Cystic Fibrosis Canada polls Ontario's political parties on their plan for funding rare disease drugs

TORONTO, June 3, 2014 /CNW/ - In advance of the Leaders' election debate, Cystic Fibrosis Canada asked the three major Ontario political parties where they stand in making expensive drugs for rare diseases like cystic fibrosis available to patients in the province.

"Elections are a good time for patient advocacy groups to be engaged in public policy discussions," said Ken Chan, Cystic Fibrosis Canada's Vice President of Advocacy, Research and Healthcare. "With recent advances being made in research, we expect to see new personalized medicines that treat a small number of patients become available in Canada. Affordable and equitable access to high priced drugs for rare diseases like cystic fibrosis is an important issue that requires leadership from our political leaders."

The Canadian Organization for Rare Disorders estimates that approximately 3 million Canadians have a rare disease. Personalized medicine allows healthcare to evolve from a one-size-fits-all approach toward a system of preventive and precision care that can lead to better health outcomes for patients.

Given the progress in personalized medicines, such as KALYDECO®  the life-changing drug for four percent of the Canadian cystic fibrosis patient population access to rare disease drugs has become a crucial issue for Canadian policy makers.

To read the responses from the Ontario Liberal Party, the Progressive Conservative Party of Ontario and the Ontario New Democratic Party, visit

Cystic Fibrosis Canada is a registered charitable organization and does not endorse any political party or candidate for office, or a policy position taken by the political parties.

Cystic Fibrosis
Cystic fibrosis is the most common fatal genetic disease affecting Canadian children and young adults. It is a multi-system disease that affects mainly the lungs and the digestive system. In the lungs, where the effects are most devastating, a build-up of thick mucus causes severe respiratory problems. Mucus and protein also build up in the digestive tract, making it difficult to digest and absorb nutrients from food. As improved therapies have helped to address the malnutrition issues, ultimately most deaths related to cystic fibrosis are due to lung disease. There is no cure.

Cystic Fibrosis Canada
Cystic Fibrosis Canada is one of the world's top three charitable organizations committed to finding a cure for cystic fibrosis and is an internationally-recognized leader in funding CF research, innovation, and clinical care. We invest more funding in life-saving CF research and care than any other non-governmental agency in Canada. Since 1960, Cystic Fibrosis Canada has invested more than $150 million in leading research and care, resulting in one of the world's highest survival rates for Canadians living with cystic fibrosis. For more information, visit

SOURCE: Cystic Fibrosis Canada

For further information: Andrea Smith, Associate, Public Relations and Advocacy Communications, Cystic Fibrosis Canada, Tel: 416-485-9149 ext. 291, Toll free: 1-800-378-2233 ext. 291, Email:


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