From time to time, we hear of pALS who are not eligible to get Radicava under their provincial or private insurance plan. Recently we heard of a pALS who had been on Radicava, but were later told they were no longer eligible to receive it. The reason for this is the criteria for who is eligible for drugs, and who can continue to receive them under the provincial drug benefit plans. These criteria are developed by Canada’s Drug Agency (CDA), which is a separate agency from Health Canada which approves drugs as safe and effective
to be marketed.

Over the past year, CDA has undertaken a comprehensive study of the current state of care and treatment of ALS in Canada. Three ALS Action Canada Members Cali Orsulak, Rick Zwiep, and Dr. Andrew Darke, were invited to join the Advisory Group for this report. We were pleased to bring strong and bold patient and caregiver voices to the project through three meetings with the CDA team and many comments on hundreds of pages of draft reports. This was an incredible commitment and effort by these volunteers with subject matter expertise and lived experience, in addition to the many roles and contributions they make in service of the ALS community.

The final draft, which will be available soon, includes drug utilization data indicating that more patients have access to riluzole than Radicava, as would be expected from the differences between the reimbursement criteria for the two drugs.

However, the project did not address the role that CDA itself plays in developing these criteria – a subject that we have pursued with them for more than three years, with 10+ submissions and six meetings with CDA officials, including CDA’s CEO. This is the kind of necessary, focused and persistent work that was the driving force behind the creation of ALS Action Canada and our Advocacy Committee.

At the end of the project, CDA offered the opportunity for Andrew to meet with a senior member of their executive team to discuss both the cause of the drug access problems that arise from their review procedures, as well as propose remedies which they could implement.

It is our view that this process needs to start soon – before new drugs start to be reviewed by CDA, and are subject once again to restrictive reimbursement criteria. Key to improvements in access to these new drugs will be a greater role for expert neurologists in
establishing criteria for which patients are most likely to benefit from the drug.

We appreciate the opportunities to build on our past contributions to the CDA, and will continue to seek opportunities to further reinforce this message.

It is only because of your support that ALS Action Canada can amplify patient and caregiver voices to drive progress on ALS.