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

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

Postby Mathd » Wed May 05, 2010 10:02 am

And for those who are better in french, here's the french version of the letter

please note that CCSVI in french is NOT ICVC but IVCC,
anyway, at least they are going to talk about that...

the question list seem to be very complete...
- - - - - -
Q-2332 - 3 mai 2010 - Mme Duncan (Etobicoke-Nord) - En ce qui concerne l'insuffisance cérébrospinale veineuse chronique (ICVC), la procédure de « déblocage » et la sclérose en plaques (SEP) : a) est-ce que Santé Canada reconnaît l'Union internationale de phlébologie (UIP), et le Canada en est-il membre; b) est-ce que Santé Canada reconnaît le Document de consensus de l'UIP au sujet du diagnostic et du traitement des malformations veineuses; c) est-ce que Santé Canada respectera les normes de l'UIP concernant le diagnostic et le traitement des malformations veineuses; d) est-ce que le gouvernement travaillera en partenariat avec les provinces et les territoires en vue d'établir des directives sur les techniques d'imagerie et le traitement de l'ICVC, et si oui, quand et, si non, pourquoi pas, (i) quels sont les avantages et les risques associés aux techniques d'imagerie et de traitement, (ii) quels sont les coûts de chaque méthode; e) est-ce que le gouvernement, en collaboration avec les provinces et les territoires, entend autoriser l'imagerie des personnes atteintes de la SEP en vue de déterminer la présence de malformations veineuses et de traiter celles qui nécessitent une intervention et, si non, pourquoi pas et, si oui (i) moyennant quel délai (ii) quels obstacles faudrait-il surmonter; f) l'ICVC est-elle reconnue comme un diagnostic officiel et, si oui, par quelles organisations médicales professionnelles et comment est-elle définie; g) quelle est la cause du rétrécissement de veines dans le cou ou le thorax et quelles méthodes pourrait-on adopter pour réduire leur occurrence durant la grossesse, l'enfance ou la vie adulte; h) à quels problèmes médicaux associe-t-on l'ICVC; i) quelles sont les répercussions possibles de l'ICVC sur la santé à court terme, à moyen terme et à long terme, avec ou sans traitement; j) quel pourcentage de personnes atteintes de SEP ont au moins une veine de bloquée; k) quelles veines autres que les veines jugulaires sont communément bloquées, endommagées ou tordues chez l'humain, (i) quelles procédures d'imagerie sont employées pour diagnostiquer les problèmes, (ii) quelles interventions sont requises pour corriger les problèmes et pourquoi, (iii) quels sont les répercussions possibles sur la santé de l'absence de traitement, (iv) les interventions doivent-elles être faites dans un délai spécifique, (v) quels sont les coûts des procédures d'imagerie et du traitement; l) quelles méthodes particulières utilise-t-on pour étudier l'ICVC, quels sont les coûts associés à chaque méthode, et quels sont les avantages et les risques associés à chacune de ces techniques; m) où ces techniques sont-elles offertes au Canada et, pour chaque endroit, quelles sont les procédures employées et combien coûtent-elles; n) où trouve-t-on des cliniques privées dans le monde, quelle est leur efficacité et leur bilan sanitaire et quelles sont les procédures d'imagerie employées et quels sont les coûts des traitements; o) quel pourcentage de personnes atteintes de la SEP présente une réduction des crises de SEP et des lésions au cerveau après la procédure de déblocage; p) quel pourcentage de personnes atteintes de la SEP et dont le blocage est léger présente une amélioration après la procédure de déblocage; q) quelles discussions le gouvernement a-t-il concernant l'ICVC, l'imagerie et le lien possible avec la SEP; r) quelles études les scientifiques du gouvernement mènent-ils pour évaluer la fiabilité et la validité des techniques d'imagerie, l'association possible entre l'ICVC et la SEP, et pour assurer un suivi auprès des patients qui ont subi la procédure de déblocage; s) combien d'argent le gouvernement a-t-il alloué pour la recherche reliée à l'ICVC, la procédure de déblocage et la SEP; t) quel est le nombre approximatif de personnes atteintes de la SEP au Canada, et quel est (i) le pourcentage de ces personnes qui ne peuvent plus travailler, (ii) qui dépendent de soignants familiaux, (iii) qui requièrent les soins de professionnels 24 heures sur 24; u) quel est l'impact économique annuel estimatif de la SEP sur les familles et les régimes de soins de santé; v) quel est le coût annuel estimatif au Canada des médicaments modifiant l'évolution de la maladie tels que le Copaxone et l'Interfon, pour les familles et les régimes de soins de santé; w) quels sont les coûts projetés des techniques d'imagerie pour l'ICVC et les coûts du traitement des personnes atteintes de la SEP qui présentent une anomalie vasculaire; x) quels sont les coûts projetés des techniques d'imagerie pour l'ICVC et les coûts du traitement des toutes les personnes atteintes de la SEP; y) que recommande le gouvernement, s'il fait des recommandations relativement à l'ICVC et aux techniques d'imagerie, aux personnes atteintes de la SEP, particulièrement en ce qui a trait (i) aux cliniques d'imagerie et de traitement reconnues, (ii) aux avantages et inconvénients de la veinoplastie et de l'endoprothèse, (iii) à la nécessité de poursuivre les traitements à la suite d'une procédure de déblocage; z) quelles mesures le gouvernement prend-il pour sensibiliser les personnes atteintes de la SEP aux blogues et aux arnaques en matière de techniques d'imagerie et de traitement; aa) quel est le nombre estimatif de Canadiens qui se sont rendus à l'étranger pour se prévaloir de techniques d'imagerie et pour se faire traiter, et quel suivi fait-on de l'évolution de leur état de santé par la suite?


Ryan Murphy
Legislative Assistant
Office of Kirsty Duncan, MP, Etobicoke North
613 Confederation Building
(p) 613-995-4702
(f) 613-995-8359
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Postby tazbo » Wed May 05, 2010 5:09 pm

Is everyone who sends in their comments getting a response email? I didn't and wondered if I should edit and try again.
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Postby Hockeydad » Wed May 05, 2010 5:44 pm

I received the same email. At least it was personnally addressed.
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Postby Chrystal » Wed May 05, 2010 6:57 pm

Received the same reply with questions Ms. Duncan has tabled for the government to answer and sent a message thanking Ms. Duncan.
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Postby dlm » Wed May 05, 2010 8:49 pm

This is the letter I sent. I hope everyone also sends their letters to their federal MP and their Provincial Member of the Legislature.

May 5,2010

Parliamentary Subcommittee on Neurological Health

Delivered by email to:
HolkeC@parl.gc.ca


Dear Sir/Madame:
I am writing to urge your support for making the
CCSVI procedure immediately available to Canadians living with Multiple Sclerosis (M.S.).
In my opinion there is no excuse that can, in conscience, be made to withholding a treatment which appears to provide relief to the symptoms of M.S. and may, in addition, be effective in halting the progression of the disease.
In 1999 I was diagnosed with Relapsing-Remitting Multiple Sclerosis. Over the course of my illness I have been on every recognized drug available in Canada.
My three years on Rebif and one on Copaxone, did nothing to stop the progression of the illness.
I was subsequently put on Mitoxantrone, a cytotoxic drug delivered intravenously and developed for cancer. On this drug I was relapse free for thirty three months, and I accepted its risks and side effects which, in my case, included mouth sores, fever and nausea. With this drug there is a lifetime limit of treatments before it affects the function of the heart muscle.
I have recently been on the drug Tysabri for over two years, another intravenous drug. Tysabri was originally approved in US under the FDA’s compassionate use policy, despite safety concerns which continue including life threatening brain infection.
All these treatments carried a number of side effects, affecting my quality of life, with two threatening serious long term damage or death. But the choice of trying them was mine, and I have been willing to attempt any therapy in the hope of halting or slowing down my deterioration.
I persevered in these drug therapies because the personal cost of having Multiple Sclerosis has simply been too devastating for me to take any lesser course of action. In spite of these drugs, I now require an electric scooter for mobility, and rely on homecare to assist me with basic personal needs. My vision has been damaged by optic neuritis which, as an artist, and a trained art therapist, has been heart breaking. My ability to provide for my two children has been stricken and when I look forward I must face that further loss of independence is inevitable. My losses are too many to list here. Nor are they particularly unique - every person living with Multiple Sclerosis faces a future filled with loss including the loss of dreams and hope.
There are no other medical treatments options open for me unless I leave Canada for treatment in another country, because one of the most promising treatments, CCSVI, is currently being withheld.
As someone who has championed the many freedoms our country has enshrined in our constitution, how is it that my choice and my right to medical treatment is denied?
The CCSVI procedure is being withheld for reasons that have already been overlooked in other MS treatments. Opponents have pointed to the small (sixty-five) number of patients in the first published work; the lack of double blind research; and the potential “danger” of the procedure.
Tysabri was fast tracked as a M.S. drug option without finalizing all the research procedures. There have been forty six cases of incurable brain infection leading to eleven deaths. Yet Tysabri is offered as a treatment option.
Stem cell transplant research done in Ontario is on a much smaller sample of people than the CCSVI research; there has been one death in twenty-four and there is no listed double blind placebo in the research. The procedure includes wiping out the immune system with chemotherapy which is hard to duplicate as a placebo. Yet the research continues.
The disease modifying drugs for M.S. which include Betaseron, Rebif, Avonex and Copaxone modify the effects of MS on only thirty percent of people. They do not cure or reverse the effects yet these drugs are aggressively promoted as a first line treatment for every patient with MS.
It is unconscionable to withhold CCSVI treatment for Canadians. It is inconceivable that a relatively simple procedure to address a measurable medical problem, CCSVI, should be blocked in favour of drugs that carry greater risk and cost to the medical system.
I urge the committee to work to ensure that Canadians have the right to seek CCSVI treatment in Canada.

Sincerely,

xxxxx
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Postby Johnson » Thu May 06, 2010 12:23 am

I wrote to them too. It's wordy, but gosh-darn it, Parliament loves words...


Dear Sirs/Madames,

My name is not really Johnson. I am a Canadian male, 48 years old, and have suffering what has been heretofore known as Multiple Sclerosis (MS) since 1993. I can now see that I had some symptoms indicative of "MS" as long ago as 1972 - when I was 10 years old. I have some grave concerns regarding the positions of the various governing bodies in Canada regarding the diagnosis and treatment of Chronic Cerebro-Spinal Venous Insufficiency (CCSVI). I appreciate any indulgence in considering my submission to this Subcommittee.

I became aware of the CCSVI theory in November of 2009, as so many else did. I understand that there is a great deal of interest (on the part of "MS" patients, Vascular Surgeons, Interventional Radiologists...), and a great deal of controversy (on the part of neurologists, Colleges of Physicians and Surgeons, the pharmaceutical industry (who direct research with funding), and the MS Societies - who do likewise. The theory made sense to this layman immediately. I am not certain that it is the end of "MS", but it did prompt me to have colour Doppler ultrasound, and an MRV, which I paid for at a private clinic - as I was unable to gain a requisition or referral in the public system. I paid a total of $2350 (keep in mind that I am unable to work, and these funds were taken from my wife's meagre income). I have no strident objection to that, as it was - at that time - not clearly indicated that such testing was warranted in people with "MS". Of course, the BNAC study (US) has shown preliminary indications of a 62% correlation. Dr. Marian Simka, et al (Poland) have documented an approximate 95% correlation, Dr. Zamboni, et al (Italy) - 100% correlation, the Kuwait initiative is very strongly correlative as well (>80%). It is to be noted further, that Kuwait has undertaken to screen and treat all Kuwaiti citizens with "MS", for CCSVI. Meanwhile Canada mutters and mumbles about clinical trials and patient safety. I wonder how many Canadians with "MS" will die of the condition, become permanently disabled, or commit suicide while waiting. That is some "patient safety".

There ought to be little doubt as to whether treatment for inhibited cerebral drainage is warranted, endorsed, and publicly funded - especially for Canadian citizens who have a greatly diminished quality of life, and to whom no other treatment has been advised, or offered. I have not worked for over 10 years, and previous to that, I was dismissed from a number of jobs because I could no longer perform my duties satisfactorily. Prior to that, I was an entrepreneur with two fledgling businesses that died along with who I had been before "MS". I was 31 years old. Occlusion of the hepatic vein can cause Budd-Chiari disease, which is ultimately fatal if a liver transplant is not possible. The same outcome is expected in the case of a renal venous occlusion. These conditions are routinely, and urgently treated. Occlusion of the femoral vein in the leg can lead to tissue death, and ultimately, amputation of the leg. An occluded carotid artery, coronary artery, etc., is readily treated by angioplasty, as the outcome otherwise, is also death. Neuro-radiologists go so far as to perform procedures within the brain itself in the cases of some stroke patients, as otherwise, extreme disability and/or death can be expected if no action is taken. Somehow, resolving compromised venous drainage of the brain has to go through rigorous double-blinded clinical trials before it can be accepted that it can, and does cause extensive neurological damage, physical disability, and ultimately, death

In my own screening for CCSVI, it was determined that;

- My Internal Jugular Veins (IJVs) are severely constricted bilaterally (>90%), have faulty valves, turbulence, and reflux.

- My IJVs do not collapse while sitting or standing, but remain engorged with putrefying blood, which re-fluxes into my brain - poisoning it, -causing brain damage.and disability.

- There is an "extraordinary number" of collateral veins from my thyroid.

My biggest problems are cognitive dysfunction, balance problems, visual problems, and extreme - and accelerating - weight loss. My MRV scan shows that thyroid vein collaterals are trying to drain into blocked jugular veins. I was referred to an Interventional Radiologist in BC for selective venography, but after performing two very successful balloon procedures on the jugular veins of two people with CCSVI, he was halted, and my referral deferred. In this case, I was denied treatment because I belong to a group of society that has a disability. This not only contravenes the Charter of Rights and Freedoms, and the Canada Health Act, it is in contravention of common morality, and human decency.

I believe that I will soon die from weight-loss if my thyroid cannot drain stale blood effectively. I can feel my brain dying - in my diminished ability to mentate, and in my disability to function bodily. I need help, but I am repeatedly referred to the neurology department at UBC for my venous issues. There is a break down in the system, and I am being refused treatment because I have a dis-ease of unknown aetiology (though it has been studied by neurologists for at least 6 decades). I do not expect to be sent to a neurologist for venous issues any more than I expect to be sent to an Otologist for a skin rash, but this is what is happening to me, and ~75,000 other Canadians.

I have now been compelled to seek treatment abroad, as the treatment is being denied of me here in the Canada - where my taxes pay for a public medical system - staffed by tax payer funded clinicians. How will I acquire follow-up care when I return? Will I be refused treatment again? Will I have to return over-seas? Will I be allowed to die because I have "MS", and jugular vein occlusions are not proved to be related to "MS" by double-blinded clinical trials? It will cost me $10,000 for treatment in Poland. It will cost a further $10,000 to fly myself, my wife, and our three years old son to Poland and back. My wife will additionally lose approximately $2,500 by taking time off to accompany me. That is $22,500 - without considering any of the incidental costs of travel, and I have no income. I am obliged to pay the British Columbia Medical Services Plan $1,368 per annum, but I am refused treatment (which would be billed to BCMSP at the sum of about $1,500). In the 17 years that I have had "MS", I have paid about $20,000 in MSP premia, but have never been sick - other than with "MS". There is a breach of the "social contract" occurring, but I have no recourse. I am deeply offended to "have to" pay taxes. I have no pension or retirement fund as I approach retirement age. I do not own a home. Instead, I will be in debt for ~$25,000.

The Government of Canada is not the Conservatives' government, it is not Steve Harper's government, it is MY government, and that of my wife, my child, my extended family, and my friends. We demand immediate attention and funding to the matter of CCSVI. We demand compassionate care and treatment. I will demand re-imbursement, in the Courts, for my costs to be treated in Poland. My family, and I, refuse to accept that an inexpensive, minimally "invasive" procedure is denied to me (and ~ 75,000 other Canadians) because neurologists cannot understand venous pathologies, and how they might affect the brain. I refuse to accept that I have to die a nasty death because the "powers that be" cannot understand that arguably the most important organ in my body needs proper circulation of blood. Even a Grade 10 biology student can figure that out. My wife, my sister, and anyone can have breast implants. Minister of Finance Flaherty can have botulism toxin injected into his face for vanity's sake (and I wonder if OHIP paid for that). People can engorge themselves on garbage food, become obese, and receive treatment. People can harm themselves through lifestyle choices and receive treatment. If I am an alcoholic, or injection drug user, I can receive treatment, and even receive free needles to inject said drugs into my veins, but a routine procedure for an affliction that I was born with is denied me.

I beseech all governing bodies in Canada to act on this now - not after I have become bed-ridden, or have killed myself in despair. I do not want my son to suffer the same fate. We are out of time.

Thank you for accepting, and entertaining this: my written submission to this Parliamentary Subcommittee on Neurological Health.

Sincerely,

Johnson (not really)
Indian Arm, BC
My name is not really Johnson. MSed up since 1993
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Postby Niceflow » Thu May 06, 2010 12:14 pm

Wow, Johnson, you got good inspiration while writing this request ! Good and strong arguments.. let's see, if they get moved and act quickly now !
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Postby PCakes » Thu May 06, 2010 12:50 pm

amazing!! Johnson.. readers will be hard pressed to buy in on the 'cog fog' :wink:
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Postby Stacemeh » Thu May 06, 2010 3:39 pm

Well done Johnson (not really).

8)
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Postby Johnson » Thu May 06, 2010 4:44 pm

Thanks for the comments, but my mind is really frigged up. I really hope that I will be relieved of that after Poland, and I can effectively lobby for us all. I grates on me that there are so many that have not even heard of CCSVI, and have no resources to get treatment in Poland, Bahrain, wherever when they do hear of it. That actually drives me more than my own situation.

My wife has doctors and lawyers as some of her clients. One Barrister has taken an interest in my deferred procedure, and is willing to at least point me to the right people. She interrupted my wife when she was telling of it, and said "Human Rights". Another client is a medical specialist who printed out the fee schedule for a plethora of procedures for me. Angioplasty with one stent goes for $6235 for non-Canadian patients. It costs nothing if you are Canadian. I was told by another surgeon (by proxy) that the "Liberation" procedure would cost Providence Health Care (the shibboleth for Medical Services in BC) $1500.

My auto mechanic has three arterial stents, and he told me that there where 50 people in the waiting room, and they went in "boom, boom, boom", and they were out of there.

Gotta stop - blood pressure is rising, and there is nowhere for it to go!

Just wait. I will post my court dates here so that you all can come and watch the fun.
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May 11 More federal govt testimony re CCSVI

Postby Brightspot » Mon May 10, 2010 11:17 am

Great work everyone!

More testimony will be given tomorrow by Rebecca Cooney of msliberation.ca and the doctor who has performed the liberation proceedure in Barrie Ont. (and more of course from the MS Society).

I believe that the CEO of the MS SOciety mentioned that they have 30,000 members in Canada. We need to make sure that the voice of the other 45,000 folks with MS is heard. This is our chance.

Please continue to send your stories and feedback to the Parliamentary Sub Committee on Neurological Health.

Dr. Kirsty Duncan (a member of this committee) is fully committed to having this issue addressed. This is our chance to be heard and to have some action on this matter.
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We are getting results!!

Postby Brightspot » Mon May 10, 2010 4:05 pm

From the Globe and Mail

Monday, May 10, 2010 11:56 AM
Liberals seek MS debate

Jane Taber

Michael Ignatieff's Liberals are demanding an emergency debate today on a controversial procedure to help Canadians suffering from multiple sclerosis.

Toronto MP Kirsty Duncan is leading the charge, pressing Health Minister Leona Aglukkaq call a meeting of provincial health ministers to develop a plan that would allow all Canadians with MS to have access to the procedure. She also wants the federal government to provide $10-million to Multiple Sclerosis Society of Canada for research into a new hypothesis about the causes and treatment of MS.

“MS steals from futures from families, and there is no cure,” Ms. Duncan writes in a letter to House of Commons Speaker Peter Milliken, setting out her reasons for the emergency debate.

She writes that it has been recognized as an autoimmune disease but a new hypothesis put forward in 2009 looks at the fact that it might be caused by “chronic cerebrospinal venous insufficiency” or CCSVI, which is the narrowing of the veins in the neck, chest and spine that doesn't allow for blood to flow from the brain efficiently.

A new procedure, which uses stents to open up the veins, has resulted in marked improvement for those who have had it. As a result, many Canadian MS patients “are now mortgaging their homes, their savings in order to travel overseas for the procedure,” Ms. Duncan writes.

“If there is a glimmer of hope that the procedure can improve quality of life, it is an absolutely necessary, urgent intervention.”

Speaker Milliken will consider the request after Question Period this afternoon.

(Photo: An MS patient walks with her daughter in Toronto's Pearson airport after returning home from treatment in the United States last month. Darren Calabrese for The Globe and Mail)

---

The text of Ms. Duncan's letter follows:

Dear Hon. Peter Milliken,

I am writing to you about a matter of the utmost urgency, and the need for federal leadership.

Fifty-five thousand to seventy-five thousand Canadians live with multiple sclerosis (MS); our country has one of the highest rates of the disease in the world. MS is a devastating, unpredictable disease, which affects balance, hearing, memory, mobility, and vision. Its effects are physical, emotional, financial, and last a lifetime. MS steals futures from families, and there is no cure.

MS has been largely recognized as an autoimmune disease. However, in 2009, Zamboni et al. put forward the hypothesis that MS may, in fact, be caused by chronic cerebrospinal venous insufficiency (CCSVI) or a narrowing of the veins in the chest, neck and spine that does not allow for the efficient removal of blood from the brain. As a result, blood leaks into the brain, it is thought, depositing iron, which triggers an immune response.

The 'liberation' procedure uses venoplast ('balloons') to open up narrowed veins or inserts stents to help keep veins open. MS patients who have had the liberation procedure report an improvement in 'brain fuzziness' and circulation; and over time, a marked improvement in the quality of life.

I appreciate that there has been both controversy and interest regarding the CCSVI hypothesis and the liberation procedure, and that numerous questions remain. However, the International uni0n of Phlebology, the largest international organization devoted to the investigation and management of venous disorders, established an expert panel to formulate guidelines for physicians and healthcare professionals around the world to diagnose and treat vein malformations, including CCSVI.

I am therefore writing to ask for an emergency debate to ask that the Minister of Health show leadership through: (a) immediately convening a meeting of health ministers to develop a plan such that all Canadians living with MS would have access to appropriate diagnostic imaging to determine the presence of venous malformations, and the treatment if appropriate; and (b) provide $10 million for research into CCSVI and MS, as requested by The Multiple Sclerosis Society of Canada.

I am asking for an emergency debate, as 'time is brain', and the earlier MS is caught, and treatment begun, the better the prognosis. This is a genuine emergency, as a delay of a matter of months for some patients may mean the difference between working and not working, walking and not walking, or living on their own or in care.

The topic is immediately relevant, as the liberation procedure has been replicated in the United States, Poland, Jordan and Kuwait - with positive results. Patients are now mortgaging their homes, their savings in order to travel overseas for the procedure. If there is a glimmer of hope that the procedure can improve quality of life, it is an absolutely necessary, urgent intervention.

The topic is a concern throughout the nation as Canada has one of the highest rates of multiple sclerosis in the world. MS is the most common neurological disease affecting young adults in Canada, and every day, three more people in Canada are diagnosed with the disease in communities across this country.

I have reviewed the criteria for decision, and believe my request meets several criteria. I have already discussed what a delay in the procedure might mean to someone living with MS, and will now address the economic impacts. According to the Canadian Institute for Health Information (CIHI), the estimated annual total cost of MS to the Canadian economy is $1 billion, more than that devoted to all infectious diseases combined. The overall direct costs of caring for, and treating Canadians with MS, are currently estimated at $139 million annually, with drugs accounting for almost half. A scan and angioplasty in a public hospital setting is estimated to cost $1,500. However, the true cost of MS has nothing to do with money. The impact on quality of life is simply catastrophic.

The matter absolutely falls within the administrative responsibilities of the government, as it is responsible for health of Aboriginal Canadians, as well as the Canadian forces-and the issue is pertinent to Canadians across this country.

I thank you for your consideration, and eagerly await your response.

Yours very truly,

Kirsty Duncan MP

Etobicoke North
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Order paper question Re CCSVI submitted by Kirsty Duncan

Postby Brightspot » Mon May 10, 2010 4:12 pm

Thanks to those of you who posted the replies you recieved from Kirsty Duncan.

The fact that on May 3rd she submitted her very thorough questions regarding CCSVI to the government in power , in the form of a question on an order paper, is significant.

I am informed (by my MP, Libby Davies) that if the government is unable to answer questions put to them on order papers within 45 days, they must refer the matter to a committee.

The clock is ticking!!
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THANK U 2 OUR TRUE ADVOCATES!!

Postby Someday » Mon May 10, 2010 7:23 pm

A HUGE THANK YOU to Brightspot, Rebecca Cooney, Andrew Katz, Dr. Duncan, Dr. Bennett and any other people appealing the government for immediate CCSVI testing and treatment for MS Patients in Canada alongside the further research proposed.

You have each carried the crushing weight of 75,000 MS patients on your shoulders and we could never thank you enough.

THAT is TRUE ADVOCACY, recognizing the urgency in treating this vascular condition before our diseases progress even further...rather than just appealing for $10 million for research. Time is not on our side and with each day, our health deteriorates further.

Maybe our case would have been made stronger if our advocate agency had appealed to the government for the same, as these wonderful people did. But then they would have had to care about our health and well-being first and foremost, instead of $$$$ only.

Thank you. God Bless,
Someday
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