Kirsty Duncan is a Liberal member of parliament (Etobicoke North) and critic for the Environment. She has a Ph.D. in geography (University of Edinburgh, 1992) and has taught meteorology, climatology, and climate change at the University of Windsor, corporate social responsibility and medical geography at the University of Toronto and global environmental processes at Royal Roads University. She served on the Intergovernmental Panel on Climate Change, an organization that won the 2007 Nobel Prize with Al Gore and is the author of Hunting the 1918 Flu: One Scientist’s Search for a Killer Virus (University of Toronto Press, 2003), and Environment and Health: Protecting our Common Future (2008).

Politics has been played with the lives of 55,000 to 75,000 Canadians living with multiple sclerosis (MS) for two-and-a-half years.

In May, 2010, the Minister of Health ignored my colleague, Dr. Carolyn Bennett, and me when we wrote an open letter asking for clinical trials for chronic cerebrospinal venous insufficiency (CCSVI) and a registry. The Minister then ignored the leading experts in the world on CCSVI, who asked for clinical trials at the Subcommittee on Neurological Diseases. A registry was then denied in 2010 because it was “outside the mandate”.

The government then failed to invite the leading international experts in CCSVI to a joint meeting of the Canadian Institutes of Health Research (CIHR) and the Multiple Sclerosis Society of Canada (MSSOC) which was held on August 26th, 2010, where the government did invite those who publicly criticized the validity of CCSVI, despite their bias.

The government failed to attend international scientific conferences, failed to undertake site visits to labs and operating theatres, and blindly accepted a handful of studies. The government also failed to review a large body of research extending back to 1839 regarding vascular links to MS. It was a cursory review at best.

By the time of the August 2010 meeting, eight provinces and territories were pushing for action on CCSVI, yet behind closed doors at the meeting there was a unanimous decision not to undertake clinical trials, despite the fact that both the presidents of the CIHR and the MSSOC were present and had previously advocated for them. The process failed Canadians with MS and failed to meet the standards of the Canadian health system.

The government then put in place a Scientific Expert Working Group who had no scientific expertise or experience in CCSVI, whose members did not even declare conflicts of interest, who did not even undertake a comprehensive literature review, and analyzed interim and final results from seven Canadian and U.S. MS societies’ funded studies, for which we already had answers.

In March 2011, 10 months after our initial request, the government reversed its position and announced a registry for MS. The registry was to start in July 2012, then September 2012, and still we have no registry. Since when do scientists fail to collect data? It is wilful blindness.

Before my Bill, C-280, had its second debate in the house, I again invited all MPs and Senators from all parties to attend a breakfast on February 14th, 2012, with leading doctors who treat CCSVI. I invited all parties because CCSVI is a non-partisan issue; it is a humanitarian issue.

On February 9th, the fair and balanced “MS Wars” aired on “The Nature of Things.” It included testimony from Dr. Gianfranco Campalani, a vascular surgeon, who has seen marked improvements in his MS symptoms following treatment, and who said, “It is unethical for doctors to deny treatment to those with CCSVI”.

The very next day, on Friday, February 10th, the Minister of Health announced a briefing on MS at 5:30 on February 13th to pre-empt my breakfast on February 14th by a mere 14 hours, with, according to a leader of one political party, “the sole purpose of killing” Bill C-280.

On February 17th, the Minister then sent a letter to all MPs attacking the bill. On February 27th, just two days before the vote, the president of the Canadian Medical Association (CMA) suddenly decided to oppose the bill in a letter. It was extremely odd, considering that Senator Jane Cordy’s Bill S-204 (the same bill as C-280) had been in the Senate since June and my bill had been in the House since September.

Bill C-280 was defeated by a mere six votes on February 29th. The Minister of Health used the letter to sway her Conservative colleagues and supporters of the bill at caucus on the morning of February 29th. When I invited the president of the CMA to meet with Senator Cordy and me on March 6th, he had no idea how he came to write the letter of February 27th, had no idea three safety studies involving over a thousand patients had been done, had no idea regarding the challenges of follow-up care in this country, admitted that lack of care was wrong, and that CCSVI was being treated differently than other new medical treatments, such as kidney denervation.

Today, all Canadians with MS have is an announcement for clinical trials, although as of last week there is, at last, a start date for recruitment for a small Canadian clinical study. The reason for last week’s announcement was more politics with the lives of Canadian MS patients—namely, to shut down debate on Senator Cordy’s Bill S-204.

It is appalling that, if this country is committed to patient-centred care, those who suffer with MS are being denied the opportunity to orally testify in front of the Senate Social Affairs, Science and Technology Committee. It is also offensive that known Canadian expert, Dr. Sandy McDonald, the surgeon who has undertaken the CCSVI procedure on seven Canadians, who has two peer-reviewed articles on CCSVI, and who has imaged over 1,000 MS patients, is also not allowed to orally present. Why is the government shutting down important voices?

Bill S-204 calls for much more than the government has offered regarding clinical trials. Today there is no national strategy for CCSVI, and there is no proper health care for a person following CCSVI treatment. Patients are turned away from hospitals, turned away from their doctors and told to return to the treating country. Patients are cancelled by their treating neurologists, have their appointments cancelled, and have their driver’s licence revoked should they dare pull out of drug trials. Today, Canada is not at the forefront of research; Phase III trials are currently under way elsewhere. Today, the advisory panel is not composed of experts in diagnosis and treatment.

Tragically, this debate was never based on science as it should have been, but rather wilful blindness, medical politics and collusion with special interest groups.

The government has grossly mishandled the CCSVI file. For details, readers should study investigative journalist Anne Kingston’s article “The silent treatment”, as well as her most recent blog, “Finally, CCSVI clinical trials. So why is everyone so pissed off?” I therefore have a motion on the Order Paper calling for the House of Commons Standing Committee on Health to investigate.

The Senate Committee has the opportunity to finally set Canada on the right course by serving the best interests of MS patients. The Committee must ask tough questions — such as how a government approves an MS drug known to cause a fatal brain infection, yet denies a procedure practised daily in hospitals across this country — rather than read prepared questions meant to protect the government’s position.

Canadians with MS are waiting. They are becoming sicker, and some are dying.

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