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Volunteer Advocate

News

Quebecers with cystic fibrosis are suffering because they can’t get the medication they need
April 23, 2018

Cystic Fibrosis Canada (Quebec) calls on government to help protect the health of people living with this fatal disease.

 

April 23, 2018 (Montreal, QC) – Cystic Fibrosis Canada is urging the Quebec government to take action to protect the health of Quebecers living with cystic fibrosis by granting them access to the life-changing medication Orkambi.  

Orkambi is a breakthrough medication that was approved by Health Canada over two years ago, and is being prescribed by doctors because it works. It can drastically improve the quality of life for people with cystic fibrosis, allowing them to live longer, healthier lives.

Orkambi is not covered by the Régie de l'assurance maladie du Québec, leaving those without private insurance no way of getting this costly medication unless they are eligible under the “patient d’exception” program, which is difficult to access.     

“We need to trust doctors and clinicians to know what’s best for their patients, not criteria developed by the government,” says Yannick Brouillette, Executive Director, Cystic Fibrosis Canada, Quebec. “Time is precious for Quebecers living with cystic fibrosis and access to Orkambi is not only crucial, it’s their right.”  

“Quebec is the only province that grants any type of access to Orkambi for people living with cystic fibrosis. However, that access is extremely limited and Quebecers who could benefit from this medication are suffering as a result,” said Dr. John Wallenburg, Chief Scientific Officer, Cystic Fibrosis Canada. “We are asking that Quebec go one step further and make history by providing this medication to the cystic fibrosis community under its provincial healthcare plan.”

United for Better Access to Medication

The Quebec division of Cystic Fibrosis Canada is working to bring attention to this serious issue through an awareness campaign aimed at sharing the stories of individuals who have been impacted by Orkambi, and encouraging all Quebecers to sign a petition at unitedforcf.ca showing that they support those in our community living with this devastating disease. 

 

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 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 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 $244 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, please contact:

Alexa Fauteux  
Cystic Fibrosis Canada, Quebec

afauteux@fkq.ca

514-240-0470


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