. Zamboni’s call for more research and the recommendation of the U.S. Society of Interventional Radiology (SIR). Dr. Zamboni called for more research in 2009. SIR called for more research in 2010 and since then Dr. Gary Siskin and Dr. Kenneth Mandato, members of SIR, conducted a study on the safety of balloon angioplasty in the treatment of CCSVI and Dr. M. Mehta has conducted a study on the efficacy of the treatment. What has Canada done? Who are the international experts who you claim are urging the government to move cautiously?

We take issue with the inference you made that two deaths are a result of the treatment for CCSVI. Please provide the data you have to support this claim.

We take issue with your claim that the government has established a panel of experts to advise on CCSVI. Please provide details on the expertise the members of this panel have in testing and treating CCSVI. For example, how many Doppler ultrasound tests has each performed? How many MRV tests, using the Haacke protocol, has each member performed? How many treatments for CCSVI, using balloon angioplasty, has each member performed?

We take issue with your claim that the treatment for CCSVI is a treatment for MS. CCSVI describes a vascular condition characterized by venous abnormalities in the veins that drain blood from the brain. CCSVI may or may not be a cause of MS. However, studies, conducted in other countries, have demonstrated that correcting these venous abnormalities with balloon angioplasty improves the quality of life for many Canadians with MS by reducing or eliminating some MS symptoms.

We take issue with your claim that the safety of balloon angioplasty must be established for treating CCSVI. We should not have to point out to you that balloon angioplasty is a standard of care in Canadian hospitals and is used on veins as well as arteries. Please advise why the government believes that balloon angioplasty is dangerous for Canadians with MS but perfectly safe for Canadians who do not have MS.

The fact is that Canadians with MS have the right to choose a medical treatment in consultation with a doctor of their choice. Canadians with MS are currently denied that right and your government appears to condone this discrimination. Consequently, Canadians with MS are forced to become medical refugees. At great personal cost, they must seek treatment for a vascular condition in other countries when they should be able to access that treatment in Canada.

CCSVI Ontario

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