Subcommittee on Neurological Disease Committee on Dec. 7th, 2010

[Carol Hughes, NDP, Algoma—Manitoulin—Kapuskasing, ON]

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.

[Carol Hughes, NDP, Algoma—Manitoulin—Kapuskasing, ON]

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.

[Carol Hughes, NDP, Algoma—Manitoulin—Kapuskasing, ON]

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.

[Carol Hughes, NDP, Algoma—Manitoulin—Kapuskasing, ON]

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.

[Carol Hughes, NDP, Algoma—Manitoulin—Kapuskasing, ON]

So you're saying it's both of them?

[Dr. Alain Beaudet]

Yes.

[Carol Hughes, NDP, Algoma—Manitoulin—Kapuskasing, ON]

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.

[Carol Hughes, NDP, Algoma—Manitoulin—Kapuskasing, ON]

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.

[Carol Hughes, NDP, Algoma—Manitoulin—Kapuskasing, ON]

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.

[Carol Hughes, NDP, Algoma—Manitoulin—Kapuskasing, ON]

Are there any patients involved at this point?

[Dr. Alain Beaudet]

Oh, yes, they're all clinical trials.

[Carol Hughes, NDP, Algoma—Manitoulin—Kapuskasing, ON]

How many?

[Dr. Alain Beaudet]

There are seven clinical trials going on.

[Carol Hughes, NDP, Algoma—Manitoulin—Kapuskasing, ON]

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.

[Carol Hughes, NDP, Algoma—Manitoulin—Kapuskasing, ON]

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.

[Carol Hughes, NDP, Algoma—Manitoulin—Kapuskasing, ON]

So no procedure has been done?