To Canadian Members and Senators

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To Canadian Members and Senators

Postby 1eye » Mon Feb 27, 2012 2:18 pm

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Re: To Canadian Members and Senators

Postby 1eye » Mon Feb 27, 2012 2:24 pm

Should work now.
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Re: To Canadian Members and Senators

Postby 1eye » Mon Feb 27, 2012 2:43 pm

Today I sent a letter to 50 weeklies and 25 major dailies. Ms. Aglukkaq had the advantage of a translator.. Should have done more French.

Mine was:

February 25, 2012

Dear Editors: (*)

I would like to comment on an issue which has arisen in Ottawa, that affects many Canadians.

I would like to address those Canadians affected by Multiple Sclerosis, those who have it, their families, friends, and employers.

Canada needs to engage itself now, not later, in the research to combat MS, a disease which affects thousands of Canadians. Canada has one of the highest rates of MS in the world. About 400 Canadians die every year from MS. To put that into perspective, that is a rate of more than one death every single day, in this country alone. That does not consider the suicide rate of people with MS, which is 7% higher than average.

The only drugs available, to treat only roughly half of MS patients, cost between 15,000 and 30,000 dollars per patient every year, for the indefinite future, or until they ‘convert’ to a less treatable form of MS. The drugs do not reverse anything. If all goes well, they can only slow down its inevitable progression, often ending in premature death. MS has no cure, because in the century or so it has been recognized, the medical world has not been able to discover its cause.

As you may have seen on a CTV report in November 2009, or more recently in the CBC television show this month, The Nature Of Things, there has been considerable excitement over a new treatment for MS. It has been called the “Liberation” treatment by some people; the term originally referred to the fact that it would free up blocked blood vessels. It is very much like the common heart procedure, angioplasty. The only difference, between this treatment and the more familiar heart operation, is that instead of arteries, veins are involved, in the neck and back.

Since 2009, more than 12,000 people have had the angioplasty for CCSV worldwide, most at their own expense. Especially for Canadians, it has been far from home. One Canadian died, after being turned away from St. Catherine’s medical care, having to travel back to Costa Rican doctors. Another was denied financial help to have the angioplasty done elsewhere, and died of his MS. These cases only scratch the surface.

The condition, thought to be congenital, was discovered by an Italian doctor, Dr, Paulo Zamboni. He named it Cerebro-Spinal Venous Insufficiency, or CCSVI. Seeing it in them so often, he had angioplasty done on the veins of 65 MS patients, and found that their MS improved. Not all of them equally, and not all permanently. They had been in varying stages of MS. They had improvements that, until then, had been impossible to achieve, even with very expensive drugs.

The treatment of their vein anomalies may make some MS patients improve. It may make some of them feel better, live longer and more ably, or go back to work sooner. We hope it does. It is no more dangerous than the similar cardiac procedure, nearly identical and universally supported. Yes, the majority are done on arteries. It is just as safe on veins. Angioplasty is the single most commonly used medical procedure on Earth, having been in frequent use since the 1970s.

The procedure for CCSVI is not a cure for MS. At best it treats a syndrome of the vein circulation in the brain and spine. The CCSVI syndrome has symptoms similar to those of MS. CCSVI may (or may not) be found to be the cause of some real MS symptoms.

In contrast to some 50 other countries, including the US, it is not being allowed in Canada, until lengthy Clinical Trials are completed, to prove it is better than current drug therapies, even though many of those performed have had dramatic results, with as many as 66% reported as having improved.

Many patients with more advanced MS have no treatments available, no drugs, no hope of anything except deterioration and early death.

A Private Member’s Bill, introduced by Federal MP Dr. Kirsty Duncan, proposes a national strategy for approving this new procedure, making sure it is properly tested by qualified scientists, with appropriate haste, and that those Canadians who have gone abroad to have it done (to the US, Poland and many other places), are properly cared for when they return.

Many people with MS do not even think Dr. Duncan’s Bill C-280 goes far enough, noting that when other angioplasty procedures are used elsewhere, they are commonly practiced for years, before any clinical trials approve them, and continue while trials are done, if they are done at all. This Bill would not be necessary if not for the actions of biased individuals, none of whom actually have MS. At first even testing (using ultrasound) for CCSVI was prohibited, but opponents of the procedure have since that time abandoned that obviously foolish position.

However, the Bill has been defeated after two readings, in a voice vote in the House of Commons. There will be one more vote, and Members of the House of Commons will go on the written record, rather than merely joining voices with a “Yea”, or “Nay”.

I urge citizens reading this to contact your Member of Parliament, and ask them to support this Bill. Approving it would not defeat the Government, as it is a Private Member’s Bill. All of Canada’s representatives are free to vote their conscience. This is indeed a very grave matter of conscience. A lot of MS patients will be very interested in their elected representatives supporting this Bill in the vote.

Please let them know that you, too, want them to support Bill C-280 in the final recorded vote.

1eye, 58
Name address phone email
Secondary Progressive MS sufferer
Treated for heart attack with angioplasty in Ottawa, Canada, near home, 2009.
Treated for CCSVI with angioplasty in Albany, New York USA, 2010

(*) this may be used as an op-ed piece, if preferred, or a letter to the editor.

*********************************************************
Last edited by 1eye on Mon Feb 27, 2012 8:12 pm, edited 2 times in total.
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Re: To Canadian Members and Senators

Postby 1eye » Mon Feb 27, 2012 7:42 pm

That was for newspaper editors, but if anyone here wants to use it, they may, provided the whole of the text is used. If you do that, why not add your own text and/or name to the bottom (just not text without your name), and send it along to your Member of Parliament, if you've got one, or CCSVI group of your choice, if you don't have an MP. I just don't want to be misquoted or taken out of context. This link has clickable names, and many if not all members have email and their own websites.
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Re: To Canadian Members and Senators

Postby 1eye » Mon Feb 27, 2012 9:40 pm

Anybody see wrong stuff in this?


**********************************************************************************************************************

25 février 2012

Chers rédacteurs: (*)

Je voudrais faire un commentaire sur une question qui s'est posée à Ottawa, qui affecte de nombreux Canadiens.

Je voudrais m'adresser à ceux des Canadiens touchés par la sclérose en plaques, ceux qui en ont, leurs familles, amis, et les employeurs.

Le Canada doit s'engager maintenant, au plus tard, à la recherche pour lutter contre la SP, une maladie qui affecte des milliers de Canadiens. Le Canada a l'un des taux les plus élevés de sclérose en plaques dans le monde. Environ 400 Canadiens meurent chaque année à partir de SP. Pour mettre cela en perspective, qui est un taux de plus d'un mort tous les jours, dans ce seul pays. Cela ne tient pas compte du taux de suicide des personnes atteintes de SP, qui est 7% plus élevé que la moyenne.

Les seuls médicaments disponibles, de ne traiter que la moitié environ des patients atteints de SP, le coût entre 15.000 et 30.000 dollars par patient par an, pour un avenir indéfini, ou jusqu'à ce qu'ils «convertir» à une forme moins traitable de SP. Les médicaments ne pas inverser quoi que ce soit. Si tout va bien, ils ne peuvent ralentir sa progression inévitable, se terminant souvent par une mort prématurée. SP n'a pas de remède, parce que dans le siècle ou il a été reconnu, le monde médical n'a pas été en mesure de découvrir la cause.

Comme vous avez pu voir sur un reportage de CTV en Novembre 2009, ou plus récemment dans la télévision de la SRC montrent ce mois-ci, The Nature of Things, il a été une émotion considérable au cours d'un nouveau traitement pour la SP. Il a été appelé la «Libération» le traitement par certaines personnes, le terme initialement évoqué le fait qu'il permettrait de libérer les vaisseaux sanguins obstrués. Il est très semblable à la procédure coeur commun, l'angioplastie. La seule différence, entre ce traitement et l'opération du cœur plus familier, c'est qu'au lieu des artères, les veines sont impliqués, dans le cou et le dos.

Depuis 2009, plus de 12.000 personnes ont eu l'angioplastie pour IVCC dans le monde entier, la plupart à leurs propres frais. Surtout pour les Canadiens, il a été loin de chez eux. Un Canadien est mort, après avoir été détourné de soins médicaux Sainte-Catherine, d'avoir à voyager aux médecins du Costa Rica. Un autre a été refusée une aide financière d'avoir l'angioplastie fait ailleurs, et mourut de sa sclérose en plaques. Ces cas ne font qu'effleurer la surface.

La condition, pensé pour être congénitale, a été découvert par un médecin italien, le Dr Paulo Zamboni. Il l'a nommé l'insuffisance veineuse cérébro-spinale chronique, ou IVCC. En le voyant en eux si souvent, il avait fait une angioplastie sur les veines de 65 patients atteints de SP, et a constaté que leur SP améliorée. Pas tous d'entre eux aussi, et pas tous en permanence. Ils avaient été à divers stades de la SP. Ils ont eu des améliorations qui, jusque-là, avait été impossible à réaliser, même avec des médicaments très coûteux.

Le traitement de leurs anomalies veineuses peut rendre certains patients atteints de SP améliorer. Il peut faire certains d'entre eux se sentent mieux, vivre plus longtemps et plus habilement, ou de retourner au travail plus tôt. Nous espérons qu'il fait. Il n'est pas plus dangereux que la procédure de même nature cardiaque, à peu près identique et universellement pris en charge. Oui, la majorité sont fait sur les artères. Il est tout aussi sûr sur les veines. L'angioplastie est la seule procédure la plus couramment utilisé en médecine sur Terre, après avoir été en usage fréquent depuis les années 1970.

La procédure pour l'IVCC n'est pas un remède à la SP. Au mieux, il traite d'un syndrome de la circulation veineuse dans le cerveau et la colonne vertébrale. Le syndrome de l'IVCC a des symptômes similaires à ceux de la SP. IVCC peut (ou non) se trouve à être la cause de certains symptômes de la SP réels.

Contrairement à certains de 50 autres pays, y compris les États-Unis, il n'est pas autorisé au Canada, jusqu'à ce que de longues essais cliniques sont complétés, pour prouver qu'il est meilleur que les traitements médicamenteux actuels, même si beaucoup de ceux effectués ont eu des résultats spectaculaires, avec comme jusqu'à 66% ont déclaré comme ayant amélioré.

De nombreux patients atteints plus avancé SP n'avons pas de traitement disponibles, pas de drogues, aucun espoir de rien, sauf la détérioration et la mort prématurée.

Un projet de loi d'initiative parlementaire, présenté par la députée fédérale Dr Kirsty Duncan, propose une stratégie nationale pour l'approbation de cette nouvelle procédure, en vous assurant qu'il est correctement testés par des scientifiques qualifiés, avec une hâte appropriée, et que les Canadiens qui sont allés à l'étranger pour l'avoir fait (aux États-Unis, la Pologne et beaucoup d'autres endroits), sont correctement pris en charge lors de leur retour.

Beaucoup de gens atteints de SP ne pense même pas le projet de loi du Dr Duncan C-280 va pas assez loin, en notant que lorsque d'autres procédures d'angioplastie sont utilisés ailleurs, ils sont couramment pratiqué pendant des années, avant que des essais cliniques de les approuver, et de continuer alors que les essais sont effectués, si elles sont effectuées à tous. Ce projet de loi ne
serait pas nécessaire si ce n'est pour les actions des individus partiaux, aucun d'entre eux ont effectivement SP. Dans un premier temps, même tester (en utilisant des ultrasons) pour l'IVCC a été interdite, mais les adversaires de la procédure ont depuis ce temps abandonné cette position de toute évidence folle.

Toutefois, le projet de loi a été défait après deux lectures, dans un vote de vive voix à la Chambre des communes. Il y aura un vote de plus, et les membres de la Chambre des communes va sur le dossier écrit, plutôt que la simple adhésion à des voix avec un «Oui» ou «Nay».

J'exhorte les citoyens qui lisent ce à contacter votre député, et leur demander de soutenir ce projet de loi. Approuver ce ne serait pas la défaite du gouvernement, car il est le projet de loi émanant d'un député. Tous les représentants du Canada sont libres de voter selon leur conscience. C'est en effet une question très grave de la conscience. Un grand nombre de patients atteints de SP seront très intéressés par leurs représentants élus soutenant ce projet de loi au vote.

S'il vous plaît laissez-leur savoir que vous aussi, vous souhaitez à soutenir le projet de loi C-280 lors du vote final enregistré.

1eye, 58
Nom Téléphone Email Adresse
Secondaire qui souffre SP progressive
Traités pour une crise cardiaque à l'angioplastie à Ottawa, au Canada, près de la maison, 2009.
Traité pour l'IVCC par angioplastie à Albany, New York aux Etats-Unis, 2010
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Re: To Canadian Members and Senators

Postby 1eye » Mon Feb 27, 2012 9:57 pm

"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
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Re: To Canadian Members and Senators

Postby 1eye » Wed Feb 29, 2012 9:29 pm

The Bill C-280 was officially defeated tonight in a close vote. 139 Conservatives against, 133 other party members in favour. One of the guards who roam the halls of Parliament told me: they will get drummed out if they vote against it. I can believe it,, as the Health Minister would have to respond to what could be seen as a "Liberal" bill. I have been vocal and open in my support of this Bill. I think it gives the lie to Ms. Aglukkaq's accusations of "playing politics," and shows that she is "playing politics" in a BIG way. I thought this was supposed to be a free vote, yet the only debate was by half-hearted mouthpieces who weren't very familiar with the subject. At first, neither was the Health Minister. But her arguments of provincial sovereignty gave way to misinformation about angioplasty, evidence and the need to go slowly. People should not be blamed for suspecting this line came directly from neurologists, who really are the only conceivable stakeholders who would have been capable of such a plausible lie, targeted to swaying both the MS Society, and though them,, the Health Minister. She is not really blameworthy either, as she has an office to defend, and no reason to disbelieve the things she passes along as gospel, if they are told to her by 'experts'. If that saves her the embarrassment of a defeat on such a Bill, all the better for her.

The effort I and others made to rescue it was not in vain. The House was packed, at dinner time; a rarity. There were more Conservatives who voted in Dr. Duncan's favour than is usually the case. The battle went to them, but the war is not over. Not even close. Keep the heat to the feet. Read Hansard tomorrow if you want to find out who voted for what. Send the Conservatives with Consciences a thank-you letter.

The NDP unfortunately are running a Leadership race right now and the candidates couldn't be there. We only lost by six votes. The robo-calls might account for that many. It was a moral victory in more than one way. Never give up. You will win.
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Re: To Canadian Members and Senators

Postby NormB » Thu Mar 01, 2012 4:58 am

Greetings 1Eye,
Is there a way to see which Conservative MP voted against the bill?
My MP is for Prescott Russell.

Many thanks,


Norm
'92 diag RR - '05 SP
On LDN since Sept. 2012 with better quality of life.
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Re: To Canadian Members and Senators

Postby erinc14 » Thu Mar 01, 2012 9:20 am

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Re: To Canadian Members and Senators

Postby erinc14 » Thu Mar 01, 2012 11:04 am

The medical politics blocking CCSVI trials
A defeated private member’s bill shows how pitched the battle has become

http://www2.macleans.ca/2012/02/29/the- ... vi-trials/
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Re: To Canadian Members and Senators

Postby 1eye » Thu Mar 01, 2012 2:48 pm

See this video, for an idea of the turf war going on. Yes it's Doc Jock again, but Dr. Zivadinov seems to have similar lists to Dr. Duncan's. I don't say more studies is better, but it's easier to see who the contestants are. Thing is, the radiologists seem to be more hospitable.

If things were the other way up, would the neuros be telling the Canadian government: 'Please let our customers stay home for their treatments...'We don't need their business.'

I think maybe the multimodal approach espoused by Dr. Zivadinov and Dr. Duncan should include IVUS, to reduce exposure to x-rays.
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Re: To Canadian Members and Senators

Postby 1eye » Thu Mar 01, 2012 3:02 pm

If you want to send the Conservatives with Consciences a thank-you letter, their names should be in Hansard some time today. It's on the government's web site. Use the search engine of your choice.

"You have just been optimized."
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Re: To Canadian Members and Senators

Postby Cece » Thu Mar 01, 2012 9:23 pm

1eye wrote:The Bill C-280 was officially defeated tonight in a close vote. 139 Conservatives against, 133 other party members in favour.

So close.
Yes, the neurologists are being treated as the experts in a field that is not their own (phlebology).
I agree with your letter.
Here's a line from Anne Kingston's article
Yet Health Canada permits experimental procedures that haven’t passed clinical trials under its Special Access Program which are “limited to patients with serious or life-threatening conditions on a compassionate or emergency basis when conventional therapies have failed, are unsuitable, or are unavailable,” according to its website.
http://www2.macleans.ca/2012/02/29/the- ... vi-trials/
Is MS not serious? Is MS not life-threatening? Have conventional therapies, that can do no more than to slow down the speed at which we worsen, not failed us?
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Re: To Canadian Members and Senators

Postby 1eye » Sat Mar 03, 2012 11:01 am

Cece wrote:
1eye wrote:The Bill C-280 was officially defeated tonight in a close vote. 139 Conservatives against, 133 other party members in favour.

So close.
Yes, the neurologists are being treated as the experts in a field that is not their own (phlebology).
I agree with your letter.
...Is MS not serious? Is MS not life-threatening? Have conventional therapies, that can do no more than to slow down the speed at which we worsen, not failed us?


Or threatened our lives even more than MS?

Some of the avenues of conventional research have been found dangerous as well.

I had a hard time, at one key juncture, when the Members of the Opposition (our side) burst out in applause, and Suzanne stage-whispered to me about the Government side, "They're standing up!" They were below the section of the Gallery we were in, where we couldn't see all of them without leaning over the bannister, and risking falling down on top of them. We could see a few of the ones who had stood up. Those who had stood up were supporting Bill C-280. I had another of my pseudo-bulbar moments, unable to speak. We were not allowed to make any noise, because we were not being paid by the people of Canada to make noise. They were. But it was a false alarm. It was a valiant try, but in the end not quite enough to pass the Bill. Better luck in the Senate.
Last edited by 1eye on Sat Mar 03, 2012 5:46 pm, edited 1 time in total.
"Try - Just A Little Bit Harder" - Janis Joplin
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Re: To Canadian Members and Senators

Postby PointsNorth » Sat Mar 03, 2012 2:34 pm

We know the Lay of the Land now. 7 Conservatives voted in favour. Bloc not helpful. I will try to engage my local Conservative MP.

Onwards, PN

http://www.parl.gc.ca/HouseChamberBusin ... 1&Vote=136
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