Mr. Speaker, I am pleased to rise in the House to speak to the motion put forward by the member for Humber River—Black Creek regarding amyotrophic lateral sclerosis, commonly known as ALS or Lou Gehrig's disease.
Motion No. 105 proposes two things. It calls on the government to reiterate its commitment to combat ALS through research and awareness. It also calls on the government to increase funding for research and create a strategy to assist in the eradication of ALS as soon as possible. Both parts of this motion are necessary steps that need to be taken and will serve to help those currently suffering with ALS as well as those who will be diagnosed in the future.
As all of us know in the House too well, ALS is an aggressive disease. We saw first hand how it quickly and drastically affected our colleague, the Hon. Mauril Bélanger, just last year. Today, approximately 3,000 Canadians live with ALS, and each year roughly 1,000 more are diagnosed. There is no cure for this, and about 1,000 Canadians die from ALS each year. This equals to two to three people every day who are dying from this incurable disease.
The average onset occurs between the ages of 40 and 60, and is more common among men than women. Currently, there is no known cause for ALS, which is exactly why this motion, and in turn more research, needs to be done. Of all those diagnosed with ALS, only 5% to 10% will have a familial or hereditary type of the disease.
There is also no established, concrete way to detect the disease early. Even once symptoms begin to appear, it can be difficult to diagnose as the symptoms tend to mimic typical signs of aging, such as lack of coordination, muscle weakness, and cramping. Once diagnosed, 80% of people with ALS have a life expectancy of two to five years. As I stated previously, this is a very aggressive disease, and more research needs to be done so it can be diagnosed and treated as soon as possible once symptoms begin to occur.
In my previous life as a chiropractor, I was fortunate not to come across any patients who ended up being diagnosed with ALS. However, while I was doing my fellowship, working and studying at Royal University Hospital in Saskatoon, I experienced a patient with ALS. As a diagnostician, this is not a condition one readily forgets.
Given that ALS is relatively uncommon and that the symptoms can easily mimic those of other less serious medical conditions, I encourage all primary health care practitioners to ensure they get the full picture with respect to a patient's history, complete orthopedic and neurologic exams, and to use all the diagnostic tools and information available to them. If there is any doubt or concern, I would encourage health care practitioners to refer their patient to the appropriate specialist, and where deemed necessary, to an ALS specialist. While there may not be a cure, it is worthwhile to do everything possible to try to extend the lifespan of that patient should he or she eventually be diagnosed with this disease.
One aspect of living with and fighting ALS that many do not tend to think about is the financial cost. It is common that those with ALS and their families will end up paying hundreds of thousands of dollars to manage this disease. These expenses come in many forms.
Most people with ALS prefer to live at home with their loved ones, while they battle their disease. This means that homes need to be retrofitted to allow for greater accessibility, as those afflicted with the disease often end up wheelchair-bound due to the muscle degeneration. Ramps may need to be installed, doorways may need to be widened, and these things come at a cost.
There is also an expense of medical equipment that is often needed when people with ALS choose to live at home. If they have issues with swallowing, they might need to purchase a suction unit to ensure the saliva does not built up and flow into their lungs. As the disease progresses, it might be necessary to purchase or rent a special bed to ensure that people ALS is as comfortable as possible. Other costs associated with ALS include medication, which can sometimes be extremely expensive.
There is also the aspect of travel costs. I live in a rural riding and in order for one of my constituents to see an ALS specialist, he or she would have to drive for hours to get there. This means paying for fuel, food, and potentially accommodation in places like Regina or Saskatoon, which are two to five hours away.
All this is to say that ALS a challenging disease to manage just on the financial side of things, and anything that can done to find a cure should be done.
There is also an emotional cost to ALS, which is impossible to quantify. The people who are diagnosed have to cope with the knowledge that their condition is incurable and that they will soon lose the level of physical independence they are accustomed to. They also feel pressure to get their affairs in order, as ALS can progress rapidly once it is diagnosed. These are just a couple of the issues that people with ALS need to confront while dealing with the disease.
Families and friends are also affected when a loved one is diagnosed with ALS. As many people with ALS wish to stay at home, family members will often take on the role of caregivers. Being a caregiver is not easy. It is physically and emotionally exhausting, and it only becomes more difficult as the disease progresses and the person with ALS begins to rely on more help more often. Caregivers sacrifice a lot when they assume that role, and I commend them for all they do in that regard.
Respite care beds cost $32.94 per day, based on income, in Saskatchewan. This service is provided to give relief to the family and other primary caregivers of a dependant person living at home. Caregivers may also need to quit their jobs or take a leave of absence to assist a loved one who has ALS. This adds to the financial burden that many families face after receiving a diagnosis, and it can be emotionally taxing as well, given that both the caregiver and the person with ALS will now need to adjust to the new reality.
There are support systems out there, however, and I encourage anyone dealing with this disease to seek those out, even if it is just talking to someone who has had, or is going through, a similar experience.
The first part of the motion calls for increased research and awareness, and this is integral to finding a cure for ALS. I am sure that all of us here recall the ice bucket challenge that went viral in 2014 and is still going today. This challenge ended up raising more than $19 million dollars for ALS research and brought more attention to the disease than had ever been paid before. Suddenly people all over the world were talking about ALS. In fact, due in part to campaigns such as this one, more has been done in the field of ALS research in the last five years than in the entire century before it. That is remarkable, and I truly hope that this momentum can continue in the quest to find a cure for the disease.
There are also many walks for ALS that happen across the country, with the goal of raising awareness and funds to be put toward research. In my home province of Saskatchewan, there is Kim's Walk, scheduled for June 3, the Saskatoon Walk on June 25, and the Regina Walk on September 23. These are a great way to not only increase awareness and raise money but also to encourage people to get outside and be active while also building relationships in the community. I sincerely hope that everyone listening today will participate in one of these walks this summer and in any other fundraising effort for ALS research and awareness. There is a list of scheduled walks on the ALS Society of Canada's website. I encourage everyone to check that out.
We need to find a cure for this disease, and we need to do it at the earliest possible opportunity. In 2011, Brain Canada was created. It is the only national non-profit organization devoted to supporting all neuroscience research. The previous Conservative government invested $100 million dollars over seven years in Brain Canada, funding that expires in 2017. The ALS Society of Canada received $10 million dollars through Brain Canada to stimulate research relevant to ALS, and I call on the Liberals to do everything in their power to maintain or increase that level of funding. Clearly, it is needed, and I trust that the government recognizes that, just as the previous government did.
ALS is currently incurable, but there is always hope. Technology has advanced quickly in the last few decades, and there have been many advances in the field of medicine because of this. I believe that with the use of technology and the continued support for ALS research and awareness, a cure will be found.
I would like to thank the member for Humber River—Black Creek for her work on this issue. I encourage all members of the House to support the motion, as I will be doing.