Updated July 18, 2018

The Canadian Agency for Drugs and Technologies in Health (CADTH) recently posted an open call for patient input on Radicava (edaravone). This is an additional step along the approval and affordability pathway for the drug, which is currently being reviewed by Health Canada.

In response to CADTH’s call for patient input, ALS Canada is working in coordination with ALS Societies across Canada to prepare a submission on behalf of the ALS community. The submission will be based on the input of Canadians living with ALS, their caregivers (past or current) and family members. Thank you to everyone who made their voice heard by completing the survey we developed for this purpose.

What is CADTH?
While Health Canada reviews the safety of new drugs, CADTH through its Common Drug Review examines the clinical and cost effectiveness of a new therapy. In Quebec, this process is managed by the Institut national d’excellence en santé et en services sociaux, or INESSS.

  • It results in recommendations and advice that are used by federal, provincial and territorial drug plans to make decisions about whether the cost of the drug, if approved, will be covered through publicly-funded programs. At the conclusion of the Common Drug Review, one of the following recommendations is made:
  • That the drug be reimbursed by publicly-funded programs
  • That the drug be reimbursed by publicly-funded programs, with clinical criteria and/or conditions, or
  • That the drug not be reimbursed.

Why is patient input requested?
A key part of the Common Drug Review is hearing from the community about their experiences with the disease for which the therapy has been developed, as well as their expectations for the therapy if it were to be approved. CADTH issues open calls for patient input as part of their process, in order to better understand the realities of the disease when evaluating the cost value of the drug.

CADTH has a formal process for the submission of patient input that includes a template of specific questions for organizations to complete on behalf of, and with the input of, the community they represent. These questions explore:

  • Lived experience with the disease
  • Lived experience with current or previous therapies
  • Lived experience with the drug being reviewed
  • Expectations for the drug being reviewed

Patient input does not guarantee that CADTH will issue a recommendation that the drug be reimbursed (either with or without submissions), but it does ensure that the perspectives of the community are considered in their evaluation and analysis.

The voices of our community
Over 550 members of the ALS community shared their experiences, perspectives and expectations through the survey that was open from June 11 to June 24, 2018.

We also conducted numerous focus groups for those interested in sharing their experiences in greater detail.
Participants in the survey and focus groups included:

  • People living with ALS
  • Caregivers and family members for someone living with ALS
  • Caregivers and family members who have lost someone to ALS
  • Final Submission:
    ALS Canada, in coordination with ALS Societies across Canada, used the data from the survey and focus groups to develop the CADTH Patient Input submission. You can find the final 2018 ALS Canada CADTH Patient Input Submission here.

    Please note, the submission is only available in English.

    More information
    You can find more information on how new drugs become approved and available in Canada here.

    Posted in: Advocacy