Madam Speaker, I am proud to rise today as health critic for the New Democratic Party and on behalf of all my New Democrat colleagues to stand in support of Motion No. 105 and to speak to the importance of addressing amyotrophic lateral sclerosis, more commonly known as Lou Gehrig's disease or ALS.
I also want to express again my congratulations and thanks to the member for Humber River—Black Creek for her support in this area and her hard work in bringing this important issue before the House.
ALS has devastating effects on the many individuals it affects directly, on their families and caregivers, and on our entire public health care system. It is a disease that does not discriminate. In its most common form, it arrives unexpectedly and can affect anyone, regardless of ethnicity, gender, or age.
Its impacts are keenly felt by all Canadian communities, including our very own here on Parliament Hill. All of us remember our colleague Mauril Bélanger's courageous public struggle with ALS. Mr. Bélanger was diagnosed with ALS following the 2015 federal election, and it was especially difficult to know that at the very moment he hoped to live out his dream of being elected Speaker of this chamber, he was struggling to find his voice.
He sent a note to his colleagues announcing he had been diagnosed in the fall of 2015, and he passed away last August. This shows how sudden and rapid the pathology of this disease can be. However, Mr. Bélanger did not go quickly, in terms of the impact he made, nor was he silenced.
Mr. Bélanger was the first MP to use a voice generator on the job. He took advantage of the tool in January 2016 to introduce a private member's bill to make the English lyrics to O Canada gender neutral. He also used the computerized voice from his iPad in March 2016 to carry his remarks when he served as honorary Speaker of the House. By that time, Mr. Bélanger needed assistance to walk. He thanked his colleagues for the great privilege before he was helped out of the Speaker's chair. My colleague, the member for Outremont, called this “a rare moment of grace in our parliamentary institutions.”
Let us seize this moment to commemorate Mr. Bélanger's passionate voice and to work together towards finding a cure for this deadly disease. Let us honour our colleague and ensure that all Canadians have access to high-quality, compassionate, and effective care.
This motion calls on the House to reiterate its commitment to combat ALS, to increase funding for medical research and awareness campaigns, and to develop a comprehensive national strategy to assist with the eradication of this disease.
New Democrats support this motion. We have a long, proud tradition of advocating for federal leadership on health care issues. Indeed, among our party's foundational pillars stands a commitment to expanding health care and ensuring that all Canadians have access to treatments and medicines they need, when they need them, no matter where they live, no matter their economic circumstance, and no matter their background.
ALS is a progressive neurodegenerative disease which destroys nerve cells that control muscles, leading to disability. The living wires which connect the brain to the patient's muscles degenerate leading to a loss of mobility, speech, and to the gradual paralysis of the muscles of the throat and diaphragm as the patient loses the ability to swallow, cough, and breathe.
ALS is a terminal disease. It does not have a cure nor an effective treatment. Currently, approximately 3,000 Canadians are living with ALS. Every year, 1,000 will succumb to the disease and 1,000 will be newly diagnosed. The lifespan after diagnosis is, on average, two to five years.
ALS is inherited in 5% to 10% of cases. In most people with familial ALS, their children have a fifty-fifty chance of developing the disease. In its most common form, there is no known cause. ALS can affect anyone, with many people being struck down by the disease in the prime of their life. However, the risk increases as individuals grow older.
As Canada's population ages, it is becoming increasingly more important that we prepare our health care system and our communities for the inevitable rise in the number of Canadians suffering from ALS and other age-related illnesses. Some of the early signs and symptoms of ALS include: difficulty walking or doing normal activities; weakness in legs, feet, ankles, and hands; trouble swallowing and eating; muscle cramps and twitching in arms, shoulders, and tongue.
Most people with ALS will also develop trouble speaking over time. This usually starts as occasional mild slurring of words but progresses to become more severe. Speech eventually becomes more difficult for others to understand and people with ALS must rely on other communication technologies to communicate. For many with the disease, losing their voice is closely connected with the loss of autonomy and self-identity.
Most of us will recall the 2014 ice bucket challenge co-funded by Pete Frates in part to raise awareness of these impacts. Through broad public initiatives such as that, Canadians came together in an unprecedented way to support ALS research and care, resulting in $17 million being raised. Of those funds, $11.5 million were dedicated to research and then matched with $10 million by Brain Canada, a conduit of the federal government's Canada brain research fund.
Due to a Canada brain research fund allocation deadline of March 2017, the funds from the current ALS Canada partnership will be fully invested by 2016 and the momentum that we have created will become difficult to maintain. Continuing these programs is critical to creating a world where ALS is a treatable disease, perhaps even prevented. The programs currently operating this partnership with Brain Canada consist of Hudson grants, discovery grants, and career transition awards.
In its submission to the 2017 pre-budget consultations, the ALS Society of Canada recommended to the government some concrete action it would like to see taken.
First, it asked that the federal government invest $25 million over five years, which is $5 million per year, to maintain the momentum built through the ice bucket challenge and partnership with Brain Canada and the Canada brain research fund.
Second, the ALS Society of Canada asked the federal government to invest $10 million to allow every Canadian living with ALS an opportunity to contribute a sample, and to allow the contribution of every stored sample from those who have passed, to project MinE, an independent large-scale whole genome research project.
A prominent Canadian-backed initiative, project MinE plans to map the complete DNA profiles of 15,000 people with ALS along with 7,500 people who do not have ALS, being a control group, to create a database of genetic information on the disease. They will then compare that data from the ALS participants and the non-ALS participants and hopefully find the genetic mutations linked to ALS. Once they find those, hopefully we can find possible treatments.
The Canadian component of project MinE brings together four of Canada's leading ALS geneticists from Vancouver, Toronto, Montreal, and Quebec City for their first ever cross-country collaboration. Each has led or been a part of international consortia that have resulted in some of the most important genetic discoveries in the field. They also represent a geographical balance that provides a collaborative set of Canadian samples representative of ALS cases across the country. Dr. Nicholas Dupré, Dr. Ian Mackenzie, Dr. Ekaterina Rogaeva, and Dr. Guy Rouleau are leading this research.
Other collaborators in Canada's project MinE effort are the ALS clinics that will collect and in some cases store the blood samples being used for the initiative. Potential ALS clinic partners that have been identified to date are the GF Strong Rehabilitation Centre's ALS centre in Vancouver, the Sunnybrook Health Sciences Centre ALS clinic in Toronto, the ALS program at the Montreal Neurological Institute and Hospital, and the ALS clinic at CHU de Québec.
In essence, ALS research has come further in the last five to seven years than in the previous century, and researchers are hopeful for a continued acceleration of knowledge leading to an effective treatment. As of 2017, most of the leading researchers and clinicians in the field believe they now have the tools required to understand how ALS is caused, which will ultimately lead to treatments for this fatal disease. They are waiting for the Liberal government to help them by committing those funds in the budget.
We have to do more. Just as Mr. Bélanger's work in this Parliament continues to this day, we must commit ourselves to working together to find a cure for this deadly disease.
Finally, for those who have lost a loved one to ALS, we grieve with them. We remain steadfast in our commitment to ending ALS. We pledge to support those supporting a loved one living with ALS. For those living with ALS, we are with them. We will not give up until we find an effective treatment and make ALS a disease of the past. New Democrats will do everything we can to make these three objectives a reality.