Evidence of meeting #86 for Health in the 41st Parliament, 1st Session. (The original version is on Parliament’s site, as are the minutes.) The winning word was diseases.

A recording is available from Parliament.

On the agenda

MPs speaking

Also speaking

Allan Micheil Innes  National Coordinator, Orphanet Canada
Jacquie Micallef  Manager, Member Relations, Policy & Partnerships, Neurological Health Charities Canada

4:05 p.m.

Liberal

Hedy Fry Liberal Vancouver Centre, BC

Thank you very much, Madam Chair.

Dr. Innes, you were talking about this way of looking at a broader...almost covering someone's DNA.

How far down is this in terms of research? How far has it gone, and what countries are using it, if at all? If you see it being used extensively, what cost savings do you see being achieved by doing that? That's the first question I wanted to ask.

The second one is, as you well know biologics are being used quite often to deal with some rare diseases. What do you see as the benefit of new drugs coming out that are, for want of a better word, generic versions of biologics that are coming out of certain developing countries? As we look at cheaper ways of dealing with rare diseases, what do you see as the downside to that? I wonder if you see this as a risk that might cause problems because, as you well know, generic drugs don't always have the same molecular structure or even efficacy as some of the pharma drugs.

4:05 p.m.

National Coordinator, Orphanet Canada

Dr. Allan Micheil Innes

Thank you for both questions. I certainly can answer the first in more detail and with more comfort based on my level of knowledge. I'll speak briefly to the second. I'm not someone who prescribes biologics personally or uses those drugs.

When we think about personalized medicine, whether it's for rare disease or for the general public, we're eventually realizing that any one given disease, whether it's a rare disease such as Rett syndrome, which has been discussed previously, or the more common diseases, such as breast cancer, rheumatoid arthritis, etc., these will not end up being one disease but many diseases. If a medication is developed with a targeted purpose, targeting that rare disease, then modifying that drug in some way may then be off target. That would be the extent of my knowledge on that matter.

The new technology of next generation sequencing has really been transformative. I would not have predicted its existence even five years ago in my practice, but truly, the opportunity to look at someone's entire genetic code and analyze it now exists. We're using it here in Canada. Canadian researchers have been very successful and internationally competitive in using this technology at a cost that is really close to attainable. It's in the $2,000 to $3,000 range for this type of experiment, which is still a lot of money, but it's not much more than the costs I mentioned earlier of $1,000 to $2,000 to look at a given gene, which is the current way we do it now, one by one, or the cost of an MRI scan or other technologies that we currently use, and these costs are plummeting. I suspect these costs will be less in a few years. It won't be the price that will be the barrier anymore.

There are issues when you sequence someone's entire genetic code to try to find a diagnosis. You will generate enormous amounts of data. You need computers that can handle that and specially trained people who can handle that, and you will identify findings—and I alluded to this briefly in my brief—that are, we could say, incidental. They're not the reason that you did the test. You're examining a child who has a developmental problem and you find that she has a breast cancer gene that might affect her when she's older but might affect her mother now. How do you deal with that?

Then there will be spin-off health care costs to that. You might now be ordering mammograms or breast MRIs you hadn't anticipated. These are not unsolvable problems. The world is thinking about them in a very thoughtful way and Canada is helping to lead that. I anticipate that these technologies will be quite democratized so eventually they will be quite readily available. I think if anything, my plea would be for Canada to lead the world in implementing them in a thoughtful way and not in a non-thoughtful way, because if we do this poorly, we will regret it.

I think we're nearly at the point now where implementing this technology early could save money. It is expensive. Right now you can get these kinds of tests commercially in the States for about $10,000. That's probably too expensive for the health care system to manage, but we're getting close to having it there. When I speak of the diagnostic oddity, the children who I see and the children and the families that the other witnesses speak to often come to the clinic for five or ten years. That's missed work. That's parking at the hospital. That's hospital visits. That's invasive tests, biopsies, MRI scans. The costs often far exceed $10,000, and it's five to ten years of wasted time where we could have had a diagnosis and focused our energy in a different way.

4:10 p.m.

Conservative

The Chair Conservative Joy Smith

You have about one more minute.

4:10 p.m.

Liberal

Hedy Fry Liberal Vancouver Centre, BC

Thank you. I have just one more question I want to ask. You probably won't be able to answer it because it's kind of a philosophical question.

What happens if you can sequence the entire genome structure of a human being, of a particular individual, the entire DNA, and you have some of these coincidental findings? Do you think that would lead us to start treating things that may or may not cause a problem later on? Will we begin to start treating people far too early? Will we begin to jump-start everything on something that we think might happen? What are the ethics of that? What is the downside to that? Forget the money. What is the downside?

4:10 p.m.

National Coordinator, Orphanet Canada

Dr. Allan Micheil Innes

These are tremendous questions and ones that people are thinking about a lot.

I think there are a few issues and it's hard for me to do it all justice in a brief amount of time. But you're right, in that there are both the pros and the cons. There's clearly the chance that we might identify things that we didn't expect before. We might identify a genetic variant that might predispose to sudden cardiac arrest, where you intervene with a defibrillator and you save a life. On the other hand, you might find a genetic variant, and although that gene is linked to a disease, you don't know whether the variant you found in that patient will cause the disease. You may end up screening them, treating them, medicalizing them for conditions they may never develop.

There are lots of ethical issues about genetic testing in children or in adults for many of the reasons that the previous questions have highlighted, including insurance. We feel quite strongly as a community that we shouldn't be testing children just to give them information about what genes they might carry that would affect their offspring, for example, or to identify a gene that might tell them that they're going to develop breast cancer when they're 60, or Alzheimer's when they're 80. That's an adult's right to make that decision, not a child's.

We have to be thoughtful about those things.

4:15 p.m.

Conservative

The Chair Conservative Joy Smith

Thank you so much, Dr. Innes. You made some very good points.

Mr. Brown.

May 7th, 2013 / 4:15 p.m.

Conservative

Patrick Brown Conservative Barrie, ON

Thank you, Madam Chair.

Thank you to the witnesses for the testimony today.

It's nice to have Neurological Health Charities before us. I was on the committee, along with Ms. Smith, when we had the subcommittee on neurological disorders. I know that Shannon from your office was very helpful on some of the input that your organization put forward. It's great to have your input on this study on technological innovation.

I want to get your perspectives on how Canada is doing when it comes to international collaboration. I know we have a lot of hope for some of the work that's being done abroad with Germany and France and the U.K. on having that broader population study.

Are we doing enough of that type of collaboration that enables research and innovation?

4:15 p.m.

Conservative

The Chair Conservative Joy Smith

Go ahead.

4:15 p.m.

Manager, Member Relations, Policy & Partnerships, Neurological Health Charities Canada

Jacquie Micallef

Sorry, I'm just thinking about my answer.

4:15 p.m.

Conservative

The Chair Conservative Joy Smith

Oh, here you don't dare think. You just have to talk.

4:15 p.m.

Voices

Oh, oh!

4:15 p.m.

Manager, Member Relations, Policy & Partnerships, Neurological Health Charities Canada

Jacquie Micallef

You just speak.

4:15 p.m.

Conservative

The Chair Conservative Joy Smith

I'm just teasing.

4:15 p.m.

Conservative

Patrick Brown Conservative Barrie, ON

I guess what I mean is that I see we're doing this on Alzheimer's and dementia, but are there some broader trends we can be looking at, or are those the types of partnerships that you believe work?

4:15 p.m.

Manager, Member Relations, Policy & Partnerships, Neurological Health Charities Canada

Jacquie Micallef

You're right in that we're seeing a lot of condition-specific global partnerships. I think with the development of NHCC, and with these various neurological conditions coming together, it's made us realize, even more so, and now that we're about four years in, that the commonalities between these conditions are so similar.

Now we are getting the results from the study and we're starting to move into the synthesis. I think over the next couple of months we'll have a better idea of, obviously, what the findings are, what some of the gaps are, and what some of the opportunities are for research further down the road.

I think it's absolutely our aspiration that we would keep it at a level of the commonality between the neurological diseases, at the same time recognizing that condition-specific is absolutely needed.

4:15 p.m.

Conservative

Patrick Brown Conservative Barrie, ON

I'd also be interested in your perspective on this aspect. When we talk about CIHR, which obviously is the wing for research that your organizations and your members do a lot of work with, and when it comes to technological innovation, do you think enough of CIHR's resources are put towards technological innovation?

What type of balance would you recommend in terms of direct research and clinical trials and those more tailored towards technological innovation, if you look at new devices and new means of doing things?

4:15 p.m.

Manager, Member Relations, Policy & Partnerships, Neurological Health Charities Canada

Jacquie Micallef

That's a very good question, and I don't think I have the knowledge to answer it. I apologize.

I'd be more than happy to get an answer to that question for you.

4:15 p.m.

Conservative

Patrick Brown Conservative Barrie, ON

No, no, I appreciate that.

There's a question I want to pose to both Jacquie and Allan. It's a question I've asked panels before. We've had a series of panels on technological innovation.

When it comes to areas that are strictly in the federal jurisdiction—a lot of health care, obviously, is provincially administered—one area that is a tool for innovation is the regulation of medical devices. One doctor who came in here said it was a slow process, and another said it was excellent compared with the U.S., where he had dealt with this.

What are your perspectives on the regulation of medical devices with any of the organizations or groups that you've worked with? Are there improvements that can be made in Canada, or do we have the right balance right now?

4:15 p.m.

Manager, Member Relations, Policy & Partnerships, Neurological Health Charities Canada

Jacquie Micallef

I'll let Dr. Innes answer that.

4:15 p.m.

Conservative

The Chair Conservative Joy Smith

Dr. Innes.

4:15 p.m.

National Coordinator, Orphanet Canada

Dr. Allan Micheil Innes

Thanks.

I also feel that I perhaps am not qualified to answer that question. I'm not one who's worked with a lot of groups in implementing devices.

Diagnostic tests are a slightly different matter. I'm actually not aware of Health Canada's jurisdiction in that area, but I think we would certainly make the plea, when it comes to diagnostic tests, that these are medical devices.

I make the point that “recreationally”, if I can use that word, you can get some of your genetics tested if you swab your cheek or spit into a saliva kit and send it to some companies in the U.S. They will ostensibly give you medical information back, which is worrisome to us. They've repurposed those as being basically recreational results in letting you know what your eye colour is and whether you can curl your tongue and such, but also buried in there is actionable medical information which I think should be administered through the appropriate channels.

It's those types of things. I think medical diagnostic tests should always be recognized as what they are.

4:20 p.m.

Conservative

Patrick Brown Conservative Barrie, ON

Jacquie, I have a final question for the members of the Neurological Health Charities.

We can learn a lot from other countries in terms of there not being a monopoly on a good idea. Just as other countries pick up ideas in Canada, do you, whether it's the ALS, Parkinson, or Alzheimer societies, have ongoing dialogue with associations in different countries? Do you know of any new technological advancements that might be happening elsewhere in the neurological field that we should be aware of in Canada or that we should invest in ?

4:20 p.m.

Manager, Member Relations, Policy & Partnerships, Neurological Health Charities Canada

Jacquie Micallef

That is something we're starting to look into more now that we are coming to a point where we're wrapping up the study and we're beginning to look at what the next steps are and broaden our horizons.

Before joining Neurological Health Charities Canada I was with the Alzheimer Society for six years. I just joined the NHCC in January, so it's still very fresh. There is an international Alzheimer body, as there is for many of the other diseases. The international congresses are happening. A lot of them are actually happening now, over the summer and into the fall. So I think that dialogue is happening.

I will take that back, because I know from my experience, we've looked a lot at service delivery in other countries, and it's very difficult to try to take service delivery in another country that's emerged in a very different way, is a very different culture, and place it here. But in terms of this topic, in terms of technology and devices, I think there is a lot that we could learn. As I said, in moving forward and expanding our horizons, it will absolutely be something that we take forward.

4:20 p.m.

Conservative

Patrick Brown Conservative Barrie, ON

Thank you.

4:20 p.m.

Conservative

The Chair Conservative Joy Smith

Thank you so much for your insightful answers.

Mr. Brown, it's really nice to hear you on those questions on neurological diseases. Mr. Brown was a great asset on that committee.

We'll now go into our five-minute rounds, and we'll begin with Dr. Sellah.