Health Committee on April 26th, 2012

[The Chair, Conservative, Joy Smith]

Good morning, ladies and gentlemen. Welcome to the Standing Committee on Health today.

Pursuant to Standing Order 108(2), we're doing a study of neurological disorders. As the committee knows, there has been a lot of work done on this particular file. We had a very active subcommittee on this, and we are very pleased to have our witnesses here today.

There are a couple of witnesses who aren't here yet. I waited a couple of minutes just to see if they would arrive, but we're going to start and continue with them as we do it.

As you know, it's ten minutes of presentation.

Dr. Hu, if you could start with the presentation, I would be very grateful. Thank you.

[Dr. Bin Hu, Professor, Department of Clinical Neurosciences, University of Calgary, As an Individual]

Thank you very much, Madame Chair. I am very happy to be here.

I'm Sutter professor at the University of Calgary, which is a unique position. It is jointly supported by the Parkinson's Society of Alberta, the university, and Alberta Health Services. I do both translational research in patients as well as basic research in the laboratory.

My interest in Parkinson's disease is about how sensory cues, particularly music, can be used to help Parkinson's patients recover their motor function. The interest originated from a phenomenon we know as paradoxical movement. Patients with Parkinson's can't move, but some of them can dance, and they dance well.

I assembled a team five years ago, and this is the only study funded by the Canadian Institutes of Health Research to study how music can be used to help Parkinson's patients regain their function. The scientific basis of Parkinson's disease--how and why they respond to music--was not very well understood five or six years ago. But now we have a pretty good idea about where the brain circuitry is that is possibly responsible for these actions.

One thing I want to highlight here is that Parkinson's disease is a chronic disease. However, if you look at the patient populations, there are patients who are extremely resilient: they walk in the room, they're 80 years old, and they don't look like they have Parkinson's. And there are the patients on the other extreme: they're extremely worse. The question is why some patients are doing extremely well and others are not. The second question is how can you prevent disease progression to a state where they've lost their functional independence?

In experimental research we have noticed, and many other people have noticed, that when you make animals Parkinsonian by injecting them with toxins, some of these animals spontaneously recover. They actually become symptom-free after a few months. When you look at their brain, there's a functional compensation. So you lose some parts of the brain, particularly the so-called dorsal striatum. The dopamine is depleted. But just beside this structure there is overgrowth. There is a part of the brain that is compensating. This is the part of the brain that responds to music.

The challenge has been if you want to use music and in what way you want to do it. I have worked with two Canadian start-up companies who have developed an app for the iPod Touch. This device came about eight months ago with very precise sensors that can measure step size. What happened with this device was that we had a long list of music, a play list, and a patient would put the device on his or her thigh so that when they walk they have to walk with larger steps in order to get the music to play.

I can give you a brief demonstration. If you push one button, you will see on the screen it will read directly the step size. When it's rotated it measures your step size and you will play the music. But if your step size becomes small, the music will stop. It reminds the patients to re-engage.

When this device was put on the patients, some of them did not walk at all. Now they walk about two kilometres a day. The 20 patients I have now have, as a group, accumulated 1,000 kilometres walking, 300 hours listening to music.

Does it work? This is a small population. What we have found is that actually some patients have some unique symptoms. For example, they were afraid of going on escalators, and now they can go up and down without any hesitation or freezing. They couldn't swing their arms, and now they swing very easily.

So I am very optimistic about the new technology and the new science behind its design. If we can help patients to engage self-care and make them more resilient, I think many patients can benefit not only from music but also from exercise. The exercise itself actually is the single most mentioned intervention, and it has been shown to reduce the mortality rate by 50% for an average person who walks half an hour a day.

So how do we make these people comply? Parkinson's disease is a good example. Parkinson's patients have a mobility problem. They are older. If we can mobilize this population to walk more, for the general population as a whole, I think this could work even better.

I will stop here and take your questions.

[The Chair, Conservative, Joy Smith]

Thank you.

We hear all the presentations and then we have a designated time for the questions.

Mr. Strahl has kindly asked me if I want to ask some questions, so I will put my name down for later. Thank you, Mr. Strahl.

We'll now go on to our next presenter, from the Parkinson's Society of Canada.

David Simmonds, you're on. We usually have the presentation for ten minutes, but you're saving it, so we'll put you on for five more minutes.

Dr. Simmonds, go ahead.

[David Simmonds, As an Individual]

Thank you.

My name is David Simmonds. I'm a former national chair of Parkinson's Society of Canada, but I'm here on my own behalf, as an individual who's lived with Parkinson's for the last 20 years. You said Dr. Simmonds, and I just want to make sure there is no misunderstanding.

Parkinson's disease is a disease of deterioration of the brain. Traditionally everybody has thought of Parkinson's disease as being expressed and needing to be treated by motor functioning, but it's actually a disease that affects executive functioning in the brain. It affects the personality, and therefore it affects relationships.

Although I've had Parkinson's for 20 years, I'm very fortunate that last year I had what's called deep brain stimulation surgery. This is basically having a brain pacemaker implanted: electrodes in your head, batteries in your chest, and a remote control device, which my wife would like to use more often than I do. Before I had that surgery, every day was a bit of an adventure.

Parkinson's patients have what they call on periods and off periods, when the medication ceases to function well. My off periods were about two hours a day. For example, I couldn't turn in bed; I couldn't get up in the morning until my drugs had kicked in. Going for a glass of water in the kitchen was an adventure. You have to get the pill, the glass, the water, and you have to walk between all the points. That was very difficult.

My symptoms have diminished and my neurologist tells me that I now present like a person with either no Parkinson's or first-year Parkinson's. But that's with only two of my motor functions. My executive functioning, vis-à-vis my vocabulary and IQ, has significantly deteriorated. My complex reasoning skills have diminished.

The surgery has been great, but it came ten years after I had to retire because of Parkinson's. It's been a marvellous boon to my movement, but it hasn't been a cure, and it's by no means a cure.

People like me who have Parkinson's worry about a number of things. One is the timeliness and quality of diagnosis. By the time you see a neurologist, you've probably had Parkinson's for many years. The question is, do we have enough primary care physicians and para-physicians in the field who will know the symptoms early enough to spot them so intervention can be more successful?

Second, we worry about the cost of Parkinson's disease, in terms of lost income, disability income--is it going to be there? Are the drugs going to be too costly? Is the hands-on paid care going to be there?

The Parkinson's patient tends to withdraw, become more private, less communicative, quite inexpressive in their emotions, so their sociability suffers a great deal. More seriously, the burden falls on the family tremendously. I'm sure you've heard before about caregiver burdens, but the sacrifices that are made by family members are very true.

I said it's a disease that affects the personality. I certainly feel that my personality has changed, and my wife would say—this is hearsay evidence, I guess, but as a lawyer I would say that—she's been lonely and I'm not the person she married. My personality has evolved through the Parkinson's, to her detriment, I think.

If I had anything to say about the impact and the need to act with respect to Parkinson's, it would be that any illness has a dead weight of social cost that has no real economic value. The disability insurance industry evaluates an illness and asks how sick you are. Are you sick enough to get disability insurance? Are you sick enough to get a full disability credit? That has no economic value-added.

Parkinson's, like other neurological illnesses, is a disease that wastes the opportunity for intellectual capital to be developed in Canada. I mean, you can argue that our oil and gas are our biggest natural resources, but our second-biggest natural resource is our intellectual capacity. These diseases rob us of our intellectual capacity. To me, that's the tragedy of it, the lost opportunity to Canada.

Canada is a leader in both pure research and bedside research. At the Toronto Western Hospital, where I had my surgery, there were doctors and post-docs from literally all over the world—China, South America, Asia, Europe—coming to study at that facility to see the latest in surgical and intervention techniques.

I encourage Canadians to continue to support that bench and bedside research.

If there's any plea I would make, it's that the Swedish studies that are under way under the supervision of the Public Health Agency of Canada not simply be dropped on the table. They should be followed up with action across the front of the illness, and a national strategy should be developed.

If any one person perhaps symbolizes the tragedy of the lost opportunity for the development and employment of intellectual capital by Canadian society, it's one of your colleagues, my friend and the honorary national chair of Parkinson Society Canada, Senator Michael Pitfield, who I'm sure you all know.

Those are my remarks. Thank you.

[The Chair, Conservative, Joy Smith]

Thank you so very much. You had some very profound remarks, and from a personal side it gives us a picture. Thank you so much, Mr. Simmonds.

We'll now go to the Parkinson Society, with Joyce Gordon, please.

[Joyce Gordon, President and Chief Executive Officer, Parkinson Society Canada]

Thank you, Madam Chair and members of the health committee, for the opportunity to speak to you today about three key points. The first is integrated care, which includes specialist and primary care access for people with Parkinson's. The second is caregiver support. And the third is public and professional awareness.

Parkinson Society Canada has ten regional partners, covering every province and territory, and 235 community-based support groups from coast to coast. We are the leading voice for people living with Parkinson's in this country. We provide innovative leadership, information, and resources to Canadians, policy-makers, industry, health care professionals, and the media.

Today, as you know, 100,000 Canadians live with Parkinson's disease, and this number is forecast to double by 2030. It is the second most common neuro-degenerative disease, and its prevalence continues to grow as the population ages. Parkinson's is a progressive, chronic disease. The cause remains unknown, and there is no cure. It affects all aspects of daily life.

The average age of onset is 60, although more than one in 10 people are diagnosed before the age of 50. Parkinson's is more prevalent in men than in women and affects people of all ethnicities.

Parkinson's is not just a disease of the elderly, and it is not a natural part of aging. It affects adults across a wide range of ages when they are busy building careers and raising families, as you've just heard from David. Thousands of Canadians have been forced into unplanned early retirement, and many face the harsh reality of poverty as an added consequence of this disease.

Most people think of Parkinson's as a movement disorder. As David mentioned, it's a complex brain disorder that includes non-motor symptoms, such as depression and cognitive impairment. Unfortunately, the non-motor aspects of Parkinson's disease are often under-recognized and poorly treated.

Studies have shown that over 50% of people with Parkinson's will experience some form of cognitive decline. The motor symptoms that most people associate with Parkinson's include shaking, slowness of movement, impaired balance, and rigidity, but it's much more than that.

As you've heard from David, and you would hear from most people who have Parkinson's, the disease affects every system in their bodies and every aspect of their lives. For example, soft speech becomes a challenge in day-to-day communication, and reduced facial expression impacts how other people view a person with Parkinson's. Both motor and non-motor symptoms of the disease bring on hospitalization, which results in an increase in health care utilization and the escalation of economic burden.

Many people who require such care are not being referred to the relevant specialist, and our primary care professionals need more information on how best to handle appropriate treatment options as they work together with a specialist.

We need health care policies at early diagnosis, and cost-effective treatments that slow the progression of Parkinson's disease and reduce the symptoms. This could result in improvements in productivity of the working-age population, decrease the need for caregiving, improve the quality of life for people living with Parkinson's, and reduce the economic burden on our health care system.

We must also ensure that caregivers are supported. Caregivers, as you know and have heard from David, are often spouses or family members who contribute many unpaid hours of support, saving the health care system millions of dollars. Policies such as respite, tax credits, and employment insurance benefits for caregiver leave must be put in place to ensure that caregivers receive the support they need to continue their efforts. This would be very helpful in alleviating their financial burden, particularly as many must leave their employment for short periods of time. Some are eventually forced to become full-time caregivers and often provide support to the detriment of their own personal health and financial well-being. More must be done to prioritize and address the needs of this invaluable volunteer workforce.

There is also an incredible need for sustainable public awareness and education programs to reduce societal stigma and build better understanding of the brain and neurological conditions among both the Canadian public and health care professionals.

Several studies have demonstrated that depression and anxiety, key Parkinson's non-motor symptoms, are associated with stigma. For people with Parkinson's, stigma and discrimination often result from a lack of public and professional awareness of the disease. Canadians with Parkinson's tell us that their lives would be significantly improved if people in their communities understood more about Parkinson's and brain disease overall.

To conclude my portion of our presentation, because Dr. Fon will speak next, Parkinson's Society Canada gratefully acknowledges the work of this committee and the individual interest and dedication each of you has shown to this cause.

We believe the brain must be positioned as one of Canada's social, economic, and health priorities. We sincerely hope that, through this committee, work will begin to develop a national brain strategy—it has begun with this work—that will address the need for income security measures, genetic fairness, prevention, investment in neuroscience research, integrated care, and public education to reduce the social and economic burdens of neurological conditions in Canada.

We would also like to thank the Government of Canada for its investment in and commitment to the national population health study of neurological conditions. This study will provide crucial information on the incidence, prevalence, risk, health service utilization, and impact of Parkinson's disease, as well as many other neurological conditions in Canada. We ask the members of this committee to continue supporting this important work and also ask that neurological conditions be added to the Canadian chronic disease surveillance system.

We have a tremendous opportunity to work together in a collaborative way to develop plans to address the needs of millions of Canadians with neurological conditions, including Parkinson's. It is exactly this thinking that brought 25 charities together to form Neurological Health Charities Canada, and it is this thinking that we need our elected representatives and public servants to employ when developing policy and making investments. We must do a better job of supporting people living with neurological conditions at every age and every stage of life.

Dr. Fon will now provide an overview in terms of what the Parkinson program is doing in research.

[Dr. Edward Fon, Director, McGill Parkinson Program and National Parkinson Foundation Center of Excellence, Montreal Neurological Institute, McGill University; Parkinson Society Canada]

Thank you, Madam Chair.

Esteemed members of the committee, thank you very much for giving me this opportunity to meet with you.

As director of the McGill Parkinson program and as a practising neurologist, I am confronted daily with the progressive disability and suffering of patients afflicted with this devastating chronic illness, as people like Mr. Simmonds know much better than I do.

Parkinson's disease affects approximately 1% of the population above 65 years of age. It thus represents an enormous burden not only on patients and their caregivers but also on our society as a whole, and this burden will only increase as our population ages. In the next 25 years, neurodegenerative diseases, of which Parkinson's accounts for a major proportion, are likely to represent the single most important health-related challenge facing our society.

In addition to caring for patients with Parkinson's, I also run a very active research program focused on trying to uncover what goes wrong in the brains of patients with Parkinson's disease. My laboratory uses molecular and cellular approaches to investigate how defects in Parkinson's disease genes lead to degeneration in neurons in patients with PD. Thus, as both a clinician and a scientist, I have a strong conviction that the only way to get to the cure for PD and other neuro-degenerative diseases is basic research.

The primary focus of Parkinson Society Canada's national research program is to continue building on our strong PD research community by supporting basic science. It is basic science that is translated into breakthroughs in therapy, and it is this kind of investigator-driven research that encourages curiosity. It allows scientists the freedom to explore and make groundbreaking discoveries.

Parkinson Society Canada recognizes the importance of basic research. Since 1981 PSC has been the leader in non-government-funded research, contributing more than $20 million to support studies that might not otherwise have been funded through government or private industry. This approach is fundamentally different from other PD foundations, such as those in the U.S., which either don't fund basic research or adopt a very top-down approach.

PSC has also been a major driving force in establishing Neurological Health Charities Canada, which also strives to emphasize the commonalities and shared mechanisms of various brain diseases and fosters cooperation among the different stakeholders. This is something that Canada does very well.

In addition to being chair of the PSC scientific advisory board, I've participated in scientific review committees for the Canadian Institutes of Health Research and

for the Fonds de recherche du Québec — Santé,

as well as for international organizations such as the National Parkinson's Foundation in the U.S. and the Michael J. Fox Foundation, so I feel that I am particularly well positioned to evaluate the quality of Parkinson's research being carried out in Canada, and the major contribution of PSC. I can say without any hesitation that the quality of research funded year after year by PSC is second to none and is cutting edge by any standards worldwide.

Indeed, Parkinson's research in Canada builds on a long tradition of breakthroughs that have shaped the field around the world. I am referring to discoveries such as those made by Dr. André Parent and Dr. André Barbeau in Quebec. They were among the first to understand the functioning of the dopaminergic system and to use levodopa, which has now become the most frequently used and most effective therapy to treat Parkinson's disease. In Saskatchewan, Dr. Ali Rajput was among the pioneers who discovered the environmental factors involved in Parkinson's. Others, such as Dr. Lang and Dr. Lozano in Toronto, were pioneers in deep brain stimulation, which we have heard about before.

One reason we've been so successful thus far is that we've taken a highly collaborative approach and share resources and knowledge very openly. Again, this is something Canadian scientists are renowned for. However, our concept of Parkinson's is changing rapidly.

It's now clear that PD is not limited to the loss of dopamine neurons. The disease probably starts decades before the typical motor manifestations. When they become apparent, they may spread insidiously from one neuron to another in the brain. This is being increasingly recognized in the many non-motor manifestations we heard about just a few minutes ago, such as sleep disorders, cognitive disorders, personality changes, which had previously gone unnoticed. This turns out to be a big challenge for investigators and clinicians. Because it's apparent many decades before, it's a great opportunity to identify patients before the typical manifestations and potentially offer them groundbreaking therapies before it's too late.

It is also apparent that there is a shift in our basic understanding of the molecular mechanisms of neuro-degeneration in PD. PD was once thought to be a typical "non-genetic" disorder, but it's turning out to be one of the most complex multi-genetic diseases of the brain. The challenge for researchers now is to try to understand and sort out how the different genes interact with environmental factors in common cellular pathways such as protein misfolding and mitochondrial dysfunction.

Finally, our treatments for PD have also become much more sophisticated than just a decade ago. New strategies like deep-brain stimulation are becoming mainstream and pose serious financial challenges to our health care systems. Innovative approaches, such as virtual reality, as we heard of a little earlier, are also beginning to surface, with several Canadian scientists leading the field.

[The Chair, Conservative, Joy Smith]

I'm sorry, your time is up, Doctor. Thank you so much.

Dr. Hu, could you get us a copy of your presentation today? Do you have it in written form?

[Dr. Bin Hu]

I can e-mail it.

[The Chair, Conservative, Joy Smith]

It's very important to e-mail it to the clerk. I guess we can pick it off Hansard as well, but if you could e-mail it today to me—

[Dr. Bin Hu]

Sure.

[The Chair, Conservative, Joy Smith]

—that would be great.

[Dr. Bin Hu]

I will.

[The Chair, Conservative, Joy Smith]

When do we get Hansard, in a couple of days? We do have it on Hansard, but it's nice to have your written copy as well, in case there's something else in there that you didn't get a chance to cover verbally. I'm sure it's slightly different. We have your verbal presentation. I'd like to see your written one as well, if we could.

Now we'll go to Dr. Krewski. Welcome. I'm glad you're here today. Would you like to give us your presentation? You have ten minutes.

[Prof. Daniel Krewski, Professor and Director, R. Samuel McLaughlin Centre for Population Health Risk Assessment, Institute of Population Health, University of Ottawa]

Thank you.

I am happy to have this opportunity to present our research on the causes of neurological diseases.

What I'm going to talk about for the next ten minutes is our work in the area of what causes neurological disease in general. I'll refer to the slides I have, of which you have copies.

We're actually doing a systematic review of 14 different neurological conditions as part of the national population health survey of neurological conditions that the Public Health Agency is sponsoring. There are five institutions across the country, and we are the lead institution doing this work. You'll see in slide two a list of the institutions and in slide three some of the research team members, which includes a number of graduate students at different universities in Canada.

The next slide explains that the purpose of this project is to understand what we know about the causes of different neurological conditions. There are 14 in total.

Shown on the next slide is “Neurological Conditions of Interest”. One of the conditions you're particularly interested in is Parkinson's disease.

What I'd like to do is show you how we're doing this study. On the next slide you'll see a flow chart where step one is defining the disease terms for the condition. I'm going to talk about brain cancer briefly and I'll finish with what we've found so far on Parkinson's disease.

As you can see, we go through a very systematic approach. We identify where, which databases we're going to search--PubMED and others--and what search terms, so the review should be totally reproducible and done according to objective criteria. We quality-score all of the studies we look at to make sure we have relevant data.

The next slide gives you more information on how we search the data, which data base is used, which search terms.

The next slide begins with primary brain tumours. That's one of the three conditions we're doing at the University of Ottawa. So when we identify a relevant paper, we go through six levels of screening, extracting key information out of that paper.

The next slide points out that we actually have two people extracting the critical information and confirming that they're both getting the same results, so there's a little bit of quality control built in.

You'll see the next slide, called “Data Extraction Table for SR/MA”, is for brain tumours. This is the sort of information that we produce in summary form. We're literally looking at thousands of papers on brain cancer. We're looking at tens of thousands of papers on Alzheimer's disease. So you really need to be disciplined and structured about how you search through this literature.

The next little case study is Alzheimer's disease, for which, as I said, the literature is particularly voluminous, so I'll skip through the details. You can see some of the results we're finding in the slide that begins with “Data Extraction Table”.

There is a third condition we're studying at the University of Ottawa, which is ALS.

A lot of these neurological conditions have similar ideologies or share some ideologic factors. Through PrioNet Canada we've been pursuing for the last few years the hypothesis that protein misfolding may play a role in many of these conditions. I think we have some really great opportunities, if we pursue that scientific hypothesis in the future, to help address the burden of several neurological diseases, including Parkinson's.

I'll skip over the medical analysis, which we do when we have enough data to try to get a quantitative estimate of different risk factors, what agricultural chemicals, what risk they might propose for ALS. We're actually going to try to quantify that by combining the data from multiple research studies, and the same for heavy metals.

What I should tell you a little bit about, what you're most interested in, is what we are doing with Parkinson's disease. That condition is being led by the University of Toronto, and the team there was kind enough to give me some hints as to what they're finding initially. This is all not final yet, so we're looking at a whole series of dietary factors, fruits, vegetables, dairy products, alcohol, coffee, tea, junk food. We're looking at macro nutrients, micro nutrients, lifestyle factors such as coffee drinking, cigarette smoking, physical activity, family history of Parkinson's, personality characteristics, environmental factors, agricultural chemicals, farming, well-water drinking, living in a rural environment. We're looking at comorbidities, such as melanoma and diabetes, a whole series of genetic risk factors, target genes as well as polymorphisms, and a number of drugs that are used to treat Parkinson's disease, whether they have any, and a number of drugs that people may be taking, such as anti-hypertensives, and their role in the onset of Parkinson's.

When we have finished this very ambitious study we will have covered the world's literature through to the present time on what we know at this point in time about the causes of all these neurological conditions. Parkinson's is the one you're interested in, but we're going to do 13 others for the Public Health Agency of Canada.

We have a second question: what factors influence the progression of the disease once the disease has been initiated? We're targeting finishing this by about January of 2013 and presenting the final results at a national conference that the Public Health Agency will host in March of 2013. That's when I'll be able to tell you everything you want to know about what we know about what causes Parkinson's.

Thank you.

[The Chair, Conservative, Joy Smith]

That was very interesting. Thank you for your presentation.

We'll begin with our first seven-minute round of questions and answers and we'll begin with Ms. Davies, please.

[Libby Davies, NDP, Vancouver East, BC]

Thank you very much, Madam Chair.

Thank you so much to the witnesses for being here today. You've provided us with an incredible wealth of information, from research to new advances, to living with Parkinson's, and to new therapies.

Dr. Hu, your information about your music program is quite incredible to hear. It seems so simple, but I know we don't know the complexities that are behind it...and trying to figure it out.

Certainly to Mr. Simmonds, thank you so much for being really frank in sharing very personal information about what it's like to live with Parkinson's. I'm sure it must be a bit daunting to come before a parliamentary committee and open up about your life. We really appreciate that you were so open and frank with us, because it does help us to understand. My father died of Parkinson's, so I have some knowledge of what the disease is like and what it means for families and caregivers. We very much appreciate the information you've provided.

I wanted to make one general comment and then I have a couple of questions.

Ms. Gordon, I think what you identified—in fact a number of you did—is the impact on families and caregivers and how serious this is. We have heard this repeatedly, and it's something that I think many of us have personal experience with as well. It's such an important question and we're not doing nearly enough to support caregivers financially in terms of respite care, whether it's through the taxation system or supports at home. I want you to know that I don't think we're doing nearly enough. We've been doing another study on chronic diseases and of course that issue surfaced there.

The questions I have, though, and you mentioned it very briefly, Ms. Gordon, when you talked about genetic discrimination.... I met with the Coalition for Genetic Fairness iseveral months ago, and it was a subject I was not familiar with. I know it's an issue for the Parkinson Society of Canada too. I wonder if you could speak a little bit more about that, especially as we get into this age of electronic health records and information sharing, databases and all of that. From what I understand, this is a huge issue where people are feeling very vulnerable about information that can be used against them by insurance companies and by workplaces. I hope you could share a little bit more about what we need to do about that. That's one question.

The other question I have is on the cost of drugs, and I would throw that out to the panel for anyone who would like to respond. In our research background we are told that a typical patient may have $1,000 in drug costs a month. We know in the health accords there was a commitment made to have at least catastrophic drug coverage. Nothing has been done. Presumably all of the folks you work with are still facing these horrendous situations of massive costs in drugs. I think it would be helpful for you to provide a little more information about that.

If we have time I'll sneak in one other question. The surgery you had, Mr. Simmonds, how common is that? Is it now widely available? Is it one of these problems where if you're lucky enough to be in the right city and get in at the right time...? I have not heard of the surgery before. I'm curious to know how available or accessible it is in Canada.

[The Chair, Conservative, Joy Smith]

Mr. Simmonds, would you like to start, please?

[David Simmonds]

Sure.

In terms of drug costs, the suite of drugs that I was taking prior to my surgery, which is now reduced by virtue of the surgery, had an aggregate cost of about $20,000 to $25,000 a year. I was fortunate to have a medical plan that covered a good chunk of it, but nevertheless somebody was paying that cost.

In terms of the surgery, the surgery is not high-risk surgery. It's relatively routine surgery. But in terms of the selection of patients, I think there's much more demand than there are surgical places available. Therefore, they tend to pick candidates who are good, solid risks for successful surgery. I wouldn't like to hazard a guess as to what the proportion is, but certainly many more people could benefit from the surgery than have had it.

[Libby Davies, NDP, Vancouver East, BC]

Thank you.

On genetic fairness, if you don't mind responding....

[Joyce Gordon]

Thank you for the question.

There is a coalition that has come together called the Canadian Coalition for Genetic Fairness, which you may have heard from. It is led by the Huntington Society. We are a member of that coalition. On how this arose, across Canada and all over the world there has been promotion of opportunities for people to have their DNA tested and have a report back about what they might be at risk for. I don't know if you've seen it in the papers. Full-page ads have been taken out. There's 23andMe, where you send them $25 and they send you back your whole genetic profile.

A number of issues arise from that. One of them is that when people receive the information, what are they supposed to do with it? It's advised that people have genetic counselling. If they may be at risk for certain conditions and have full genetic testing done, they should have the appropriate support to determine how best to use the information. That's one issue.

The second issue is I don't think people in Canada are aware that we do not have legislation to protect people once they receive that information. If you fill out an insurance form that asks you if you have had genetic testing and you answer yes, there is no legislation that protects you from not providing that information to them. They have every right to ask you what it said and to ask for the results. That can result in discrimination around insurance applications. Some professional individuals whose ancestors have had a history of Huntington's have been denied professional insurance because it's viewed as a high-risk genetic factor, for example. With Parkinson's, about 10% to 15% of people with Parkinson's—maybe more, given the information we've just heard—are affected by genetic.... Ted could speak more to this than I can.

So there is no legislation to protect people once they receive this information. Generally, companies doing this are private ventures to provide people with information that is supposed to identify if they're at risk for certain conditions. If you've seen the advertisement, it lists most of the neurological conditions, which is kind of surprising. On the other hand, when you get that information, what are you going to do with it? Secondly, once you have it you are at risk for having to declare it when you're asked. That implies employment situations. If an employer asks, you do not have the right to say no. You do not have the right to say you're not going to give it to them, and they have the right to not hire you. So it has enormous implications.

This coalition has come together and has been looking at amendments to the charter of human rights. They have put together a whole portfolio to make changes so individuals would be protected from having to declare that they've had genetic testing. They would then be protected from some of these issues around insurance, employment, or other opportunities.

[Libby Davies, NDP, Vancouver East, BC]

Do I have any more time?

[The Chair, Conservative, Joy Smith]

You have one minute.

[Libby Davies, NDP, Vancouver East, BC]

Okay. I have just a quick follow-up.

[The Chair, Conservative, Joy Smith]

I'm sorry, you don't have any more time. I was involved in what she was saying.

In fact, you've gone over time, Ms. Gordon. I'm breaking my record. This is bad.