Joyce Gordon, President and CEO of Parkinson Society Canada (centre-right, holding report), and Health Minister Rona Ambrose (centre left, beige jacket), attend a group photo session with representatives of other members of the Neurological Health Charities of Canada after the Minister announced the release of the report on the National Population Health Study of Neurological Conditions in Canada during a related event in Ottawa on September 11, 2014.

Parkinson Society Canada now has all-Canadian, evidence-based information about the impact of Parkinson’s disease to press forward with advocacy plans to help improve the lives of Canadians living with Parkinson’s. Having the relevant facts at hand increases the chances of policy change and government investment, from larger funding of research to more support for caregivers.

And the facts come from the report on The National Population Health Study of Neurological Conditions, released September 11. The four-year, $15 million study investigated the scope of 14 neurological conditions, including Parkinson’s disease, and how they affect Canadians, as well as related risk factors, economic costs and the use of health services. It involved 130 researchers and clinicians from 30 institutions across Canada, as well as 177,000 Canadians affected by neurological conditions who offered their insights and personal experiences. The study was co-managed by the Public Health Agency of Canada and Neurological Health Charities Canada (NHCC). Parkinson Society Canada (PSC) played a pivotal role in the study through our leadership role in NHCC.

Two of the most significant findings (link to ‘Key findings’ subhead at end of article) of the study concerning Parkinson’s disease are about its dramatic increase in prevalence in the near future.

• The number of Canadians over 40, living with Parkinson’s disease, will increase by 65 per cent, from 99,000 in 2016 to 163,700 by 2031.
• The number of Canadians over 65, living with Parkinson’s disease, will more than double to 148,800 by 2031.

For Yvon Trepanier the completion of the study and the publication of the report is the culmination of a long, tough challenge; almost equal to his life with early onset Parkinson’s disease.

“When I was chair of the PSC Advocacy Committee, we just didn’t have the Canadian data we needed to convince government that people with Parkinson’s needed more support. Even our first request for funds to collect data on the numbers and impact of Parkinson’s, was dismissed as insignificant. I knew we had to join forces with others to get what we all needed,” said Yvon.

It wasn’t until PSC joined forces with other 23 other neurological charities and formed the NHCC that the federal government agreed to invest in the now completed study. Most importantly, the federal, provincial and territorial governments will continue to gather data and report on the prevalence and impacts of neurological conditions in Canada, including those of Parkinson’s disease.

“We are incredibly proud of the contributions made by Canadians living with Parkinson’s disease and the role our organization played in this outstanding achievement,” says Joyce Gordon, President & CEO of Parkinson Society Canada and Chair, Neurological Health Charities Canada (NHCC), the partner in the study.

For Bruce Ireland, past Chair of PSC, working on a micro simulation to determine the costs associated with Parkinson’s disease for the study was incredibly personal. His wife Karen, who lives with Parkinson’s, completed one of the person-affected surveys.

“This is a ground-breaking study,” said Bruce, “giving us our first, evidence-based, overview of Parkinson’s disease and its impacts for Canada as well as clear indications of the gaps in care, data and research that we must address right away. We are now a key priority on the government’s agenda.”

The report points out the lack of information on the risk factors or causes of most neurological conditions, including Parkinson’s. Reliable data collection and ongoing research are the best ways to address such gaps. It also highlights the physical, financial and emotional burdens faced by those living with Parkinson’s disease and their families. Parkinson Society Canada’s national advocacy campaign is looking for real improvement on all these fronts.

“Having the facts means that it is now essential for the government to take action,” says Gordon.

In 2014, members of Canada’s Parkinson’s community asked the federal government to enact legislation against genetic discrimination by employers and insurance companies, as well as extending Compassionate Care Benefits to caregivers who are providing support to people with a serious chronic or episodic medical condition. In addition, the National Advocacy Committee and other stakeholders consistently request increased investment in research and improved access to quality health care.

If you are interested in joining other Canadians to advocate for government action on the results of this publicly-funded study, send a letter today to your MP. Supporting information and tools, can be found online at Parkinson Society Canada’s Advocacy Centre at www.parkinson.ca.

Key findings of the study regarding Parkinson’s disease include the following:

• The number of Canadians over 40, living with Parkinson’s disease, will increase by 65 per cent, from 99,000 in 2016 to 163,700 by 2031.
• The number of Canadians over 65, living with Parkinson’s disease, will more than double to 148,800 by 2031.
• Parkinson’s has the third highest level of direct health care costs, after Alzheimer’s disease and other dementias (which are grouped as one condition in the study) and Epilepsy.
• People living with Parkinson’s disease have the highest use of prescription medication.
• Annual, out-of-pocket expenses for each person with Parkinson’s is $1,100 on average.
• The level of stress doubles when caring for an individual living with neurological conditions and is greater if the neurological condition is accompanied by cognitive impairment or behavioural issues, which affects many people with Parkinson’s.
• Forty per cent of respondents with Parkinson’s disease experience thinking and problem-solving limitations; and 50 per cent experience memory limitations.
• More than half of those who reported having Parkinson’s disease have fair or poor general health.
• The number of days in residential care is highest for those with Huntington’s, Alzheimer’s and other dementias, cerebral palsy and Parkinson’s disease.