Mr. Speaker, I am pleased to rise today to speak to Motion No. 105, which was moved by my esteemed colleague from Humber River—Black Creek in order to reaffirm and consolidate our fight against amyotrophic lateral sclerosis.
Amyotrophic lateral sclerosis, or ALS, is a fatal motor neuron disease that causes the dysfunction and then destruction of the neurons that control voluntary muscle movement. If it is a horrible disease to think about, it is a thousand times worse to live with. The causes of this disease, commonly known as Lou Gehrig’s disease, are unknown in 90% to 95% of cases, and there is no cure.
At a time when medicine and health care are evolving so rapidly, it is possible to make a difference. We have the financial, scientific, and technological resources to fund and implement research activities that will lead to revolutionary breakthroughs. Two infectious diseases have been eradicated worldwide in the past 40 years, and we now look forward to the possibility of eradicating four others.
In fact, smallpox, a common illness, has now been eradicated. It is one of the greatest achievements of medical innovation and global co-ordination ever carried out. Furthermore, on October 14, the United Nations Food and Agriculture Organization announced that rinderpest, the other viral disease of cattle and other ruminants, has been completely eradicated thanks to human efforts. The four other diseases that are being eradicated are polio, guinea-worm disease, yaws, and malaria. These diseases could conceivably disappear in our or our children's lifetimes.
This large-scale global mission is no small task. It requires time, money, and sensitivity. Above all it is necessary. We have the tools to put an end to these debilitating diseases that cause so many deaths. I was very pleased to learn that Canada has joined Project MinE, a multinational study of the DNA profiles of 22,500 people. The goal of this project is to identify the genetic commonalities of people affected by ALS. It is a step in the right direction, but much more needs to be done. Only 62.25 DNA profiles have been collected in Canada, which represents 7% of our goal. Today, I support my colleague from Humber River—Black Creek in her efforts to ask the government to reaffirm its commitment to finding a cure for ALS.
About 1,000 people die of the disease and 1,000 more are diagnosed with it every year in Canada. At least 3,000 Canadians and 200,000 people worldwide have the disease. This number may seem low compared to other infectious diseases. That is not because the disease is uncommon; it is because 80% of people with ALS die within two to five years of being diagnosed. Once the degenerative progression begins, sufferers know their life will be cut short. According to ALS Canada, the cycle is like a revolving door because people do not recover from the disease and there are no effective treatments.
We all watched our dear friend and colleague, the Hon. Mauril Bélanger, succumb with startling speed to the disease. In November, the member for Oakville North—Burlington rose in the House to bid farewell to an active member of her community, Tim Robertson, who died of ALS. This disease can strike anyone, so it deserves our attention.
As with many matters brought before the House, cost is always an issue. What does it cost taxpayers and people with ALS? I cannot answer the first question, but I can share some facts in relation to the second.
The costs involved for people with ALS and their families range from $150,000 to $250,000. Costs include care and equipment, as well as potential loss of income if patients or their family members are forced to stop working. Most people with this disease receive treatments outside of hospitals, and they count on their families and the community to meet their medical needs.
We saw how the viral success of the infamous ice bucket challenge helped raise awareness about ALS. In Canada, nearly $20 million has been invested over the past two years in research into this disease thanks to funds raised as part of that challenge. Brain Canada, with the support of Health Canada, matched all funds raised. This proves that people care about this issue, they want research to be subsidized, and they want a cure.
In Canada, funding for ALS research usually amounts to between $1.5 million and $2 million. That is not enough to discover new treatments that might put an end to this debilitating and fatal disease. Canada has always been a leader in science and technology research.
Let us take advantage of our wealth in human capital in these fields in order to make lasting progress. Imagine what leadership from the government would help accomplish for Canadians and for the global fight to find preventive and proactive solutions to ALS. Imagine alleviating the huge financial burden on our health system and our patients. Imagine the relief of all these families who can only helplessly watch their loved ones fade away.
This goal is not unattainable. It could be reached sooner than we think. Let us promise a future where our children and grandchildren will one day hear the news of a medical breakthrough to cure ALS.
I will close by quoting Dr. Charles Krieger, professor at Simon-Fraser University, chair of the Scientific Medical Advisory Council of the ALS Society of Canada and member of the ALS Society of Canada board of directors.
He said that having been focused on ALS research and care for over 25 years, he had seen the evolution of our understanding and ability to treat this disease since the beginning of the genetic era. Discoveries of the last few years, combined with recent technological advancement, make this an unprecedented time where we now can conceive of a day where ALS is a treatable disease, but reaching that point will still take many years without some funding beyond grassroots fundraising. He added that an investment by the federal government at this critical time will yield impactful results that will accelerate our ability to reach this amazing goal.
I think he is right. By strengthening our resolve, we can make ALS a thing of the past.