linkBarre google de traduction indispensable! Firefox a planté deux fois en cours de rédaction!
Urge politicians to fund treatment trials
Good morning everyone. We are pleased to announce that we have received WIRB approval for our Blood Flow Study! We ask that you please hold your calls. We are finalizing the content and will it have it online today.
Kirsty's Inspiration, this is one lady that will not give up on us!!
Her comments today in parliament, some people are worth everything, there are no words to express my gratitude:-)
Madam Speaker, Canadians living with multiple sclerosis are fighting their disease and fighting for clinical trials for the new liberation procedure for chronic cerebrospinal venous insufficiency, or CCSVI.
We had a parliamentary subcommittee on neurological disease that heard four hours of testimony from the leading researchers in the world on CCSVI, including Dr. Zamboni, who pioneered the liberation procedure, and Dr. Simka, who has undertaken the most procedures globally. These researchers indicated that, according to their initial studies, both the diagnosis and treatment of CCSVI were deemed to be safe and have resulted in significant improvements in the quality of life of many MS patients.
Instead of listening to the leading researchers internationally, the government chose to accept the recommendations of a panel, held behind closed doors with no minutes. Why were only nine papers reviewed? Why were no leading experts called for their expertise? Where was the scientific rigour in making sure panellists were not biased?
At the end of July, I travelled to New York to learn the latest science at an international symposium for CCSVI. Researchers from Bulgaria, Italy, Kuwait and the United States were all presenting similar results, namely that 87% to 90% of MS patients show venous abnormality. Of the 400 cases reviewed by Canada's Dr. McDonald, 90% show a venous problem.
We need evidence-based medicine in Canada. The question I have is why have we not been collecting it? There are two ways to collect evidence and we have been calling for both: clinical trials and a registry. When I spoke to a high-ranking official in July, I was told a registry was not possible because “we have no idea what is being done overseas”. I explained that it was not exactly true. For example, in Poland, each patient is seen by a neurologist and has an MRV, a Doppler scan, and an eye test. Before-and-after liberation photos are taken, and during the actual procedure there is video. Finally, a long, complicated form is filled out, including EDSS scores.
It seems to me as a scientist that there is data to be collected.
I would like to identify some incongruities. Over the last four decades, only 7% to 20% of surgeries performed in hospitals have ever been double-blind tested, yet detractors of the liberation theory are insisting on sham surgeries in some of society's most vulnerable.
Often in medicine, when a treatment shows promise, it is fast-tracked. A recent example is a new device that can suck out stroke-causing blood clots. Very quickly, 27 patients across 10 hospitals were rescued from strokes by the device.
Over 1,500 liberation procedures have been performed worldwide, yet we are told there is not enough evidence for clinical trials in Canada.
As an example from MS, a few years ago a drug that was known to cause a fatal brain infection was fast-tracked, and 68 people have acquired the infection and 14 have died. Yet there is the hesitation to undertake clinical trials for angioplasty, a procedure undertaken daily in hospitals across this country.
I am in touch with over 1,000 MS patients across this country. I have a list of over 150 people who have been liberated. One toddler said, “My mommy's not broken anymore”. One woman who was a quadriplegic is now writing.
I am also in contact with physicians who themselves have been liberated. As one explained, “My province allowed me to practise for decades, but after liberation, I cannot even get a hearing”. He questions, “If we had collected the evidence in a registry for the last many months, would we still be calling this anecdotal stories?”
[Table of Contents]
Mrs. Shelly Glover (Parliamentary Secretary to the Minister of Indian Affairs and Northern Development, CPC):
Madam Speaker, I want to acknowledge as well that MS is a devastating condition. It affects young adults in their prime and it causes disability and distress. My heart truly goes out to all those who suffer from MS.
Our government does recognize the importance of better understanding neurological conditions, such as MS, and how they affect Canadians. Reliable information is the basis for effective programs and policies that will meet the needs of people with MS, their families and caregivers.
In June 2009 the Minister of Health announced an investment of $15 million over four years to support a national study on neurological diseases. This study will fill gaps in information on the extent of neurological diseases and their impact on Canadians and is being co-led by the Public Health Agency of Canada and the Neurological Health Charities of Canada.
The Neurological Health Charities of Canada is a collective of 18 charities, including the MS Society of Canada, coming together to improve the quality of life for all persons with chronic brain disorders and their caregivers. Health Canada and the Canadian Institutes of Health Research are also partners in this important work.
The Canadian Institutes of Health Research is committed to advancing our knowledge of multiple sclerosis and accelerating relevant research on innovation to prevent, diagnose and treat this devastating disease. A few months ago, the minister asked Dr. Alain Beaudet, the president of CIHR, to provide advice on how to advance research in this important area.
On August 26, CIHR, in collaboration with the MS Society of Canada, convened a meeting of leading North American experts to review evidence, including current international efforts and knowledge gaps. An emphasis was placed on the potential links between chronic cerebrospinal venous insufficiency and MS.
There was unanimous agreement from the scientific experts that it would be premature at this time to support pan-Canadian clinical trials on the Zamboni procedure. As such, Dr. Beaudet recommended that we wait for the results of seven clinical diagnostic trials, which are currently underway, co-funded by the Canadian and U.S. MS Societies. That is what they would like to do before making a decision on whether to support therapeutic clinical trials on the Zamboni procedure. Of the seven studies, four are Canadian and three are being conducted in the U.S.
If these seven studies show a link between blocked veins and MS, we then can ethically justify the risks involved with further investigating the procedure itself. We expect preliminary reports from these studies in less than a year. In the meantime, CIHR is bringing together experts to start looking at designing a clinical trial.
As the House knows, in helping Canadians maintain and improve their health, the federal government must work closely with the provinces and territories which are responsible for the delivery of health care in their jurisdictions.
The Minister of Health remains in close contact with her counterparts in the territories and provinces on a wide range of critical health issues. In fact, she just returned from the annual health ministers' meeting on September 14 in St. John's where she asked Dr. Alain Beaudet, president of the Canadian Institutes of Health Research, to provide an update on current MS research in Canada.
Canada is a world leader in MS research and will continue to lead the way. Anyone who has heard a first account of what an MS patient goes through on a day-to-day basis understands the urgency of moving forward. We will continue to give this important issue the attention it deserves.
We are all committed to a health care system that is evidence-based and, as such, we must allow this research to progress so that physician associations, medical experts and provinces and territories have the necessary evidence so they can form decisions that are educated.
Ms Kirsty Duncan
Madam Speaker, there is no treatment arm to those clinical trials.
It is becoming increasingly evident that liberation can alleviate some symptoms. MS patients who have had the liberation procedure seem to experience an improvement in brain fog, fatigue and circulation and, over time, some report a marked improvement in the quality of life.
Time is brain. Any delay in clinical trials possibly means more damage. The earlier MS is caught the better the prognosis. For some patients a delay of a matter of months may mean the difference between working and not working, walking and not walking, living on their own or in care, or living and not. This past week we lost another MS patient, 34 years old, with a five-year-old child.
Why the refusal to listen to CCSVI experts? Why the refusal to collect evidence? Why the refusal to lead when five provinces were calling for clinical trials? Why the delay?