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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.

One year later, the pCPA announced that they have agreed on a negotiated price for both drugs, for all Health Canada approved mutations. Although Orkambi and Kalydeco were held up in negotiations for quite some time, this is a step in the right direction for the CF community. The next step is for all the provinces in Canada to immediately fund Orkambi and Kalydeco, in their provincial drug plans. For more information see our Q&A.

Visit our ‘How to Take Action’ webpage for ways to support our current advocacy work. You can also sign up for ‘The Advocacy Brief' to get advocacy updates related to access to modulators, like Orkambi, delivered straight to your inbox.