Giving pCODR the Patient Perspective – a Huge Undertaking

Dear All,

Well our deadline was August 30th, and I’m happy to say that, unlike back  in high school when we worked until the final hour, our team of three KCC treatment advocacy volunteers finished our “project” a day ahead of time and submitted our various documents to pCODR (pan-Canadian Oncology Drug Review). We have made an exceptionally detailed and (we think) compelling case on behalf of all kidney cancer patients and their families.

We will now trust the pCODR process to consider the patient voice as they weigh the decision whether to recommend (or not) the latest Health Canada approved drug for mrcc (axitinib).  In a few months’ time, we will be asked to submit again with comments on the initial pCODR recommendation. We won’t miss that opportunity either!

Thank you to all 138 of you who took the time to answer our online survey in July and August. We were able to quantify how important choice, flexibility, and access are to you as patients and caregivers.

Vast majority of patients/caregivers rated flexibility of choice in 1st and 2nd line therapies as extremely important to them.

Along with the patient & caregiver survey, we also reached out to 16 of our Medical Advisory Board of kidney cancer experts across Canada, asking them many of the same questions. Our conclusions were that oncologists and their patients agree that choice of therapies and the ability to select therapy based upon each patient’s medical and individual disease characteristics is extremely important.

Oncologists who specialize in kidney cancer need to be able to choose 1st and 2nd line therapies for mrcc without undue restrictions and criteria.

We also asked patients/caregivers who had had access to axitinib/Inlyta through a clinical trial or special access program to answer a few additional questions. We have included their wide range of responses and some anonymous quotations in our official submission. Some of your words truly spoke to the difficulty of living with this disease and the precious value of extended time. Your words reminded us why we do this work in the first place — to make sure patients have access to what they need, when they need it.

Why Do All This?

Our hope is to see every new Health Canada approved treatment for kidney cancer recommended for funding by pCODR, and then funded by each province in a timely fashion. The requirement on patient groups to participate in the process is not funded in any way. We are expected to survey patients, analyze the data, and complete the templates as a volunteer effort. The risk to us in NOT participating in the process is that kidney cancer is a rare disease and we simply have to participate or our voices will not be heard.

Is the Process Working?

Certainly we have concerns. You may be aware that despite a pCODR positive recommendation for Votrient in January, three provinces, Ontario, Manitoba, and PEI, have still not announced their decision to implement the pCODR recommendation. That means that Votrient is not reimbursed as a first-line option in those 3 provinces, despite those provinces being involved as participants in the pCODR process and the recommendation. From our perspective, the only way to measure pCODR’s effectiveness is to see a marked decrease in provincial disparities. We haven’t seen that yet.

Last but not least, I want to thank two people who worked so hard on this submission. Julie Ring and Bob Bick (together with yours truly) have collectively put over 100 hours of work into this one submission — on weekends and evenings on top of their regular full-time jobs.

If you care about what we do (hey, you’re still reading), please consider supporting Kidney Cancer Canada in a way that’s meaningful to you.

http://www.kidneycancercanada.ca

 

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3 thoughts on “Giving pCODR the Patient Perspective – a Huge Undertaking

  1. the time & effort invested by all 3 of you, and everyone who answered the questions, is appreciated more than can be adequately expressed in words. KCC folks are just an outstanding group of people.

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