Subcommittee on Neurological Disease Committee on Nov. 16th, 2010

[Joyce Gordon]

As you know, Parkinson Society Canada has taken a lead, with the other neurological organizations. We had come to some common consensus on seven key areas that we would work on. I mentioned earlier that it's very easy for us to talk about our differences, but when we came together on what's common across all the neurological diseases, we saw several things, which we've all touched on today, that each charity in themselves agrees with.

We have come together, the example being the genetic fairness coalition. That applies to those conditions where genetics play a major role, and as Dr. Schlossmacher said, it's most of them. We can move forward and make a difference together there.

There are some provinces that have indicated an interest in setting up an equivalent in their province with neurological health charities, which we will mentor at the national level, with our partners. I think it's very important that we have the opportunity to have people come together around the brain as a common focus and around those commonalities that we can all benefit from in each specific condition, but that will better neurological conditions overall in Canada.

[Kirsty Duncan, Liberal, Etobicoke North, ON]

Thank you.

As you've pointed out, the Government of Canada, in collaboration with Neurological Health Charities Canada, invested $15 million to conduct the four-year population study. In your opinion, is there enough information right now to begin to develop a national brain strategy or should we be waiting the four years?

[Joyce Gordon]

I would hope that we wouldn't wait the four years. There is information available now. The study that completes in 2013 will better inform our decisions and give us far more detail and data than we have now, but there's a lot of work to do. We need to do a lot of strategic thinking about how we want to coordinate this. How are we going to be positioned to be able to address the outcomes of the research that will be brought forward?

The other opportunity is how do we put into action some of the work that will need to happen? I worry that if we wait four years, it could be another five to ten years before there's any activity out of this investment. I think government would want to see a return on its investment relatively soon after the project completes itself.

[Kirsty Duncan, Liberal, Etobicoke North, ON]

Thank you, Ms. Gordon.

I'm guessing...would the two researchers like to talk about the urgency, as Ms. Gordon has, and particularly the urgency for research?

[Dr. Michael Schlossmacher]

I'd like to make one comment in terms of putting it in the context of what it takes to bring a new drug to the market. In other words, let's say we were to have a breakthrough finding today that we utilized to team up with the biotech industry or with large pharmaceutical companies to take a very specific target identified within the brain. Let's say that this would be perfect to treat Parkinson's disease. If such a breakthrough discovery were made today, as Dr. Stoessl alluded to, a breakthrough that's very interesting, the test of time would show whether it really was the big thing.

If the big thing were to be found today and if one were to look across the landscape of pharmaceutical development, we would see that it would take between 10 to 13 years to bring a new drug to the market, at a cost upwards of $750 million. Therefore, we would encounter an enormous scale of time and scale of cost to actually arrive, then, at that drug being licensed in the EU, in the United States, and by Health Canada.

So time is of the essence. As I remember vividly when the whole issue of stroke management came up--how we could treat stroke better--the central theme was that time is of the essence. I think this is exactly the same thing we face, because with every year that's passing, the expectation is that the numbers will rise for people with dementia or with neurological disabilities, Parkinson's among them. So the longer we wait, the more difficult it will be to stop the train and to reverse the trend. Time is of enormous essence.

[The Chair, Conservative, Joy Smith]

Thank you.

And Dr. Stoessl, you've mentioned....

[Kirsty Duncan, Liberal, Etobicoke North, ON]

I am going to ask for your top research asks, and perhaps that will be to you and Dr. Schlossmacher. You have mentioned the centres of excellence model, you've mentioned multidisciplinary grants, and new mechanisms for clinical researchers. Perhaps you want to elaborate on those.

[Dr. Jon Stoessl]

Thank you for that question.

Yes, I think that really would be my top request. I think that within centres, there's a need to support multidisciplinary teams, and we came close to such a mechanism, I think, with the CIHR team grants, but we've lost that. So I think it's very important to see that opportunity resurrected. It's kind of ironic to me in some ways that we're pulling down that capacity at the same time as other countries are building it up.

I also want to emphasize the importance of having collaborations across multiple centres. So something that I think both Michael and I touched on, but maybe didn't emphasize enough, is that while Canada has a very strong track record of individual researchers, we are also regarded as highly collaborative. In fact pharma likes doing studies in Canada because the health care system actually enables cooperation. We're not competing with each other to get patients, so we can enter a lot of people into studies, and we have certain strengths. Some centres have strengths that other centres do not.

[The Chair, Conservative, Joy Smith]

Thank you, Dr. Stoessl. I'm going to have to cut you off: the time is so over.

I will now go to Monsieur Malo.

[Luc Malo, Bloc, Verchères—Les Patriotes, QC]

Thank you very much, Minister Baird and Madam Chair.

[The Chair, Conservative, Joy Smith]

Please--I don't like to cut you off, but I will--do try to keep an eye on the chair.

Thank you.

[Luc Malo, Bloc, Verchères—Les Patriotes, QC]

Thank you very much for being here this morning.

First, Mr. McGinnis, I would just like to go over one of the elements of your presentation. You said that Canadians are lacking information about Parkinson's and that awareness should be raised about the disease. I was stunned when you said that a lot of people still stop you in the street and say that you're drunk. That's very shocking to me. I was also struck by the fact that your 10-year-old son has to put people in their place. He's a very brave boy. Please send him our best wishes and hang in there.

I see the golf tournament you're organizing and you being here this morning as only the very first steps you're taking on the road to raising awareness about the disease. We are grateful to you for your efforts. Bravo and keep it up.

I would like to continue with Ms. Gordon. You talked about issues related to genetic discrimination. First, I would like to know if you have encountered any cases of genetic discrimination toward people with Parkinson's disease?

[The Chair, Conservative, Joy Smith]

Go ahead.

[Joyce Gordon]

Yes, we have. We've had several individuals come forward who have faced insurance issues, insurance applications when they were requested to check off what conditions they had. Some were requested to either have genetic testing, or when they checked off that they had genetic testing, were asked whether they had the results. Then they were asked to share some of that information.

Some of this relates to hiring, an individual applying for a job who basically did not get the job. We can't say it's a direct cause and effect, but we do know of several cases where this has come forward and we were asked to provide our opinion about whether we could help in this.

We're just starting to gather information now about this in the workplace, and looking at whether or not other individuals across Canada have had this experience. I know we've worked closely with the Huntington Society and other groups who have also experienced similar things. So we will come together to talk to the insurance industry in particular.

It is about raising awareness with the employment sector, the workforce, around what the legal obligations and responsibilities are in terms of what they can ask from individuals. There is no genetic legislation at the moment that will protect individuals from these types of questions and potentially from this type of discrimination.

[Luc Malo, Bloc, Verchères—Les Patriotes, QC]

What do you think are the most important elements that should be addressed regarding genetic discrimination?

[Joyce Gordon]

Well, first of all, when individuals take these tests....

I'm not the expert on this. Actually, Dr. Schlossmacher is better positioned to answer this question, because this is his area of expertise.

The one thing I would say is that if individuals have genetic testing available to them, the whole issue of what is disclosed to them and the counselling that's provided and the ethical issues that are raised....

Greg and I were talking about it this morning at breakfast. If I have genetic testing—it was an issue of cost, to start with—and I get information back and find out that I'm carrying the gene, what do I say to my son? What do I say to my other family members? What are the disclosure issues?

There are all of those pieces around understanding what that means. If I know I have the gene, what can I do about it?

This is an area that Dr. Schlossmacher has expertise in.

[Dr. Michael Schlossmacher]

Thank you very much for your question. May I answer in English? It's easier for me.

Thank you very much.

I think this is a really important issue. There are two aspects that come to my mind. I had the opportunity in the past to write, with a colleague of mine, guidelines for neurologists about genetic testing and Parkinson's disease. There are two issues, as follows.

First, as Joyce just said, the key question is if we learn genetic information, how does it change our management? How does it change our communication? The problem in Parkinson's disease is very similar to what it is in Huntington's disease: unless we have a new strategy and a new way to treat the disease differently, sometimes having information, in and of itself, can increase anxiety and add to difficulty, including, then, issues of confidentiality.

So we are not yet in a position to drastically change our management and how we care for patients with Parkinson's disease when we have additional genetic information. As a researcher, I always want to know what the genetic problem is in an individual. As a caretaker, as a physician, I have to respect that if I can't necessarily utilize that knowledge, I have to respect the dangers and the complications and the problems, both medical and non-medical. At the same time, it's very important to encourage people to participate in studies to find out more about the genes. That can be done anonymously so that the information doesn't necessarily get back to the participant.

Second, any time we consider genetic testing, it is done as a team, with genetic counsellors and experts, to prepare the families and the patient as to what potential things to consider and how it potentially changes the future.

[Luc Malo, Bloc, Verchères—Les Patriotes, QC]

I have one last question, perhaps for you, Dr. Schlossmacher and Dr. Stoessl. Are we close to a cure? I noticed that an announcement will be made this afternoon at the University of Ottawa regarding new funding.

Dr. Stoessl, you also talked about the importance of working in multidisciplinary groups, as the issue is very broad and multifaceted because various elements are involved in the potential causes of the disease.

Could you tell us how close researchers are to finding a potential cure?

[Dr. Jon Stoessl]

I'm always anxious about this question, because while on the one hand it's the holy grail for all of us, and enormous strides have been made, I'm also always very nervous about setting inappropriately high expectations. People have been saying for many years that the cure is five years away.

So enormous advances have been made, largely because, I would say, of the advances in genetics and because they give insights into mechanisms of cell death. If you have more than one genetic cause, you can look at how they interact and at common pathways. As I mentioned, the other example related to the diabetes drug.

Yes, I would like to say that we're close, but it's complicated, because it's not one cause, not one disease; it's multiple causes. To translate understanding the mechanisms into effective treatments is also a non-trivial challenge.

[The Chair, Conservative, Joy Smith]

Thank you, Monsieur Malo.

We'll now go to Ms. Hughes.

[Carol Hughes, NDP, Algoma—Manitoulin—Kapuskasing, ON]

Thank you very much.

I greatly appreciate your input today, Greg. I want to commend you for your courage and strength in coming to share your story with us. You must have a very special son.

[Greg McGinnis]

He's pretty awesome.

[Carol Hughes, NDP, Algoma—Manitoulin—Kapuskasing, ON]

I don't remember hearing, in the conversations you've shared, about support.

How important is it, and how difficult is it, at this point, to get the necessary support network in place for people to come and care for or have someone do some tasks for those who are stricken by this disease? What are the challenges out there at this point in that respect?

[Greg McGinnis]

As far as support goes, I've had somebody come to my house to teach me about, to help me with, the swallowing issues I have. In terms of accessing support, within our communities it's pretty good, really. We can get in contact with the proper channels. They'll come out and assess what needs I have, whether it be handrails or things like that. That's there, and they will help with that.

I guess the problem I have with things like that is that when you go in, or you call them and they come out, they look at you as if to say, “Right: do you really need this?”; it's that type of attitude. It's still that horrible thing where they think you're not the proper age to have this kind of disease. That's the biggest problem.

In terms of support through the family and that, the family is fantastic. After I was diagnosed I didn't go to any group meeting or anything--I was told not to--but my wife went to some of the group meetings. She learned a lot through those group meetings, through Parkinson Society Canada, Barrie chapter. She learned a lot, and she actually convinced me to go, finally, and I did a lot with it. I was vice-president of the chapter for a while. We did a lot of things. I had to leave it because of the heath issues I was having, but the chapter is very supportive. Parkinson Society Canada is very supportive of what happens within their chapters. They have set up caregiver support too.

[Carol Hughes, NDP, Algoma—Manitoulin—Kapuskasing, ON]

Now, you mentioned the challenges with the drug that you need. How important and how beneficial would a national drug program be for patients who have Parkinson's or Alzheimer's?

Perhaps others can weigh in on this as well.