Update: July 7, 2022:

Following Health Canada’s approval of ALBRIOZA (AMX0035) under a Notice of Compliance with Conditions (NOC/c), CADTH posted reimbursement recommendations for ALBRIOZA (AMX0035) in late June. ALS Canada provided feedback on the recommendations, bringing forward the perspectives of the ALS community to help ensure alignment with the realities of the diagnosis and treatment of ALS. You can read our submission here.

Update: December 22, 2021:

Wow! More than 600 of you responded to this call for input, making for a CADTH patient input submission that reflects diversity of perspectives and experiences from across the country (and beyond!). You can read our submission here, and an abridged version of it will be posted on CADTH’s website.

November 10, 2021

Are you, or someone you love, living with ALS? Or are you a caregiver or family member who has lost someone to ALS?  Then we want to hear from you!

The Canadian Agency for Drugs and Technologies in Health (CADTH) has recently posted a call for patient input on AMX0035 (sodium phenylbutyrate and tauroursodeoxycholic acid). ALS Canada will be preparing a submission reflecting the perspectives of the ALS community and we are inviting you to contribute.

Patient input is key to helping ensure the realities of ALS are understood by the decision-makers at CADTH, which is the agency that ultimately recommends whether public drug plans should cover a drug if it is approved by Health Canada.

To ensure that your experiences and views are taken into account during this vital review process, we are asking you to complete a short, 20 – 25-minute survey. The results from the survey will be used to inform our patient input submission to CADTH.

Participation is voluntary and anonymous. You do not need to live in Canada, or have specific experience with AMX0035, to complete this survey.

The survey closes on November 24, 2021 (the survey is now closed)

Thank you in advance for contributing. You can learn more about how CADTH fits into the drug access processes in Canada by visiting our blog post on this topic. If you have any questions, please contact ALS Canada at advocacy@als.ca.

Posted in: Advocacy