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Volunteer Advocate


February 27, 2019


Provinces make CF drug accessible to children 6-17 years old on an exceptional, case-by-case basis 

TORONTO (February 27, 2019) – The governments of Saskatchewan, Alberta and Ontario have announced prescribing criteria for pediatric patients to qualify for public coverage of ORKAMBI on an exceptional, case-by-case basis. This announcement is the result of diligent advocacy work by Cystic Fibrosis Canada and the Canadian cystic fibrosis community. The decision comes three years after Health Canada approved the medication for use in Canada.

Cystic Fibrosis Canada is grateful for the leadership of Health ministers Reiter, Elliott and Hoffman on this file and for their collective agreement on these criteria. Case-by-case access for ORKAMBI will be considered for pediatric patients between 6-17 years old in Saskatchewan, Ontario and Alberta who have experienced at least a 20 percent relative decrease in ppFEV1 in the last six months sustained for at least six weeks despite appropriate treatment.

 “We are pleased that as a result of our strategic advocacy efforts, Health Ministers Reiter, Elliott and Hoffman have made ORKAMBI available to children in their province who meet the criteria,” said Kelly Grover, President and CEO, Cystic Fibrosis Canada. “This is an important step in the right direction and is a result of the hard work of our advocates from coast to coast. We are nonetheless disappointed that the criteria are not more inclusive. Cystic fibrosis is no longer a childhood disease, 61 percent of Canadians living with cystic fibrosis are adults.”

As of February 20, 2019, Canadian children living in Saskatchewan, Alberta and Ontario who meet the prescribing criteria will be able to access ORKAMBI through the public, government-funded drug programs. Cystic Fibrosis Canada is calling on all remaining provincial Health ministers to adopt these criteria at a minimum.  The governments involved established these criteria after considering a number of factors including advice from a panel of CF clinicians in the three provinces.

ORKAMBI is a potentially life changing drug that targets the underlying cause of cystic fibrosis in patients with two copies of the F508del mutation in the CFTR gene. In 2016, Health Canada approved ORKAMBI and Canadian CF specialists continue to prescribe it to patients and champion the benefits that include increased lung function, fewer hospitalizations, and a reduced rate of disease progression. 

In 2018, the Canadian Agency for Drugs and Technologies in Health (CADTH) recommended that the cost of cystic fibrosis (CF) drug ORKAMBI not be covered by provincial drug programs, citing a lack of clinical effectiveness and data limitations as the determining factors in its decision. This was in direct contrast to all other international drug review agencies that have evaluated ORKAMBI, including Health Canada, which has approved it for use. At a list price of $250,000 per year per patient this drug is out of reach for Canadians without support from government or private health plans.


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 $253 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.


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