Ms. Kirsty Duncan (Etobicoke North, Lib.):
Madam Speaker, MS patients are deteriorating and their frustration is growing,
further hurting their disease. There is only one thing worse than
having devastating MS, and that is knowing the liberation procedure
might improve quality of life and being denied access to trials.
The parliamentary Subcommittee on Neurological Disease had four meetings with the world CCSVI experts,
including Dr. Zamboni, who said the diagnosis and treatment of CCSVI
were safe, had resulted in significant improvements in the qualify of
life of many MS patients and that clinical trials were needed.
While I personally met, spoke with and reviewed data with leading CCSVI researchers internationally,
including Dr. McDonald, the only Canadian who has been trained by Dr.
Zamboni and has performed the procedure in Canada, and Dr. Haacke, a
world leader in diagnostic imaging, the government actually refused to
listen to the subcommittee experts. Our committee heard from the best
and brightest.
Is this a new trend, as people at the August 26 meeting also refused to listen to experts, supposedly
for fear of biasing the sample? Yet two witnesses had previously spoken
vehemently against the procedure.
There was important pertinent information that the August 26 reviewers missed, possibly 25 different
venous abnormalities in the neck and chest, including missing jugular
veins, truncated jugular veins at the clavicle, in the middle of the
neck, spider veins, stenosed veins, string-like veins, imaging of iron
deposits in the brain, video of reflux in the deep cerebral veins, the
internal jugular veins and flow or lack thereof in the internal jugular
veins. MS patients with primary and secondary progressive disease can
also experience an improvement in brain fog, circulation, fatigue and
motor skills.
Patients do not want to wait possibly two more years for the results of seven correlation studies. MS
patients have done their homework and know that researchers from
Bulgaria, Canada, Italy, Kuwait, Poland and the United States are all
presenting similar results, namely, that 87% to 97% of MS patients show
venous abnormality.
Patients want clinical trials. MS patients know 3,000 procedures have been done worldwide and
understand the hypocrisy that after just 27 procedures with a stroke
sucking vacuum, the vacuum was deemed safe enough to implement in 10
Canadian hospitals.
The government should know that its August 26 ruling, based on the narrowest possible review of science,
is already forcing desperate MS patients overseas. What assurances do
Canadians have that they are going to a reputable clinic with
adequately-trained people who have undertaken a sufficient number of
procedures and what follow up is available to Canadians, as many must
often return overseas?
The government should also be aware that some doctors are refusing to treat their patients upon their
return. I am hearing from patients across the country that their
appointments are being cancelled and not re-booked, liver tests for MS
drugs are being cancelled and several have been threatened with, “No
doctor will treat you should you develop a blood clot”. This is illegal
and unethical.
I implore the government to do its job, which is undertake what it failed to do this summer. Science
can only progress through reviewing all of the available evidence, from
meeting and speaking with those engaged in the science and treatment, to
asking if they are willing to share their expertise and results, to
reviewing the published material, to doing site visits to labs and
operating theatres and to come to a conclusion based on evidence, all of
the evidence. The longer the delay, more will sicken and die.
Mr. Colin Carrie (Parliamentary Secretary to the Minister of Health, CPC):
Madam Speaker, I am very pleased to have the opportunity to discuss multiple
sclerosis and the way in which new research and actions can give hope to
Canadians living with multiple sclerosis.
MS is a devastating illness, usually striking young adults who may lose the ability to move and speak throughout the course of the
illness. Canada has one of the highest rates of multiple sclerosis in
the world. Every day three more people in Canada are diagnosed with MS.
It is with the goal of alleviating the suffering of Canadians with MS that the Government of Canada has invested, through
the Canadian Institutes of Health Research, CIHR, over $49 million to
date on MS research. It is through investments in research and
innovation that our best hopes lie in improving treatments and someday
soon finding a cure.
On August 26, CIHR, in collaboration with the MS Society of Canada, convened a meeting of leading North American experts in MS to
discuss these priorities. This expert meeting reviewed the evidence,
including the potential links between chronic cerebrospinal venous
insufficiency, or what is referred to as CCSVI, and MS. The unanimous
decision was that it would be premature to support pan-Canadian clinical
trials on the Zamboni procedure.
Just last week at an MS conference in Gothenburg, Sweden, Dr. Zamboni himself indicated very clearly that more research is needed
before patients proceed with this surgery.
We are currently awaiting the results of seven clinical diagnostic trials being funded by the MS societies of Canada and the
U.S., which are currently under way, before making a decision on whether
to support therapeutic clinical trials on the Zamboni procedure.
If the medical experts agree that there is sufficient evidence to warrant clinical trials, then our government will fund them.
Ms. Kirsty Duncan:
Madam Speaker, I am personally in touch with over a thousand MS patients across Canada. Where is the
government's registry? I have a list of over 170 who have been
liberated.
I absolutely appreciate that those having a positive response are more likely to come forward and
would never want to hope-monger but just provide facts.
One patient was in palliative care on a morphine pump, immobile, could only whisper and was not
expected to live for more than a few weeks. The night of the procedure
her husband said in an email, “I can feel a faint squeeze. She can
wiggle her feet, brain fog gone. Feeling more energy”. Two months later
he said, “She is long off the morphine pump, she can sit on the bed
supported by her hand. She can move her knees, legs, head, neck and her
right hand and arm are coming back”.
This is just one of my 170 cases who have been treated. The government needs to give them a chance, to
do clinical trials. There is the evidence to do clinical trials and to
create a registry. MS patients are waiting.
Mr. Colin Carrie:
Madam Speaker, my thoughts go out to all who suffer from MS. We are moving as quickly as possible
based on the best available science. We have established a scientific
expert working group to monitor and analyze results from the seven MS
Society sponsored studies already under way in Canada and the United
States.
This year the CIHR has invested $5.4 million specifically for MS.
If the experts advise in favour of clinical trials, our government working with the MS Society and provinces and territories
will ensure they are funded, again based on the best available science.