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Volunteer Advocate


Quebecers with cystic fibrosis denied access to medication that substantially improves their life
June 2, 2017

As Cystic Fibrosis Awareness Month comes to an end, Cystic Fibrosis Canada is extremely disappointed to learn that those living with cystic fibrosis (CF) in Québec will not have access to lumacaftor/ivacaftor (ORKAMBI) – a life-changing medication – through the list of medications reimbursed by the Régie d’assurance maladie du Québec (RAMQ), because of the recent recommendation issued by the Institut national d’excellence en santé et en services sociaux (INESSS).

“Québec is exceptional in the quality of care provided to CF patients.  But this INESSS recommendation is an enormous step backwards.  Quebecers who could benefit from the advantages of ORKAMBI™ will have a hard time getting access to this drug, which has the potential to substantially improve the quality and length of their life,” says Yannick Brouillette, Executive Director, Québec, for Cystic Fibrosis Canada. “While Cystic Fibrosis Canada has been fighting since 2005 to have Québec implement a newborn screening program for CF, access to drugs recognized for improving the quality of life of patients will now become another of our leading concerns.”

ORKAMBI is a new medication for people with CF aged 6 or older who have two copies of the F508del-CFTR mutation. ORKAMBI is presently accessible to eligible patients in the United States, France, Germany, Austria, Denmark, Ireland and Luxemburg. 

The drug was approved by Health Canada in January 2016. Clinical trials show that ORKAMBI can improve pulmonary function and reduce the number of pulmonary exacerbations that result in frequent hospitalizations and accelerate the progress of pulmonary disease. It has also been shown that the drug raises the body mass index (BMI), an indicator associated with longer survival. 

“As a result of the recommendation by INESSS, the Exceptional Patient program of the Québec’s health insurance plan (RAMQ) will be the only way for a patient to have access to ORKAMBI™   if it is not covered by private insurance, and this program is hard to access,” adds Dr. John Wallenburg, national scientific director at Cystic Fibrosis Canada. “Our priority at Cystic Fibrosis Canada is the health and wellbeing of our CF families.  This situation is entirely unfair and unjust.  We are pursuing our work with the government to make sure their voices are heard.”

The provinces, including Québec, have decided not to negotiate within the pCPA on behalf of their citizens living with CF who could benefit from the advantages of ORKAMBI.

Cystic fibrosis Canada calls on the provinces, including Québec, to negotiate with the pCPA on ORKAMBI™. Cystic fibrosis Canada made submissions on ORKAMBI™ to the Canadian Expert Drug Advisory Committee of CADTH, and all the provinces that have their own drug evaluation program, another supplementary review level.  We are asking all the provinces and territories to carefully consider the recommendations for clinical use by ORKAMBI formulated by the Cystic Fibrosis Canada’s CF Physician Panel on lumacaftor/ivacaftor and endorsed by 26 CF clinic directors across Canada.

About 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, most deaths related to cystic fibrosis are now due to lung disease. There is no cure.  In Canada on average, one baby in 3,500 suffers from cystic fibrosis while in Québec, the average is one baby in 2,500.

Cystic Fibrosis Canada

Cystic Fibrosis Canada is one of the three principal charitable organizations committed to finding a cure for cystic fibrosis and is an internationally recognized leader in funding research, innovation and clinical care. Cystic Fibrosis Canada has invested 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 $235 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 or an interview, please contact:

Phil Norris, Senior Manager, Corporate Communications
Cystic Fibrosis Canada
Tel: 416-485-9149 ext. 291
Tel: 1-800-378-2233 ext. 291

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