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Volunteer Advocate
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An Update on ORKAMBI

On Monday, we shared with you an update on CADTH’s recommendation that Vertex’s drug ORKAMBI not be reimbursed. The response from the community has been overwhelming and we are pleased to see so many of you are eager to join the conversation and help us ensure Canadians with CF have access to the live-altering treatments they need to live long, healthy lives.

While this decision has been an unexpected setback, we want to make it clear this is not the end for ORKAMBI. Below you will find information on what’s next and resources for you to get involved.

Together, we can make our voices heard.

What’s next?

At present, Vertex plans to meet with Provincial Ministries of Health to discuss reimbursement of ORKAMBI. Advocates like you can contact and write to your provincial representative, Health Minister, the opposition health critics and/or other elected officials you think might have an interest in CF, to urge provincial coverage of ORKAMBI.

It’s important to note the CADTH Canadian Drug Expert Committee (CDEC) recommendations are non-binding to the provincial drug plans. Although another review for ORKAMBI will not take place at the Federal level, each province makes its own drug-listing decisions based on the CDEC recommendation in addition to other factors, including the plan’s mandate, jurisdictional priorities, and financial resources. Provinces are requested to share their drug listing decisions with CADTH.

How can I help?

Today we posted our position statement on our website, along with a letter template for you to personalize and use to send to CADTH, your MP/MPP and/or Health Minister. We encourage you to use these resources to reach out to the decision-makers in your province and make your voice heard.

Position statement:

Letter Template (Word):