Patient Survey to Inform Trikafta Drug Review

JANUARY 19, 2021

As the life changing cystic fibrosis medicine, Trikafta, continues to rapidly move through Canada’s drug review and reimbursement system, Cystic Fibrosis Canada is conducting a survey to provide an opportunity for cystic fibrosis patients and families to have their voices included in the review process.

Regulatory bodies, including The Canadian Agency for Drugs and Technologies in Health (CADTH), The Institut national d’excellence en santé et services sociaux (INESSS) and PharmaCare for British Columbia Residents (BC PharmaCare), are all seeking input from patient groups representing patient and caregiver voices. These agencies each conduct a cost effectiveness review of new medications. The recommendations from these reviews form the basis of decisions by provincial governments and, increasingly, private insurers, on whether or not to list a drug for reimbursement.

Cystic Fibrosis Canada will be compiling survey responses to support our submissions to these regulatory bodies to ensure that patient voices are heard as they conduct their reviews of Trikafta. Should you be interested in viewing the submissions, our final submission to CADTH will be available on our website on February 12, 2021 and the INESSS submission will be available on February 24th, 2021.

Who should fill out the survey?

  • We’re looking to hear from you if you are:
  • an adult living with CF who has, or has had, access to Trikafta;
  • an adult living with CF who may be eligible for Trikafta, but who has not yet accessed the medication;
  • a family member or caregiver of an adult living with CF who may be eligible for Trikafta; or
  • a caregiver of a child/children 17 and under living with CF who may be eligible for Trikafta.

Take the survey now

The survey should take 10-20 minutes to complete and will close on January 26, 2021. All responses you provide will be kept anonymous, except where otherwise noted.

If you have questions about the survey or have other questions we might be able to help with, please contact us today. We would be happy to assist you.

Do you live in Quebec? In addition to the CF Canada survey, you can also share your voice directly to INESSS. INESSS accepts individual submissions from people living with CF, their caregivers and family. We highly encourage you to participate in both. If you want to send an individual submission to INESSS, fill out this form. The completed questionnaire can be emailed to or mailed to the following address:

Institut national d’excellence en santé et en services sociaux (INESSS)
Direction du médicament
2535, boulevard Laurier, 5e étage
Québec (Québec) G1V 4M3