Evidence of meeting #20 for Health in the 40th Parliament, 3rd Session. (The original version is on Parliament’s site, as are the minutes.) The winning word was disorders.
A recording is available from Parliament.
8:35 a.m.
Liberal
The Vice-Chair Liberal Joyce Murray
Dr. Carrie had a specific question about your perspective on the process of developing the framework and what your observation was as to where that went and what happened.
8:35 a.m.
President, Carcinoid NeuroEndocrine Tumour Society Canada
Yes, sorry. When you talk about a framework, are you talking about a national...? Could you explain again, please?
8:35 a.m.
Conservative
Colin Carrie Conservative Oshawa, ON
From the comments I heard around the table, my point was that I think they have been made in the past. One of our colleagues, Mr. Bell, brought forth a motion, and my understanding is that Health Canada did start some collaborative talks with the provinces to see what we could do in that regard. I was wondering if you've followed that along and what you thought of that process.
What is your interpretation of what happened to it, how it fell off or it didn't fall off? I do understand, from what Madam Wong-Rieger was saying, that some of it has continued.
8:35 a.m.
President, Carcinoid NeuroEndocrine Tumour Society Canada
Yes.
Well, Don Bell did speak at our international conference in Vancouver, where we had 35 physicians and about 230 attendees in Vancouver on May 14 and May 15. On May 14 he actually spoke for about 20 minutes, and he talked about his grandson and he talked about the process. He hoped that we would continue developing a rare disease policy in Canada. He is no longer in Parliament, but he would very much like to see this continued.
8:35 a.m.
Conservative
Colin Carrie Conservative Oshawa, ON
Do you think it would be a good idea, as Madam Wong-Rieger mentioned—
8:35 a.m.
Liberal
The Vice-Chair Liberal Joyce Murray
Thank you. Due to a lack to time, we have one more round of questions.
Dr. Bennett.
8:35 a.m.
Liberal
Carolyn Bennett Liberal St. Paul's, ON
I don't mind sharing my time with Dr. Carrie.
Obviously there are a number of pieces that come together. The people from the NeuroEndocrine Tumour Society and the Organization for Rare Disorders need to come together with a plan and put it in a letter to the minister. I hope that, l'esprit d'escaliers, anything you think about after you've left you make sure we know.
I would like to know from Dr. Urbain what it would it take to get yttrium and lutetium approved. Why is that in a special category compared to all the other isotopes we use?
8:40 a.m.
President, Canadian Association of Nuclear Medicine
Carolyn, it comes back to the three As I mentioned: availability, affordability, and accountability. I think it's very important that Health Canada develop processes, such as products like yttrium and lutetium, or that other medications be approved based on European clinical trials, for example. There's no need to reinvent the wheel.
8:40 a.m.
President, Canadian Association of Nuclear Medicine
A good example is that last week a company requested that a generator be imported to Canada from Israel. It was denied by one branch of Health Canada. They sent the company to the special access program. The special access program is limited to physicians, not to companies. So basically they were run in circles.
8:40 a.m.
President and Chief Executive Officer, BIOTECanada
To answer Dr. Bennett's question on whether it is a regulatory change, the answer is yes. We know there are a number of examples they're working on, which Durhane talked about, in terms of how you can define the product, how you would treat it, what kind of evidence and data you'd need to look at, and what type of protocol assistance could be provided.
These programs can be put in place; they're put in place elsewhere in the world. And it could be quite straightforward. It just takes interest and the will to actually do it. It takes someone to say Health Canada has great leadership.
For example, in terms of what goes in the letter, I was just reading CORD's plan for rare disorders. Your letter has her three points right in there. It's:
Develop and implement a regulatory framework for orphan drugs and rare disorders, similar to those of the European Union....
That's the regulatory piece. We can add those supplements into the process, which would allow for easier introduction of new technologies for patients.
8:40 a.m.
Liberal
Carolyn Bennett Liberal St. Paul's, ON
I think what I'm hearing, though, is that the feds have to do it in concert with the provinces. Whatever it approves, the provinces get stuck with the invoice. It's easier if you go forward together.
The other piece is the education piece. If you have a plan for rare diseases that would include educating family physicians, that needs to be in the letter too.
8:40 a.m.
President and Chief Executive Officer, BIOTECanada
For sure. It speaks to her third point here:
Establish a Canadian Plan for Rare Disorders that is based on international best practices....
That speaks to the network you build to share that expertise. And whether it's Health Canada centred, as in other areas, for instance, a committee for orphan products or rare disorders, or whether you're building it through our institutes or health research, it's a way to coordinate it.
It is federal-provincial, but from the regulatory point it's federal leadership. The provinces need to know we're all talking about the same thing. Today, across the country everyone is defining it differently, and it is creating a lot of confusion. That's where part of the problem comes in as well.
8:40 a.m.
President, Canadian Association of Nuclear Medicine
I have a very quick comment. I think federal leadership is critical. Let me give you the example of London, Ontario, which has a neuroendocrine tumour program that patients were going to from everywhere in Canada. Now it's prohibited from doing that. We cannot see patients from out of province because of the funding issue.
I think the need for a centre of excellence is absolutely critical, and that has to come from the federal level, particularly for rare disorders.
Once again, this is a huge opportunity for Canada to redefine its health care system in the 21st century.
8:40 a.m.
Conservative
Colin Carrie Conservative Oshawa, ON
I was just going to suggest earlier, Madame Coleman, that Madame Wong-Rieger mentioned there is good work going on. Her suggestion, I thought, was a very good one. Perhaps the committee could ask where that collaborative work ended off with Mr. Bell and get an update on what's happened so that we don't have to reinvent the wheel.
8:40 a.m.
President, Carcinoid NeuroEndocrine Tumour Society Canada
I would be very interested in that.
8:40 a.m.
Liberal
The Vice-Chair Liberal Joyce Murray
Thank you.
I really appreciate, to all of the guests, all of the suggestions, experience, and wisdom you have brought forward.
The meeting is over. I know that committee members will be here for the next few minutes to continue those conversations. Thank you, again, for taking the time to come and have a round table with us.
The meeting is adjourned.