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Volunteer Advocate

ORKAMBI®

WHAT IS ORKAMBI?

ORKAMBI® is a disease modifying drug developed to treat cystic fibrosis. It can improve lung function, reduce the number of pulmonary exacerbations, and can improve the nutritional status of some people who have two copies of the most common mutation of cystic fibrosis: F508del. Orkambi treats up to 50% of Canadians living with cystic fibrosis. 

IS ORKAMBI AVAILABLE IN CANADA?

Orkambi was approved for use in Canada in January 2016.

However, the Canadian Agency for Drugs and Technologies in Health (CADTH) recommended that Orkambi should not be reimbursed by federal, provincial and territorial drug programs. Quebec’s separate review body – The National Institute of Excellence in Health and Social Services (INESSS), also did not recommend Orkambi for public coverage.

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

Despite the negative recommendation by CADTH and INESSS, the governments of Saskatchewan, Alberta and Ontario do have prescribing criteria for pediatric patients to qualify for public coverage of Orkambi. Details of the criteria include:

Sadly the criteria are so restrictive that, to our knowledge, only one patient has qualified. 

In Quebec, Orkambi is available through the province's patient d'exception program, however the access criteria is not publicly accessible. 

NEGOTIATIONS WITH THE MANUFACTURER FOR ORKAMBI

On June 12, 2020 the pan-Canadian Pharmaceutical Alliance (pCPA) agreed to enter negotiations with Vertex Pharmaceuticals on Orkambi and Kalydeco. Cystic Fibrosis Canada is calling on governments and Vertex to get through these negotiations quickly and to work together to fast-track access to Trikafta, however significant time has already passed and we are yet to see real progress. For more information see our Q&A. 

What can I do to advocate for access to Orkambi?   

Make your voice heard. Meet with your provincial elected officials. Demand that the federal government halt the changes to the PMPRB. We need a commitment from provincial governments to expedite price negotiations and the immediate list of Trikafta after drug reviews are completed. Join our National Advocacy Network. Share your access stories on social media using #cfcantwait, and tag your elected officials.

Write to and meet with your provincial and federal elected officials. CF Canada’s advocacy toolkit will help you have these conversations.

Visit our ‘How to Take Action’ webpage for ways to support our current advocacy work. 

Sign up for ‘The Advocacy Brief’ to get advocacy updates related to access to modulators delivered straight to your inbox.  


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. Provinces can work together to lower this price through negotiations with the manufacturer. 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 access 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.

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.

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.

 

 

INTERESTED IN ADVOCATING FOR BETTER ACCESS TO ORKAMBI?

Contact our advocacy team at advocacy@cysticfibrosis.ca to see how you can help. Or check out the toolkit below to help your advocacy efforts.

Orkambi advocates toolkit: