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An open letter to the Prime Minister about access to care


Dear Prime Minister Trudeau,  

I am writing to you because the 100,000 Canadians living with Parkinson’s disease are facing a critical lack of access to the care they need. The need is growing as the number of people diagnosed with Parkinson’s in Canada is expected to grow from 30 a day to 50 a day in less than a decade.   

As discussions with Premier’s advance on how to improve the future of healthcare in Canada, I would ask you to answer the call from Parkinson Canada and others, to further increase funding, through the Canada Health Transfer and bilateral agreements, to support measurable and timely diagnoses and enable provinces and territories to address the critical lack of access to Parkinson’s care.  While the Canada Health Transfer does increase every year, health systems are unable to keep up with the cost pressures of existing needs that were further exacerbated during the pandemic. As a result, unmet needs of those affected by Parkinson’s are continuing to go unaddressed.  

There are examples of how additional funding could be best directed by provinces and territories. For instance, Parkinson Canada is working with our partners in the community to develop an innovative model of care to improve access to Parkinson’s care.  A model of care for Parkinson’s that ensures timely access to diagnosis and the right care at the right time by the right provider is the greatest need for our community. By leveraging federal spending power, provinces and territories could be encouraged to invest in new models of care for priority needs that will benefit people with Parkinson’s  as well as those managing other chronic, neurological conditions. Beyond funding, the federal government can play a stronger role in enabling better data and information sharing between provinces and territories and for policy makers to lead to improved system decisions that support stronger patient outcomes. We are pleased that the federal offer includes conditionality around increased data sharing, and support calls for dis-aggregated data to be shared with the federal government.  

Moving forward, we strongly urge that the Canadian Institute for Health Information (CIHI) proceed with the development of new common health indicators in a collaborative manner, drawing on perspectives from health stakeholders invested in patient advocacy and care, such as Parkinson Canada. We would be pleased to be engaged in a formal process to develop these indicators leveraging our experience on the ground supporting Canadians, as well as our positive and productive relationships with provincial and territorial governments and their respective health systems.  

Finally, in 2021, Parkinson Canada held a series of advocacy roundtables that consisted of eight regional sessions, followed by a national session. This effort brought together voices from the Parkinson’s community, including those living with and impacted by the condition, to gather insight and clarity to support Parkinson Canada’s advocacy efforts. We were able to capture the key issues surrounding Parkinson’s healthcare from provincial, territorial and national perspectives. The findings from the roundtables further demonstrate the need for increased supports for the Parkinson’s community. We invite you to review the 2021 advocacy roundtable reports, which can be found here 

The 100,000 Canadians living with Parkinson’s right now need support from the federal and provincial governments across the country.  Parkinson Canada is ready to partner on a solution and is committed to investing in innovated models along with the provinces to ensure people living with Parkinson’s have access to the care they need, where and when they need it. 

Thank you for your leadership, and I look forward to learning about next steps.  


Karen Lee
President and CEO, Parkinson Canada