pCODR Recommendation for axitinib (Inlyta) spells trouble for patients

What’s new so early in the new year? Read on…

As many of you who follow this blog know, pCODR is the new pan-Canadian Oncology Drug Review Process. pCODR’s role is to evaluate all new oncology drugs specifically to determine whether they should be reimbursed by our provincial drug plans (excepting Quebec).

This past week pCODR issued its latest recommendation for the latest kidney cancer drug, axitinib (or Inlyta). For those of you interested in how this process works, I invite you to read the full recommendation here on pcodr.ca

This recommendation is open for feedback until Monday January 28th. As a registered patient advocacy group, Kidney Cancer Canada will be responding with several concerns:

1. That the condition of “intolerant to Afinitor/everolimus” is not evidence-based nor does it work in the best interests of patient CHOICE and ACCESS to the most appropriate treatment for that patient.

Note: We saw this same condition placed on Votrient / pazopanib a year ago and have since watched delay after delay as each province grappled with the “intolerant to Sutent” condition. In many provinces, patients and their oncologists have to jump through unnecessary hoops before they can access Votrient.

2. That the lack of direct drug-to-drug trials is being held as an unreasonable standard or request for a rare cancer such as kidney cancer. It is not reasonable to expect industry to conduct direct head-to-head trials for every possible comparison or sequence — especially for a rare cancer, and especially not at a time when new agents are coming out every year.  So yes, there will always be some uncertainty of which of two drugs works best overall, but in rarer cancers, we all have to live with those uncertainties. We cannot stop patients from accessing newer treatments just  because there is no Level 1 evidence (large, phase 3 studies) that take years to report.

If you’re interested in the kind of work we do behind the scenes for treatment advocacy, please follow this link to our public folder for pCODR submissions. Our position is that we want ALL Canadians to have access to ALL treatments for kidney cancer that have been approved by Health Canada. We work on each and every drug submission, survey our membership and do our best to represent your voices with pCODR and with our provincial governments.

https://kidneycancercanada.box.com/s/1ziv3h1m697ibwlexq4o

So, the next time someone asks you what Kidney Cancer Canada does to support patients in Canada, please remember this note. We are planning to burn the midnight oil between now and Monday Jan 28th to make sure we respond appropriately.

If this matters to you, please do let us know. And if you can find a way to support our work as volunteers, please do consider a donation to help with all of the things we’re NOT doing while we’re tied up dealing with pCODR.

Thank you for listening!

Deb & the KCC Advocacy Working Group

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3 thoughts on “pCODR Recommendation for axitinib (Inlyta) spells trouble for patients

  1. I fully support KCC in this endeavour, especially as I am in the unfortunate position of being told that I do not qualify for axitinib under the current guidelines because it’s not approved in a 3rd line setting. While we are in the process of investigating whether my husband’s group plan would cover the expense, the other issue I’m told is that my onc. may not be able to prescribe it due to the very restrictive guidelines set out by Health Canada and Alberta Health Care, leaving me with only whatever “Alternative” treatments I can afford to try.

  2. Very disappointed to hear pCODR’s stance on Axitinib. I definitely support and appreciate KCC’s work and effort on behalf of all kidney cancer patients to get this drug on all the provincial/territorial approved drug lists.

  3. It is very discouraging to hear pCODR’s stance and it is totally unacceptable. Would a letter campaign from RCC patients and families be of help. KCC does amazing work on behalf of patients and their families. All of your work is so much appreciated. Please let us know how to help.

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