Evidence of meeting #41 for Health in the 41st Parliament, 1st Session. (The original version is on Parliament’s site, as are the minutes.) The winning word was research.

A recording is available from Parliament.

On the agenda

MPs speaking

Also speaking

Derek Walton  Member of Advocacy Committee, Amyotrophic Lateral Sclerosis (ALS) Society of Canada
Galit Kleiner-Fisman  Neurologist and Movement Disorders Specialist, Baycrest Hospital
Deanna Groetzinger  Vice-President, Government Relations and Policy, Multiple Sclerosis Society of Canada
Marie Vaillant  Vice-Chair, Ontario Division Board of Directors, Multiple Sclerosis Society of Canada
Garth M. Bray  Chair, Scientific Advisory Committee, Neurological Health Charities Canada
Ian McDowell  Vice-Chair, Scientific Advisory Committee, Neurological Health Charities Canada

9:55 a.m.

Conservative

The Chair Conservative Joy Smith

Thank you very much, Ms. Groetzinger.

Now we'll go to Ms. Duncan.

9:55 a.m.

Liberal

Kirsty Duncan Liberal Etobicoke North, ON

Thank you, Madam Chair.

I'd like to thank all the witnesses for the work you do each and every day, from looking after Canadians, to the volunteer work you do.

Mr. Walton, as always, thank you for the funds you raise.

We hear you loud and clear. We need a national brain strategy in this country.

Dr. Kleiner-Fisman, thank you for those wonderful recommendations around centres of excellence, interprofessional care, and the specific recommendations that you gave.

I'm sure you all know I'm going to discuss MS. One of my greatest goals was to ensure that those living with MS across this country had the same access, whether it was to clinical trials or to diagnosis and treatment.

Ms. Groetzinger, as you showed, that is not the case. We have Alberta doing one thing, New Brunswick doing another. In fact, because action was not taken at the federal level, we actually have patients travelling in clinical trials already, before the clinical trials start in this country, in Canada as a whole.

I'm just going to bring up the issue of follow-up care. It still remains a problem. There is not a week that goes by that I am not contacted by someone who's been denied follow-up care. It remains a problem.

Ms. Groetzinger, could I ask, was the MS Society involved in the consensus workshop on ultrasound imaging used to diagnose blocked veins in September 2011?

10 a.m.

Vice-President, Government Relations and Policy, Multiple Sclerosis Society of Canada

Deanna Groetzinger

Thank you very much, Dr. Duncan, for being one of the champions in Parliament for people with MS. As I've said before, I think we are moving in terms of research at lightning speed and we're seeing that benefit. So thanks to you and thanks to really everyone across the board.

10 a.m.

Liberal

Kirsty Duncan Liberal Etobicoke North, ON

Sorry, I have to move you along. I don't want to be rude.

10 a.m.

Vice-President, Government Relations and Policy, Multiple Sclerosis Society of Canada

Deanna Groetzinger

Sorry, but I do want to recognize that.

In terms of that particular conference, I'm not a researcher, so I'm not sure who might have been there.

10 a.m.

Liberal

Kirsty Duncan Liberal Etobicoke North, ON

Were you aware of the ultrasound workshop?

10 a.m.

Vice-President, Government Relations and Policy, Multiple Sclerosis Society of Canada

Deanna Groetzinger

Absolutely, but as I said, it wouldn't be me who would be attending that, so I'm sorry, I really can't comment on that.

10 a.m.

Liberal

Kirsty Duncan Liberal Etobicoke North, ON

But are you aware of that?

10 a.m.

Vice-President, Government Relations and Policy, Multiple Sclerosis Society of Canada

10 a.m.

Liberal

Kirsty Duncan Liberal Etobicoke North, ON

Thank you.

I have a copy of the briefing that was provided to all MPs here that says this took place. The briefing was given on February 13. Can you tell me why Dr. McDonald was not invited? He was personally trained by Dr. Zamboni. He is the leading expert in Canada and his people trained the folks in Saskatchewan to do the diagnosis. As you know, our folks have already gone to Albany. Why was he not invited?

10 a.m.

Vice-President, Government Relations and Policy, Multiple Sclerosis Society of Canada

Deanna Groetzinger

Sorry, we weren't involved with that particular meeting, so it would really be more of a question for the organizers of that.

10 a.m.

Liberal

Kirsty Duncan Liberal Etobicoke North, ON

Okay. Did the MS Society have correspondence with the CIHR regarding this meeting?

10 a.m.

Vice-President, Government Relations and Policy, Multiple Sclerosis Society of Canada

Deanna Groetzinger

I am not aware of that; sorry, Dr. Duncan.

10 a.m.

Liberal

Kirsty Duncan Liberal Etobicoke North, ON

I'm surprised.

I've just done an access to information and privacy request and I asked for all information—reports, briefing notes, and e-mails—regarding the consensus workshop. The response was that after a thorough search for the requested information, no records were located that responded to my request. So I'll further dig into this. Thank you.

I'm going to continue if that's okay.

On May 5, 2010, the MS Society called on the government to provide $10 million for research into CCSVI. Quoting from the release, it said: “The request for funding comes as Canadians with MS continue to seek diagnostics and treatment for CCSVI elsewhere, paying out-of-pocket for tests and experimental therapies that could be provided in Canada.” And it also said, “The MS community has spoken. They want access to diagnostics and treatment for CCSVI in Canada.”

Has the $10 million ever been given by the government?

10 a.m.

Vice-President, Government Relations and Policy, Multiple Sclerosis Society of Canada

Deanna Groetzinger

The $10 million, I'm happy to say, would certainly be part of the funding of the CCSVI clinical trial. As you know, there was a fundable applicant, which is great news, so now we'll need to go through the ethics reviews; they have to take place. And most of that, in my understanding--because we don't know the details of that application, we don't know publicly what that budget would be.... The MS Society has said that we'll put in up to half a million to support that clinical trial, and the rest would be funded through by the federal government and possibly provincial partners. That's my understanding.

10 a.m.

Liberal

Kirsty Duncan Liberal Etobicoke North, ON

Okay, so the $10 million has never been given by government. Did you continue to advocate for it?

10 a.m.

Vice-President, Government Relations and Policy, Multiple Sclerosis Society of Canada

Deanna Groetzinger

We are continuing to advocate for clinical trials. Again, I assume that part of the $10 million would be certainly expended through a successful CCSVI clinical trial if we're able to have one.

10 a.m.

Liberal

Kirsty Duncan Liberal Etobicoke North, ON

I only have a minute left, so it's going to be quick.

In September 2010 you called me to say that the MS Society was going to give $1 million to trials, and in June 2011 the MS Society committed $1 million to the trials. Is that the same $1 million that was announced in the fall of 2010?

10:05 a.m.

Vice-President, Government Relations and Policy, Multiple Sclerosis Society of Canada

Deanna Groetzinger

Yes, that's right.

10:05 a.m.

Liberal

Kirsty Duncan Liberal Etobicoke North, ON

In September we said $1 million. In June there was a re-announcement, and now you've just said it's a half million?

10:05 a.m.

Vice-President, Government Relations and Policy, Multiple Sclerosis Society of Canada

Deanna Groetzinger

No.

A half million for this first stage, our board wants to reserve the remaining half million for a phase three trial if phase one and two are successful. It makes sense to us to be careful of our donors' dollars, and to do it in a phased kind of way.

10:05 a.m.

Liberal

Kirsty Duncan Liberal Etobicoke North, ON

I appreciate your explaining that.

I have one last question. I had never heard until today, and maybe you could tell us, that the MS Society put out a request for clinical trials in 2009.

10:05 a.m.

Vice-President, Government Relations and Policy, Multiple Sclerosis Society of Canada

Deanna Groetzinger

Sorry, I should correct that if I misspoke. It's not a request for clinical trials, but a request for research into the relationship between CCSVI and MS. It's not a trial.

10:05 a.m.

Liberal

Kirsty Duncan Liberal Etobicoke North, ON

That was done in 2009. Thank you.

10:05 a.m.

NDP

The Vice-Chair NDP Libby Davies

Thank you very much. You kept good time there.

The next members of the committee are Dr. Carrie and Mr. Strahl, who I believe are sharing time.