Dr. Kirsty Dunken sent me this tonight after she called me and we chatted again for a bit.......bless her.

Oct 19

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.

(1855)

[Translation]

[Table of Contents]

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.

[English]

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.

[Table of Contents]

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.

(1900)

[Table of Contents]

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.

I appreciate the opportunity to have spoken on this very important issue.

---

Oct 25

Ms. Kirsty Duncan (Etobicoke North, Lib.):

Mr. Speaker, last week, the Parliamentary Secretary to the Minister of Health
said:

I would like to address the seven correlational studies being undertaken, question the need to
replicate these studies and argue that there is in fact sufficient evidence to

warrant clinical trials in Canada now and that our government should fund them.

In countries around the world. evidence now exists that 80% to 97% of MS patients show one or more
venous abnormalities. This is higher than ultrasound or MRI because

angioplasty, the gold standard, was used. These studies were undertaken in

separate centres in space and time by separate operators and yet show similar

results. Why will the government wait another two years for repeat studies?

Time is brain in MS and patients cannot afford a two year delay. Thirty percent to 50% of MS
patients who are untreated worsen by one EDSS score in one year. Fifty percent

with relapsing remitting MS later develop a progressive form of the disease for

which there are no drugs, and up to two-thirds of patients experience cognitive

impairment, which can affect daily functioning, employment and social life.

There is a well-known rationale for supporting an association between MS and venous
obstruction, namely, MS plaques are venocentric, as identified by Rindfleisch

as early as the 1800s and Putnam in 1935 who said it was “...almost

inevitable that venular obstruction is the essential immediate antecedent to

the formation of typical sclerotic plaques”.

Increased iron content in plaques and vessel wall may be a biomarker of tissue damage and may
be caused by changes in vascular flow and increases in intracranial pressure.

There may be as many as 48 categories describing the types of vascular abnormalities in the
chest, neck and spine that have now been identified by Dr. Haacke, a world

leader in diagnostic imaging. These abnormalities include: stenosis in one or

more major veins draining the brain; truncular venous malformations; lack of

flow in one or more of the major veins; malfunctioning or stuck valves; reflux

in the deep cerebral veins or the jugular veins meaning that blood flood

actually reverses and travels toward the brain instead of draining to the

heart; and other abnormalities.

Astonishingly, one patient was actually born without jugulars, the deep cervical veins
substituted. In other patients the deep cervical veins and vertebral vessels

are almost non-existent.

Over 3,000 procedures have been undertaken worldwide in over 50 countries. More important,
neurologists are seeing their patients get better, with reduced brain fog,

fatigue and improved circulation and motor skills, as demonstrated through

improved EDSS scores.

As Dr. Zamboni, the pioneer of the technique, told the neurological subcommittee last June, the
diagnosis and treatment of CCSVI are safe, had resulted in significant

improvements in the quality of life of many MS patients and that clinical

trials were needed.

Why is the government refusing to undertake clinical studies? Why not follow Canadian
patients who felt forced to seek treatment overseas? Why lose this important

data? Why not lead instead of follow 50 other countries and yet refuse to ask

for their data and expertise? Most important, why ensure that Canadians be

subjected to devastating MS for at least another two years?

(1850)

[Table of Contents]

Hon. Laurie Hawn (Parliamentary Secretary to the Minister of National Defence, CPC):

Mr. Speaker, I want to sincerely thank my colleague for her question. I know she
cares about this deeply, as we all do.

It is a terrible disease that affects mostly young adults or is most often diagnosed in young
adults, aged 15 to 40. Thousands of Canadians are currently affected by this

debilitating disease and we probably all know someone. I know I do.

The disease does not just impact the patients. It also affects families, friends and colleagues
and can take an emotional toll on all those surrounding the patient.

Many patients, as was said, obviously face difficulties at work as the disease can affect vision,
hearing, memory, balance and mobility, making it often impossible to continue

active life in the workplace.

That is why the Government of Canada, through the Canadian Institutes of Health Research, has
provided over $49 million in funding to date on MS research. CIHR has provided

substantial funding to neurosciences and stem cell research, with many research

initiatives focusing on MS.

CIHR also funds a great deal of research in related areas such as vascular disease.

All of these investments are building our overall understanding of multiple sclerosis toward
more effective treatment and ultimately a cure.

One of the numerous research initiatives supported by CIHR is that of Dr. Brenda Banwell from the
Hospital for Sick Children in Toronto.

Dr. Banwell's research team has focused much of its research on the effects that MS has on
the developing brain. It is trying to determine whether childhood MS attacks

can create lasting deficits. So far, Dr. Banwell's research has revealed that

40% to 50% of children with MS have some cognitive difficulties, particularly

when it comes to multi-tasking and accessing short-term memories.

Dr. Banwell also hopes that the research at the SickKids clinic can help untangle the complicated
interaction of genetic and environmental factors that potentially cause MS.

The House of Commons subcommittee has heard many different witnesses debate the merits of
the recently developed chronic cerebrospinal venous insufficiency, or CCSVI, treatment

brought forward by Italian researcher, Dr. Paolo Zamboni.

It should be noted, however, that just a week and a half ago, at an MS conference in Gothenburg,
Sweden, Dr. Zamboni himself indicated very clearly that more research is needed

before patients proceed with surgery.

The Minister of Health and CIHR's president, Dr. Alain Beaudet, have been publicly encouraging
researchers to submit applications to CIHR funding programs.

In addition, through CIHR's Institute of Neurosciences, Mental Health and Addiction and
CIHR's Institute of Circulatory and Respiratory Health, the government has been

consulting the research community on Canada's strengths and how to best

contribute to the international effort to improve treatment of MS and evaluate

CCSVI.

On October 19, the Canadian Institutes of Health Research announced the establishment of a working
group of eminent scientists to review evidence and advise on a clinical trial.

The first meeting is currently being planned for later this fall.

The government is committed to working with the provinces and territories to responsibly
accelerate this scientific research. If the research shows that clinical trials

are both appropriate and advisable, the government will work with the provinces

and territories to ensure that they are fully funded.

Meanwhile, Health Canada and CIHR will continue to work with the MS Society of Canada to advance
safe, evidence-based research and innovation on this devastating disease.

[Table of Contents]

Ms. Kirsty Duncan:

Mr. Speaker, Dr. Zamboni's position has not changed. He said we need more research
and we need clinical trials.

Canada needs a registry and clinical trials that are undertaken in multiple centres across our
country and that are sufficiently powered. Diagnosis and treatment standards

must be established, including ultrasound and MRI, to identify any abnormality,

and other MRI techniques including flow quantification, iron content and venous

damage. And those undertaking the liberation procedure must be sufficiently

trained and practised, like Dr. MacDonald, to ensure the best results for the

patient. Patients must then be followed for efficacy, improvements in quality

of life, and side effects.

Based on the evidence, the fact that more trials are about to begin in the States, that
Saskatchewan is setting aside funds for clinical trials and that neurologists

admit their patients get better, will the government do the right thing and

support clinical trials for MS patients here in Canada?

(1855)

[Table of Contents]

Hon. Laurie Hawn:

Mr. Speaker, our thoughts do go out to all those who suffer from MS.

Just this year, through CIHR, we have invested $5.4 million specifically for MS research. 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 in

the U.S. The terms of reference for this working group, along with the names of

the Canadian members, are available on the CIHR website.

If the experts advise in favour of clinical trials, our government, working with the MS
Society and provinces, like Saskatchewan and others, and the territories, will

ensure they are funded.

We are committed to getting this right, but we really must get it right before we move ahead on
something that we have some confidence will work. We do have to be sure.