Madam Speaker, the government claims it has a moral and ethical obligation to work with the scientific and medical community and proceed only on the basis of the best medical and scientific evidence. The government has not pursued the best science or the leading experts and it has failed in its moral responsibility. The government has lagged every step of the way, despite the fact that 400 people die each year of MS in Canada and patients worsen, on average, by one disability score each year.
Twenty-one months have passed since our initial request for clinical trials. Since 2009, when treatment for CCSVI was first announced, 800 Canadians will have died from MS-related complications or suicide, while the government has ignored the science. Thirty-three months will have passed by the time the government implements a registry.
Sadly, I hear speeches loaded with highly questionable material from the government. Comments are scripted because no member of Parliament or government official ever attended one of nine CCSVI international conferences, never heard the data, never reviewed MRIs, never witnessed the procedure. As a scientist and health professor, I will have attended seven of the conferences by this weekend, presented at three, and spent close to 100 hours reviewing MRIs and watching the procedure. Those living with MS and their families understand that this debate was never based on science, as it should have been, but rather wilful blindness, politics and the government's self-preservation. I chased the science. Why did the government not?
The government makes the ridiculous claim that Canada is leading internationally, but this is absolutely not the case. The government has been lagging both the provinces and internationally. Sixty other countries are testing and treating CCSVI. The United States is currently conducting three FDA-approved phase II clinical trials, while the government just put out a request for a phase I/II trial.
The government made claims about the scientific evidence to support CCSVI, yet failed to acknowledge or present any of the international data regarding MS patients' improvements and quality of life following CCSVI treatment, nor the efficacy and safety of the procedure. For example, Dr. Petrov reports that 63% of his 461 patients show a functional improvement.
It has becoming increasingly apparent, from multiple countries around the world, that every patient is different, with different venous anatomy, a different course of MS, a different length of illness and some patients do experience improvement in symptoms. Dr. Mehta studied 150 consecutive patients who showed more than a 25% increase in quality of life scores a year after the procedure was measured by a doctor who did not know that the procedure had taken place.
The government claims that most of what I am asking for in Bill C-280 is already under way. This is absolutely not the case.
First, follow-up care remains a problem today and has not been adequately addressed. Patients are still being denied appointments and tests are being cancelled. Driver's licences are even being threatened if patients dare ask to pull out of drug trials.
Second, phase I/II trials will not put Canada at the forefront of international research.
Third, funding for trials has not been provided.
Fourth, there is no expert advisory panel in place with people who have actually done diagnosis or treatment. Importantly, as all members of Parliament and Canadians know, the dates can and will have to be amended at committee.
We have a duty to speak for those who cannot. This means listening to those who are awaiting CCSVI treatment, those who have had treatment and learning as much as we can about the science. Thirteen Canadian CCSVI patient groups, representing over 14,000 people living with MS, have written to the Prime Minister, the Minister of Health and all MPs asking that they support Bill C-280.
Finally, I ask my colleagues to be a true, honest voice for suffering MS patients and their families and to vote for Bill C-280. Patients say, “You know what the right thing is. Do the right thing”.