Happy New Year Wishlist for Canadian Patients

Happy New Year to All!

January always brings a wishlist — whether it’s to get more organized. get more exercise, or lose a few holiday pounds. For Kidney Cancer Canada, our volunteers all wish for most of those things too, but we’d like to add a few more items specific to kidney cancer patients and their families. So let’s start 2013 with Three Wishes and a Promise.

Wish Number One: Choice in First-Line Treatments

Surely that wish won’t be too hard to see to fruition. After all, we’ve had access to Sutent and Torisel as first-line options in most provinces. (And yes, in some provinces Nexavar has also been an option.) The issue we face in early 2013 is access to Votrient. ALL provinces except for Manitoba have now listed Votrient for reimbursement. That’s the good news. The not-so-good news is that the eligibility criteria in many provinces insists that the patient has proven intolerable to Sutent first. (Yes, that’s what the pCODR recommendation said. Some provinces are being more flexible than others (BC, NS) and others more rigid (ON, NB).

What can we do? We expect to be working on a second submission to pCODR in 2013 to have them remove that “intolerable to Sutent” condition and allow the patient and the oncologist to make the choice.) In the meantime, if you have any issues accessing medication in your province, do let us know. We’re here to provide that help in any way we can.

And Manitoba, after all of that good news about your home cancer drugs program?  A year after the pCODR recommendation in favour of Votrient, there is still no reimbursement? Every other province, yes, including PEI and New Brunswick, have found a way to fund this alternate treatment. What’s the hold up in Manitoba? We thought that pan-Canadian meant every province (except for Quebec — and Quebec reimbursed Votrient right from the start!)


Wish Number Two: Choice in Second-Line Treatments

Afinitor (everolimus) is broadly available across Canada, with the exception of PEI where unfortunately no second-line treatment is funded yet. Afinitor provides many Canadian patients an important treatment option in the second-line. To add to the basket of choices, any day now we’re expecting a notification from pCODR that they have prepared an Initial Recommendation regarding Inlyta (axitinib) for second-line treatment of mrcc. We’re hoping that the recommendation will be positive and that the provinces will then each streamline their processes and follow with a clear decision to fund either an mTOR (Afinitor) or a TKI (Inlyta) according to each patient’s individual needs. We’ll be responding to pCODR and will let everyone know what our pan-Canadian Oncology Drug Review process has to say about this new treatment option.

As a registered patient advocacy group with pCODR, we have an important voice in this process — and we’ll use every opportunity to make sure Canadian patients have access to as as many treatment options as possible.


Wish Number Three: More Treatment Options, More Choices

As patients, caregivers, and advocates we always have our eye out on the horizon studying what is coming next for kidney cancer. Our sincere wish is for new treatment options that will see remarkable results. (Imagine: trials that are stopped because the results are so outstanding. Imagine that we will see long-term remissions and more patients in club NED (No Evidence of Disease). Imagine trials in which we count the number of CR’s – Complete Remissions.) With continued research and focus on kidney cancer, there is no reason to think these goals are out of our reach.

In the short-term, there are some important clinical trials that will report in 2013 (including, we hope, the Phase 3 trial of dovitinib vs sorafenib in the third line). We also have our eyes on some important clinical trials including the new targeted immunotherapy option (nivolumab vs Afinitor) to open in many Canadian centres very early this year. We’ll share what we learn at important kidney cancer research meetings, including the Kidney Cancer Research Network of Canada Forum later in January, and GU ASCO in mid-February. As always, we’ll help you and your family navigate through the latest information including the latest clinical trials and treatment options wherever you live in Canada.

Lastly: A Promise

Those of you who have taken a look at our brand new website (www.kidneycancercanada.ca) know that this has been an enormous undertaking. We are working with a firm in Ottawa (Envision Online Media) to produce a bilingual, multi-level website that can support our members for years to come. Our commitment  is that we will have the members’ Discussion Forum back up and running at top speed in the days to come.  Please bear with us as we make some improvements and explain some of the new features. We are well underway, but not completely where we want to be in terms of speed or ease of access for our members. Check back often and see how we’re coming along.

Wishing you all a Happy and Healthy 2013! Thank you all for your continued support.



2 thoughts on “Happy New Year Wishlist for Canadian Patients

  1. excellent wishes and I look forward to seeing the Discussion Forum again soon. Thanks again for all the hard work by our KCC staff and volunteers and best to all for a great 2013!

  2. Happy new Year and Congratulations on the direction you have chosen for 2013. The website looks great so far!

    Personally, I believe the decision to chose or use a specific drug to battle cancer of any kind, should be that of the oncologist and the patient. Restrictions place on the funding based on low, medium or high risk, and effectiveness and toleration level of another drug seem unconscionable. Do you want the best possible choice for your family member to be made available, or should that decision be made based on political budgets and organizational agendas?

    Good luck with the 3 wishes and 1 promise…you have my support!

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