Finance committee  Thank you. I'm actually going to turn this question over to Dr. Taylor, as he represents our research program.

Finance committee  Absolutely, there's much that can be done. The societies across the country are helping to fill the gaps in the health care system in each province, because it can vary vastly from province to province in terms of the needs. In some provinces, our societies are actually providing very basic things like hospital beds, wheelchairs and ceiling lifts, so people can stay in their home safely.

Finance committee  We have significant concerns about what it will do in terms of access. We do believe that it is going to cause concern within the pharmaceutical companies in terms of Canada as a marketplace, which in fact will restrict access, both when we look at clinical trials and the potential to come to Canada, as well as when we look at Canada as a marketplace for the new therapies we do see coming down the pipeline.

Finance committee  That's correct.

Finance committee  Mr. Chairman and honourable members of the Standing Committee on Finance, thank you for the invitation to appear before you today. I am Tammy Moore, the CEO of the ALS Society of Canada, and I'm joined by Dr. David Taylor, vice-president of research. We appreciate this opportunity to present CAPTURE ALS, a first-of-its-kind Canadian research platform.

Health committee  Yes, you can imagine that as a loved one becomes gradually paralyzed, there are the very physical mobility aspects. That is where an organization like ours—and in your riding it would be our organization—would help to fill a gap left by the health care system. These people are in their homes and as they're losing their independence, they require supports: hospital beds, wheelchairs, ceiling lifts, things to be able to get people in and out of their homes.

Health committee  There is nothing specifically directed towards ALS research in Canada. We were fortunate in the past to be able to secure matched dollars through the Canadian Brain Research Fund, in partnership Brain Canada, but those were matched dollars, and the only reason we had those dollars available was because of the ice bucket challenge.

Health committee  It would be a simple alignment, the same as what they have with the FDA in the U.S. When the clinical trial protocol is approved, it automatically gets open label extension, unless there has been an adverse event or something to signal safety issues associated with it. There should be no reason that a separate application has to go through for an open label extension once the clinical trial protocol has been met.

Health committee  Mr. Chairman and honourable members of the Standing Committee on Health, thank you for the invitation to appear before you today. We appreciate this opportunity to address barriers to access to therapy. It is a reality our community finally has the opportunity to deal with, but it is a growing risk we see for the future.