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Volunteer Advocate

ORKAMBITM

What is orkambi?

ORKAMBI™ is a drug developed to treat Cystic Fibrosis. It was approved for use in Canada in January 2016. It significantly improves lung function, reduces the number of lung flare-ups, and improves the nutritional status of some people who have two copies of the most common mutation of cystic fibrosis: F508del.

Latest newS about orkambi

On Thursday, October 4, 2018, the Canadian Agency for Drugs and Technologies in Health (CADTH) recommended that the cystic fibrosis (CF) drug ORKAMBI not be reimbursed by federal, provincial and territorial drug programs. Quebec has a separate review body – The National Institute of Excellence in Health and Social Services (INESSS), and on Thursday, October 18, 2018, INESSS also announced it would not recommend ORKAMBI for public coverage, the recommendation was endorsed by Quebec Health Minister, Danielle McCann. As well, the British Columbia Pharmacare program is undertaking its own review, other provinces may also choose to.

Cystic Fibrosis Canada completely disagrees with both the CADTH and INESSS recommendations and cautions that they could have deadly consequences for some Canadians with CF for years to come. Read our latest news release on the CADTH recommendation

Frequently Asked Questions 

CADTH is an independent, not-for-profit organization responsible for providing informed decisions about the optimal use of drugs and medical devices in Canada. Through its Common Drug Review (CDR), CADTH provides recommendations to federal, provincial and territorial governments on whether or not to cover the cost of medications through their public plans.

The Institut national d'excellence en santé et en services sociaux (INESSS) is an organization composed of health and social service professionals, researchers, clinicians and managers, all driven by the pursuit of clinical excellence on behalf of the Québec population. INESSS’s mission is to assess the clinical advantages and the costs of the technologies, medications and interventions used in health care and personal social services. It issues recommendations concerning their adoption, use and coverage by the public plan, and develops guides to clinical practice in order to ensure their optimal use.

That depends on where you live. CADTH recommendations are relevant for all Canadian provinces, except Quebec, which has its own review board, INESSS. Some provinces, like B.C., also have province specific reviews; unlike Quebec, these provinces also rely on the CADTH decision to inform their reimbursement decisions. That said, provinces do not have to adhere to the recommendations, which are non-binding, and can decide to cover drugs individually.

Orkambi costs approximately $250,000.00 per patient, per year. Without support from private or public drug plans, it is inaccessible.

CADTH and INESSS have both recommended that government drug plans do not cover the cost Orkambi.

It is possible that access through public plans may not happen at all. Half of the CF population in Canada could potentially benefit from Orkambi and without coverage from government plans, the drug is unattainable. 

There is a small chance that governments would provide on a case-by-case basis for those who are very ill, as is the case in Quebec. This is unlikely given the cost of the drug and the recommendations that state there is no, or limited, clinical benefit. Some Canadians with CF may also apply for compassionate care from the manufacturer.

Write to your Health Minister and elected provincial legislature representative today, and tell them to cover Orkambi anyway; that the recommendation is non-binding and they can do right by their citizens with CF by negotiating a fair price to publicly cover this medication. See our Take Action Now page for more details.

As this is a non-binding recommendation (meaning the provincial drug plans do not have to adhere to the recommendation), Cystic Fibrosis Canada urges both the manufacturer and the provincial governments to expedite negotiations for a fair price and do the right thing for the 2,100 Canadians whose lives could potentially be changed by accessing this drug.