This Is MS Multiple Sclerosis Community: Knowledge & Support

Press Release: Chronic Cerebrospinal Venous Insufficiency

WireService.ca Press Release - On Thursday, April 19, 2012, The Ottawa Citizen published an article by Sheila Dabu Nonato about the government’s announcement on clinical trials for CCSVI (Chronic Cerebrospinal Venous Insufficiency). Ms. Nonato noted in her article that “At least two Canadians have reportedly died overseas from complications of the procedure, which is unavailable in Canada.”

Ms. Nonato is correct, two Canadians have died. The first was Mahir Mostic. Mr. Mostic was treated for CCSVI in Costa Rica in June 2010. The day following the procedure a treated vein collapsed and the vascular surgeon agreed to insert a stent. Mr. Mostic was doing better after returning home to St. Catharines. However, his symptoms came back and he was rushed to St. Catharines’s General Hospital where he was refused follow-up care. Mr. Mostic returned to Costa Rica to have a blood clot in the stent removed. Mr. Mostic reacted to the blood thinning agents used to try to remove the blood clot and died on October 19, 2010 in Costa Rica. We believe Mr. Mostic's death was preventable if the follow-up care all levels of government claim is available had actually been available to Mr. Mostic.

The second Canadian to die was Marylan Clarke. She was treated for CCSVI in April 2011 in California. She died shortly after the treatment from a subdural hematoma (bleeding on the brain). This type of bleeding can be caused by something as benign as taking a low-dose aspirin.

These are the facts about the deaths of Mr. Mostic and Mrs. Clarke as we know them.

We also know that Tysabri, an MS disease modifying drug, as of April 5, 2012, has been linked to 232 confirmed cases of permanent brain infection and 49 deaths. The MS Society lobbied the Government of Ontario to fund Tysabri despite knowing the risks involved. Gilenya is another MS disease modifying drug and, to date, has been linked to 11 deaths. Both these drugs are prescribed for Canadians with MS by MS neurologists usually affiliated with an MS Clinic.

Statistics Canada maintains data on the causes of death due to diseases of the nervous system. According to data from Statistics Canada more than 400 people a year die from Multiple Sclerosis: 2004 – 423; 2005 – 428; 2006 – 433; 2007 – 468; 2008 – 462. Data for 2009, 2010 and 2011 was not found.

When the MS Society, the MS neurologists, the Minister of Health and the President of the Canadian Institutes for Health Research, maintain that balloon angioplasty must be determined to be safe for Canadians with MS, one has to wonder if it is safe for Canadians at all. To date over 30,000 people have been treated for CCSVI in 60 countries. We do not know how many Canadians have been treated or the outcomes of the treatment because the government and the medical community do not collect data from these Canadians. Indeed, it seems that very few MS Clinic neurologists are even willing to acknowledge improvements that their patients experience.

We do know that there are more deaths from multiple sclerosis each year and more deaths as a result of the disease modifying drugs prescribed for Canadians with MS than the deaths following treatment for CCSVI.

CCSVI Ontario (515 members)