Dr. Ashton Embry posted this on Facebook and CCSVI Locator. I copy it here. If you are Canadian and care even a tiny bit about people with MS, Please remember the double cheap double talk you are about to read in the next Federal election. It is time to put the Conservatives right back where they were in 1993.
Subcommittee on Neurological Disease – CCSVI Evidence from Alain Beaudet - December 7, 2010
Dr. Ashton Embry:Below is the transcript of the recent meeting of the Parliamentary Subcommittee on Neurological Disease at which Alain Beaudet ( the head of CIHR who rigged the August meeting on CCSVI to ensure no worthwhile research would be undertaken) was questioned regarding the latest developments on CCSVI.
Beaudet continued his classic doublespeak and outright false statements on such topics as the unknown assocation of CCSVI with MS, the lack of safety of the procedure, and the claim that everyone is receiving good aftercare.
Kirsty Duncan asked some excellent, penetrating questions which Beaudet either ignored or dodged around.
I found it most interesting that the Conservative MP on the Subcommittee, Colin Carrie (MP, Oshawa), is clearly anti-CCSVI and his questions were simply fat pitches to allow Beaudet to expound on various nonsense issues such as how we have no clue if CCSVI is associated with MS (12,000 + procedures have decided this issue beyond all doubt).
Sadly it appears that CCSVI has become a political football with the Conservatives doing what they can to prevent any research and progress on CCSVI and the Liberals and NDP trying to get to government to do what is best for persons with MS. Anyone with MS or anyone who cares about persons with MS has to do some serious reflection if they support the Conservative party.
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Subcommittee on Neurological Disease of the Standing Committee on Health
– CCSVI Evidence from Alain Beaudet
Tuesday, December 7, 2010
The Chair (Mrs. Joy Smith (Kildonan—St. Paul, CPC)):
Good morning, everybody, and welcome. Everybody looks wide awake, so this is a good sign.
Pursuant to Standing Order 108(2), we are doing our study on neurological diseases.
Dr. Beaudet, we want to welcome you.
Dr. Beaudet, as you all know, is from the Canadian Institutes of Health Research.
Doctor, I will give you as long as you need to make your presentation this morning.
Dr. Alain Beaudet (President, Canadian Institutes of Health Research):
Thank you, Madam Chair.
I'm pleased to appear before you today in my role as president of the Canadian Institutes of Health Research to provide you with an update on recent activities related to multiple sclerosis research in Canada. This devastating disease affects, as you know, thousands of Canadians. CIHR is committed to fund research that will alleviate the suffering of Canadians with MS and their loved ones.
First, I would like to share with you what CIHR has been doing on the issue of chronic cerebrospinal venous insufficiency and MS during the last three months.
As you may remember, in early September 2010, the Honourable Leona Aglukkaq, Minister of Health, accepted my recommendation that this issue be investigated in a standard scientific step-wise manner, first by determining whether or not there is an increased prevalence of venous malformations and impaired brain venous drainage in patients with MS as compared with healthy controls, and second, should this association be proven to exist, by proceeding with a clinical trial to evaluate the safety and efficacy of Dr. Zamboni's procedure. This position was endorsed by all provincial and territorial ministers at their September meeting in St. John's.
Already, seven studies sponsored by the Canadian and U.S. MS societies have been launched to determine whether there's a link between chronic cerebrospinal venous insufficiency and MS. To monitor the results from these studies, as well as from related studies from around the world on venous anatomy and MS, CIHR has set up a scientific expert working group.
This group is made up of the principal investigators of the seven MS Society-sponsored studies, the scientific leadership of CIHR and U.S., Canadian, and Italian MS societies, and a representative from the provinces and territories. The working group held its first meeting on November 23 in Toronto.
At this meeting, members of the Working Group reported on the progress they were making on their initiative, funding for which was provided in June 2010. Six of seven studies have been approved by the ethics committee and the seventh is in the approval stage.
The patient selection process for the trials is going very well, with two studies having already met their patient quota. Judging from the reports I have received, Madam Chair, I can say that stringent protocols are being followed and committee members can be assured of the quality and serious nature of the studies now under way. I am confident that these studies will determine whether or not there is a link between cerebrospinal venous insufficiency and MS and thus help us to decide if clinical trials on the procedure itself should be funded.
The experts did stress, however, that it was important to give researchers all the time they needed to conduct these trials, without putting any undue pressure on them. The Working Group also noted that Dr. Zamboni's proposed treatment wasn't without risk, as evidenced by the growing number of complications reported by Canadian patients after they were treated abroad and following the recent tragic death of one such patient.
Consequently, the experts recommend that all future therapeutic clinical trials include a treatment safety assessment.
The seven projects are progressing at an appropriate pace to meet their targets. The members of the working group agreed to meet next June to review preliminary results, and the MS Society of Canada will be posting summaries of these seven research projects on its website in the new year.
In the meantime, CIHR will continue to work closely with the MS Society of Canada and other stakeholders, such as physician associations, to share research evidence as it becomes available to build greater understanding of this devastating disease.
Patients should be discouraged, however, from seeking treatment abroad until more is known on the safety and efficacy of this treatment. But they should also be made aware that no physician will refuse to see and treat them for complications of a treatment received abroad.
I would also like to inform your committee that I will be providing an update of the working group's first meeting to provincial and territorial deputy ministers of health at their meeting on Thursday of this week in Toronto. This meeting will be a good opportunity for all participants to share information on any new developments with regard to this issue.
In conclusion, I would like to highlight the fact that CIHR is currently funding numerous research projects aimed at better understanding and at eventually developing a treatment for MS. In fact, CIHR has funded approximately $49 million in MS-related research since its inception.
Madam Chair, in closing, let me assure you that CIHR and all researchers involved are working as fast as possible to investigate this issue and provide the best science-based advice possible to patients and their families.
I will be pleased to keep the members of this committee apprised of our progress.
Thank you.
The Chair:
Thank you, Dr. Beaudet.
Now we'll go into our seven-minute Q and A, beginning with Dr. Duncan.
Ms. Kirsty Duncan (Etobicoke North, Lib.):
Thank you, Madam Chair.
Thank you for coming, Dr. Beaudet.
Thank you for clarifying that no patient will go without follow-up in this country, because they have been going without. I'm aware of one patient who was denied treatment by four different specialists. So thank you for that reassurance.
Before I begin, could I ask you to table with the committee an agenda from the August 26 meeting, all the papers reviewed and any presentation or notes from it? Thank you.
Could I also ask that you table with the committee the work plan from the expert working group, who the panellists are, the mandate, schedule of meetings, timeline, what evidence will be reviewed to reach a decision about clinical trials—hopefully, a registry—and how much evidence will be necessary to reach a decision to proceed with clinical trials?
Dr. Alain Beaudet:
These are very good questions. Actually, they're all the questions that were discussed at the inaugural meeting that was held in November.
Certainly, I will be pleased to post the documents regarding the composition of the committee and a summary of the discussions at our meeting.
It's a very unusual situation. As you know, usually when researchers receive a grant, they do the research, and they're very silent about their progress because there's intellectual property involved, as you know, and there's also competition involved. Don't try to imagine that there's no competition between these groups. They publish the results, and it's only when the results are published that they start talking about it.
We're doing things very differently this time--very differently. We're asking them to share their results at every step along the way and to be totally open about them. I must say, the response has been fantastic. At the end of the meeting, they all agreed that they were a tad reluctant to proceed in that way, but it had been a fantastic day because they actually learned and shared and got ideas that will allow them to go faster.
They also agreed that they would—after what was, as you can imagine, a very long discussion—reveal their results in six months. Why six months? Why not faster? It was because they all felt that there would be so few results before the end of June that it could be misleading. But they felt that at the end of June they'd have a sufficient amount of preliminary data that it will be meaningful.
Now, we're talking about blinded studies that they will agree to “unblind”, so they can share. It's a very unusual situation, and we won't be able to share those results with the external world, for intellectual property reasons that you can understand.
The Chair:
The time is limited.
Ms. Kirsty Duncan:
I'm also concerned that the new expert panel website has been down for a week, and I'm wondering when it will be up and running again.
Dr. Alain Beaudet:
I wasn't aware of that. I'll make sure that--
Ms. Kirsty Duncan:
Thank you.
Dr. Alain Beaudet:
It went up yesterday, I'm told.
Ms. Kirsty Duncan:
It didn't, because I checked at about midnight last night.
I would like to know who the Canadian neurologists are on that website, please.
Dr. Alain Beaudet:
The Canadian neurologists are basically the researchers who received a grant from the MS Society.
Ms. Kirsty Duncan:
Is Dr. Freedman on that list?
Dr. Alain Beaudet:
Dr. Brenda Banwell is on that list. She's one of the recipients. They're all the grant recipients.
Ms. Kirsty Duncan:
Is Dr. Freedman on the list?
Dr. Alain Beaudet:
There's no Dr. Freedman on the list.
Ms. Kirsty Duncan:
Thank you.
I am wondering if you will require every member of the new expert panel to declare their conflicts of interest.
Dr. Alain Beaudet:
That's a good point. It has been asked and it will be done.
Ms. Kirsty Duncan:
That's good, because just as ECTRIMS does, it eliminates the possibility of real or perceived conflicts of interest.
Dr. Alain Beaudet:
You're absolutely right. It's an issue that was discussed, and we agreed they would all sign such a declaration of conflict.
Ms. Kirsty Duncan:
I really appreciate that.
At the third international scientific conference on CCSVI that I attended—I've attended three of the four, and I didn't attend the fourth because it was a week after the third—we learned that neurologists are admitting that their patients are improving. This is the fundamental question we have.
I'd like to know if you can table with the committee whether we have heard from these neurologists. Have they followed their patients? How have they responded? What if any improvements have they tracked on EDSS scores?
A prominent Canadian neurologist has written that the veins of MS patients are no different from those of anyone else. I would like to know how Dr. Beaudet responds to this, when Dr. Mark Haacke of the U.S. has identified 48 different venous abnormalities of the chest, neck, and spine.
Dr. Alain Beaudet:
That's the issue we're facing. There's a lot of anecdotal evidence.
Ms. Kirsty Duncan:
No, I've seen the MRI images.
Dr. Alain Beaudet:
There's also a neurologist who last week asked me, “What do I tell my patient who says he's really feeling better after the procedure? I've actually seen the EDS score and the NMR, and both have worsened. It's going to be heartbreaking if I tell the patient the truth. What do I do?”
We have to be very careful about the subjective “feeling better” and the objective way.
But let's come back to the veins. The problem is exactly that. On the one hand you have people who say there's a huge difference between patients with MS and healthy subjects. On the other hand you have people who say they're exactly the same and there's no prevalence in MS patients. That's exactly what we're trying to solve. That's what we need to solve.
The Chair:
Thank you, Dr. Beaudet.
We'll now go to Mrs. Hughes.
Mrs. Carol Hughes (Algoma—Manitoulin—Kapuskasing, NDP):
I'm sorry I missed the beginning of your speech. I would like to have heard a bit more of it. If I'm asking you to repeat, I apologize for that.
Dr. Alain Beaudet:
There's no problem.
Mrs. Carol Hughes:
You indicate that no one goes without treatment. I'm wondering how you're getting the message out there in the medical field. We want to make sure the message is out there, and we don't want to hear of another case where someone was refused.
My view is that if you're not feeling well, no matter what the reason that may have brought you there.... We could talk about someone who was a drug addict and may have taken drugs. Does it mean that because they took drugs we shouldn't even go there?
How is that message being put out there? Is it something that will be repeated?
Dr. Alain Beaudet:
It's an important message. I'm communicating with the heads of the various professional associations and colleges to ensure that the message is sent or transmitted.
It's very interesting that in the working group, most of these researchers are also physicians. They all see patients, they all see patients with MS, and most of the these researchers are linked to major MS clinics in Canada. They're the ones who noted that something had been carried in the press to the effect that they were not seeing patients who were coming back, that they were refusing to see them, and that they didn't treat patients with complications. It's absolutely false. Among these physicians and their colleagues certainly, they haven't heard of anyone refusing to treat a patient.
What has happened, however, and I think we have to be clear about this, is that in some cases patients have come to a doctor and asked for a specific test, by saying, for instance, they believe they have a restenosis and need a venogram to demonstrate it. If the doctor doesn't feel a venogram is warranted, he won't order a venogram and the patient will sometimes complain they didn't get treatment—which wasn't the case. So it's very hard to tell, because it's a “he said, I said” situation.
But it was very clear that these physicians in the working group were very concerned about this issue and asked us to make sure that the message was sent out that there's no patient who will not be seen by a physician, even if they had treatment abroad.
That's what I'm trying to do today, to send this message back to you.
I think it's a very important message.
Mrs. Carol Hughes:
Just on that note, are you, or is there a group, working with the provinces on this as well?
Dr. Alain Beaudet:
I will inform the deputy ministers of this message on Thursday when I meet with them to debrief them about the working group, because I think it's a key message.
It's one of the key messages. The other one is that it is not a very safe procedure, as we are starting to realize. It's been claimed to be totally safe. It's not as safe as we thought it was, so we have to be careful.
Mrs. Carol Hughes:
When you're talking about it not being as safe as you thought it was, which procedure are you talking about?
Dr. Alain Beaudet:
The opening of the veins and either the angioplasty or the insertion of a stent.
Mrs. Carol Hughes:
So you're saying it's both of them?
Dr. Alain Beaudet:
Yes.
Mrs. Carol Hughes:
How much has been invested so far in the research?
Dr. Alain Beaudet:
At CIHR—and we're certainly not the sole investors in MS research—we've invested $49 million in the past 10 years in MS-related research.
Mrs. Carol Hughes:
I understand that, but I'm talking about research on this specific procedure so far.
Dr. Alain Beaudet:
Right now, $2.4 million has been the total amount invested by the Canadian and U.S. MS societies in the seven projects looking at the association.
Mrs. Carol Hughes:
What is the breakdown of dollars on that? I'm trying to figure out if all of that is administrative or—
Dr. Alain Beaudet:
No, no, it's actually to do the research. That money is actually to do the research.
Mrs. Carol Hughes:
Are there any patients involved at this point?
Dr. Alain Beaudet:
Oh, yes, they're all clinical trials.
Mrs. Carol Hughes:
How many?
Dr. Alain Beaudet:
There are seven clinical trials going on.
Mrs. Carol Hughes:
But how many patients are the trials working with?
Dr. Alain Beaudet:
It all depends. We're talking of several hundred patients altogether, for sure. The number of patients varies between the studies.
I couldn't tell you the exact number of patients.
Mrs. Carol Hughes:
Have any of those undergone the procedure?
Dr. Alain Beaudet:
Let me remind you that the seven studies are meant to demonstrate whether there is an association between venous malformations and venous blood flow in the veins of the neck and MS, that is, whether there is an increased prevalence of that in patients with MS as compared to healthy controls. Basically, with some variations—some are in kids and some are in adults, and there are some variations in the protocols—all of these studies compare a group of MS patients with a group of healthy subjects. They look at the anatomy of the veins and at the blood flow to see whether there is a blockage of the blood flow. It's all done in a blind fashion, so they don't know whether the patient has MS or not. When the study is unblinded, they'll see whether there's a difference in the incidence of the malformations and blood flow in the two groups. That's the principle.
Mrs. Carol Hughes:
So no procedure has been done?
Dr. Alain Beaudet:
There's a procedure. The procedure is a diagnostic procedure, and that's a very important one because it's another major issue. We really don't know what the best approach is to diagnose this condition. Is it, as Dr. Zamboni claims, ultrasound imaging? Is it venography? Is it nuclear magnetic resonance imaging?
What these projects are doing is comparing the various techniques. Most of them use, as a baseline, the ultrasound approach done by Dr. Zamboni to try to at least reproduce these results. Most of them, actually, have sent their technicians to Buffalo to get the proper training to read these Dopplers in the same way as Zamboni did, and that's their baseline. They're comparing that with venographic studies, and in some cases NMR studies.
We want to establish the best possible approach to diagnose the condition, so when there's a trial in phase two we know exactly what the perfect, true inclusion criterion is and what the standard used in terms of diagnosis will be.
The Chair:
Thank you, Dr. Beaudet.
Dr. Alain Beaudet:
Sorry, it's a bit technical.
The Chair:
That's okay. Don't apologize. This is what you're here for. Thank you so much.
Dr. Carrie.
Mr. Colin Carrie (Oshawa, CPC):
Thank you very much, Madam Chair.
Thank you very much, Dr. Beaudet, for being here today.
As you know, in another life I actually treated people who had MS, and for me and so many people it's about real people, real families. I was wondering if you could take a moment and discuss the importance of ensuring that the science is sound before moving ahead with these clinical trials, and maybe explain to people who might be listening or might read this what the risks are of not waiting for the signs.
Dr. Alain Beaudet:
It's very clear. The risk of not waiting for the signs is subjecting patients to a treatment that is not innocuous--and we have proof of this--and that could have a number of complications, without having the proof that we're actually improving their condition. Some of these complications could be serious.
We're talking about blood clotting. We're talking about internal bleeding, because in most of these patients there are thinning agents that are used as drugs before the procedure and after the procedure. In the case of a stent insertion, indeed the safety is probably even less because stents, as you know, are meant for arteries. The wall of the vein is really thinner, and the danger, of course, is that the blood flow is not as rapid and there's a danger of clotting.
All of these things are serious, and we don't have a real appreciation because it's not very common to do angioplasty of veins and to put stents into veins. We don't have a good idea of the incidence of complications and negative events. There's no question that a good clinical trial will have to include, either as a phase one or into the trial, a measurement of the safety component.
Mr. Colin Carrie:
All right.
You also mentioned the research associations in your opening statement--and you've been in touch and in good communication with the different associations. I was wondering if you could let the committee know what the positions of the different physician associations, the MS associations, and other stakeholders is on the need.... You mentioned that you're working to try to demonstrate the link between CCSVI and MS before conducting these clinical trials.
What are the experts saying in these different associations?
Dr. Alain Beaudet:
By and large, it's really the position of most MS societies. And it is certainly the position of the U.S. and the Canadian MS society. The German MS society had a very harsh statement. On the other hand, the international MS society had a more balanced statement, stating the importance of furthering clinical trials, clinical research, to establish the validity of the procedure.
I think it's important to note that in Italy the MS society is sponsoring a very large study on several thousands of patients, involving a large number of sites in the country, to do exactly what the seven studies are attempting to do here. It's association studies to try to demonstrate whether there's a link between patients with MS and this entity called CCSVI. So we're in contact, and we'll be monitoring the results of that very large study, as we're monitoring the ones from the studies carried out in Canada and the U.S.
Mr. Colin Carrie:
Because you mentioned Italy, I was just curious. Dr. Zamboni came up with this procedure, so has he received authorization to proceed with it? If he has not, why hasn't he?
Dr. Alain Beaudet:
I think this is an important point. First of all, Dr. Zamboni was originally part of the very large association studies that involved I think around 20 sites in Italy, and he withdrew from the study. The scientific director of the Italian MS Society told us that he withdrew because he asked that all the images from all the sites be vetted by his own laboratory, which obviously the committee didn't feel was appropriate. Dr. Zamboni, however, is also applying for a therapeutic trial, a trial this time to investigate the treatment. As far as I know, the study doesn't have all the funds necessary to be fully carried out. He did receive a bit of money from the province where his lab is, but I don't know about the status of the ethical approval of this study. He was supposed to receive ethical approval at the beginning of December. I don't know whether he did receive it.
Do you know? We don't know.
The last time we spoke to Dr. Battaglia, the scientific director of the Italian MS Society, Dr. Zamboni still hadn't received the ethical approval for his studies. It was pending, and we were told the beginning of December. What we know, however, is that right now the funding from the province that he's receiving for that study is not sufficient to carry out the type of study that would be necessary to prove or disprove the efficacy of the treatment.
Mr. Colin Carrie:
Do I have time for a little more here?
The Chair:
Yes, you do.
Mr. Colin Carrie:
I believe there was a study done in Sweden, and I was wondering if you were familiar with that and are able to elaborate on the process there and the results of that study.
Dr. Alain Beaudet:
Yes, there were studies in Sweden and Germany that actually showed very different--as, Kirsty, you know--results from those of Dr. Zamboni. Actually, essentially, they found no difference between the venous anatomy of patients with MS and that of normal controls.
Mr. Colin Carrie:
How many people did they do that study on? Do you remember, off the top of your head?
Dr. Alain Beaudet:
I don't remember. I don't want to venture a number. I'm not good at remembering numbers. I can't remember my phone number, so I won't go there.
But that's why we're doing these studies. When you have a controversy like this, and you have one group finding one thing and another group finding the other thing, you have to try to devise a very strict protocol. What's really great about these studies is the use of several diagnostic approaches that will be compared to determine whether (a) there's a problem with the anatomy, and (b) there's a problem with the blood flow, and trying to associate that with MS.
The Chair:
Thank you, Dr. Beaudet.
We'll now go into our five-minute rounds of questions and answers, beginning with Dr. Duncan.
Ms. Kirsty Duncan:
Thank you, Madam Chair.
And thank you to Dr. Beaudet for coming.
I want to pick up on a couple of things. There really has been follow-up missing. I gave one example; I can give many examples of where patient appointments have been cancelled and then they were told they would no longer have their specialist. There have been tests that are repeated every six months for drugs that have been cancelled, and people who have had clotting issues are being refused treatment.
I want to pick up on the expert panel that was talked about for the August 26 decision. If you're going to have an expert panel, I would like to see people who've actually been involved in the imaging and done the procedure be involved. I know there was fear of biasing the sample. Having said that, there were people on that panel who had actively spoken out against the procedure for over six months. We absolutely must have evidence-based medicine here in Canada. We have to. We do need to establish protocols around imaging, whether it's ultrasound, whether it's MRI. We need to know if we are going to be using stents. We need to establish these protocols.
As you know, I have concerns because I do think we're doing replication work, work that's been done elsewhere. If people had gone to the international conferences...Bulgaria, Canada, Italy, Kuwait, and the United States are all presenting the same data. That data is as follows: 87% to 90% of MS patients show one or more venous problems if ultrasound or MRI is used. Now the outlier to that was in Buffalo, and you have to look at those results. How was the study undertaken? Did you have someone who was trained in the operations? They also looked at first-degree relatives, and we know that venous problems may run in families. So there were issues.
Dr. Carrie brought up the Doepp and the Sundström papers. You have to look at the history of that. Those papers were published in six weeks. That's highly unusual in science. Dr. Simka's work out of Poland has done angioplasty on 381 patients, which people would describe as the gold standard; 97.1% showed one or more venous problems.
I'm going to hand that over.
Dr. Alain Beaudet:
There are several elements to your questions. I'll try to go through them rapidly.
First, I want to tell you how important it is that MPs care and how important is your statement about the need for evidence-based practice.
Ms. Kirsty Duncan:
We have to.
Dr. Alain Beaudet:
It's the basis of our medical practice in this country, and at times it's tough to follow. You feel for those patients who have very few options right now. Quite frankly, the last thing I want to do is blame the patients, because I understand that. We have a role to explain to them why we believe they shouldn't go abroad at this point to get a treatment.
I really do believe that the majority of physicians will never refuse to see a patient who is sick and wants to see them, whether they've been—
Ms. Kirsty Duncan:
I can give you case after case after case.
Dr. Alain Beaudet:
You may well be right, but I can tell you that it's not acceptable; we will not condone it, and we'll try to, as I said, by working with the professional associations and colleges, impress upon these groups the importance that patients are seen and are treated. The only thing I can tell you is that the working group—as I said, most of them were actually physicians—said they would never refuse to see patients, and a lot of their patients had actually undergone treatment abroad. But it's an issue. We don't accept it. We have to try to change that, and there's a message that must be sent.
The other thing is the composition of the August working group. I don't really want to go back to that, but since you bring it up again, our criterion was very simple. We invited physician scientists that were funded either by CIHR or by the U.S. NIH. That was simple, clear. They're all—
The Chair:
Thank you, Dr. Beaudet.
We'll now go to Dr. Carrie.
Mr. Colin Carrie:
There has been a lot of attention given to chronic cerebrospinal venous insufficiency. I was reading in the paper today--I get up really early, and I'm one of those strange people who actually reads the paper before I get to work--that there is a new drug out, and I believe it's called RXR-gamma.
Could you bring us up to date on what else is going on in MS research around the world?
Dr. Alain Beaudet:
Actually, there are several.... An article came out yesterday about another breakthrough study by a British group using stem cells to regenerate myelin on the demyelinated fascicles. There are several drugs in the pipeline. One was recently accepted by Health Canada. We learned at the August conference that there are several others in the pipeline that are being investigated. You never know before the trial is completed whether it will work or not, or how good it will be. But it's not as though there is nothing coming.
So there are two avenues: the pharmacological avenue, on the one hand, and the stem cell avenue. Splendid work on stem cells is done here in Canada by Sam Weiss at the University of Alberta.
Mr. Colin Carrie:
I remember that in anatomy class we did a lot of work on the venous system, especially at the base of the skull and the upper part of the spine. What I was told was that there was a lot of “normal variance”. I look around this room, and if everyone in this room had these tests....
What's the difference between a normal variant and an abnormality? Do you know?
Dr. Alain Beaudet:
That's one of the huge issues.
There are two problems. We didn't worry a lot about the variation in the anatomy of neck veins until this happened. That's one thing. And why didn't we worry? It was because there is a huge redundancy in the number of veins and capacity for drainage, and it's normal. The veins have to be able to drain whether you're sitting, whether you're upside down, or whether you're standing. So the neck vein system has often been referred to as the “delta of the Nile”. You can block a number of rivulets, but in the end it drains perfectly. And that's one of the big issues.
So even if there are a number of anatomical differences in patients, we'll have to ensure (a) that these differences are truly, systematically, more numerous than in controls, and (b) that they truly impair drainage. That's why some of the techniques that are going to be used in these seven studies that I keep referring to should give us some information regarding blood flow and the anatomy.
There are also two groups that are doing post-mortem studies on patients to look at the vein anatomy in much greater detail than we've done so far. They will do this by moulding, by injecting silicone into the venous system, by being able to make very accurate measurements. They will be comparing--I can't say healthy controls because it's post-mortem, but comparing normal individuals with people who died from MS.
Mr. Colin Carrie:
You mentioned the process you've put in place. Actually, it sounds very impressive. You mentioned how you're getting the researchers together, and you said, “They've learned, they've shared, and they've revealed.”
I was wondering, with this new process, this unprecedented research process, how is it going to benefit the MS research community and MS patients?
Dr. Alain Beaudet:
It's certainly going to benefit patients. The work is going to go faster as they benefit from one another's experience. I would say that it's a microcosm of what's going on more and more in science. There is always a mix of collaboration and competition, but there is more collaboration as we realize that we're dealing with complex issues, and that we are way better equipped to deal with them if we work together instead of against each other.
The Chair:
I'm sorry, we will have to end it there.
Dr. Beaudet, I have to say that it's an honour to have you here on our committee.
Dr. Alain Beaudet:
Thank you very much.
The Chair:
You know what struck me? It's that the very important work of the subcommittee has brought awareness and is bringing some very good dialogue. It's great to see the different countries doing different studies. Because this is a collaborative medical community or a scientific community, we can actually get the answers that we want rather than the political debates about it.
I think that's what's so important, and I think that's what this committee wants. There are very good questions this morning.
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