Chair, National Advocacy Committee
Painting a picture of what it means to live well with Parkinson’s is at the heart of everything we do on the national advocacy committee. After all, how else would our elected representatives and policy makers begin to understand the many ways that Parkinson’s affects quality of life – not just the health effects but the social, economic and other impacts – and the need for input and support from a wide range of government ministries and departments? Together we are making progress in effecting change… but there is much more to do.
On the federal front, Parkinson Society Canada is one of the lead organizations asking the federal government to support the development of a National Brain Strategy and to protect the privacy of genetic information. We are generating support for several private members’ motions and bills that address issues of importance to the Canadian Parkinson’s community. We are also calling for accelerated and increased investment in both Parkinson’s-specific research and broad-based neuroscience research. After successfully leading the effort to garner government support for a national epidemiological study, Parkinson Society Canada is now serving as a member of the implementation committee for the four-year National Population Health Study of Neurological Conditions.
At the provincial level:
• Parkinson Society British Columbia is a member of the Better PharmaCare Coalition which is lobbying the BC government for better BC PharmaCare program coverage for evidence-based prescription medications and health products.
• Parkinson Society Manitoba supported former MP, Judy Wasylicia-Leis’s introduction of a bill in Parliament to prohibit discrimination on the grounds of a person’s genetic characteristics. It also updated the provincial NDP caucus on the new statistics showing that as many as 6,000 Manitobans have been diagnosed with Parkinson’s. Previous estimates stood at 3,500.
• Our regional partners in Ontario are bringing to the attention of policy makers the role of speech language pathology services in enabling such basic functions as swallowing and communicating. They are also partnering with other health charities in working with the Ontario government to develop a provincial Brain Strategy.
These are just some of the ways we are advocating for improved quality of life for Canadians living with Parkinson’s, families and care partners.
You can do your part. It only takes one person to get the ball rolling. Write your elected officials or arrange to meet with them on a regular basis. Outline some of the key issues that Canadians with Parkinson’s have identified as being important. Share your own story as a way of helping officials appreciate the challenges that people with Parkinson’s and families face. Mention the need for public education and awareness programs to reduce stigma and end social isolation. In parting, let your officials know they can contact you, in future, for more information.
Visit the Parkinson Society Canada Advocacy Centre for background materials and template letters that will help you communicate with your federal elected officials. There is work to be done. Let’s do it!