Madam Speaker, I am very pleased to rise in support of the motion by the member for Humber River—Black Creek, Motion No. 105, which calls on the House to not only reiterate support for ALS research and awareness, but also for the government to increase funding for ALS research and develop a national strategy for the eradication of ALS.
We all know someone who has been struck by this disease. In the House, we watched ALS take one of our, the Hon. Mauril Bélanger, just last year. I would be remiss if I did not take time in this debate to send our thoughts and prayers to Mr. Bélanger's family and our colleagues across the way. I still look back at Mr. Bélanger's day as Speaker as one of the more memorable moments I have spent in the House, with the cheers from all sides of the House and, of course, the pride Mr. Bélanger displayed as he took his place in the Speaker's chair.
A dear of friend of mine lost her father to ALS years back. He was a justice of the peace in Edmonton and served his community without fail in that role. Despite running across a rogue's gallery of Edmontonians appearing before him for bail hearings every day, he never had a bad word to say about his service to the city. In the early 1990s, when I left Edmonton to hunt for work, he helped take care of my home in my absence, mowing the lawn and taking care my dog without any expectation of a favour in return. After the disease had taken its toll and he knew it was his time, his final request was simply to be brought back to his home to pass surrounded by family.
Debilitating diseases like ALS affect our communities in various ways. Health care is always a hot button issue, particularly health transfers. As we know, they have been at the forefront of political discussions in the last few months. From accessibility to community support to program funding and resources, we hear from people at all levels. I know my office, no doubt like many other MPs here, work with constituents who need access to caregiving and are seeking help to find regional resources, and, as is often the case, are looking for more support from a system that may not be best equipped to handle changing demographics and demand.
Discussions like the one we are having today are essential for establishing an action plan for community organizations that serve those who live with debilitating conditions. Approximately 3,000 Canadians live with ALS, a disease with no known cause, no genetic predispositions, and, upon diagnosis, gives a sufferer an average life expectancy of just two to five years. ALS can hit anyone at any time in his or her life. While the average onset is 40 to 60 years, there are people under the age of 20 being diagnosed.
It is important that we ensure organizations serving the communities we represent have the best information, the right experts, and the appropriate tools to help the people who rely on them for their help. Despite knowing what we do about the disease, there is still much to learn. There is no way to detect the disease early, no treatment to delay the development of the disease, and while new drugs emerge constantly, there is no cure.
Further research into neurological disorders, brain injuries, and general brain sciences may open new doors to how we approach ALS treatment and maybe even detection. A report done a few years ago out of Boston University noted a potential connection between brain injury and ALS. It was found that some former athletes all shared an abnormal protein in their brains and spinal cords, all had a history of repeated brain trauma, and several had been diagnosed with ALS before death.
When I read of this study, I could not help but think of a friend and former work colleague of mine who we lost to ALS. He had played college football at Brigham Young University with future NFL star Steve Young as his teammate. My friend was always quick to point out he was a third stringer and that Steve Young was too busy with the attention of fans and young women, which came with being a starting quarterback, to even talk to my friend.
Upon diagnosis, my colleague decided to live out his years to the fullest. He remarried, attended several, and I note several, Super Bowls, and travelled the world to golf. He never let his condition change him or get him down, ensuring his golfing buddies still razzed him when he made a bad swing or fell over in a sand trap. I am always left to wonder if his years of college football played a part in the disease that took him.
More research in these areas may help us determine what lifestyle factors, if any, contribute to a higher risk of developing this disease. In 2013, our previous government launched funding for concussion and brain injury research. This is a good start, and it is my hope the current government continues on this path for the sake of our kids, our friends, even my friends across the aisle, who still play contact sports.
This kind of research also helps organizations like the ALS Society of Canada determine what areas they need to focus on for the people who look to them for help. For parents, spouses, and family members who are living with and/or supporting someone with ALS, it can be a struggle to find the resources and community support they need to help their loved ones.
Caregivers can be struck with various challenges when caring for someone who needs full-time support. These challenges include stress, social withdrawal, depression, high blood pressure, sleep deprivation, as well as financial strain and job insecurity. Caregivers are expected to power through some of the most emotionally and physically exhausting situations, all while making sure they are giving a high standard of care to the person they love.
ALS comes with many challenges, one being the family caregivers, who are often young themselves, being forced to take a leave of absence or quit their jobs to care for a loved one. Without the appropriate resources, or at least without knowing where to get those resources, the financial burden on a family caregiver can rapidly increase.
The ALS Society of Alberta notes that, “A person with ALS can require equipment and care valued at more than $240,000”. For someone who is overwhelmed with these new care responsibilities, the new financial realities for health equipment and nursing and the question of how they will be able to pay day-to-day expenses, like rent, mortgages, and bills, can be devastating.
It can be argued that these issues are the jurisdiction of provincial health policy, but we still have a duty to help our constituents when they come to our office, looking for help, to bring these concerns forward and, hopefully, develop evidence-based policies as a response to the needs of the people we hear it from.
Private members' business is an essential part of our parliamentary process, which is why, historically, votes on matters like this motion before us today are free votes left to the discretion of the individual member, regardless of political stripe.
It is here within this legislative and procedural framework that we can seek and find support for issues like this in a non-partisan and supportive manner. It allows for co-operation. It lets us, as individual members, branch off beyond our respective parties' interests and serve the interests of the people who elected us.
We have numerous motions, like Motion No. 105, that are before us in the House right now. One motion, in particular, from the member for Niagara Falls, who is working in partnership with the member for Don Valley West, calls for developing a national Alzheimer's and dementia strategy.
We had one introduced by the member for Edmonton Manning that, unfortunately, did not pass for what I can only imagine were political reasons, given the bill would have helped thousands, if not millions, of Canadians present and future in accessing safe and efficient organ donation. The member for Edmonton Manning has himself saved a life by donating an organ, so he knows what a national donor registry could have meant for those in need. He had the support of many national organizations, but his worthy bill was voted down in a whipped vote.
Just last week, the government voted down a private member's bill put forward by a member for the NDP. The bill would have allowed small business owners passing down the business to family to be treated the same tax-wise as if they had sold to a complete stranger. it was a worthy bill that would have supported small family farms and businesses that had the support of the Conservatives, the NDP, and the Bloc, yet was voted down.
I hope members on the government side will take note of the support given by members of both the Conservative and the NDP opposition to Motion No. 105 and other worthy private members' business and, in the future, vote for what is right and not for what is just politically expedient.
I know constituents in my riding agree with enhancing research and awareness for ALS and other debilitating conditions.
The ice bucket challenge, perhaps of the first viral fundraising campaigns of its kind, raised enough money to fund numerous ALS studies. One of those studies managed to uncover a gene present in both inherited and sporadic forms of ALS. This is one example of how community-based campaigns can fund and drive research. If the ice bucket challenge is any indication, we have hundreds of thousands of Canadians who are ready to get involved and help eradicate ALS.
I want to thank the member for Humber River—Black Creek for introducing the motion that I know most, if not all, members of the House can get behind.
Hopefully, during this session, we can strive to achieve the same level of respect and understanding from each other on this government member's motion as we do for other members' private members' business moving forward.