Join us on Saturday June 29, 2019 at the Yarmouth Dooleys for the Annual Cystic Fibrosis Canada Fundraiser!
Tickets can be purchased at the door for $15.
The day will feature a musical performance by Cameron Nickerson, Craig Goodwin, Sounds of Colour and Shannon Malone and Curt Leblanc.
Cystic Fibrosis Canada Condemns CADTH’s Decision to Ignore Evidence of the Benefits of ORKAMBI
TORONTO (October 4 , 2018) – Today, the Canadian Agency for Drugs and Technologies in Health (CADTH) has recommended that the cost of cystic fibrosis (CF) drug ORKAMBI not be covered by provincial drug programs. Cystic Fibrosis Canada wholeheartedly disagrees with the decision and cautions that this could have deadly consequences for some Canadians with CF for years to come. 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.
This is the second review of ORKAMBI from CADTH that has had a negative recommendation, despite clinical evidence that demonstrates that the drug works well for more than a quarter of the target population. Similar to the first review, this recommendation also come long after the 180 day review time for new therapies that CADTH strives for. The Canadian Drug Expert Committee (CDEC) cites a lack of clinical effectiveness and data limitations as the determining factor in its decision. This is in direct contrast to all other international drug review agencies that have evaluated ORKAMBI, including Health Canada, which has approved it for use.
“This decision is devastating for some Canadians living with CF. We are shocked that CADTH would ignore the clear evidence of clinical benefit of this disease modifying medication and the real-world testimonies of patients who have witnessed its positive impacts firsthand,” said Dr. John Wallenburg, Chief Scientific Officer at Cystic Fibrosis Canada. “As this is a non-binding recommendation, we continue to urge both the manufacturer and the provincial governments to negotiate a fair price and do the right thing for the 2,100 Canadians whose lives could potentially be changed by accessing this drug”.
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. However, at a list price of $250,000 a year per patient this drug is out of reach for Canadians without support from government or private health plans.
“It is extremely disappointing to hear about the negative recommendation by CADTH for ORKAMBI coverage,” said Janae Dawson, mother of a child with cystic fibrosis. “Each day that cystic fibrosis patients are unable to access this life changing medication, they are experiencing permanent and progressive lung damage. It is heartbreaking and frustrating to know that my son Alex’s lung function will likely continue to decline without ORKAMBI being made accessible.”
It is Cystic Fibrosis Canada’s mission to ensure that all Canadians living with CF have access to the potentially life changing treatments they need to live a long and healthy life. Cystic Fibrosis Canada will continue to advocate on behalf of its community for the manufacturer to re-evaluate the price of ORKAMBI and for the provincial governments to make evidenced-based decisions on covering the drug.
Take Action Now
The CADTH recommendation is non-binding, so our governments may do what they want with it. This is why we must take action now. Tell your health minister to grant access to Orkambi to improve the lives of those living with CF. See our Take Action Now page for more details.
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 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 $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.
For more information, contact:
Nicole Young, Director, Corporate Communications
Cystic Fibrosis Canada
Tel: 416-485-9149 ext. 235
Tel: 1-800-378-2233 ext. 235
Jennifer Stranges, Associate, Corporate Communications
Cystic Fibrosis Canada
Tel: 416-485-9149 ext. 290
Tel: 1-800-378-2233 ext. 290
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