Tackling tough issues to improve your life with Parkinson’s

Dr. Oury Monchi speaks to MP Joel Lightbound during a  Parliamentary breakfast in Ottawa on May 4, 2017.
Dr. Oury Monchi speaks to MP Joel Lightbound during a Parliamentary breakfast in Ottawa on May 4, 2017.

Are you uncertain about whether medical marijuana may help you? If you undergo genetic testing, do you have to share the results with your insurer? Will your children? And what about access to a new treatment suggested by your specialist; is the cost covered in your province?

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,” says Jacquie Micallef, Senior Manager, Public Affairs and Partnerships.

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.

Improving your access to medication

On February 14, 2017, 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,” says Micallef.

Clarifying your options

In response to the increasing demand for clarity and information from the Parkinson Community in Canada, the Parkinson Canada Board of Directors recently 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.

Parkinson Canada’s position on medical assistance in dying is guided by Canadian federal legislation; our vision, mission and values; and consultation with many sources including, most importantly, the Parkinson’s community.

Sprague Plato shares his story at a Parliamentary breakfast in Ottawa on May 4, 2017.
Sprague Plato shares his story at a Parliamentary breakfast in Ottawa on May 4, 2017.

A dementia strategy and improved caregiver support in Ontario

Last month 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: Click here. 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.

A special thanks to Sprague Plato, John Parkhurst, Chris Hudson, Sandie Jones, Robert TerSteege and Dr. Susan Fox for participating as working group members on the development of the dementia strategy. We would also like to extend a thanks to the many volunteers who participated in roundtables across the province, as well as Ambassadors and community members who participated in the letter writing and social media campaigns demanding a  dementia strategy in 2017 (sponsored by Alzheimer Society of Ontario and promoted through Parkinson Canada’s networks).

Fighting for your right to genetic fairness

Parkinson Canada and its Ambassador Network were elated this past March, 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.

Advocating for improved care

On World Parkinson Day, April 11, 2017, 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.

In Ontario, Parkinson Canada is urging the government to do the following:

  1. Fund targeted physiotherapy and various forms of tailored exercise programs.
  2. Implement the “Get it on Time” program in hospitals and long-term care homes.
  3. Stop the inappropriate use of antipsychotic medications for people with Parkinson’s in long-term care homes.
  4. Enhance health care professionals’ understanding of Parkinson’s disease by promoting the use of the Canadian Guidelines on Parkinson’s Disease (due to be updated this fall.)

Read more about our Plan for Parkinson’s in Ontario here.

Coordinating Parkinson’s research across Canada

Earlier this month 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 include:

  • a patient registry with comprehensive clinical information;
  • a database with information from diagnostic (imaging tests, MRI, PET scans), anatomical (neuroimaging, sleep, behavioural and neuropsychological information) and functional measurements;
  • a biobank, i.e. patient biomaterials such as blood samples and DNA for genetic studies.

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.

The Action Plan includes a focus on:

  • Equitable and affordable access to drug treatments;
  • Caregivers who are supported in their role through job protection and income enhancements;
  • Improved palliative and end-of-life care services;
  • Workplace supports and income security;
  • Stigma and barriers to inclusivity ensuring they are addressed through public awareness;
  • Increased funding in neuroscience research to better understand cause, prevention, management and cures.

For more information about Parkinson Canada’s recent proposals to the federal government, download this summary document (PDF).

Parkinson Canada, along with more than 100 dedicated volunteer Ambassadors and committee members, has been taking your concerns to elected officials and public servants across the country to improve your life with Parkinson’s. Many of those involved have Parkinson’s themselves and find that advocating for the Parkinson community helps improve their quality of life.

Consider joining the movement to live well with Parkinson’s and find out how you can become an Ambassador, participate in a letter-writing campaign, or make a donation to help us continue this important work.

Together, with one voice, we are making a difference!