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Cystic Fibrosis Canada asks Canadians to do whatever it takes
October 2, 2019

Cystic Fibrosis Canada asks Canadians to do whatever it takes
Calls on candidates to commit to developing a rare disease strategy to improve access to drugs

TORONTO (October 2, 2019) – Cystic Fibrosis Canada is asking Canadians and candidates to do whatever it takes to improve access to potentially life-changing medicines for rare diseases. Through an online petition during the 2019 federal election season, Cystic Fibrosis Canada is calling on candidates to prioritize the creation of a rare disease strategy to improve access to drugs for rare diseases.

Canada is one of the few developed countries without a rare disease strategy. As a result, there has been limited and delayed access to some rare disease drugs. Children and adults with CF are being prescribed these life-sustaining medications but are unable to f them due to the lack of availability through publicly funded drug programs. These two medications are examples of how Canada’s drug review and reimbursement systems have failed Canadians living with CF.

The drug system in Canada is broken and Canadians with rare diseases like cystic fibrosis are unable to access the medications they need,” said Kim Steele, Director of Government and Community Relations at Cystic Fibrosis Canada. “We are calling on candidates to commit to supporting the development of a rare disease strategy in which Canadian provinces and territories work with the federal government to improve access. This is a nonpartisan issue, equitable access to drugs should be important to all Canadians.”

This election, Canadian political leaders have the opportunity to do the right thing by prioritizing a rare disease strategy. Canadians with rare diseases like cystic fibrosis need better access now; they do not have time to wait. In 2017, half of the Canadians who died from cystic fibrosis were under the age of 33.

“Living in Canada and having access to medical care is a privilege. I’m grateful for the medications I’ve been able to access so far, and the incredible care I receive from my specialized CF team,” said Kim Wood who lives with cystic fibrosis. “But in my experience, people with rare diseases are treated differently in terms of healthcare access. Canadians with rare diseases like cystic fibrosis are often unable to access the medications they need. Still, we will do whatever it takes to take care of our health.”

Cystic Fibrosis Canada is asking Canadians to do whatever it takes to help people living with cystic fibrosis access the potentially life changing medications they need. Canadians can help by signing the petition at whateverittakesforcf.ca. This October, tell candidates to fix the broken system and make drugs accessible to all Canadians living with rare diseases.

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Cystic fibrosis
Cystic fibrosis is the most common fatal genetic disease affecting Canadian children and young adults. It is a multi-system progressive 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 leads to progressive loss of respiratory function. Mucus also builds 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 failure. There is no cure.

 Cystic Fibrosis Canada
Cystic Fibrosis Canada is one of the world’s leading 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 $261 million in leading research, care and advocacy, resulting in one of the world’s highest survival rates for Canadians living with cystic fibrosis. For more information, visit cysticfibrosis.ca.

For more information, contact:
Kenya Francis, Associate, Corporate Communications
Cystic Fibrosis Canada
Tel: 416-485-9149 ext. 203
Tel: 1-800-378-2233 ext. 203
Email: kfrancis@cysticfibrosis.ca 

Nicole Young, Director, Corporate Communications
Cystic Fibrosis Canada
Tel: 416-485-9149 ext. 235
Tel: 1-800-378-2233 ext. 235
Email: nyoung@cysticfibrosis.ca 


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