Mr. Speaker, first I would like to thank the hon. member for Humber River—Black Creek for tabling Motion No. 105 on amyotrophic lateral sclerosis, or ALS. I want to thank her for her hard work to tackle this devastating neurological disease.
Members may know that, according to the Amyotrophic Lateral Sclerosis Society of Canada, ALS Canada, between 2,500 and 3,000 Canadians have amyotrophic lateral sclerosis. Unfortunately, available treatments can do no more than relieve symptoms or delay the progression of this terrible disease by a few months.
We all know that it took the life of our friend and esteemed colleague, the Hon. Mauril Bélanger, who served the people of Ottawa—Vanier and his country for over 20 years. He will be remembered for his exemplary devotion to his community.
Without a cure, patients and their families have very little reason to hope. Motion No. 105 acknowledges the tragic death of over 1,000 Canadians with ALS each year and the fact that 1,000 more Canadians are diagnosed with the disease annually.
The motion calls on Canada to take the necessary steps to fight this terrible disease.
Through this motion, the House is being asked to reiterate its desire and commitment to work with the provinces and territories to combat ALS through research and awareness.
I am here today to express that the Government of Canada is committed to addressing ALS. We understand that continued research efforts stand to improve our understanding of this disease and lead to improved treatments and cures. Importantly, research also stands to offer hope to thousands of patients and families facing ALS. That is why our government is supporting Motion No. 105.
In order to credit existing work across the federal government and recognize its leadership role, we would propose two amendments to this motion. Please allow me a moment now to walk the House through these amendments.
First, in order to recognize past and current federal investments toward research on ALS, the Government of Canada is of the opinion that we should talk about playing a leadership role in supporting ALS research and supporting national efforts to find a cure for ALS at the earliest opportunity.
Federal investment in ALS research is up in recent years. Between 2011-12 and 2015-16 through the Canadian Institutes of Health Research, the federal government invested $16 million in ALS research, $4.4 million in 2015-16 alone, a 70% increase over 2011-12. This is in addition to the investments made by Health Canada and the not-for-profit sector.
The Canada Brain Research Fund, administered by the Brain Canada Foundation, has a system of matching funds under which federal funding provided by Health Canada is matched with equivalent funding from private donors and charities involved in brain research.
Since 2014, the money raised for ALS by the ice bucket challenge has been doubled by the Canada Brain Research Fund to provide discovery grants in order to promote research into the causes and treatment of ALS.
As we can see, the Government of Canada continues to provide leadership on ALS research. By doubling contributions from private donors and charities, the federal government hopes to encourage Canadians to get behind this important cause.
Today I would like to reiterate the government’s commitment to support the country’s leading ALS researchers in order to get the best results in the interests of all Canadians.
The work of researchers such as Dr. Jean-Pierre Julien of Laval University, which is in my riding, and Dr. Janice Robertson of the University of Toronto, Canada Research Chairs both, is essential to improving available treatments and finding a cure for ALS. It is therefore essential that we continue to support their research.
As the House knows, there are many policy approaches the government uses to coordinate efforts and raise awareness. From large-scale strategies and frameworks to targeted program initiatives, the government takes care to ensure it uses an appropriate approach. It is not evident that comprehensive strategies are always needed when it comes to specific medical conditions and diseases. This is particularly true when effective programs and initiatives already exist.
In addition, there is a tendency worldwide to address rare diseases like ALS through strategies and approaches that broadly encompass all rare diseases. Canada has developed several such strategies. For example, Canada's rare disease strategy was launched by the Canadian Organization for Rare Disorders in 2015. It proposes a five-point action plan to address unnecessary delays in testing, incorrect diagnosis, and missed treatment opportunities.
One of these five goals is promoting innovative research. It recognizes Canada's open and inclusive research, strong international collaboration, and a research capacity that spans the research continuum, including basic biomedical research, clinical research, and health services and policy research. The strategy suggests leveraging these strengths in the field of rare disease research. It also promotes collaboration in all fields of rare disease research.
Through a key international program, Canada is doing just that.
Canada, represented by the Canadian Institutes of Health Research, Genome Canada, and the Fonds de recherche du Québec, is a member of ERA-NET for Research Programs on Rare Diseases, or E-Rare, which involves 25 organizations from seven countries. E-Rare coordinates research efforts in the fight against rare diseases.
As part of this research strategy, Canada is enhancing its ability to prevent, diagnose, and treat rare diseases such as ALS more effectively, and to benefit from international resources and expertise on the matter.
As the House can see, Canada already has ways to fight ALS and other devastating illnesses through its programs and initiatives. For these reasons and in light of the increased investments in research into ALS, our amendment seeks to intensify current efforts instead of developing a new strategy.
To be clear, we suggest deleting the word “eradication” from the motion, which is generally associated with infectious diseases. In the context of ALS, it would be preferable to use expressions such as “finding treatments” or “finding cures”. This would help provide some hope to the 3,000 Canadians with ALS and their loved ones.
I am pleased to see increasing federal investments in ALS research. I am pleased to see growing ALS awareness across across Canada. I am pleased that the Government of Canada will be supporting the motion, with the amendments I described.
With this support, the Government of Canada is playing a leading role in addressing ALS. We are calling on all Canadians to join us in raising awareness, supporting research, and offering hope to the thousands of Canadians affected by ALS.
I therefore move:
That the motion be amended by deleting all the words after the words “(b) call upon the government to” and substituting the following:
play a leadership role in supporting ALS research, and to support national efforts to find a cure for ALS at the earliest opportunity.”