Li Jiang, who lives with Parkinson’s, speaks at a roundtable discussion, hosted by Parkinson Canada

Advocacy in Ottawa: Shining a light on the Parkinson’s community

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On October 29, 2024, Parkinson Canada headed to Ottawa alongside people living with Parkinson’s for a full day of discussion with federal leaders.  

Parkinson’s is a growing issue in Canada and places substantial burdens on people, families and our healthcare systems. Action is needed to address the complex challenges those impacted by Parkinson’s face– but we cannot do it alone.  By meeting directly with federal policymakers, our community’s stories resonate in a profound and impactful manner that brings awareness to Parkinson’s. 

Our day was full of meaningful conversations with government representatives, many of whom have been directly affected by Parkinson’s. We discussed how we can partner together to respond to challenges with Parkinson’s and ensure our community can live well. 

This day comes on the heels of the release of our Economic Burden of Parkinson’s in Canada report which outlined the financial realities facing people with Parkinson’s, their care partners and the healthcare system today as well as over the next decade. We’ve encouraged our community to take action by asking their government representatives for better support for people affected by Parkinson’s. Read the full report and send a letter to your government representative at www.parkinsonspricetag.ca  

The Highlights 

This year, in addition to meeting directly with parliamentarians, Parkinson Canada hosted a roundtable discussion focused on the need for improving Parkinson’s research and care in Canada. The roundtable brought together people from across the Parkinson’s ecosystem including people living with Parkinson’s, care partners, parliamentarians, researchers and clinicians, and representatives from Parkinson’s organizations across Canada. The result was a robust discussion that brought perspectives and insights from all areas of our country on how, by working together, we can improve care and outcomes for people living with Parkinson’s in Canada, including the need for more interdisciplinary collaboration, prioritizing research funding, and ensuring stability and financial security for those affected by Parkinson’s.  

We are grateful to our roundtable sponsors, MP Lloyd Longfield and Senator Stephen Greene for their steadfast support and advocacy on Parkinson’s. We are likewise grateful to Minister of Health, Mark Holland, MP Dr. Steven Ellis, and MP Peter Julian for joining us at the event and speaking to our participants. 

Statement in the House 

On October 28, MP Lloyd Longfield of Guelph, Ontario, delivered a statement in the House of Commons. His message spoke to the importance of research and encouraged his fellow Members of Parliament to join Parkinson Canada’s work to find solutions for those living with Parkinson’s. You can watch the clip below:  

 

 

We made 5 key asks to our national leaders: 

  1. Make Canada a world leader in access to medicines. The federal government must ensure Canadians have access to the best Parkinson’s medicines available. Any pharmacare plan that is further developed by the federal government should prioritize patient needs and preferences, ensuring comprehensive medication access, quick approval for new drugs, and enhancing the sustainability of Canadian healthcare.    
  2. Fair Financial Assistance and Access to Disability Supports. Canadians impacted by Parkinson’s should have access to the full suite of financial supports available to them – but this is not the current reality. The federal government must address known eligibility and accessibility barriers to the Disability Tax Credit, and, given its known shortcomings, the government should ensure it is not the only route to receiving the new Canada Disability Benefit.   
  3. Access to health professionals. The federal government must work with the provinces and territories to ensure there are adequate numbers of specialists being trained and entering practice in Canada. This includes removing barriers to the credentialing of internationally trained healthcare professionals.   
  4. Support for care partners. Care partners play a critical role in supporting the Parkinson’s community and the national economy but the mental, physical, and financial strain of providing this support amounts to more than a full-time job. As the Federal Government develops the National Caregiver Strategy, they must listen to the needs and gaps faced by care partners and provide adequate supports.   
  5. Improved data collection. The first step in finding a cure for Parkinson’s is getting better data on Parkinson’s in Canada. Decision-makers should ensure robust demographic data on the state of Parkinson’s is collected and updated regularly by each Province. By working with the provinces on better health data, the Federal Government can help Parkinson’s research efforts immensely.    

Meetings 

Parkinson Canada met with several Members of Parliament and government officials. In these meetings, our community members focused on highlighting the need for fair financial support, affordable and accessible medications, and emphasized the concern of the Parkinson’s community around the lack of Movement Disorder Specialists.  

Members of Parliament 

  • John Brassard – MP for Barrie—Innisfil, Ontario 
  • Francesco Sorbara – MP for Vaughan—Woodbridge, ON 
  • Lisa Hepfner – MP for Hamilton Mountain, ON 
  • Gerald Soroka – MP for Yellowhead, AB 
  • Don Stewart – MP for Toronto—St. Paul’s, ON 
  • Michelle Ferreri – MP for Peterborough—Kawartha, ON 
  • Tracy Gray – MP for Kelowna—Lake Country, BC 
  • Peter Fragiskatos – MP for London North Centre, ON 

Government Officials 

  • Derek Felizarta – Parliamentary Assistant to Jonathan Wilkinson – Minister of Energy and Natural Resources – MP North Vancouver, BC  
  • Fatima Asghar and Elizabeth Wong – Policy Advisors to Mark Holland – Minister of Health – MP for Ajax, ON 

Roundtable Attendees 

Members of Parliament 

  • Lloyd Longfield – MP for Guelph, ON 
  • Mark Holland – Minister of Health – MP for Ajax, ON 
  • Dr. Steven Ellis – MP for Cumberland—Colchester, NS 
  • Peter Julian – MP for New Westminster—Burnaby, BC 
  • Ben Carr – MP for Winnipeg South Centre, MB 
  • Adam van Koeverden – MP for Milton, ON 
  • Ryan Turnbull – MP for Whitby, ON 
  • Rachel Bendayan – MP for Outremont, QC 
  • Ted Falk – MP for Provencher, MB 
  • Alexandre Boulerice – MP for Rosemount—La Petite-Patrie 
  • Anna Gainey – MP for Notre-Dame-de-Grace—Westmount  
  • Lena Metlege Diab – MP for Halifax West, NS 

Senators 

  • Senator Stephen Greene 

 

What’s Next? 

Having had many thoughtful discussions, both in the roundtable and our one-to-one meetings, our team is coming away feeling energized by the engagement of our community and parliamentarians.  The aftermath of our Hill Day is a pivotal moment to harness the energy and passion generated by our advocates. We see this as an opportunity to strengthen our connections with legislators, ensuring the critical needs of the Parkinson’s community remain top of mind in the months and years to come.  

Our commitment to advocacy doesn’t end with Hill Day; it’s a continuous journey. By coordinating efforts with other organization and leveraging our collective voices, we can drive meaningful change, ultimately leading to better resources, treatments, and quality of life for all those impacted by Parkinson’s in Canada.   

 For any questions related to Parkinson Canada’s advocacy work, please contact advocacy@parkinson.ca