Below is the transcript as received in entirety from Brightspot, which should be posted on the Gov't website in the next day or so. In English & French throughout. Only change is some passages I highlighted in bold to make sure not missed.
YS doesn't even address Dr. Duncan's concern expressed further on about him not being aware of the International uni0n of Phlebology or the Consensus Document. And yet at one point, he says that "Our role is to provide information, to provide guidance and to assist people in making decisions."
He and the rest of the MSSC have failed this role big-time where CCSVI is concerned.
Subcommittee on Neurological Disease of the Standing Committee on Health
Sous-comité sur les maladies neurologiques du Comité permanent de la Santé
EVIDENCE NUMBER 03,
TÉMOIGNAGES DU COMITÉ NUMÉRO 03
UNEDITED COPY - COPIE NON ÉDITÉE
PUBLIC PART ONLY - PARTIE PUBLIQUE SEULEMENT
Thursday, May 6, 2010 - Le jeudi 6 mai 2010
* * *
The Chair (Mrs. Joy Smith (Kildonan—St. Paul, CPC)): Order please.
Welcome. As Chair of the national health committee of Canada we have had discussions around our regular health committee around this issue of neurological diseases is something that we have created a subcommittee on to do a study on this. I know all members around this committee table are very keen on making sure that we do continue more on this. I've heard it from you and I've heard it from the members here.
This morning we have one hour in this subcommittee because we do have another committee following this and so what I'm going to do this is going to be the procedure what I'm going to do is I'm going to give each of the presenters five minutes and keep in mind that any documentation that you might have send it to our clerk and she'll make sure that it is distributed to the health committee so the dialogue does go on through the printed media.
So we will begin starting with the Multiple Sclerosis Society of Canada, Mr. Yves Savoie, president and chief executive officer. You have five minutes for your presentation, Mr. Savoie.
Mr. Yves Savoie (President and Chief Executive Officer, Multiple Sclerosis Society of Canada): Thank you, Madam Chair.
Je vais m'adresser à vous en français, pour commencer, si vous me le permettez. Je vous remercie de votre invitation à comparaître devant vous ce matin. C'est très apprécié.
La Société canadienne de la sclérose en plaque est un organisme chef de file au service des personnes atteintes de cette maladie progressive. Nous avons pour mission de trouver le remède à la maladie, de stopper la SP et d'améliorer la qualité de vie des personnes touchées par la maladie. Trente mille personnes touchées par la maladie sont membres de la société, d'un océan à l'autre.
Nous avons le plaisir de travailler en coalition très étroite avec d'autres organismes au service de personnes atteintes de maladies neurologiques, dont l'Alzheimer et la maladie de Parkinson, pour faire avancer une meilleure compréhension de ces maladies et pour appuyer le développement de politiques qui répondent aux besoins des Canadiens et des Canadiennes touchés par les maladies neurologiques.
Neurological diseases will, within 20 years, be the leading cause of disability and death in our country.
I have colleagues who have joined me and will speak to issues that are important as we've come to Parliament Hill today and they will speak on issues of income security and support for informal care givers, family members and friends, and I'll reserve my final minutes to speak to the area of research.
Research into understanding of the cause, how to prevent, and the eventual cure of MS has been at the heart of our work in our 60 years of history and we have funded $120 million in health research, and that grows at about $10 million a year.
The Neurological Health Charities coalition is advocating with the federal government for the government to develop a brain strategy that would, among other things, bring focus on research on neurological disease. We can, as Canadians, find tremendous pride in the lead of researchers in this country in MS research and more broadly in the area of neurosciences. The Canadian Institutes of Health Research in their most recent strategic plan acknowledged this as a priority reflecting the tremendous strength of research in these areas.
You have all heard, no doubt, of the very exciting new pathway for discovery and new therapy in MS, now very well known as CCSVI, which speaks to the obstruction of veins that drain the blood from the brain, and it is important to underline that the society with a call for research applications responded vigorously and without precedent by launching a request for proposals from Canadian researchers just in the last months. On June 14 I will be delighted to be in a position to announce the results of that competition.
CCSVI is a very compelling example of the appetite of Canadians to see very rapid translation of new discoveries into treatments that provide benefits and improvements to our health, as Canadians. This is at heart the central issue that we face in this text, combined with the need for evidence about that benefit, and that is why we have pressed on the accelerator with our own commitments to research and why in our meeting with the Minister of Health at the end of the day today we will be asking her, as we announced yesterday, for an incremental commitment of $10 million that would be added to the parliamentary budget
appropriations for the CIHR as a designated CCSVI research fund.
The model for this, by the way, is available in a similar supplemental appropriation to the CIHR for research on medical isotopes.
This idea of the translation of research into benefits for Canadians in terms of improved health is also at the heart of a very important strategy of the CIHR called the patient-oriented strategy, and that strategy is fundamentally about equipping Canada to make sure that new discoveries don't stay in the lab or in the researcher's mind but they come as quickly as possible to benefit Canadians and become available through our health systems throughout the country in a way, obviously, that makes them publicly available to everyone.
With that I thank you, members of Parliament, for your time and for this opportunity for a conservation about these important issues.
The Chair: Thank you.
I'm sorry, we have to keep close to time so we have time for the questions and answers and everyone gets a chance, so when I signal or the light comes on, you know I'm going to cut you off and turn off your mike, which I feel badly about.
We'll now talk to Mr. Denis Baribeau, representative of social action and government relations for Quebec Division
M. Denis Baribeau (représentant, Action sociale et des relations avec le gouvernement pour la division du Québec, Société canadienne de la sclérose en plaques): Bonjour et merci de me permettre de vous adresser la parole aujourd'hui.
Je me nomme Denis Baribeau, je suis un bénévole pour la Société canadienne de la slérose en plaques. J'ai le bonheur d'être marié et d'être le père de deux jeunes adultes de 18 ans et 21 ans. Je suis né et j'habite toujours à Trois-Rivières, au Québec.
En 1982, juste après avoir obtenu mon baccalauréat en ingénierie civile et à la veille de me marier, j'ai subi mes premières poussées de sclérose en plaques. À cause des méthodes diagnostiques de l'époque, à la suite de ma première poussée, les médecins ne pouvaient que supposer que j'étais atteint de SP. Et puis une deuxième poussée est survenue quelques années plus tard, ce qui venait confirmer le diagnostic. Je me considère quand même chanceux puisque, bien que je me déplace régulièrement en fauteuil roulant, je ne suis pas affecté par l'extrême fatigabilité qui afflige beaucoup de gens atteints de sclérose en plaques. Dans plusieurs cas, cette fatigue empêche ces gens de travailler, même si ce n'est qu'à temps partiel.
Depuis que je suis atteint de sclérose en plaques, je n'ai été absent du travail que pour cinq jours seulement, et ce après ma troisième poussée, qui m'a laissé partiellement paralysé du côté gauche. Mais cela ne veut pas dire que ça a été facile, j'ai dû et je dois toujours me battre pour conserver mon emploi et pour convaincre mes supérieurs que je suis toujours apte à remplir mes responsabilités, et ce même s'ils me voient assis dans un fauteuil roulant. À un certain moment, j'étais très inquiet de perdre mon emploi et, en cherchant un autre emploi, je me suis buté plus d'une fois aux préjugés des gens. Bien que mon curriculum vitae intéressait les employeurs potentiels, leur vision envers moi changeait radicalement lorsqu'ils voyaient entrer une personne en fauteuil roulant.
Encore aujourd'hui, étant ingénieur de formation et travaillant comme technicien, je suis convoqué régulièrement à des examens de promotion que je réussis, et pourtant, lorsque vient le temps d'octroyer des postes qui me conviendraient, je suis toujours ignoré. Je suis très heureux d'avoir réussi à conserver mon emploi jusqu'à aujourd'hui. Croyez-moi, si je vous dis que je ne me vois pas comme un homme à la maison. Je suis conscient que beaucoup de gens n'ont pas eu la chance que j'ai eue. Je rencontre régulièrement des gens atteints de SP, qui ont perdu leur emploi et qui n'avaient pas l'énergie nécessaire pour se défendre.
Maintenant, il est encore plus difficile pour eux de réintégrer le marché du travail.
Une des recommandations que nous, de l'ASCSP, faisons qui pourrait aider les personnes atteintes de sclérose en plaques et de toute autre atteinte neurologique est que les prestations de maladie de l'assurance-emploi soient plus flexibles. Nous aimerions que les bénéficiaires puissent conserver leur lien d'emploi, ce pourrait être accompli en permettant de travailler à temps partiel tout en recevant des prestations partielles de maladie. En utilisant les règlements actuels, les prestataires pourraient choisir de recevoir des prestations partielles tout en travaillant à temps partiel. Ils pourraient ainsi recevoir de l'assurance-emploi pour 150 demi-journées au lieu de l'actuel 15 semaines ou 75 jours. Avec mon expérience, pouvoir conserver son lien d'emploi se traduirait par un plus grand nombre de personnes qui pourraient retourner au travail au lieu de devoir y renoncer complètement. Faire que les prestations de l'assurance-maladie et de l'assurance-emploi deviennent plus flexible ne représente qu'un petit changement parmi tant d'autres qui sont requis afin d'aider les gens aux prises avec des maladies épisodiques ou chroniques, ou des handicaps à s'assurer une sécurité de revenu dont ils ont besoin. À notre avis, ces changements pourraient être mis de l'avant immédiatement.
Merci encore de m'avoir donné le droit de parole.
The Chair: I thank you very much for coming, Mr. Baribeau. Because you have a little bit more time I just want to make comment that we're good friends with Steven Fletcher. It wasn't MS of course, but it was an accident, and he was confined to a wheelchair. I can tell you some of the things that you've testified to, in your position with MS, he too faced before he came to Parliament. Listening to your story, it is a story we've heard many times and I'm really glad that you came here today, have it on record, and have given your witness about what has happened to you.
I know it must be kind of difficult to be so personal some times, but thank you for doing that.
Now we'll go to Ms. Ozirny.
Ms. Joan Ozirny (Chair, Government and Community Relations Committee, Alberta Division, Multiple Sclerosis Society of Canada): Yes, good morning. Thank you.
I'm a volunteer for the MS Society in Alberta, Alberta Division. I've been a volunteer board member for nine years in various capacities, and currently with Government Relations, with the Alberta Division board.
I wanted to touch on this morning why we all volunteer for the MS Society when we have MS. For many of us, this is a transient disease. As you can see, there's a variety of us in the room with various symptoms.
We want to generally make sure that we give back while we're still stable enough to do so. We don't want to look back with regret, thinking “I should have done that when I could have, when my health was stable”.
I was diagnosed 12 years ago, after a very difficult three-year period of being diagnosed, being undiagnosed, and being diagnosed again, finally. That's often the case with people with MS simply because the symptoms are very transient as well. Specifically, I think the issue often is that MS, being a transient disease, there's a lot of misunderstanding around tax credit issues and caregiver issues that arise from that.
Typically, we don't fit the mould of every other disease that those programs are often designed for.
I'll touch a little bit on the caregiver issues, basically, further in my presentation, but, specifically, for myself, I think primarily the symptoms that I had to deal with were vision loss. That seems like a pretty severe symptom, but it doesn't always necessarily lead to a diagnosis.
Eventually, I was out of the workforce. I was forced to sell my retail business. Most people will have symptoms over a period of time, where they really ignore them or they don't know what the situation is, and the transient nature of the disease they certainly get better, go back to doing their daily ideas, daily things.
Right now I'm very fortunate. I'm no longer in the workforce, as a contributing Canadian, in that fashion. Certainly my health is stable, and I'm able to contribute, with the help of disease modifying therapies, to the MS Society and be a voluntary in a variety of ways.
I do have the benefit of the support of family, but certainly in times of my life I've been a single parent, historically, with small children many years ago. So I understand some of the issues that people on limited income are facing and the fact that they rely on programs to help them face their daily challenges.
Some studies have found that up to 80% of people with MS can no longer work, so that's a staggering amount of Canadians that are no longer able to contribute. The other factor that isn't often talked about, I think, is the fact that divorce rate amongst people with MS is really staggering, and that, itself, places a huge burden on social programs. It's typically women. The disease generally does affect more women than men, and that's something to consider when we think about programs specifically for women. So I wanted to touch on that a little bit today.
As we're meeting with government today, we want to make sure that our income security program for people affected with MS, and also other episodic disabilities and chronic diseases, are geared to actually making a difference.
Finally, I wanted to tell you a story about someone that I know. We often hear of these stories, but when you actually know somebody in this situation it's very difficult to present the information. There's a couple that I'm familiar with in the Edmonton area. The wife is now in long-term care. And this is a young couple. This is not elderly people. These are people in their forties.
She was diagnosed some years back, about 11 years ago, and her disease progressed very rapidly. In the situation they were in they were told by social workers that: “Really, in order for your wife to be able to access the services that she needs to live, you need to have a legal separation”.
Think about a couple who are committed to each other and are told that in order to receive the services that they require, they are required to have a legal separation.
When I was telling them that I'm working on this project right now and I'm planning to come to Ottawa to do a presentation, I asked them what would really have made a difference. They said: “Well, you know, think about when you're checking that box, married, divorced, separated, when you're doing your income tax. How about a box that says involuntary separation?”
The Chair: Thank you, that's something that we'll take into consideration. I'm sorry, I'll have to go on.
Dr. Duncan, you're up.
Oh, I'm sorry, we have one more person. I might have to watch your time a little closer, Ms. Radley. You do have five minutes and you can begin now.
Then, Dr. Duncan, we're going to do our seven minutes and we're going to kind of push it a bit so we can get through this. Thank you.
Ms. Laurel Radley (As an Individual): Thank you for giving me the opportunity to speak here today with particular thanks to Dr. Duncan and Dr. Bennett who made my appearance here possible.
I'm going to speak quickly. There's a lot of information I think that needs to be--
The Chair: Could I just interrupt you for a moment?
I don't think you're quite clear on the process for how witnesses come.
All the committee is wanting to hear as many witnesses as possible. What we do is we sit down and basically any names that have come forward we put on committee. We've now had more names than we can accommodate this morning, which means that we probably need some more. So rest assured that you have a lot of people behind you is all I'm saying.
Okay, I'll start your time again.
Ms. Laurel Radley: Thank you.
I have multiple sclerosis and so does my sister, so do, probably, 75,000 Canadians. I'm not here to talk about multiple sclerosis; I'm here to talk about a condition called CCSVI, or chronic cerebrospinal venous insufficiency. I'm here to make sure this committee is aware that there's an emergency going on in this country.
There are a few things you should know about CCSVI in Canada today. Studies have been published indicating that more than half of those living with MS are also living with a serious vascular condition. The math is not difficult. At a conservative estimate, more than 40,000 Canadians are likely living with his vascular condition.
In Canada right now, if you have multiple sclerosis you cannot access testing for this serious vascular condition, despite the fact the testing is an insured procedure. In Canada, if you have medical documentation that you have this condition, you cannot receive a consultation from a vascular specialist if you also happen to have multiple sclerosis, again despite the fact that these are insured services. People have been refused in every province. I have personal experience of being refused access to a vascular specialist.
With all due respect to Dr. Freedman and the rest of the neurologists who make up the medical advisory committee for the Multiple Sclerosis Society of Canada, I do not want a neurologist weighing in on my medical treatment of a vascular condition, nor do I want my dermatologist to be weighing in on that. I want the access to a vascular specialist to advise me about my vascular health.
Some quick information about CCSVI. It is a vascular condition caused by malformed and severely narrowed or blocked jugular and azygos veins. This is not a new condition. Chronic venous insufficiency is a well-known medical problem in Canada. There are protocols in place to test for this, and there are procedures in place to treat this.
Veins that are narrowed and causing damage to other organs such as the heart, liver, and kidneys, are treated by balloon angioplasty all the time in Canada. The only difference with CCSVI is that the organ which is being damaged by blocked veins is the brain. Procedures to assess and to treat this condition are established and are commonly provided to patients who don't have multiple sclerosis.
Some of the symptoms of CCSVI include increased vascular pressure and compromised circulation to the brain. Symptoms from this vascular condition include headaches, coordination and cognitive difficulties, and fatigue. All of these are symptoms that are experienced by persons with multiple sclerosis.
Diagnosis is done by means of ultrasound, MRV, and angiogram. There's nothing experimental or dangerous about any of these investigative procedures. They're done every day in Canada to screen for various medical problems. Treatment is done by way of a safe, common, out-patient procedure called balloon angioplasty. A small catheter is passed in through veins and a balloon inflated to push the narrowed parts of the veins out. The procedure is done routinely in Canada on veins in various parts of the body, notably veins which drain the kidneys, liver, and heart. Patients who receive dialysis have been benefiting from this procedure for many years.
I feel there's a strong risk associated with not being treated when you have CCSVI. Approximately 750 people have received treatment for this around the globe, and there has not been one negative result of having balloon angioplasty treatment for CCSVI. The risks associated with not treating CCSVI, well, we all know what the risk is. Those of us with multiple sclerosis have been experiencing progressive and irreversible damage to our brains.
I have some recommendations to make. I have some evidence that I've been experiencing. I've been talking to people across Canada who are experiencing an inability to receive screening, treatment and even an inability to get a consultation with a vascular specialist. My GP referred me to a vascular specialist but he refused to take my referral and told me I had to do to a second specialist in a non-related field. He said he would not accept me for a referral unless I had a referral from a neurologist.
I'm going to skip quickly to my recommendations. Before deciding on committing to $10 million to research I think today the government and Health Canada need to advise the provincial health authorities that it is a violation of the Canada Health Act to withhold vascular medical services from a group of persons based on the fact that they have MS. We demand to have vascular specialists determine if we are eligible for ensured services. Safe protocol is in place for investigational procedures and for balloon angioplasty. Stop denying these vascular services to persons with MS.
Today the government and Health Canada need to tell the Canadian and provincial medical associations that they must immediately direct their members to cease the discrimination against persons with MS by denying them access to the services of vascular specialists and to establish screening and to insured treatment processes, even if we do have MS.
We want this committee to take immediate action to ensure that those most affected are offered immediate screening and treatment on a compassionate grounds while tasking the researchers of this committee to undertake a review of research which has already been done, protocols which are already in place for screening and protocols for treatment--
The Chair: Ms. Radley, you are way over. You know, I am so sorry, and I know that you have submitted some sort of documentation but I would ask that you get this to the clerk and we can get it translated and distributed to the committee members because it's very important information.
We're now going to begin our seven minute Q and A starting with Dr. Duncan.
Ms. Kirsty Duncan (Etobicoke North, Lib.): Thank you very much, Madam Chair. I'd like to thank all of you for coming and particularly for your heart-felt testimony. You've touched all of us very deeply.
I would like to begin by saying that we absolutely need a national brain strategy in this country that includes awareness and education, genetic fairness, caregiver support for a few. I think that's incumbent upon all of us to advocate for a national brain strategy. I also think it is incumbent upon us to explore new promising research. This was the reason for this subcommittee. It was to bring the scientists, the stakeholders and the decision-makers together. We know that in brain conditions time is brain.
The longer we wait the more damage. With MS the earlier we catch it we treat it better.
I would like to know why we are treating MS differently. If there is a vein problem in the liver and in the hip region we image and we treat it. I want to know why MS patients are being denied this treatment. I will also recognize that there has been controversy here that there was a death related to a stent but I want to know why MS patients are being treated differently and I will ask Mr. Savoie, please.
Mr. Yves Savoie: Thank you, Dr. Duncan. I think it's very important as has been identified before that the death followed a procedure that included the use of a stent. With the balloon angioplasty where there is not a spring form that is lodged permanently in the vein there has not been such adverse effects. So I think that's important to identify because both procedures are available and one is more risk than the other as has been identified.
I think the fundamental question that we all face here is the question of the nature of the evidence. If you ask the question of colleagues of your's who are physicians and researchers they would tell you that the evidence available for CCSVI including for the protocols for imaging is in fact in the early stages. That is why a number of medical associations, provincial bodies and the Alberta Health Services Board have made the decision to in fact not make available what is in their view still an experimental treatment.
Ms. Kirsty Duncan: Thank you, Mr. Savoie.
I agree, the venoplasty, this is well known, there was the one death with the stent. Having said that, it is early on, and as a scientist myself, I recognize evidence-based medicine. I also come back to the point that time is brain, and if we wait for MS, it may mean the difference between someone walking and someone being in a wheelchair, someone being able to work and not going to work, and someone living alone or in care.
[b]Does the society recognize the International uni0n of Phlebology, the consensus document that has come out from the expert panel representing 47 countries, that recognizes venous malformations and how to diagnose and treat them? That includes that CCSVI.
Mr. Yves Savoie: Unfortunately, I'm not aware of it, and I'd be delighted to have the reference to explore it.
I recognize the urgency, Dr. Duncan. I also recognize the important link that you have made. MS is progressive, worsening, irreversible, and often debilitating. So in the face of treatments that are available—and may be still in their early stages in terms of the evidence base that is available—I understand that people with MS want to seek those treatments today or yesterday. It's an important value for the MS Society, let me just underscore this, a very important value for the society that the decisions about managing and living with MS on a daily basis are decisions that belong to the people with MS, not to the society.
Our role is to provide information, to provide guidance and to assist people in making decisions.
Ms. Kirsty Duncan: Thank you, Mr. Savoie.
I'm wondering if you could show us...Dr. Zamboni's work there were the initial 65 patients who were treated, 18 months later they were doing well. We know in Poland now about 300 people have been treated. You talked about risk. What is the risk in imaging patients? All MS patients are repeatedly given MRIs. MRV is another MRI. What is the risk in giving them an MRV and a Doppler exam?
Mr. Yves Savoie: In fact the risks are very small, you're absolutely correct.
I think the question there that has been offered to me and to the society is that in our health system, imaging and diagnostic is usually done as a step to treatment. So in this context because the treatment is not immediately available, and would have to be repeated by the surgeon who would eventually do the treatment in the days before the treatment, while it obviously would answer the question of whether the blockage is present or not, because the treatments are not available, the diagnosis on its own, given that it would have to be repeated, is not easily available through the public health system.
Ms. Kirsty Duncan: Mr. Savoie, I have real concerns here. We are treating MS patients differently. If they had the vein problem in the liver, if they had it in the hip, we would image them and treat them. They are given MRIs all the time, and they should not be treated differently, and I think we give them—
The Chair: Thank you, Dr. Duncan. I'm sorry, your time is up.
M. Luc Malo (Verchères—Les Patriotes, BQ): Je vous remercie beaucoup, madame la présidente.
Tout d'abord, je voudrais simplement rappeler une chose au comité, et je suis toujours le seul à le faire et à le dire. La santé est d'abord et avant tout une responsabilité constitutionnelle dévolue au Québec et aux provinces. Dans tout ce qui est élaboré, dans tout ce qui est dit, il faut véritablement en prendre acte et agir de cette façon. Je suis toujours le seul à le répéter autour de cette table. Cela dit, j'aimerais poser une question à M. Baribeau.
Vous savez que Marie-Hélène Dubé, une femme atteinte d'un cancer, mène, à travers le Québec et tout le Canada, une vaste mobilisation afin que les prestations d'assurance-emploi pour les personnes atteintes de maladies graves passent de 15 semaines à 50 semaines, pour faire en sorte que cette clientèle soit traitée sur un pied d'égalité avec l'ensemble des prestataires. Ce que je comprends de ce que vous dites, c'est que pour des gens atteints de maladie chronique — comme la vôtre — où il y a des poussées, on n'est pas capable de prévoir les choses. Pis encore, on ne sait pas durant combien de temps la personne va s'absenter du travail. Il faudrait aller un peu plus loin dans notre réflexion quant à la réforme de l'assurance-emploi, afin de répondre plus spécifiquement aux besoins des patients atteints notamment de sclérose en plaque.
Je voudrais comprendre une chose. Est-ce que les gens atteints de sclérose en plaque... Ce que j'ai semblé comprendre de votre témoignage, c'est que les 15 semaines sont peut-être suffisantes sur une courte période de temps, parce que la poussée peut durer entre zéro et 15 semaines, mais il faudrait, au contraire, s'assurer que la personne puisse s'absenter durant de courtes périodes, selon les humeurs de sa maladie.
M. Denis Baribeau: C'est ça. Dans le cas de la sclérose en plaque, la durée des poussées est aussi variable que le nombre de personnes atteintes.
M. Luc Malo: Donc, les poussées peuvent dépasser 15 semaines?
M. Denis Baribeau: C'est possible. Il y a des poussées avec des rémissions complètes, il y a des poussées avec des rémissions partielles et il y en a pour lesquelles il n'y a aucune rémission. Dans ce dernier cas, elles sont toujours en évolution. Les personnes atteintes peuvent, en gardant leur lien d'emploi, travailler des demi-journées et prendre soin d'elles pendant le reste de la journée.
M. Luc Malo: Dans votre témoignage, vous sembliez dire que les employeurs ont un peu de difficulté à élaborer leur planification de travail avec le personnel en place lorsqu'il y a des personnes atteintes de la maladie dans leur équipe. Pensez-vous qu'en assouplissant les règles quant à l'assurance-emploi, les employeurs seraient plus enclins à accepter plus facilement la présence de personnes atteintes de maladies chroniques dans leur équipe et au sein de leur entreprise?
M. Denis Baribeau: Personnellement, je crois que l'assouplissement des règles d'assurance-emploi bénéficierait davantage aux personnes qui sont déjà en emploi. Comme je l'ai déjà mentionné, quand on passe une entrevue et qu'on arrive en fauteuil roulant, les employeurs sont un peu craintifs par rapport à l'embauche d'une personne handicapée, habituellement.
M. Luc Malo: Avez-vous déjà jasé avec des employeurs pour comprendre leurs véritables craintes par rapport à l'embauche d'une personne atteinte de sclérose en plaque, par exemple?
M. Denis Baribeau: J'ai parlé à des médecins qui font affaires avec des « chasseurs de têtes », des agences de placement. Lorsque j'ai eu des entrevues avec des employeurs, ils disaient qu'ils allaient me rappeler. Lorsqu'ils ne rappellent pas, j'appelle pour savoir ce qui se passe. Ils me disent qu'ils ont choisi un autre candidat. Il y a toujours un autre candidat. Est-ce parce que l'autre candidat était meilleur que moi? Je ne le sais pas, je ne le connais pas. Depuis 25 ans, il y a toujours un autre candidat.
M. Luc Malo: Merci. Monsieur Savoie, quand vous parlez de fonds dédiés au niveau de la recherche, sur quelles bases vous êtes en mesure de dire qu'il faut dédier des fonds, par exemple, pour la recherche sur la sclérose en plaques alors qu'il y a peut-être d'autres maladies qui pourraient aussi avoir besoin de fonds dédiés, donc pourquoi la sclérose en plaques plus qu'une autre maladie?
M. Yves Savoie: Merci, monsieur Malo. La question est fort importante.
Le fonds dédié est pour la recherche sur le IVCC, évidement dans le contexte de la sclérose en plaques. La raison pour laquelle on avance cette demande, c'est à cause de l'urgence dont on vous fait part aujourd'hui. Il y a urgence. Le conseil des médecins du Québec est l'un de ses organes qui a prit la décision de ne pas rendre accessibles ces traitements. Par besoin et soucis d'avoir d'avantage d'évidences. Pour se rendre à l'évidence, il faut peser sur l'accélérateur. C'est pour cela que j'emprunte le parallèle avec les isotopes nucléaires; c'est une crise, c'est une urgence, c'est une question d'intérêt public.
On a parlé avec le Dr Duncan et d'autres témoins, de discriminations dans le traitement. Nous on reconnaît cette inéquité, elle est flagrante. Des gens ici vous en feront état, parce qu'ils ont connu eux-mêmes la discrimination. C'est de là que vient l'espoir que la ministre affectera des fonds additionnels, évidement pour ne pas remplacer d'autres importants investissements que les IRSC font en recherches et les réservera à cette crise d'intérêt public.
The Chair: Thank you, Monsieur Savoie.
We'll now go on to Ms. Leslie.
Ms. Megan Leslie (Halifax, NDP): Thank you, Madam Chair and thank you all very much for being here.
I actually only have two fairly quick questions and then I may pass my time over to one of my colleagues.
I'll start with you, Mr. Savoie. First of all, I know a lot about your work on poverty issues and the NDP has always supported your calls to give a tax credit and guaranteed income and things like that.
I've been working the Alzheimer and dementia folks in Nova Scotia and they've called on the Minister of Health to actually hold a summit on Alzheimer and dementia, recognizing that this is the future of our health care system. It could collapse under the burden of the number of patients we have with Alzheimer and dementia.
You started off by talking about how neurological diseases will be the leading cause of death. Have the different neurological disease organizations been trying to look together at actually calling for what you were talking about, Ms. Duncan, a brain strategy versus....So that is happening? What is happening with that?
Mr. Yves Savoie: There are two things. One is that the initial call which, in fact, was very favourably responded to by the current government, with an investment of $50 million to the Public Health Agency to do research to better understand, in fact, the distribution of the population. How many people are affected? What are the economic consequences of the distribution?
We don't know those data in Canada unlike in cancer or cardiovascular health. It's by coming together as a group of neurological health charities that these studies and the Public Health Agency has now focused attention on neurological diseases.
But, we have asked, in addition, for a $2 million commitment and the partnership of the federal government to develop a national brain strategy. That request has been made and this brain strategy would have many components, genetic equity, research in neurological diseases, issues of income security and, obviously, the very important issues of impact on the family.
The caregiving impact is one of them, but there are broader impacts on the family structures. One of the witnesses spoke about the rate of divorce, for instance. Those issues are very important.
Ms. Megan Leslie: Okay, thank you very much. I appreciate that update.
Ms. Radley, for you, I didn't make it to the rally on the Hill yesterday. I was tied up, but my colleague, Peter Julian was there and reported back to me about what was going on.
You're here as an individual and there were lots of folks coming together on the Hill. I'm just wondering, there is certainly a grassroots campaign happening about CCSVI, but is there a sort of coming together in one group? Is there an organization that's forming that can be sort of a conduit for us to talk about these issues with or is it mostly individuals still coming together in the beginning forms?
Ms. Laurel Radley: I can tell you that around the planet there are actually organizations that have come together. An organization that's across Canada now that has been initiated is called MS Liberation. There is a website. Andrew Katz and Rebecca Cooney have formed this organization and, in fact, called for the rally yesterday. There's an incredibly active--
Ms. Megan Leslie: I'm sorry, could you give me those names again?
Ms. Laurel Radley: Yes, Andrew Katz and Rebecca Cooney.
Ms. Megan Leslie: Thank you.
Ms. Laurel Radley: There's an incredibly active group of individuals and an excellent source of information is a website called “thisisms.com”.
Ms. Megan Leslie: Thank you very much.
Madam Chair, if I do have some time left....
The Chair: Absolutely, three more minutes.
Ms. Megan Leslie: Great. I would actually like to hand that over to Ms.
Duncan. She has quite a bit of passion and expertise in this area.
The Chair: Please. Thank you.
Ms. Kirsty Duncan: I just want to acknowledge the work of the MS Society and of Mr. Savoie.
I want to talk about, that while health care is provincial, the federal government does have some responsibility here along aboriginal health and the armed forces. I think the discussion of CCSVI is relevant to the entire country.
I am concerned that the MS Society is not aware of the International uni0n of Phlebology and its consensus document on the diagnosis and treatment of venous malformations. Data out of Buffalo shows that about 52% of MS patients show CCSVI and the initial data shows treatment relieves brain fuzziness and quality of life. I think shouldn't we not be advocating for anything that improves quality of life? If we look at injections such as Copaxone and interferon that cost $25,000 a year, do we see the results that we have seen with this initial work?
Mr. Yves Savoie: I think I might suggest that the answer to the question about disease modifying therapies be given to you by someone who uses them. My colleague, Joan Ozirny, who is a volunteer, referred to DMTs earlier. The evidence is substantial, but a personal account might be more useful.
Ms. Kirsty Duncan: Is it one-third, is it two-thirds, reducing the attacks by?
Ms. Joan Ozirny: I would say that of the old disease modifying therapies that initially came to market in 1998, in my history of MS I've been on three different disease modifying therapies in order to stabilize.
Generally you change when your condition is declining, and generally when it's declining rapidly, that's when a neurologist would make that decision.
It's difficult to give you a broad answer because it's different for everyone. I mean, MS is a disease that's individual. Clearly a drug or any type of disease modifying therapy is going to interact. I think of the evidence with all disease modifying therapies, the old ones were about 33% effective. The last one, Tysabri, which has a lot of controversy around it as well, is a drug that I have had 32 infusions of. My neurologist determined that it was time to come off that drug because of the side effects that are a potential with long-term use. So that drug is a very effective drug with a 70% reduction of attacks. Of course, attacks create cumulative disability, is basically what I'm saying.
The Chair: Okay, thank you very much.
We're now going to go to Mr. Brown.
Mr. Patrick Brown (Barrie, CPC): Thank you, Madam Chair.
I thank all the witnesses for coming today.
I've been very interested in neurological disorders as well. You have an excellent MS chapter in the city of Barrie. Jeanette Elliott has been doing great work raising awareness about the need for combatting this very difficult disease. We actually have a doctor in Barrie, Sandy McDonald, who is one of the top vascular surgeons who's actually been working directly on the CCSVI possibility. I know he's very excited about the possibilities there as well.
To follow-up on a point that Megan Leslie mentioned at first, in terms of your statement of the leading cause of death, is that something that we are anticipating we'll find out through the study?
Mr. Yves Savoie: These are daily data, but there is no question that the work through the neurological study will cement that. There are all these questions of burdens of the numbers of people, the growth in the prevalence rates as our population ages will obviously add robustness to those data. There's no question about that.
Mr. Patrick Brown: Yes. That's certainly a powerful call-to-arms that you talked about. I know the “Rising Tide” report from the Alzhemier Society expressed similar concerns with an aging population. This is going to be the challenge for our country.
You also mentioned the competition on June 14th we've completed. What was that in regards to again?
Mr. Yves Savoie: This is data which we will announce the results of our CCSVI research competition which was launched just early in the new year. On June 14th, after the review by a panel of experts comprising vascular surgeons, intervention radiologists, MRI specialists and neurologists, we will be announcing a series of research commitments to CCSVI research.
Mr. Patrick Brown: I know the concern. I think Laurel mentioned it, that there wasn't the perspective of vascular surgeons on that committee. Are there perspectives of vascular surgeons being considered?
Mr. Yves Savoie: Absolutely. Ms. Radley's correct, that on our medical advisory committee, there has not been a vascular surgeon.
The recommendations for funding of research applications come through panels that are assembled for various competitions. In the context of the CCSVI competition, obviously that panel was assembled with the expertise that is relevant to that kind of research, and I note as well that we were the first to launch a competition.
Our sister organization, the American MS society, launched a similar competition, and we have assembled a joint panel, an international one that includes European expertise and expertise from both the U.S. and Canada. The experts that do the review are not applicants, so they're not conflicted.
Mr. Patrick Brown: That's encouraging to hear. I actually heard the same concern that Laurel mentioned from that doctor. He's concerned that there wasn't any perspective being taken into consideration from vascular surgeons, and obviously it would make sense that their input be extremely considered.
The panel looking at this is comprised of a group of doctors?
Mr. Yves Savoie: Absolutely. The list is actually on our website. I don't have it here, so it's public information. There's about 20 people, I would say. It's public information. It's a large group.
Mr. Patrick Brown: Okay. That panel is specifically created to look at this?
Mr. Yves Savoie: To look at the requests from both the American and Canadian research competitions in MS. Sorry, it's CCSVI.
Mr. Patrick Brown: Another thing I wanted I wanted to touch upon is--You first talked in the beginning about the desperate need we have for a national strategy on the brain. I think one of the neat opportunities that we have with this committee is that we're looking specifically at neurological disorders. I've heard many times that if we see breakthroughs in research in one of the major neurological disorders that it's going to help potentially all the inter-related neurological disorders.
What opportunities do you see for synergies amongst all the disease-related groups with neurological disorders?
Mr. Yves Savoie: Let me just speak to one area. We talked about dementia. We talked about the very important work for the Alzheimer Society, and they play a very important leadership role in understanding the impact of dementia and loss of cognitive abilities. The reality is that in MS, there are also associated issues of cognitive loss and depression.
These questions about those impacts--impacts obviously in terms of personal quality of life, impact on the family unit, on caregivers--are in fact common. You see readily that while in MS, it is not one of the symptoms that we will speak about--First, we'll speak about fatigue, loss of mobility, loss of sight--there other symptoms are also real for many people. That's where parallels that are very important are.
If you think of research, for instance, on how to care, on models of care rather than the biomedical research, the commonalities are just incredibly promising in terms of advancing approaches to housing, to our health system, the delivery of services. That's just one example.
Mr. Brown, there are many examples, including obviously some approaches that are about the medical aspects. Stem cell research has the opportunity to regenerate lost nerves in Parkinson's, in Alzheimer's, and in MS. In this city, there have been experimental treatments in stem-cell research. There are lots of excitement about those avenues. There's another area of potential collaboration. We're really excited about the collaboration across the major neurological health charities.
Mr. Patrick Brown: As we look at developing a national strategy on the brain, if this committee, down the road, was to prepare a report, what do you think is the most important thing to be included from the MS perspective? If we have a national strategy on the brain, specifically with regards to MS, what do you think is of the utmost importance for us to highlight?
Mr. Yves Savoie: I would tell you that the most important thing is really to mobilize the Government of Canada's role in funding research at a much increased pace, a much increased pace. Our long-term recommendation is for an 80% increase to the budget of the CIHR, and that would bring it to $1.8 billion, because that is fundamental to accelerate the translation of discovery into improved health for Canadians.
The Chair: I'm sorry, Mr. Brown, your time is up.
I just want to thank the witnesses very much for coming and giving your testimony.
What we're going to do is we're going to go. We just have a few things on this topic that we have to discuss before we go into our next health meeting, which is a two-hour health meeting. I'm going to suspend this meeting and I'm going to ask that we go in camera.
Thank you to our witnesses again.
Go ahead please. We're running out of time.
Ms. Megan Leslie: Madam Chair, before we suspend, as this is a neurological disease subcommittee and so we'll be looking at all the neurological illnesses, I was wondering if we could ask Mr. Savoie if he could provide us with information about what the groups are doing together. I think it would be very helpful for us.
The Chair: That would be very nice. Thank you very much, Ms. Leslie.
Mr. Yves Savoie: We'll do that through the clerk.
The Chair: Thank you.
Good day and thank you.
We'll suspend for two minutes please. We should have some time to go into in camera.
[Proceedings continue in camera]
Office of Kirsty Duncan, MP, Etobicoke North
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From: Duncan, Kirsty - Assistant 1
Sent: May 11, 2010 1:33 PM
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Subject: Fw: Transcript / minutes of parliamentary sub committee on neurological health meetings