A Voice for Canadians Living with Neurological Conditions

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.

4 Responses to “A Voice for Canadians Living with Neurological Conditions”

  1. 1 Madeline Martin April 11, 2013 at 11:35 am

    Does Vibrating Chairs help Parkinson’s Patients ?

  2. 2 ahamed April 11, 2013 at 2:38 pm

    Things that Governments at Provincial and Federal level could do are:
    1. Recognize Parkinson’s as a Disability not when the person is immobile and becomes dependant on others eg. to do the buttons. Disablility sets in much early when the person has tremors, is forgetful, has stopped working and is disheartened plus many more life style and health issues.
    2. Recognize that medications for Parkinson’s is expensive and onerous on the patient and should provide full reimbursements or coverage. For example a Senior in Ontario is well looked after for prescription drugs whereas B.C is a different story. Only selected drugs are covered eg. Sinamet but not Mirapex not to mention monthly B.C. Medical payments and none or little prescription help. Why selective when both drugs are for the same condition? Majority of PD patients are over 60 and likely with pension incomes. Disparity among Provinces could be corrected even if Health were a Provincial matter.
    3. I agree with other issues put forward to the Government.

  3. 3 adamkai April 11, 2013 at 2:55 pm

    The Governments at Provincial and Federal level should:
    1. Recognize Parkinson’s as a Disability not when totally dependant and unable to the shirt button. The disability sets in much early when the person has tremors, is forgetful, clumsy, disheartened and down and other lifestyle and health issues.
    2. Recognize that PD medications are expensive and onerous on the person who is in most cases a senior. Ontario Government showed that compassion and care by covering prescription medications for seniors and not billing OHIP. Province of B.C is a different story . It covers Sinamet but not Mirapex for example. Both are for the same condition and are expensive ,not to mention Billing monthly for B.C. Medical. Very hard on patients who are seniors in most cases with limited income. Compassion and Care are missing here. Such disparities among provinces should be corrected.

    3 I agree with other issues raised withe Government.

  4. 4 Parkinson Society Canada April 15, 2013 at 2:24 pm

    Thank you for your comments. Parkinson Society Canada (PSC) recognizes that disability sets in early on in the progression of Parkinson’s and continues to work on educating politicians at every level of government on this fact. In conjunction with Neurological Health Charities Canada (NHCC) and Health Charities Coalition of Canada (HCCC), PSC is striving to spread awareness of Parkinson’s disease and other neurological conditions through a variety of advocacy activities as well through our recently developed Canadian Guidelines on Parkinson’s disease.

    We also recognize the importance and necessity of easy access to treatment and medication and are advocating to make this a reality for people with Parkinson’s. It a slow process however, and needs to be addressed province by province. PSC is doing everything we can at the federal level and we are working with our regional partners to accomplish this at the provincial level.

    Although there are very few new drugs coming to the Canadian market, we recently developed a Patient Evidence Submission for DUODOPA for the Ontario Public Drug Programs to help ensure this medication will be covered on Ontario’s provincial formulary. We are also currently conducting a survey on NEUPRO®. Our findings from the NEUPRO® survey will be used to inform our Patient Evidence Submission at the federal level to the Canadian Agency for Drugs and Technology in Health (CADTH) and will be used to aide in the development of public policy and program priorities for the future.

    Best wishes.

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All material related to Parkinson's disease contained in Parkinson Post is solely for the information of the reader. It should not be used for treatment purposes. Specific articles reflect the opinion of the writer and are not necessarily the opinion of PSC.

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