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Volunteer Advocate


BC residents with cystic fibrosis will be denied life-changing drug through Pharmacare
March 22, 2017

March 22, 2017 (Burnaby, BC) ― Cystic Fibrosis Canada is extremely disappointed that people with cystic fibrosis (CF) in British Columbia will not be able to access lumacaftor/ivacaftor (ORKAMBI™) - a potentially life-changing drug - through the BC Pharmacare program, due to a recent decision to “close the books” on ORKAMBI™.

“British Columbia has long been a leader in CF care,” said Norma Beauchamp, President and CEO of Cystic Fibrosis Canada. “With this decision, it seems as though times are changing. BC residents with CF who could benefit from ORKAMBI™ will be hard pressed to get access to a medicine that has the potential to improve the quality and length of their lives.”

ORKAMBI™ is a new medication indicated for people with cystic fibrosis (CF) ages 12 and older who have two copies of the F508del-CFTR mutation. It was approved by Health Canada in January 2016. Clinical trials indicate that ORKAMBI™ can improve lung function and reduce the number of pulmonary exacerbations, which can lead to frequent hospitalizations and accelerated lung disease. It has also been shown to increase Body Mass Index (BMI), which is linked to increased survival.

Although Health Canada approved the drug for efficacy, safety and quality, the Canadian Agency for Drugs and Technologies in Health (CADTH) Canadian Drug Expert Committee (CDEC) gave the drug a negative recommendation in October 2016, then reconsidered ORKAMBI™ in February 2017, during which it determined that new clinical information in the support of efficacy of the drug must be from a randomized controlled trial. CDEC will not accept any other data, even real world data collected after people have been on the drug for some time. Cystic fibrosis is a rare disease; as such, meeting the CDEC data requirements is a challenge.

CADTH is the independent non-profit organization established by the federal, provincial and territorial governments to evaluate and make recommendations regarding the optimal use of drugs and health technologies in our public healthcare system. CADTH’s scope of work includes evaluating drugs and making recommendations as to whether or not they should be covered by the public drug plans. CADTH Common Drug Review recommendations are non-binding on provinces.

 “The system is broken and there appears to be no desire to fix it,” said Chris Black, BC Provincial Advocate for Cystic Fibrosis Canada. “Increasingly we are finding that what used to be considered a recommendation from CADTH is now being taken as a directive by provinces. As citizens, we are losing the ability to work with our own provincial government to determine how Pharmacare should work for us.”

Additional complexity has been added to Canada’s already onerous drug approval and public reimbursement system with the addition of the pan-Canadian Pharmaceutical Alliance (pCPA). The pCPA was established in 2010 by the Council of Federation for the purpose of conducting joint public drug plan negotiations for brand drugs in Canada. The goal of these negotiations was to achieve “greater value for publicly funded drug programs and patients”. With the CADTH decision being non-binding, it is through this body that provinces, including BC, decided to not negotiate on behalf of their citizens with CF who could benefit from ORKAMBI™.

Cystic Fibrosis Canada is calling on provinces, including BC, to champion negotiations for ORKAMBI™ with pCPA. CF Canada made submissions on ORKAMBI™ to CADTH’s CDEC and to all provinces that have their own drug review processes, yet another layer of review. We are calling on all provinces and territories to carefully consider the recommendations for the clinical use of ORKAMBI™ that were developed by Cystic Fibrosis Canada’s CF Physician Panel on lumacaftor/ivacaftor endorsed by 26 CF Clinic Directors across Canada.

“CF is a complex disease. In this day and age we need to treat each person with CF, a life-shortening disease, as individuals. This is not a patient-centred decision. We feel strongly that the advice and opinions of the CF experts who lead Canada’s highly specialized CF clinics need to be carefully considered by the decision makers of Pharmacare,” said Beauchamp. “To date, we don’t feel those voices have been heard. We want to work with decision makers to find a solution that would benefit patients who need ORAKMBI™ the most, to ensure that the system is working in the best interest of the patient.”

“ORKAMBI™ has changed my life,” said Liam Simpson, a 16 year old who lives in Vancouver and is accessing the drug through private insurance. “Before ORKAMBI™ I had a number of annual pulmonary exacerbations and was in the hospital for about three months a year. Since starting ORKAMBI™ I have been hospitalization free. I worry that one day I might not be able to access ORKAMBI™ if my private insurance decides to not pay for it. Without Pharmacare, I have no safety net, and those without private insurance have nothing.”


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 $235 million in leading research, care and advocacy, resulting in one of the world’s highest survival rates for Canadians living with cystic fibrosis. Source:


For more information and to schedule interviews please contact:

Nicole Young, Senior Manager 

Corporate Communications and Thought Leadership  

1-800-378-2233 ext. 291


Kim Steele, Manager

Government Relations and Advocacy

1-800-378-2233 ext. 297

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