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Federal government commits to national strategy to improve access to rare disease drugs

Toronto, Ontario – Muscular Dystrophy Canada commends the Government of Canada for committing $35 million, in its 2019 budget, to develop a Canadian Drug Agency to oversee the development of a new national formulary of prescribed drugs and a strategy to provide support for Canadians with rare diseases.

A national strategy to alleviate the high-cost of drugs for rare diseases will ensure more Canadians are able to access effective, life-changing treatments.

“This is an important first-step towards ensuring individuals diagnosed with a rare disease, such as a neuromuscular disorder, are able to access treatment without cost as a barrier,” said Barbara Stead-Coyle, CEO, Muscular Dystrophy Canada. “We call on all Federal parties to focus on this very real issue facing Canadians.”

According to the Health Charities Coalition of Canada (HCCC), recent studies show that while a majority of Canadians have access to prescription medicines under the current mix of private and public insurance, approximately 22% of prescription drug costs are still paid for out of pocket by patients.

Stead-Coyle added, “MDC has always been committed to ensuring patients can access treatments at an affordable price, and we will continue to advocate on behalf of patients until that’s a reality.”

Muscular Dystrophy Canada, along with its partners in HCCC, looks forward to integrating the perspectives of patients and the health charity sector as we work with the Federal Government to develop and implement these important initiatives.



Muscular Dystrophy Canada’s mission is to enhance the lives of those impacted with neuromuscular disorders by continually working to provide ongoing support and resources while relentlessly searching for a cure through well-funded research. To learn more about Muscular Dystrophy Canada, please visit or call our toll-free number at 1-800-567-2873.


Heather Rice
Muscular Dystrophy Canada


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Babies with SMA to be covered in BC for Life Saving Drug

Different types of Pills

Muscular Dystrophy Canada congratulates the BC government for their leadership in providing this important treatment to children impacted with SMA Type1. We continue to work tirelessly with governments and partners to ensure more Canadians with a neuromuscular disorder have access to the latest treatments.

We were please to participate in the first review of Spinraza with CADTH and INESSS through our patient submission and we have completed a second submission encouraging them to revisit the use of Spinraza in other types of SMA.

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Learn more about Spinraza

Spinzara to be Proviced for SMA Type 1 Patients
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Fighting for a National Assistance Program for Canadians with Disabilities

The petition has been tabled by the House of Commons. To review the discussion, please visit here.


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tumblr_naubxpi8eo1tubinno1_1280I first started my petition on back in November 2015 after writing a letter to Prime Minister Trudeau asking him to implement a National Assistance Program for Canadians with Disabilities. The purpose of the petition is to implement legislation that will provide all Canadians living with a disability with the equipment and services they require to live functional lives. This directly complements the impending Canadians with Disabilities Act (CDA)- which aims to create an accessible and inclusive Canada – as such a program would help to fulfill that purpose by providing the supports necessary to allow all Canadians living with a disability to contribute to society regardless of ability.


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