Advocacy in Action
Sprague Plato shares his story at a Parliamentary breakfast in Ottawa, May 4, 2017
We are here for you.
Parkinson Canada provides services and education to individuals and the health care professionals that treat them. Operating since 1965, the organization advocates on issues that concern the Parkinson’s community in Canada. We fund innovative research for better treatments and a cure.
We facilitate opportunities for caring community members like you to get involved:
Recent successful initiatives include: genetic fairness, income security, caregiver support, access to therapies and brain health.
Read more below, about our collective impact.
Parkinson Canada, along with more than 100 dedicated volunteer Ambassadors and committee members, shares your concerns and has taken these to elected officials and public servants across the country. Like you, they want to improve your access to drugs, clarify your options, protect your rights and improve services to you and your family.
Together, with one voice, we are making a difference. Here’s a quick rundown of the advances we’ve all achieved in the last few months, advocating on your behalf about issues that matter to you and your loved ones.
May 4, 2017 - Coordinating Parkinson’s research across Canada. Parkinson Canada representatives and Ambassadors met with MPs and federal public servants during a “Hill Day.” Our discussions included our request for government support for a Canadian Parkinson Network (CPN). CPN will bring together Canada’s best in Parkinson’s research and will give them a platform to share information and make new connections.
The Network will better coordinate world-class Parkinson’s research happening across Canada and would create transformational change for people with Parkinson’s and their caregivers to live well in their communities through effective use of health, social and economic resources.
As a leading member of Neurological Health Charities Canada (NHCC), Parkinson Canada also urged the federal government to support the NHCC’s call for a Canadian Action Plan for the Brain.
For more information about Parkinson Canada’s recent proposals to the federal government, download this summary document (PDF).
April 2017 - A dementia strategy and improved caregiver support in Ontario. The Ontario government announced two major investments with impact for Ontarians living with Parkinson’s and those who care for them: The latest Ontario budget includes $100 million over three years for a provincial dementia strategy and the government announced $20 million for caregiver respite services, caregiver education and training and a new, streamlined Ontario Caregiver Tax Credit. (You can read the Ontario government’s news release here.)
The development of the dementia strategy will be guided by the Ontario government discussion paper released in September 2016. This discussion paper was based on consultations that Parkinson Canada engaged in every step of the way. In fact, Parkinson’s disease is explicitly described in the discussion paper: https://files.ontario.ca/developing_ontarios_dementia_strategy_-_a_discussion_paper_2016-09-21.pdf. We are also pleased that the strategy includes the following language: “Alzheimer’s or other dementias,” and “Ontarians with a physical or cognitive condition, injury or chronic life-limiting illness.”
Both initiatives were included in the the Ontario Caregiver Coalition (OCC) submission and presentation to the Ontario Standing Committee on Finance during the pre-budget consultations in January. Parkinson Canada is a leading member of the OCC and, along with the Alzheimer Society of Ontario, wrote the OCC’s budget request. Parkinson Canada and a representative from the Alzheimer Society of Ontario, on behalf of the OCC, presented the request.
April 11, 2017. Advocating for improved care. Parkinson Canada Ambassadors and delegates hosted a very successful Advocacy Day at Queen’s Park, Ontario’s Legislative Assembly. Almost 50 guests attended the breakfast presentation. Along with additional meetings, Parkinson Canada representatives connected directly with 40 MPPs in total or nearly 40 per cent of all MPPs.
Read more about our Plan for Parkinson’s in Ontario.
March 2017- Fighting for your right to genetic fairness. Parkinson Canada and its Ambassador Network were elated when Bill S 201, an act to prohibit and prevent genetic discrimination, was passed by the House of Commons. It has since also passed the Senate and is currently awaiting Royal Assent.
The excitement, however, has been dampened as the Justice Minister and Attorney General of Canada Jody Wilson-Raybould maintains the bill intrudes on provincial jurisdiction to regulate the insurance industry, which has fiercely opposed the bill. Only three provinces — Quebec, British Columbia and Manitoba — have expressed reservations about the bill, despite a letter from the federal justice minister inviting other provinces and territories to register their objections.
The legislation will prohibit any person from requiring an individual to undergo a genetic test or disclose the results of a genetic test as a condition of providing goods or services to, entering into or continuing a contract or agreement with, or offering specific conditions in a contract or agreement with, the individual. Exceptions are provided for health care practitioners and researchers. The enactment provides individuals with other protections related to genetic testing and test results.
Wilson-Raybould said the government will wait until the bill clears a final hurdle in the Senate before launching a reference to the Supreme Court for advice on the constitutionality of the genetic fairness act — a process that could leave the legislation in limbo for two or more years.
Parkinson Canada will continue to work closely with the Canadian Coalition for Genetic Fairness and our government champions until all Canadians living with Parkinson’s are ensured of genetic fairness.
February 14, 2017 - Improving your access to medication. The BC government approved coverage of Duodopa® for people with advanced Parkinson’s, following a successful letter-writing campaign asking the government for public funding of Duodopa. While inspired by this victory, other parts of Canada still do not cover Duodopa. You can join the current campaign for coverage of Duodopa in Nova Scotia. There are encouraging signs that coverage of Duodopa will be coming to Nova Scotia.
January and March 2017 – Two new positions statements released. In response to the increasing demand for clarity and information from the Parkinson Community in Canada, the Parkinson Canada Board of Directors approved two new position statements this year addressing federal legislation, both new and pending.
Marijuana (also referred to as cannabis), is legally accessible in Canada for medical purposes. To date, it has not been conclusively demonstrated by science-based evaluation that marijuana can directly benefit people with Parkinson’s disease. There is a need for larger, controlled studies to better understand the efficacy of medical use of marijuana for Parkinson’s. You can read our position statement on medical marijuana and Parkinson’s and background information here.
On June 17, 2016, Bill C-14 on Medical Assistance in Dying became law in Canada. In response to a demand for information and clarity from the Parkinson’s community across Canada, including: people living with Parkinson’s, their families and the people who provide care for them; Parkinson Canada developed a position statement on the new, federal Medical Assistance in Dying legislation. Background information is also available on the same website page as the position statement.
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