Canada’s Drug Agency (CDA), formerly known as the Canadian Agency for Drugs and Technologies in Health (CADTH), has posted a call for patient input on tofersen, a therapy currently under review by Health Canada. This is an important opportunity for the ALS community to share your perspectives and ensure your experiences are reflected in the decision-making process.
In response to CDA’s call for patient input, ALS Canada is preparing a submission to reflect the perspectives of the ALS community. The submission will be based on the input of people living with ALS, their caregivers (past or current), and family members.
To inform our submission, we invite you to participate in a survey where you can share your perspectives, lived experiences, and what matters most to you when accessing new drugs like tofersen.
To take part in the survey, click the link here.
The survey is open to:
- People living with ALS
- Caregivers and family members of someone living with ALS
- Caregivers and family members who have lost someone to ALS
You do not need to have specific experience with tofersen to participate. Your input is vital to this process, and we encourage everyone impacted by ALS to share their voice.
The survey will be open until February 14, 2025, at 11:59 p.m. eastern time.
What will your input do?
A key part of CDA’s assessment process is hearing from the patient community about their experiences with the disease for which the drug has been developed and their expectations for the therapy if it were to be approved. CDA issues open calls for patient input as part of their process to better understand the realities of the disease when evaluating the value of the drug. Your input in this survey will help CDA understand the real-world impact of ALS and the importance of having timely, equitable, and affordable access to therapies.
What does CDA do?
While Health Canada reviews drugs to assess their safety, efficacy, and quality for approval in Canada, CDA assesses the clinical and economic evidence, guided by insights from clinicians and patients of drugs that are approved or under review by Health Canada. In Quebec, this process is managed by the Institut national d’excellence en santé et en services sociaux (INESSS).
CDA’s evaluation helps federal, provincial, and territorial public plans decide which drugs to fund and under what conditions. Based on its evaluation, CDA provides one of the following recommendations:
- That publicly funded programs reimburse the drug without any specific conditions;
- That publicly funded programs reimburse the drug with specific clinical criteria and/or conditions; or
- That the drug not be reimbursed.
You can learn more about how drugs become accessible in Canada by visiting our blog post on this topic.
More Information
To learn more about tofersen, visit our frequently asked questions blog post on this drug.