moved:
That, in light of the death of over 1000 Canadians each year, including the tragic loss of the Honourable Mauril Bélanger, former MP for Ottawa—Vanier on August 16, 2016, as a consequence of Amyotrophic Lateral Sclerosis (ALS), the House: (a) reiterate its desire and commitment to, in collaboration with provincial and territorial stakeholders, combat ALS via research and awareness; and (b) call upon the government to increase funding for ALS research, and to substantially increase national efforts to develop and launch a comprehensive strategy to assist with the eradication of ALS at the earliest opportunity.
Mr. Speaker, to paraphrase the great Lou Gehrig, today I feel like the luckiest person in the world. I say this because for the first time in my 18-year federal legislative career, I am rising to debate a private member's motion in my own name. It took a long time to get here, and I am excited by the opportunity to use this legislative tool to shine a light on something as important as ALS, often referred to as Lou Gehrig's disease.
It is with humility and honour that I rise to launch the debate on Motion No. 105. In doing so, it is my hope that all members in this place will stand together and pass Motion No. 105 without delay. I appreciate that the member for Glengarry—Prescott—Russell has seconded this motion, and I am hopeful that members in all parties will support the motion as a way of standing with all those suffering with ALS.
We see more than 1,000 Canadians die each year because of ALS. All are robbed of their freedom, while being slowly trapped within their own bodies. Their physical decline is dramatic, and their families can do little but sit back and wait for the end.
Certainly, members in the House have known many with ALS, and we have watched as these brave men and women have done battle with a relentless foe.
It was less than a year ago that the hon. Mauril Bélanger, suffering the effects of ALS, presided over this House as an honorary Speaker. He had been diagnosed with ALS in the fall of 2015. What should have been a time of celebration for him and his family turned out to be a sombre realization that his world was about to change profoundly and that his time was running out. Worse yet, his wife Catherine and their children were forced to sit back and watch as Mauril first lost his voice, then his strength, and eventually his fight against ALS.
Mauril was not alone. Many of us in this place will remember Richard Wackid, Brian Parsons, and even our former clerk, William Corbett. Each of these people contributed so much to this place and to Canada, yet they were struck down without warning or reason and without mercy.
In the wake of these tragic losses, and hundreds of others, colleagues, such as the member for Dufferin—Caledon, the member for Cape Breton—Canso, and even the Prime Minister, have made emotional statements in the House in support of the fight against ALS. I can even confirm that our Prime Minister, the Leader of the Opposition, the leader of the NDP, the MP for Portage—Lisgar, the President of the Treasury Board, and many more accepted the ALS ice bucket challenge and took the plunge against ALS. Together we helped raise more than $19 million for ALS research, a significant accomplishment, but we need to think longer term.
Put another way, our parliamentary family has been deeply touched by ALS, and all members and all parties in the House have responded by raising awareness and money. Motion No. 105 is the next step in our fight against ALS.
We know that ALS is an unforgiving and brutal disease that gradually paralyses the body. Someone in otherwise good health will gradually lose the ability to talk, to move, to eat, to swallow, and eventually to breathe. Right now there are approximately 3,000 Canadians living with ALS, and the reason that number is not bigger is because 80% of the people with ALS die within two to five years of diagnosis. As we saw in Mauril's case, sometimes it is significantly less than that.
Let us talk about Mauril for a moment. Mauril's journey with ALS was highly visible due to his role as a member of Parliament, but it shone a light on not only what it looks like to have the disease but on the circle of family members, friends, and colleagues affected when someone is diagnosed with ALS.
The mobility and communication needs of someone diagnosed with ALS are great and are a tremendous financial burden on everyone involved. It is estimated that ALS has a minimum cost, for families, of somewhere between $150,000 and $250,000. This does not include the loss of salary that often comes about when a family member leaves a job to care for a loved one full time, which is usually required.
Families faced with an ALS diagnosis must make difficult decisions in the attempt to balance the desire for a good quality of life with the cost of achieving it. For example, many people diagnosed with ALS prefer to live at home rather than in a care facility. However, staying at home frequently requires modifications to accommodate wheelchairs, bathroom aids, lifts, and beds, not to mention the nursing care required for someone who is increasingly paralyzed. For a family whose loved one has ALS, these decisions have financial and emotional implications that last long after ALS has taken that person's life.
While there are about 3,000 Canadians living with ALS at any one time, the broader circle of people affected is much larger. It is fair to say that in each of our ridings, people are dying of ALS, and their family members' lives are changed forever, because ALS has a lasting financial and emotional impact.
ALS kills nearly 1,000 Canadians each year, and a similar number are diagnosed with ALS each year. This creates a revolving door of people who have a disease with no cure and no effective treatment, a disease that limits their remaining days in more ways than one. Not only have their lives been significantly shortened, they have been changed by a host of new needs as mobility has declined and the ability to communicate has lessened.
Canadians with ALS have said that their experience with the disease is like being buried alive or dying in slow motion. It is hard to believe that today, in 2017, there is still no cure. There are also no effective treatments, and the causes of the disease are unknown.
Fewer than 10% of ALS cases are inherited from a family member, meaning that at least nine out of 10 people diagnosed with ALS develop it seemingly at random. Each one of us in this room has a one-in-400 chance of being diagnosed with ALS over the course of our lives, which brings me to why research is so important. It is one of the few things people and families affected by ALS can be hopeful about. Research may not change their own path, but they fervently hope that it will change the path for others who will be diagnosed in the future.
Globally there has been more progress in ALS research in the last five years than in the last 100 years. Most leading researchers and clinicians in the field believe that we have the tools today to at least understand how ALS is caused. This means that there is tremendous potential for the development of effective treatments for the first time ever. The limitation in developing these treatments, of course, is resources, resources in the form of research investment.
Historically, in Canada, ALS research has been funded at approximately $1.5 million to $2 million per year through the ALS Society of Canada. There are no other significant Canadian funding mechanisms that focus exclusively on ALS research.
As I have already mentioned, the ice bucket challenge was a huge success, but without an ongoing and sustainable funding mechanism, Canada's ALS research efforts will soon return to traditional funding levels. That means that we are at risk of losing the research momentum at a time when ALS research holds more promise than ever before. Many members participated in that challenge, and in doing so, were part of a tremendous movement that is helping to advance ALS research and provide support and care to people living with the disease.
Motion No. 105, as I said earlier, is the next step.
On the day Mauril presided over this House, our Prime Minister and the other party leaders all encouraged Canadians to support the organizations that are working to find a cure for ALS. Since then, an all-party ALS caucus has been created to better understand the care and research challenges ALS presents, as well as opportunities to address them.
Today I am calling on all members to live up to that promise. The first part of my motion asks that the House continue its commitment to ALS research and awareness, working with stakeholders in our provinces and territories. Besides being the only significant funding mechanism dedicated to ALS research across Canada, ALS Society of Canada is part of a network of ALS societies with a provincial presence. I support the government's ongoing work with ALS societies across Canada, especially as it strives to maximize our impact toward making ALS a treatable, non-terminal disease.
So often things that we debate here in this place are divisive. Motion No. 105, of course, is not divisive. It is not complex. It does not place one party over another. Imagine the ability for Canadians to be part of a global legacy that could change the meaning of an ALS diagnosis. By investing in ALS research, we could help make that change happen. Families coping with an ALS diagnosis deserve so much more and so much better than the reality that they are currently facing. As Canadians, we simply cannot afford to lose any momentum for ALS research.
I urge every member of this House to give this motion their full support. Members' commitment to ALS awareness, research funding, and a comprehensive strategy for the disease will give hope to many people in all of our constituencies. We are so very close to treatment breakthroughs for ALS. I ask members to help Canada be a leader in changing the outcome of an ALS diagnosis from terminal to treatable.