On March 5, 2013, Parkinson Society Canada (PSC), as a member organization of Neurological Health Charities Canada (NHCC), participated in a lobby day on Parliament Hill. “The purpose of NHCC’s Hill day was to increase much-needed investment into neuroscience research, establish the framework for a national brain strategy, and ensure all Canadians are protected from genetic discrimination,” said Vanessa Foran, Vice President, Public Affairs and National Programs, Parkinson Society Canada.
In total the NHCC presented four recommendations to policy decision makers including Ministerial staff, Members of Parliament, and Senators in order to aid the more than 5.5 million families in Canada who are touched by a neurological condition on a daily basis.
Recommendation #1: Invest $3 million in NHCC over three years towards developing a pan-Canadian action plan for the brain
This funding would be used to develop a comprehensive framework to improve quality of life and care for Canadians affected by neurological conditions.
That framework would include:
- an inventory of all research, policies and program initiatives that impact families living with neurological conditions from the past three years.
- stakeholder engagement with health care workers, health professionals, researchers and policy makers
- synthesising information into a framework for an action plan with measurable outcomes
- evaluation plans
Recommendation #2: Establish a Centre of Excellence for Neurodegenerative Networks
Creating a Centre of Excellence for Neurodegenerative Networks will allow groups such as Parkinson Society Canada and other NHCC members to provide better advocacy and make greater strides in research discoveries for neurodegenerative diseases on a whole by building on collective knowledge.
With a larger public profile and greater financial support from the government the Centre of Excellence could equip researchers with enhanced networking capabilities and the ability to make advancements in treatments for neurological diseases.
Recommendation #3: Create a Strategy for Patient-Oriented Research (SPOR) focused on neurological conditions
Patient-oriented research networks bridge the gap between research evidence and health care practice by conducting clinical trials to ensure treatments and medications are safe for public use. SPOR Networks are a collaboration of patients, health professionals, decision makers, health researchers and their partners from across Canada.
The primary objective of SPOR Networks is to generate evidence and innovations that advance current practices while making policy changes that lead to measurable improvements in patient. The ultimate goal is to establish a SPOR that focus on neurological issues such as PD to complement existing research from labs.
Recommendation #4: Promote Genetic Fairness for Canadians
Canada is one of the few developed countries without legislation to prevent the use of genetic information for non-health and non-research purposes. All other G8 countries have some form of legislative protections, including the United States, which passed the Genetic Information Non-Discrimination Act (GINA) in 2008, banning health insurers and employers from using a person’s genetic information.
NEUROLOGICAL HEALTH CHARITIES CANADA (NHCC), chaired by Joyce Gordon, CEO of Parkinson Society Canada, is a collective of organizations that represent people with chronic, often progressive, neurological, disorders and injuries in Canada. NHCC’s role is to provide leadership, evaluating and advancing new opportunities for collaboration specific to advocacy, education and research projects, related to brain health.
Click this link to learn more about genetic discrimination in Canada.