Response to pCODR: We Disagree.

Read any great cancer drug reviews lately? No? Neither have we.

For the past week, we’ve been pouring over the pCODR (pan-Canadian Oncology Drug Review) initial  recommendation for axitinib (Inlyta).  As a registered patient advocacy group, we were given 10 days and a maximum of 3 pages with which to respond, and respond we did.

Here’s the summary version:

–      Kidney Cancer Canada has learned from our experience with the Votrient/pazopanib recommendation (to which we “Agreed in Part”) that there are serious implementation and practicality issues with this type of recommendation that perhaps were not foreseen by pERC at the time of that recommendation. [pERC = pCODR Expert Review Committee]

–      The prior conditions of “intolerability” or “contraindication” to another agent (Votrient/pazopanib) have resulted in significant delays at the provincial level, with some provinces taking a year to further define those criteria, and many provinces stipulating the duration/dose/toxicity levels of the prerequisite drug.

–      For patients, having to prove that they are first intolerable to a treatment means that, by virtue of having taken even one tablet, they have “burned through” another line of therapy. Serious repercussions include being excluded from subsequent lines of therapy and clinical trials.

–      For rarer cancers such as renal cell carcinoma, the requirement for direct comparison trials to a current standard of therapy is unrealistic, especially in a rapidly evolving field. We believe that the only way forward with rarer cancers is to depend upon high-quality indirect comparisons that are performed to CADTH or international standards. [CADTH – Canadian Agency for Drugs and Technologies in Health] 

–      Our Patient Evidence submission to pCODR was in favour of CHOICE and ACCESS. This recommendation as it stands will limit choice, delay access, and increase the burden of eligibility/proof for patients & treating oncologists.

For those wanting to see the full three pages (just how far could we extend those margins anyway?), we’ve placed our full submission on our Cloud here.

Some of you have asked what you can do as individuals.  While the pCODR organization itself will only receive input from Canadian cancer organizations who pass the muster (and we did), your provincial/territorial politicians are another story altogether.

For example, anyone living in Manitoba (or with family in Manitoba) is strongly urged to write to your MLA regarding the first pCODR recommendation (for Votrient/pazopanib) that was final a full year ago. Why is Manitoba the *only* province in Canada not to list Votrient as a choice in the first-line for mrcc? A letter to Manitoba MLAs, the Health Minister, and the Premier would not go amiss. How did Manitoba slide behind PEI when it comes to providing access to new cancer therapies? If you need help with your letter, we’d be happy to help fill in the details.

So now we wait for pCODR to reconsider its recommendation for axitinib. We’ve offered to meet, and in the meantime will wait patiently for a revised, improved recommendation that works for Canadian kidney cancer patients and their families.  We’ll keep you posted.

Best to all,
Deb, Bob, and Julie aka KCC volunteer pCODR team, masters of tight margins, and insanely passionate about patient access to treatments.





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