Thank you, Mr. Chairman and committee members, on behalf of Parkinson Society Canada and people living with Parkinson's, for the opportunity to present today.
Parkinson Society Canada is a national, not-for-profit, volunteer-based organization with its 12 regional partners and over 200 chapters and support groups across Canada. Our purpose is to ease the burden and find a cure for people living with Parkinson's. We are the national voice for people living with Parkinson's in Canada.
Over 100,000 Canadians have Parkinson's today. Parkinson's is among the most prevalent of neurological disorders. It is a chronic, progressive neurological disease leading to the degeneration of nerve cells in the brain. Parkinson's is also associated with a substantial burden of illness and cost to society.
For those not familiar with Parkinson's, its progression varies from person to person, and for most individuals, this takes place over many decades. Some people suffer uncontrollable shaking, loss of balance, loss of facial expression, slowed motion, slurred or unusually quiet speech. Chewing and swallowing problems are common symptoms of Parkinson's.
I would ask you to try to imagine what your life would be like if you had Parkinson's, if you were not able to ever smile again, talk again, write again, walk, or swallow and enjoy the food that you enjoy today. This is what Parkinson's is like for over 100,000 Canadians who live with this disease every single day.
So far, researchers and clinicians have found no way to slow, stop, or prevent Parkinson's. It is incredible how little we know about this disease at the population level. The number of Canadians with Parkinson's is expected to increase dramatically as our population ages, and so are the costs. This increase in the population of people with Parkinson's may—and I note may, because I'll point out why I'm saying that now—have a large impact on health resources used in communities across Canada.
Unfortunately, little is known about the true picture of Parkinson's in Canada because the data are not tracked, and that's why I said that Parkinson's may have a large impact. Parkinson's is not a disease of the elderly, but it does affect many over 65, and the incidence increases with age. As such, we are staring at a train coming down the track. We just don't know how big it is, when it will get here, or how much damage it will do, or if or when it goes off the rails. Parkinson Society Canada sees an impending crisis and we need your help to stop it.
As a progressive, degenerative disease, the social and economic impact of Parkinson's will increase over time for the individual and society as the Canadian population ages. There is an urgent need for baseline and projected data on the economic and social burdens Parkinson's imposes. Much epidemiological data are missing. Measuring the data gaps will lead to a better understanding of Parkinson's disease and better public policy decisions. This is our challenge.
Parkinson Society Canada is funded primarily through private donations and sponsorships, and we have demonstrated continued commitment and leadership over the years by providing direct funding to Parkinson researchers. We have also worked with Health Canada to develop a social and economic impact document that was published in 2003, which we have left with you. Much of what we know about Parkinson's comes from this document, but it also identified many gaps. It is now three years later, and we want to address the challenge we faced then and still face now.
Parkinson Society Canada has begun to work on this, but we can't do it alone. We have commissioned Dr. Christina Wolfson, at McGill University, to develop an epidemiological framework to determine the best approaches to acquire required data. With an immediate investment of $5 million by the Government of Canada, this work could begin immediately. This funding can take us another step closer to easing the burden for society, communities, and individuals living with Parkinson's and their families. The Government of Canada can demonstrate leadership and effective use of public funds by investing now in gathering essential epidemiological data about Parkinson's disease so that informed national policy decisions can be made based on credible epidemiological data.
The current and future impact of Parkinson's on the Canadian economy cannot be overstated. On behalf of people living with Parkinson's and Parkinson Society Canada, I urge you to consider this request for an immediate investment in a national epidemiology study for Parkinson's. Our Canadian researchers are well known internationally for making contributions. Many researchers believe a cure is as close as ten or fifteen years away, and we want Canada to be at the forefront of Parkinson's research. We would like the Canadian government to be there with us when we find a cure. Wouldn't it be great if a Canadian researcher found a cure for Parkinson's?
I would like to thank you very much for the time today. We hope the result of this investment would be more efficient use of the Canadian health system resources and an increase of quality of life for people living with Parkinson's and their loved ones.
Thank you very much.