Subcommittee on Neurological Disease Committee on June 8th, 2010

[The Chair, Conservative, Joy Smith]

I'll ask everyone to take their seats now so that we can get started.

I want to welcome the witnesses today. This is the Subcommittee on Neurological Disease of the Standing Committee on Health. Pursuant to Standing Order 108(2), the study on neurological diseases will begin today.

In this particular area, we have with us Denise Figlewicz, vice-president of research with the ALS Society of Canada; we have Felicia Travis Valo; and we have Melanie York, who is a board member of the ALS Society of Canada.

Welcome. I'm very glad you could join us.

We also have Dr. Alex Parker, assistant professor from the Université de Montréal research centre. We're very pleased to have you here.

We'll have five-minute presentations, and we'll begin with Ms. Figlewicz.

[Dr. Denise Figlewicz, Vice-President, Research, Amyotrophic Lateral Sclerosis (ALS) Society of Canada]

Good morning. My name is Denise Figlewicz. I am Vice-President, Research, at the Amyotrophic Lateral Sclerosis Society of Canada.

Thank you for having invited me today to make a presentation to you.

Good morning, everyone.

I want to thank you very much for this opportunity to say a few words this morning about ALS and the ALS Society of Canada.

Amyotrophic lateral sclerosis is an adult-onset neurodegenerative disease. It's rapidly progressive and ultimately fatal. Specific groups of nerve cells that control the voluntary contraction of muscles are lost. As the nerve cells die and the disease progresses, individuals lose the use of their hands and arms, their legs, speaking, swallowing, and breathing.

Our sense of urgency with respect to the question of diagnosis, care, and development and identification of treatments for ALS is heightened by the population change. We're looking at the aging of the baby boom generation, because the age of highest risk for ALS will very soon overlap with the age of the baby boom generation. What we consider a serious health problem now is about to increase significantly.

The primary mandate of ALS Canada is to fund research to identify disease mechanisms and putative new therapies for ALS. As vice-president of research for ALS Canada, I identify research needs and create and implement grant programs, knowing that the identification of treatments for ALS will come from research discoveries. I have to say that recent history will support me in saying that discovery of treatments related to research is directly proportional to the amount of money that is invested in the research itself.

ALS Canada invests in our senior scientists. Our flagship grant program is one that is carried out in partnership with the Canadian Institutes of Health Research and Muscular Dystrophy Canada. Last year, the Neuromuscular Research Partnership funded $2.74 million in operating grants for senior scientists.

We also provide discovery grants to encourage novel approaches to research in ALS or to bring researchers from other fields into the field of ALS research. We have pre- and post-doctoral fellowships to encourage the development of the next generation of scientists in research in ALS and other neurological diseases.

In 2009, we initiated the first clinical research fellowship. This is a special program in which an individual who is board certified in either neurology or physiatry is given two years of salary support to work in an ALS clinical centre. That situation will allow them to learn about the special needs of patients as well as to learn how to carry out clinical research. The goal of the program is to increase the number of expert ALS clinicians and clinician researchers throughout Canada.

We also provide travel stipends to encourage our scientists at all levels to travel to international meetings to meet their international colleagues and to present their work.

My total research budget for this year is $2.033 million.

The subcommittee has asked for an update on research related to diagnostics for ALS. Unfortunately, I have to say that the diagnosis of ALS remains an area in which research is badly needed. There are no biomarkers for ALS of sufficient specificity or sensitivity. Thus the diagnosis for ALS remains a diagnosis of exclusion. What this means is that an individual is followed over time by their clinician as other related syndromes are ruled out. A patient can wait as much as 18 months for access to care and resources specifically related to ALS. We are seeking out research opportunities right now to help while basic research is under way identifying treatments.

When I began my job in 2006, the message that I heard from both ALS clinicians and ALS patient groups was one of frustration, not just at the lack of treatments available, but also at the lack of opportunities to participate in research studies or clinical trials. In a direct response to this, ALS Canada has aided the incorporation of a clinical research and trials consortium at 15 ALS centres across the country, from Vancouver through to Halifax.

We underwrote the incorporation of this group and we also provided the funding for their very first clinical trial. In January 2009, a clinical trial was begun. This came to an end last fall.

A great achievement as part of this was that our CALS, the Canadian ALS clinical trials consortium, worked with probably the best ALS consortium in the world out of the northeast of the U.S. called NEALS. As a result of the very good collaborative bonds that were built at that time, CALS and NEALS are currently already engaged in the next clinical trial together.

We believe this type of clinical trials network represents a model for a turnkey package that could be readily modified for application to other diseases for which clinical trials in Canada are rare or non-existent. However, ALS—

[The Chair, Conservative, Joy Smith]

Ms. Figlewicz, your time is coming to a close. I've given you an extra minute. I just want to make you aware that you need to wrap up pretty soon.

There will be time for questions and answers. Thanks.

[Dr. Denise Figlewicz]

All right. In fact, I am almost finished.

[The Chair, Conservative, Joy Smith]

Oh, good.

[Dr. Denise Figlewicz]

I just wanted to say that ALS Canada cannot continue to support clinical trials. The support of clinical trials is undoubtedly an arena of national concern, not one that can be undertaken by provincial health systems.

Thank you very much for your attention.

[The Chair, Conservative, Joy Smith]

Thank you. There will be an opportunity for you to say more when people ask you questions.

Ms. Valo.

[Felicia Travis Valo, Amyotrophic Lateral Sclerosis (ALS) Society of Canada]

Good morning, esteemed members of the committee. Thank you very much for this opportunity.

I am here before you today because my husband, Sidney Valo, lost his heroic battle with ALS in December 2008.

Our life, as we had known it, came to an abrupt end the day of his diagnosis. Instead of pursuing his own interests, Sid devoted himself to raising public awareness and to gathering funds, which is so necessary for ALS, and he was thus able to collect nearly $300,000, despite the fact that he was progressively losing his ability to walk, to eat and to speak.

It is also because of my husband's legacy and commitment to the ALS community that I am here today in the hope that you may gain a better understanding of the devastating toll of this disease.

Sid and I were made painfully aware that ALS has no known cause and no cure or effective treatments. While we were grappling with this reality, we had to quickly sell our home, relocate to an apartment that could be made accessible, set our financial affairs in order, and prepare our children for the worst.

As the disease progressed, Sid became physically paralyzed and totally dependent on full-time care, while remaining cognitively intact and acutely aware of his demise. Not infrequently, he was emotionally tormented at the pain and stress his fatal illness was causing his family. To that point, two of our children took longer to complete their university degrees. We also lost a source of income when I had to give up my psychology practice of 20 years.

After he died, I was diagnosed with post-traumatic stress disorder, and it is only in the last six months that I've been able to resume my work on a full-time basis.

I also made a conscious decision to relinquish my role as wife in some respects and to assume the one of primary caregiver. While this was physically and emotionally taxing in ways I could not have anticipated, I came to realize there were many less fortunate people than me who were doing this with far fewer financial, logistical, and technical supports.

The equipment and personnel required, such as specialized caregivers, are considerable and the costs can be staggering and can leave families in financial ruin. While resources and equipment and tools exist, these aren't always readily available, and for those less savvy in navigating the system, it's easy to see how overwhelmed and demoralized family members can become.

Many individuals with ALS are often unable to be fully cared for at home, sometimes because the primary caregiver is also the primary breadwinner, and other times because the family, simply put, burns out. This has psychological consequences that can leave the families divided and shattered. Despite the many supports we had, I often felt on the brink of collapse.

These are but a few of the compelling reasons that we desperately need to revamp Canada's compassionate care policy—

[The Chair, Conservative, Joy Smith]

Could you slow down just a little bit for the translators.

[Felicia Travis Valo]

Oh, I'm sorry, I'm trying to keep within my time limit.

These are but a few of the compelling reasons that we desperately need to revamp Canada's compassionate care policy to build in greater flexibility for EI. For example, it would be advantageous to allow partial weeks over a longer period, rather than blocks of weeks at a time.

The creation of a companion program to the compassionate care benefit not solely based on employment would also be crucial to ensuring that families can survive.

ALS patients deserve to have hope, and this is only possible with the advancement of research, increased clinical trial opportunities and better support for the family, more particularly the caregivers. Treatments for this horrible illness are desperately needed. This is why we are asking for your help and support.

Thank you very much for this opportunity.

[The Chair, Conservative, Joy Smith]

Thank you.

Ms. York.

[Melanie York, Board Member, Amyotrophic Lateral Sclerosis (ALS) Society of Canada]

Ladies and gentlemen, thank you very much for inviting me to come to this meeting to be a witness.

My name is Melanie York. I am 56 years old and I am living and dying with ALS. Prior to my diagnosis in September 2008, I was fully active and passionately engaged in life. I was an award-winning television producer at YTV. Always full of adventure, I was an avid traveller who loved to scuba dive, hike, and motorcycle, and on my quieter days, paint, read, and cook.

All of that joy in life is now gone. My arms and legs do not function. I have become totally dependent on others for my care and the simplest of needs. I cannot feed myself or hug my family, and I am so vulnerable that I cannot be left alone. ALS constantly challenges me to be courageous in the face of this devastating disease. At night I pray that I will wake up the next morning without further loss of function. I live daily with exhaustion, depression, and raging frustration. While my body is being stolen from me, my mind, spirit, and heart have to watch. Perhaps that is why ALS is akin to being buried alive.

Adding to the physical and emotional hardships of this illness are huge financial burdens. In 2009 I spent close to $60,000 from my savings on costs directly related to ALS, which included electric chair lifts, full-time care, alternative treatments, and home modifications. ALS moves at locomotive speed, and subsequently, six months later, I am now forced to move again, into a home that can satisfy all my long-term needs, necessitating my partner and I to incur hundreds of thousands of dollars of debt. All ALS patients face incredible financial challenges, giving rise to the phrase “ALS is the bankruptcy disease”.

I am kept alive by a caring team of people, including family, friends, salaried caregivers, and my partner, who has reduced his workload to care for me. Though I visit a Toronto ALS clinic and have only limited access to a multidisciplinary team, it is my caregivers who support and care for me 24/7.

Education for support people is sorely lacking, and burnout is inevitable. I believe that the role of the caregiver needs to be fully acknowledged and redefined when dealing with chronic illness. To that point, I suggest that the federal government expand its policy on compassionate care to better reflect the needs of those who are chronically ill and those who care for them. The current policy of six weeks off in a six-month period is totally inadequate. We need to be more flexible and responsive to the realities of caring for those we love, allowing for partial weeks over a longer period of time rather than just blocks of weeks. Another viable suggestion could be a period of 26 weeks, accessed over a 52-week period.

There is no question that the training and mobilization of caregivers is essential—absolutely essential—to those living with ALS and other neurological diseases.

I have joined the board of ALS Canada because I have always had a strong voice. Now is the time for me to use that voice, as ALS will take that soon too. The clock is ticking very fast. A cure for ALS depends on research, and research depends on money.

Thank you very much.

[The Chair, Conservative, Joy Smith]

You are certainly very courageous people.

Mr. Parker.

[Dr. Alex Parker, Assistant Professor, Research Centre of the University of Montreal Hospital Centre (CRCHUM), Department of pathology and Cell Biology, Université de Montréal]

Welcome everyone. My name is Alex Parker. I am a researcher at the University of Montreal. I did my doctorate at the University of British Columbia, and then I did my post-doctorate in Paris, France. Allow me to continue in English.

For most of my career I've been studying Huntington's disease, but my interest lies generally in neurodegeneration.

We made some important discoveries during my time in France, and we hope there will ultimately be benefits to patients. But another aspect to be considered is that the fruits of that research lie primarily in France and the United States, as they were the sources of the funding. This is something that I think Canada misses out on a lot of the time.

Recently, thanks to ALS Canada, I've been recruited to study ALS. This is directly due to an initiative from ALS Canada known as the Bernice Ramsay discovery grants. It is an initiative to fund high-risk research or attract researchers with different techniques to the field. I thought our approach would be applicable, so I applied. This type of funding doesn't really exist at the federal level. It is a lifeline for groups like mine, because I'm a relatively new researcher. This funding directly is like a lifeline to the lab, allowing me to set up and get going. It's been very beneficial so far.

I'm not saying all of the federal funding is inadequate. Some aspects are very good. For example, my salary is funded by the CIHR as a new investigator; infrastructure from the Canadian Foundation for Innovation was fantastic; and the new initiatives for funding student scholarships are also good. But we are missing one aspect, and that is operating funding to basically run the lab. We have projects ready to go. I could run three projects tomorrow, but I just don't have the money to get them going. This could be a situation where if we wait too long on some of these things, other people will move ahead, and some of the commercial aspects will go elsewhere.

So I believe that an increase in neuroscience funding is crucial. Why do I think this? It's because, as Denise touched on earlier, Canadians are living longer than ever, and the number one risk factor for all neurodegenerative diseases is aging. Just because people are living longer doesn't mean they are necessarily living healthier. You'll see an increased occurrence of many neurological diseases, including ALS, as people live longer.

We need to not just increase Canadians' lifespans, but increase their health spans also and maintain a healthy and productive population. What we're asking for are basically resources to eliminate suffering--that's an obvious benefit--but also to strengthen our scientific efforts. These will hopefully have benefits for the patients and families, but there will also be economic, societal, and productivity benefits.

At this point, working in a lab, I would say that two-thirds of the pieces are in place: infrastructure and support for training studentships. But we basically need the resources to round it out and do the experiments. I'll leave it at that.

Thank you very much.

[The Chair, Conservative, Joy Smith]

Thank you very much for your presentations this morning. It must have been very hard for you to come here today to tell us about the challenges you have. But the reason we have you here is because you have a group of people around this committee who are more than interested, who feel very compelled to listen to the challenges and try to move forward to do something to help.

We'll go into our first round of questions and answers. We're going to begin with Dr. Duncan.

[Kirsty Duncan, Liberal, Etobicoke North, ON]

Thank you, Madam Chair.

Thank you all for coming, and for your courage and strength in coming here. I think you've touched all of us and we're overwhelmed.

Felicia, what are the five things that would have helped your family? You talked about compassionate care, but tell us everything that would have helped your family relieve the suffering.

[Felicia Travis Valo]

I think initially a more comprehensive team at the hospital Sid first went to, to be diagnosed. It was a bit disjointed, the efforts to diagnose him. And we ultimately went to the States because we couldn't get it done here properly. So that would be one thing.

Once we came back with the diagnosis—which, by the way, was made instantaneously once we went down to the States, whereas here it was a nine-month ordeal of going down different paths, with different possible diagnoses... Once we came back, unfortunately, the ALS clinic was not as well equipped as it needed to be to offer service. The personnel there, as well-intentioned as they are, are stretched to the max. There's a need for clinical coordinators. There's a need for more support groups. There's a need for a more comprehensive team. So I think that would be the second thing.

There's a need for better information packages, so that when a person is diagnosed you get material that takes you step by step in a better way than is currently being provided.

Four, a cure. Treatments. Hope. We often felt that there was no real need to go to hospital. It was a very unsatisfying experience. Again, as I say, as well-intentioned as everyone was there, there really wasn't much to offer. We ultimately went to the States for clinical trials because there were none here. Now, fortunately, that's changed. But unfortunately, by the time the clinical trials came to Toronto, my husband's disease was so advanced that he couldn't participate. But he was very instrumental in bringing clinical trials to Toronto.

And I think more awareness. We felt very alone in this disease. It's often called the orphan disease. Here we are, it's June, ALS Awareness Month, and very few people know that it is. I think we would have felt better supported if there was a more concerted effort on the awareness front.

[Kirsty Duncan, Liberal, Etobicoke North, ON]

Thanks, Felicia.

I really want to echo what our chair said. This committee exists because I think we're all frustrated with the lack of treatment, a cure, and we know there are things available overseas that we'd like to get here.

Melanie, are there any supports that would...?

[Melanie York]

There are a couple of things I want to say.

There is an incredible lack of integration between your regular GP and your neurologist. I feel as though I live in, sometimes, two separate places. There's very little awareness among GPs of ALS. There are no coordinated treatments, really, between your GP and your neurologist.

I find that I have to depend on my own intuition most of the time as to what to do. I'm not saying it's a lack of caring. It's a lack of what's available. It's a fear of stepping out of the box in terms of treatment. Even though I spent $10,000 last year on alternative treatment and was told, “Well, you know, there's no proof, no proof, no proof”, I have nothing to lose. I don't know if it helped. It helped me mentally and it helped me emotionally, because the worst thing is to feel that you can do nothing for yourself.

I went on a clinical trial. It took me eight months to get results from it. By that time, I lost more and more function. The reality of how you can get into a clinical trial, get the information, and the speed at which your body is continuing to decay don't match up.

Every trial has its own specifications in terms of when you can get in. I'm also part of a statistic for study. Sometimes I feel, am I a statistic? Am I a patient?

I have ALS; I am not ALS. It's very important for me to tell you that, because I have devoted most of my energy to keeping my mind as balanced as I can, to keeping my spirits strong, to contributing and to being here. That is all I can do for myself. Otherwise I open my hands to everybody else and at a certain point you feel spun around and around, and you have to stop because the insanity is too much.

I think—we've mentioned this—there is also a need for spiritual care. The medical model as it exists now has a strong emphasis on the clinical and diagnostic, but somewhere we need to mobilize people's ability to heal themselves. I'm not saying a cure; I'm saying to bring themselves to the best place possible within themselves to deal with this. You have to live alongside this illness. How do you do it if you have no access to that kind of support, help, or guidance?

If I could put anything forward, it would be—not just for ALS—the need for compassionate spiritual care. I'm not even talking about God, but whatever it is to that person will so help mobilize strength and the ability to live with this and to contribute.

As you can see, I'm quite devastated by this, but I refuse to give up and stop being myself. Nobody is going to take that from me until I no longer have it.

[The Chair, Conservative, Joy Smith]

Thank you. You certainly are an inspiration to a lot of people, Ms. York. What you say is very insightful and very helpful, because you're the face of ALS. Verbalizing it helps a lot of people who are in that situation.

We now go to Monsieur Malo.

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

Thank you, Madam Chair.

Ms. Travis Valo, Ms. Duncan asked you to name five things that you would like to have. I think that the most moving one in your response was a treatment leading to a cure. I remember that when Ms. Duncan pleaded for the creation of this sub-committee, one of the main elements, if not the principal one, motivating her to invite us to look into this issue was the fact that this sub-committee would be able to hear researchers from all over the world who would be able to tell us where we are at in the area of research towards finding treatments capable of leading to a cure.

Given that you did not do so in your presentation, Mr. Parker, I would like you to give us an overview of where ALS research is at on the road to finding a treatment that could lead to a cure.

[Dr. Alex Parker]

The most important aspect is that we need time. However, it is not possible to ask the government to give us time to carry out research work. In the absence of being provided with time, we are asking for financial resources. It is as simple as that.

In Montreal, for example, there is a broad group that is presently studying ALS and that has found two or three genes involved in the disease. The model is now being applied to animals. Studies have begun with a view to finding drugs and determining those genes that are involved in the disease. This is a long and costly process.

We really need money in order to do this work. For us, it is simple. It is not an academic exercise. This is a serious disease. For researchers, it is simply a matter of money.

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

Based on what I know about the state of the advancement of research internationally, all that researchers have succeeded in discovering are a few genes that might be responsible for the disease. That is it.

[Dr. Alex Parker]

Yes, for the time being. That is the first stage. Afterwards, what do we do? At present, we have no idea of the way these genes work. This takes time. We need laboratories, obviously, post-doctoral students, technicians, etc. A good project can take maybe two or three years, and the costs are relative.

In my view, we are on the right path. We have identified two or three genes and we are now working on determining the role of those genes. We will then be able to find the effective drug in the system. Afterwards, we will move on to the critical trial stage. That is how it works.

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

Would you like to add something, Madam Figlewicz?