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Patient and Caregivers Surveys

Submissions to the panCanadian Oncology Drug Review (pCODR) and to Institut National d'Excellence en Santé et en Services Sociaux (IINESSS) 

The pan-Canadian Oncology Drug Review (pCODR) undertakes rigourous, objective reviews of cancer drugs and provides funding recommendations to Canada’s provinces and territories (excluding Quebec). The funders use this information as one element of their decision-making process to determine if a drug will be eligible for public reimbursement. pCODR takes into account evidence from a number of sources, including patient groups, drug manufacturers, clinician-based tumour groups, and the pCODR Provincial Advisory Group.

Listening to patients is a vital part of pCODR’s work. They recognize that patients have a unique knowledge about what it is like to live with a specific disease or medical condition. What patient experience may not be reported in published literature. Patient value can be important to share with payers and pCODRs decision makers.

In 2016, Myeloma Canada conducted two major surveys amongst patients and caregivers in Canada and in the US to evaluate disease impact on quality of life, patient needs, treatment expectations and impact of new therapies. These surveys serve to inform and populate Myeloma Canada’s patient submission to the pCODR.

To participate in patient and caregivers surveys for the purpose of providing feedback to pCODR, click here to join our mailing list.

Recent Submissions to pCODR

  • In 2016, Myeloma Canada produced 3 patient submissions to pCODR. They were for daratumumab (Darzalex), cafilzomib (Kyprolis) in combination with dexamethasone, and for ixazomib (Ninlaro) lenalidomide (Revlimid) and dexamethasone. 
  • In February 2017, Myeloma Canada made a submission to pCODR for  the approval of two new indications for daratumumab (Darzalex®):
    • daratumumab (Darzalex®) in combination with lenalidomide (Revlimid®) and dexamethasone for patients who have received at least one prior therapy.
    • daratumumab (Darzalex®) in combination with bortezomib (Velcade®) and dexamethasone for patients who have received at least one prior therapy.

Early in 2016 pCODR initiated a new pilot initiative to increase opportunities for clinician input and feedback in the pCODR review process. This allows for clinician input to be incorporated into the pCODR process in a formal and meaningful way.

  • Working with the members of the Myeloma Canada Research Network (MCRN), Myeloma Canada coordinates this input process of behalf of clinicians.

L’institut national d'excellence en santé et en services sociaux (INESSS) also invites patient organizations to submit input to their drug reviews.

  • Myeloma Canada provided submissions for cafilzomib (Kyprolis) in combination with dexamethasone and Revlimid and for daratumumab (Darzalex).