CANADIANS YOUR INPUT IS NEEDED BY FEDERAL GOVT. NOW!!!

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

CANADIANS YOUR INPUT IS NEEDED BY FEDERAL GOVT. NOW!!!

Postby Brightspot » Mon May 03, 2010 3:11 pm

On Thursday at 07:30 a.m. there will be a meeting in Ottawa of the PARLIAMENTARY SUB COMMITTEE ON NEUROLOGICAL HEALTH.

The topic is CCSVI

I understand that the main purpose of the meeting will be for the MS Society to request money from the government for lengthy studies regarding CCSVI and MS.

One independent Canadian Citizen will be speaking (for 5 minutes) about the urgent need for all Canadians at risk for CCSVI to have immediate access to screeening, and to the services of Vascular specialists to advise on any necessary treatment.

This lone individual will ask the committee to:

Notify provincial health authorities that it is a violation of the Canada Health Act to withhold vascular medical services from a group of individuals based on the fact that they have multiple sclerosis.

Advise the Canadian and Provincial Medical Associations that they must immediately advise their membership to cease the practice of discrimiating against persons with multiple sclerosis by denying them access to the services of vascular specialists.

Take immediate action to ensure that those most affected are offered immediate screening and treatment on compassionate grounds while tasking the researchers for the committee with a scientific review of all relevant vascular studies, to report back to the committee before the end of May.

The meeting is open to the public and the press.

More importantly

ANY INDIVIDUAL OR ORGANIZATION CAN MAKE A WRITTEN SUBMISSION TO THIS COMMITTEE.

PLEASE ADDRESS YOUR CONCERNS TO

THE PARLIAMENTARY SUB COMMITTEE ON NEUROLOGICAL HEALTH
CARE OF Christine Holke David, Clerk of the Standing Committe on Health
email HolkeC@parl.gc.ca

Let the committee know that the person speaking out is not alone in this matter.

Send a simple statement of your personal experience, a detailed explaination of the issue as you see it, or a report inclucing scientific references and links to articles.

SEND SOMETHING NOW!!!!
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Postby mangio » Mon May 03, 2010 3:28 pm

Done. Will C-Span be recording? I will contact if you think advisable?
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Postby Brightspot » Mon May 03, 2010 3:45 pm

I have no experience with parliamentary committee meetings.
As far as I know it will not be broadcast. Included in the information on committee meetings from the parliamentary web site is a room plan which has seating for public and press.
My understanding is that the press and public can attend and observe the meeting.

Thursday, May 6, 2010 from 7:30 a.m. to 8:30 a.m. in room 209, West Block for a Briefing Session on Multiple Sclerosis.
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Postby Niceflow » Mon May 03, 2010 4:12 pm

Thanks Brightspot, I will definitely write something tonight and email it ! Excellent oportunity !
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Postby Chrystal » Mon May 03, 2010 7:50 pm

Thank you, Brightspot!!!

Fellow Canadian MSers, please send your letters in now!!!!
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Postby Niceflow » Mon May 03, 2010 8:26 pm

I sent the following letter to the sub committee tonight:

Dear members of the parliamentary sub committee on neurological health,

First of all, thank you for taking the time to consider the subject of CCSVI. My name is .......... I live in Quebec. I was diagnosed with MS in 2000. My situation has been deteriorating since, and now I am at a stage where I have to use a walker at home and a four-wheel scooter to go outside.

I’ve been following the news about CCSVI (chronic cerebrospinal venous insufficiency) for a few months, and trying to get as much information as possible on the developments of studies, tests and treatments.

I feel strongly that all MS patients should be given the opportunity to be offered immediate screening and treatment, if needed, as well as access to the services of vascular specialists.

Many Canadian patients are traveling or about to travel abroad (including myself) to avail ourselves of such services, while spending thousands of dollars. We are taking risks to undergo surgery in foreign countries because we do believe that this treatment is yielding concrete results. Of course, research is essential, but time is of the essence for many of us, who are deteriotating very quickly.

Why should we go to foreign countries to avail these services? Why should Canadians be spending thousands of dollars for health issues outside of Canada? Why should MS patients be discriminated and deprived of vascular medical services based on the fact that they have multiple sclerosis?

This disease is already cruel and devastating, making our lives miserable. A definite breakthrough is there. The outcome of the “liberation treatment” is visible, concrete and real. So, please do something and allow those most affected to be offered immediate screening and treatment on compassionate grounds.

Kind regards,

......................
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Postby Chrystal » Tue May 04, 2010 7:32 am

Wonderful letter, Niceflow. Please pass on the word to others and let's try and get as many letters sent in pleading our case.

Take care and God Bless,
Chrystal
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Postby Stacemeh » Tue May 04, 2010 12:00 pm

Here is a copy of my letter, I think it is important to show them that we have done our homework and we are not just talking about one small clinical trial anymore. :D


Attn: THE PARLIAMENTARY SUB COMMITTEE ON NEUROLOGICAL HEALTH

Re: Chronic Cerebrospinal Venous Stenosis (CCSVI) and Multiple Sclerosis

C/O Ms. Christine Holke David

Historically vague associations linking the cerebral and spinal venous system to Multiple Sclerosis have been found. In fact researchers as far back as 1930 have speculated as to the potential involvement of the venous system in the formation of cerebral and spinal plaques known to occur in Multiple Sclerosis.

In more recent times a number of studies are beginning to come to light that once again draw attention to the possible link between the venous system and Multiple Sclerosis.

In brief:
-Drs Marre, et al in a study recently completed in Winnipeg found that vascular comorbidities are linked to increased disability in MS patients. PMID: 20350978

-Drs. Prineas and Barnett released a paper detailing histopathological work where they found that immune system involvement is not apparent in early stages of lesion formation and speculated that build up of a toxic substance(s) (which could be due to poor venous flow) in the cerebrospinal veins could be linked to plaque formation. They suggested that the current immunological theory of MS causation may need to be amended. PMID: 15048884

-Drs. Zivadinov, Zamboni, and others are compiling research showing a strong correlation between MS and chronic cerebrospinal venous insufficiency a condition recognised by the International uni0n of Phlebology. PMID: 20351672, PMID: 19958985 http://www.phlebology.org/meetings/international.html

-De Keyser, et al have found that the early formation of plaques that occur in Multiple Sclerosis appear to be consistent with hypoxic tissue injury, likely due to poor venous flow. PMID: 18594554

-The country of Kuwait has gone so far as to institute a nationwide trial of CCSVI and its potential benefits to Kuwaiti citizens suffering from Multiple Sclerosis. http://www.ccsvikuwait.com/

-Finally, a growing international group of interventional radiologists, albeit in early stages of research as of yet, are finding promising results in the exploration of treating venous stenosis as described in Dr. Zamboni’s work on CCSVI theory and are actively pursuing clinical trials. Some of the doctors engaging in this rapidly growing body of work are: Dr. Dake, Chief of Interventional Radiology, Stanford University, California; Dr. Sclafani, Chief of Radiology, Kings County Hospital, New York; Dr. Bonn, Pennsylvania; Dr. Mehta, Albany, NY; Dr. Simka, Poland; Drs. Kim and Kabutey, Boston just to name just a few.

While this line of research may seem to be new, I believe it to be the result of a long line of investigations, too numerous to be fully detailed here. For this reason, as someone suffering from Multiple Sclerosis, I feel it is appropriate and I beseech the Government of Canada to release funding in aid of Canadian investigations of this theory in an effort to shed new light on this complex and baffling disease.

Thank you for your time and consideration of this matter.

Respectfully,
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Postby Chrystal » Tue May 04, 2010 2:18 pm

Everyone, Erin P. added the following below on another CCSVI Facebook site...Along with the contact person listed on the msliberation site (above), please also send your letters to these MPs on the Subcommittee on Neurological Disease, which is meeting on the 6th to discuss CCSVI:

Joy Smith: Smith.J@parl.gc.ca
Kirsty Duncan: Duncan.K@parl.gc.ca
Patrick Brown: BrownPa@parl.gc.ca
Megan Anissa Leslie: Leslie.M@parl.gc.ca
Luc Malo: Malo.L@parl.gc.ca


Email them and tell them you support funding research into CCSVI as well as opening up immediate access to CCSVI for MS patients!
Thank you!
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E-mail

Postby fiddler » Tue May 04, 2010 5:54 pm

I've just sent the following e-mail to the clerk and members of the sub-committee:

Dear Committee Members,

I would first like to thank you for addressing the topic of CCSVI in your deliberations. In this brief I would like to speak to three main issues: the possible impact of CCSVI research on MS, the way that the CCSVI theory has been discounted by vested interests, and the fact that MS sufferers must leave Canada in order to be competently tested and treated. My point of view is that of an MS sufferer with secondary progressive MS, who has spent the last few months researching the topic, and who has recently returned from Poland where I was tested and treated for CCSVI.

The cost of MS in terms of its impact on our health care system and in terms of lost productivity are huge, and investing in research into a condition that is, at the very least, highly correlated to MS is likely to pay very high dividends. The evidence that links CCSVI to MS is very strong and the theory that CCSVI is a causal factor in MS is bolstered by years of independent research that found interesting phenomena in MS patients such as those concerning abnormal blood flows, iron deposition and brain cell degeneration that pre-dates any immune system reaction. The possibility that CCSVI may be a major causal factor in the initiation and progression of MS has given those stricken with the disease the first real hope that the progress of the disease might actually be stopped. Until now, all we have had available to us are very expensive drugs that sometimes slow the progression of the disease. The potential payback of this new area of research in terms of benefit to the quality of the lives of MS sufferers is incalculable.

There are MS experts who have gone so far as to call the CCSVI evidence a hoax, or to demand a level of proof of its authenticity that they do not demand of the drug therapies they administer. I would like to think that these are the reactions of otherwise thoughtful and caring people who have just been confronted by a paradigm shift that throws their entire belief system on its head, that says that much they believed to be the truth throughout their careers might be completely wrong. However, it should be recognized that MS patients who are seeing their abilities and/or faculties degenerate on a daily basis cannot wait for these experts to slowly change their minds and reach a consensus concerning their previous errors. Nor can you expect these same unfortunate MS sufferers to be temperate in their reactions to experts who do not even bother to look at the evidence before denigrating the idea that CCSVI could be the most promising new approach to MS treatment seen in a generation.

While I believe that it is critical that a concerted research effort be undertaken into the nature and treatment of CCSVI as soon as possible, that should not be used as an excuse in delaying the testing and treatment of the condition. Whether or not CCSVI is a major contributor to the initiation and/or progress of MS, it is a real pathological condition that should be treated. It is a disgrace that some of the health community go so far as to say that people should not be tested for the condition, much less treated if it is found in a patient. It is ridiculous that vascular specialists are being dissuaded from treating MSers for this vascular deformity (that almost certainly is not good for the body) just because it has not yet been “proven” to halt the progression of the disease. Based upon my own research into the subject, I believed that there was a strong possibility that I had CCSVI. Given the prevailing attitude of the medical community (or at least that part of it that “owns” MS), I have not been able to find an interventional radiologist or vascular specialist to assess me for the condition. Even if I had found one to do the assessment, there was nobody (to my knowledge, at the time) in Canada to treat the condition if found, in part because these specialists were being “warned off” from doing their jobs on MS patients. I was forced to go to Poland to be assessed and, ultimately, treated for CCSVI. I had the financial resources to do it, but many MSers (who are often on disability) don’t.

I hope that this committee can see why CCSVI research is a good investment for Canada, and why assessment and treatment of CCSVI is the right thing to do.
Dx SPMS in 2004.  Liberated 29/04/2010.
My blog: www.my-darn-ms.blogspot.com
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this is mine

Postby Fernie12 » Tue May 04, 2010 7:11 pm

Here's what I sent:

*****************
Dear members of the Parliamentary Sub-Committee on Neurological Health,

Thank you for taking the time to consider the subject of CCSVI. My name is xxxx and I am from Ottawa. I was diagnosed with Primary Progressive MS on January 18, 2008 at the age of 36.

The date sticks with me – less for the diagnosis and more because of my neurologist’s words to me in response to my “What next?” She responded, “Go home and live your life.” The fact that there were absolutely no options for treatment was shocking. I didn’t know very much about MS, but I did know it was discovered prior to the 1900s. No treatment? Really? Nothing?

My situation has been deteriorating since, and now in addition to other symptoms, I am at a stage where I mostly use a wheelchair when I am out and I kind of stress-out about going places that don’t have accessible washrooms and the like.

I had an appointment this week with my neurologist. I asked him to send me to a vascular surgeon. He said “No”. My neurologist is not a specialist in veinology. No offence, but he probably doesn’t know a ton about veins and blockages and angioplasty. Why is he allowed to block what kind of specialist I see? This is my life, my multiple sclerosis, and my health. Why should I be discriminated and deprived of vascular medical services based on the fact that I have multiple sclerosis? I don’t see the connection or logic.

I am writing you today to ask that you:

1) Notify provincial health authorities that it is a violation of the Canada Health Act to withhold vascular medical services from a group of individuals based on the fact that they have multiple sclerosis.

2) Advise the Canadian and Provincial Medical Associations that they stop discriminating against persons with multiple sclerosis by denying them access to the services of vascular specialists.

3) Take immediate action to ensure that those most affected are offered immediate screening and treatment on compassionate grounds while tasking the researchers for the committee with a scientific review of all relevant vascular studies, to report back to the committee before the end of May.

Many Canadian patients are traveling or are about to travel abroad (including myself) to gain access to this procedure. I am lucky that I have the means to access this treatment. How many people with MS in Canada don’t have this luxury.

This disease is already cruel and devastating, making our lives miserable. A definite breakthrough is there. The outcome of the “liberation treatment” is visible, concrete and real. So, please do something and allow those most affected to be offered immediate screening and treatment on compassionate grounds.
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Postby Brightspot » Tue May 04, 2010 7:51 pm

Wow!

Wonderful words!

Your truth cannot help but have an impact.
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Postby Chrystal » Wed May 05, 2010 6:31 am

Just trying to keep this posting at the top of the board hoping more Canadian MSers will see this and send in their letters. Thanks.
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Postby Hope66 » Wed May 05, 2010 8:08 am

My letter, sent today. Thanks for the additional contacts Chrystal, I will forward it to them as well!
We Rock!

Parlimentary Sub Committe on Neurological Health on Thursday 7:30am - Topic CCSVI

Dear Ms. Holke David:

I am writing to you today to express my concern regarding Multiple Sclerosis (MS) patients in Canada who are routinely being denied access to testing for and treatment of Chronic Cerebral Spinal Venous Insufficiency (CCSVI).

I was diagnosed with MS in 2003. Like many other people suffering from MS, my doctor recently denied my request for a referral for a simple Doppler Ultrasound to determine whether I also have CCSVI. I believe that I have been denied reasonable access to health care services by virtue of my MS diagnosis and that this is in contravention to the the Canada Health Care Act, Section 3, regarding Canadian health care policy which states,

"It is hereby declared that the primary objective of Canadian health care policy is to protect, promote and restore the physical and mental well-being of residents of Canada and to facilitate reasonable access to health services without financial or other barriers." 1984, c. 6, s. 3.

I also believe that denying MS patients access to testing and treatment of CCSVI violates our rights under the Ontario Human Rights Code. Specifically, I believe MS patients who have been denied testing and treatment of CCSVI are being discriminated against by being denied access to "health services" (CCSVI testing and treatment) because of "disability" (MS diagnosis).

I am writing to you today to request that the Sub Committe on Neurological Health immediately takes all necessary steps to ensure that all MS patients who choose to be tested and treated for CCSVI are able to do so without impedement by the medical community.

More urgently, I am requesting on compassionate grounds that CCSVI testing and treatment is offered immediately to those MS patients for whom there are no other treatment options.

I would also like to express my suppport the MS Society's request for research funding to further investigate the known significant correlation between MS and CCSVI.

Sincerely,
-----------
Dx March 2003
Avonex
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Response

Postby fiddler » Wed May 05, 2010 8:24 am

I just received this in response to my letter to the sub-committee... I expect all of us who sent a copy of the e-mail to Ms. Duncan will receive the same:
Thank you for your letter. Ms. Duncan has asked me to forward you her Order Paper question which has been tabled in the House of Commons and must be answered by the government.

Q-2332 — May 3, 2010 — Ms. Duncan (Etobicoke North) — With respect to chronic cerebrospinal venous insufficiency (CCSVI), the “liberation” procedure, and multiple sclerosis (MS): (a) does Health Canada recognize the International uni0n of Phebology (IUP), and is Canada a member; (b) does Health Canada recognize the IUP’s Consensus Document on the diagnosis and treatment of venous malformations; (c) will Health Canada be respecting the IUP’s standards regarding diagnosis and treatment of venous malformations; (d) will the government work with the provinces and territories to establish imaging and treatment guidelines for CCSVI and, if so, over what timeline and, if not, why not, (i) what are the benefits and risks associated with imaging and treatment techniques, (ii) what are the costs for each of the identified methods; (e) will the government, in collaboration with the provinces and territories, commit to imaging MS patients for venous malformations, and treating those patients who require interventions and, if not, why not and, if so, (i) over what timeline, (ii) what barriers would have to be overcome; (f) is CCSVI recognized as an official diagnosis and, if so, by what professional medical organizations and how is it defined; (g) what is the cause of narrow veins in the neck or thorax and what methods could possibly be undertaken to reduce their occurrence either in utero, in childhood, or in adulthood; (h) with what medical conditions is CCSVI associated; (i) what are the potential health impacts of CCSVI in the short-term, medium-term and long-term, both with and without treatment; (j) what percentage of MS patients show one or more blocked veins; (k) what veins, other than the jugular veins, are commonly blocked, damaged, or twisted in the human body, (i) what imaging procedures are used to identify the problems, (ii) what interventions are required to address the problems and why, (iii) what are the possible health impacts if left untreated, (iv) are interventions time sensitive, (v) what are the costs of imaging procedures and treatment; (l) what specific methods are used to investigate CCSVI, what costs are associated with each method, and what are the benefits and risks associated with these techniques; (m) where in Canada are these imaging methods available and, for each location, what procedures are offered and how much do they cost; (n) where in the world are private clinics emerging, what are their efficacy and safety records, and what are the imaging and treatment costs; (o) what percentage of MS patients show a reduction in MS attacks and brain lesions following the liberation procedure; (p) what percentage of MS patients with little or mild blockage show improvement following the liberation procedure; (q) what discussions is the government having regarding CCSVI, its imaging, and the possible link with MS; (r) what studies are government scientists conducting to assess the reliability and validity of imaging techniques, the possible association between CCSVI and MS, and to follow-up on patients who have undergone the liberation procedure; (s) how much money has the government allocated to research related to CCSVI, the liberation procedure and MS; (t) what is the estimated number of MS patients in Canada, and what is (i) the percentage who can no longer work, (ii) the percentage who depend on family caregivers, (iii) the percentage who require around-the-clock care from professional caregivers; (u) what is the estimated national annual economic impact of MS on families and healthcare plans; (v) what is the estimated national annual cost of disease-modifying therapies, including Copaxone and Interfon, for families and healthcare plans; (w) what are the projected imaging costs for CCSVI and treatment costs for MS patients who show a vascular abnormality; (x) what are the projected imaging costs for CCSVI and treatment costs for all MS patients; (y) what recommendations regarding CCSVI and imaging are being provided by the government to MS patients, particularly regarding (i) reputable imaging and treatment clinics, (ii) the pros and cons regarding venoplasty and stents, (iii) the need for continuing treatment regimes following any liberation procedure; (z) what steps is the government taking to educate MS patients about blogger patients and sham imaging and treatment centres; and (aa) what is the estimated number of Canadians who have gone overseas for imaging and treatment, and what tracking is being undertaken of their condition following such trips?


Have a good day,

Ryan Murphy
Legislative Assistant
Office of Kirsty Duncan, MP, Etobicoke North
Dx SPMS in 2004.  Liberated 29/04/2010.
My blog: www.my-darn-ms.blogspot.com
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