Madam Speaker, I am proud to rise in the House this morning to discuss the motion moved by my colleague, the member for Humber River—Black Creek. The purpose of the motion is to cast light on a terrible disease, amyotrophic lateral sclerosis. All of us here in the House have witnessed what this disease can do to human beings because we all saw what it did to our former colleague, the Hon. Mauril Bélanger.
I will always remember the meetings we had during the election campaign at Mauril's place every Monday at 9 p.m. Mauril made sure to feed us because he knew we had spent long days knocking on doors. Those who knew him know that Mauril was not afraid to speak his mind. Back at the beginning, he was the Mauril we had always known, with his powerful, authoritative voice. Towards the end, Mauril spoke less and less. His voice was no longer as powerful or as authoritative. I told myself that a 78-day campaign takes its toll, even on veterans of the campaign trail.
After the campaign, I saw Maurice at an event. He had completely lost his voice, and I told myself that he had been losing his voice towards the end of the campaign and probably lost it entirely because he must have made a lot of noise the night of the 19th. I found 1,001 excuses to believe that nothing was seriously wrong with Mauril.
We all know how the story ended, but it was because of him that I witnessed what ALS can to to human beings.
Before Mauril had the courage to share his journey with all of us in the chamber, I did not know much about this disease, except that Professor Stephen Hawking was diagnosed with ALS and somehow managed to survive. Sadly, this was the only exposure to ALS I had much of my life. Then a few years back, the ice bucket challenge happened. We participated, gave money, and then the ALS issue faded.
We have an all-party ALS caucus, which I proudly chair. I was interested in this issue because I witnessed what happened to our friend and thought I needed to make a difference. I was even more determined when ALS Society of Canada informed me that its community was always 3,000 individuals diagnosed with ALS. Nearly 1,000 die each year in Canada. This fact makes it hard for ALS Society of Canada to raise funds and cultivate champions within its community as they will most likely die of the disease within two to five years. Unlike cancer, there are no survivors.
Speaking of champions, I want to acknowledge Mrs. Carol Skinner, who was at our first ALS meeting. I want to thank her for sharing her story with us and for not giving up. I also want to acknowledge her husband and the 2,999 other families out there that are supporting their loved ones. We know that 80% of the burden of care is shouldered by a family member. The cost on families can range from $150,000 to $250,000, and that is not counting the loss of revenues should the diagnoses result in a loss of employment.
We know that 80% of those diagnosed with ALS will die within two to five years. I now know that Stephen Hawking is part of the lucky 10% who get to survive 10 years or longer. We also know that only 10% of those diagnosed with ALS is attributed to family genes. Sadly, that is all we know about the cause of ALS. Doctors can determine the cause of ALS for only 5% to 10% of patients. The rest we do not know, for now.
Research is the most significant lever we have to give a chance for those who are diagnosed with ALS to survive. That is why I support the motion. Research is the only way to increase the likelihood of finding a cure and increasing survival rates. We know this is true. For example, cancer survival rates for all cancers went up from 53% to 60% in approximately 15 years, and that is not factoring in all the progress that has been made over the past century. That is all because of research.
Furthermore, the leading experts and clinicians believe they have the tools required to effectively understand how ALS is caused because of the research done in the past five years. That is more research combined in the last 100 years. However, more needs to be done. For example, project MinE, which aims to profile 15,000 individuals with ALS and 7,500 control subjects worldwide, will provide targets to researchers. Essentially, it will allow researchers to adapt a ready, aim, fire strategy as opposed to a ready, fire strategy. If we do not know the cause, it is extremely hard to identify the cure or provide targeted medicine.
Most ALS researchers believe that limitation to developing treatments is resources in the form of research investments. Of the 30-plus genes known to play a role in the development of ALS, very few have been examined in detail by more than one research facility in the world.
Leading experts in ALS research know there are multiple genetic factors that contribute to people developing ALS, and it is often a combination of these factors that leads to the diagnosis. They also know it is possible for the genetic mutations to show up in healthy individuals, but they never lead to developing ALS. It is for this reason that project MinE will look into the genetic profiles of 15,000 ALS patients worldwide. This would allow us to get a better understanding of the genetic difference in mutations that have a strong causal effect on individuals developing ALS, therefore increasing the chance of identifying the specific cause and eventually a cure.
I want to applaud the ALS Society of Canada for taking part in this study. It is a global effort and I am glad to see that Canada will be participating. Our diversity in Canada will provide better sampling in this global initiative. The project in Canada is currently funded at 36%. All the funding comes from grassroots fund raising campaigns. I hope governments will come to the table to at least bring the total project cost to 50%. This would greatly accelerate Canada's participation. The project worldwide was officially launched in 2013. It is up to us to decide how quickly we get this done in Canada.
I want to take this opportunity to elaborate on a subject that members of Parliament have been lobbied on for quite some months now in regard to ALS. and that is the right to try legislation.
I want to thank the member of Parliament for Humber River—Black Creek for not including this in her motion as this would have caused me to rethink my support. I agree with the objectives in the proposed bill we have seen. Essentially, we need to find a better way to get pharmaceutical research to market to ensure that patients can benefit from it. However, the no liability clause in the proposed bill, which would effectively remove all responsibility from the sponsor of the drug, is certainly not the proper way to move forward on this. The sponsor must continue to bear responsibility. There is a better path forward and that path involves more dollars for research. That is the reason why I support the motion.
I know it can be easy for me to say as I do not face a terminal illness. In fact, if I were in that position, I would try every avenue to find a cure. However, I am also cognizant of the fact that many terminally ill patients have been taken advantage of in the past. In many cases, it killed them before their time or caused even more illness. Furthermore, some of the false hopes that are given to certain communities because of the so-called miracle treatment are despicable. We only have to think of the recent example with those diagnosed with MS and CCSVI treatment.
Having said this, I want to applaud the work Jeff Perrault of Adaptive Canuck ALS Foundation has done and his determination to advocate for the rest of his life for what he believes is right. He is, in my mind, a great advocate for those who have been diagnosed with ALS. I do recognize that we need to find a better way to access innovative medicine wherever it may become available in the world. We just need to ensure the patient is always front and centre in these decisions.
We are close to finding a positive path for those who are diagnosed with ALS. For this to happen, we need to continue to advocate for more research investment dollars, raise awareness and provide a leadership role in Canada. We need a coordinated approach in Canada that rewards horizontal information sharing.
Once again, I want to thank my hon. colleague for bringing this important motion forward. This is our ice bucket challenge and I encourage and challenge all members of the House to support the motion.