Health Committee on June 17th, 2010

[Patrick Brown, Conservative, Barrie, ON]

All the provinces can name their best doctors and chief scientists to go....

[Colin Carrie, Conservative, Oshawa, ON]

Yes. So I think a lot of the stuff that you just brought up is already in the pipe, has already been organized, and has had leadership taken on it. So from the process standpoint, I'm just confused about what the benefit is of doing this today, I guess.

[The Acting Chair, Conservative, Dean Allison]

Dr. Duncan is next, and then Dr. Bennett.

[Kirsty Duncan, Liberal, Etobicoke North, ON]

Again, I know that everybody is being inundated with letters. The desperation among 55,000 to 75,000 people across this country...they are writing to MPs, to MPPs. They are fighting so hard. And in many cases, they're fighting for their lives. We have to fight for them, too, and I think that for a letter to come from this committee.... I have a draft.

We have an hour left of this committee. I think we could take an hour. If there are people who are willing to stay to fight to get the right letter.... It would have so much power, coming from this committee.

[The Acting Chair, Conservative, Dean Allison]

Dr. Bennett, and then Mr. Brown.

[Carolyn Bennett, Liberal, St. Paul's, ON]

Yes. I think we could incorporate in the letter some of the things that Colin has said. We thank the minister for convening the conference, we thank the minister for the various things, and we just underline, really, what we're hearing, but the health committee gets to show some leadership and some responsiveness to the people who were in the room for the subcommittee meeting on Tuesday. I mean, I think they want to see us show that they've been heard.

I don't know.... There was certainly a consensus on Tuesday by all of the doctors, for sure, that the MS Society's research proposal is unacceptable to most of them in that there's no treatment arm. It is just comparing and contrasting anatomical features in one population versus another. It doesn't get the people any further in getting the treatment they need. We can say that we heard this and that the minister could encourage the MS Society to work with CIHR to be able to free up some money to get some trials done with the treatment arm.

[The Acting Chair, Conservative, Dean Allison]

Okay.

Mr. Brown, and then Dr. Duncan.

[Patrick Brown, Conservative, Barrie, ON]

There are two things. I don't think the letter hurts. I wouldn't necessarily rule it as powerful, because it's happening already, so I don't think it adds any weight of persuasion to something that's already been convinced.... The minister has already announced money. She's convening this urgent conference in the summer of the top officials, doctors, scientists, and researchers in the country.

I understand that the provincial health ministries are being asked for submissions of who their top people are. The understanding I got from Monday night was that the minister is feeling that it shouldn't be restricted to politicians, because politicians obviously aren't the ones with the most medical expertise to be building this case of evidence as to why this treatment should be available. Obviously that makes a lot of sense. If the provinces require further evidence, then obviously it needs to be the top researchers who build that case.

Another interesting thing that I thought came out of Tuesday was that Alain Beaudet said that the money available with CIHR is not restricted. It doesn't exclude a treatment arm. He said very clearly that clinical research involving treatment was something they were looking for.

I think what we need to do urgently is to make sure those applications go in. I understand there is something coming from Sunnybrook in conjunction with RVH, which would hopefully allow Dr. McDonald to do clinical research that involves treatment. I know that we were all impressed by his testimony. But it's the dearth of applications that's the greatest challenge right now.

The MS Society has said that they requested an additional $10 million to CIHR and Dr. Beaudet and the health minister said it shouldn't be restricted to only $10 million. If we have $12 million in excellent applications for clinical research, why not fund $12 million?

But that said, if you only have $6 million in research, why take away $4 million that could be going to autism or Parkinson's? That's why the figure hasn't been set in stone: because it's based on applications.

The biggest worry right now is that we're not getting those applications in. Maybe as parliamentarians we can encourage people we know in the research community to put in those applications. That's how we could help people the most in the coming months.

Adding a letter doesn't hurt. Does it help? It's already helping. I certainly don't think it causes any harm, but I wouldn't put out alarm bells by viewing that as absolutely necessary.

I think what we've learned in this process is that every province has a health advisory technology committee. They have their college of physicians and surgeons. They're the ones who are saying they're requiring evidence.

For example, in my own local paper today, Aileen Carroll actually wrote a column praising Dr. Bennett and Dr. Duncan, by the way—you'd be interested to know—for raising this in the House of Commons. She said that she has been in conversation with the health minister, and the health minister said this will not be authorized in Ontario—this is in The Barrie Examiner today—because there's not adequate evidence.

Well, we need to give every health minister in the country adequate evidence. The only way you're going to get that is through encouraging applications for clinical research that has a treatment arm and that's what the CIHR is looking for.

[The Acting Chair, Conservative, Dean Allison]

Dr. Duncan.

[Kirsty Duncan, Liberal, Etobicoke North, ON]

We have just learned about this conference, as of Monday night and Tuesday, and we do not have details of the conference.

Mr. Brown, you now have shared some details. We do not know who we're bringing in. Are we bringing in the leading experts around the world like Dr. Zamboni, Dr. Simka, and Dr. Mark Haake? Is it provincial...? Is it all the provincial-territorial counterparts? Is it the ministers? Is it the experts in each province? We don't know that.

In terms of the money to CIHR, as you know, we do not know the amount that has been allocated. We know it's $16 million to CIHR. That's for everything, as you rightly point out.

We also know that the money is for MS in general. We have asked for this to be specifically $10 million. The $10 million request that came from the MS Society was for CCSVI. What we have been advocating all along is that we want the money in order to do diagnosis and treatment, that research should not be an impediment to diagnosis and treatment, and that they need to be done in parallel. Those are clinical trials.

We heard on Tuesday that there is interest in doing them, but the request for proposals--and this is key--has not yet gone out. So in terms of saying to people to get their applications in, there hasn't actually been a request.

[The Acting Chair, Conservative, Dean Allison]

Dr. Bennett.

[Carolyn Bennett, Liberal, St. Paul's, ON]

I left the meeting on Tuesday not really clear.... In terms of the $16 million that CIHR has, which was the increase above their base that was to help with clinical trials, I think what we need to know or advocate for is.... There are a lot of requests out there for clinical trials, juvenile diabetes being a very important candidate.

Out of that $16 million, I don't know how much is for MS, and out of that for MS, we aren't sure really whether it's for CCSVI. So I think that the request by the MS Society for $10 million for research.... The patients are counting on us to fight for clinical trials of the treatment arm of CCSVI. I think the letter doesn't even have to be that long. It can say thanks for the conference, whatever, but can just reaffirm that the minister heard what we heard, which is that there needs to be money for--

[Colin Carrie, Conservative, Oshawa, ON]

She was there.

[Carolyn Bennett, Liberal, St. Paul's, ON]

No, I mean Tuesday morning, hearing from the physicians, and particularly Robert Maggisano.

We should say that we need new money for clinical trials that include a treatment arm but that also capture the status of the people who had their procedures done internationally so we could more quickly advance the knowledge.

[The Acting Chair, Conservative, Dean Allison]

Mr. Brown, and then Ms. Leslie.

[Patrick Brown, Conservative, Barrie, ON]

Okay. Just to clarify, I don't think a letter hurts, but it's not the powerful tool that we're making it out to be. This is all happening. It's all in the process. If the vice-chairs get together and put together a letter today, maybe that's the easiest way to do it expeditiously. It doesn't hurt, but it's not a powerful tool.

I'll tell you why it's happening. Ms. Bennett mentioned JDRF. They're not competing with JDRF. JDRF actually got the funding for the artificial pancreas clinical trials. As you will recall, there was a press conference on it a year ago. It's being done through the Federal Economic Development Agency for Southern Ontario. The clinical trials are occurring right now in Waterloo and Hamilton with $25 million. So they're not competing with JDRF and I don't want us to fear that.

What Alain Beaudet said very clearly was it shouldn't be limited to $10 million. What if we have more than $10 million in applications? Don't set an arbitrary figure. That said, if you only have $6 million in credible applications, why take $4 million out of the pool?

[Carolyn Bennett, Liberal, St. Paul's, ON]

I just want to know what the $16 million is for.

[A voice]

Yes, and we don't know that.

[Patrick Brown, Conservative, Barrie, ON]

And hopefully the majority of that will go to MS CCSVI treatment, but you can't pick an arbitrary--

[A voice]

Clinical trials.

[Patrick Brown, Conservative, Barrie, ON]

To clinical trials with a treatment arm, but you can't you can't pick an arbitrary number when you don't know what the applications are going to be. He has said publicly now that the call is coming. People should prepare. I think he said August 16 or 6, I forget the--

[Carolyn Bennett, Liberal, St. Paul's, ON]

He said he was going to decide by August 16.

[Patrick Brown, Conservative, Barrie, ON]

Okay. Well, then, maybe it's already.... I forget the dates, but he did specify the timelines, and I just forget them.

This is all happening. It's all in the process. But if a letter helps make us feel that we're contributing, I think it can't hurt. But it's happening.

[Carolyn Bennett, Liberal, St. Paul's, ON]

So can we agree on a very short letter that just says to make sure that there are adequate resources for clinical trials with a treatment arm?

[Kirsty Duncan, Liberal, Etobicoke North, ON]

From the health committee.