Oh Canada: how cancer care still depends upon where you live

Dear Canada,

Another Canada Day has come and gone. We’re all very proud, but before we get too proud of ourselves, let’s  take  a look at how we are doing as a country for kidney cancer patients and their families.

We’ve already talked about some great strides made this past year. The introduction of pCODR (the pan-Canadian Oncology Drug Review) and I’NESS (Quebec) have brought new transparency to decisions about cancer drugs.

That said, we’ve got some significant advocacy work to do to ensure that Canadians with kidney cancer get access to the same treatments wherever they live. Here’s  a snapshot of some of the issues we’re aware of – and working on:

1.    Patients Not Able to Access Afinitor 2nd Line following Votrient

Issue:   Some provincial governments are refusing patient access to Afinitor following first-line Votrient.

Where is this happening?  We have confirmed access denials in ON, NB. Others TBD. We know this is not an issue in BC or Quebec where provincial drug programs have taken a wider view.

Why the difference from one province to another? Well, the Health Canada approval for Afinitor  explicitly states “post Nexavar or Sutent”. After all, those were the only two first-line therapies available back in the days of the Afinitor trials. As we all know, newer drugs including Votrient (pazopanib) and tivozanib have come along since then – with more to come.

Unfortunately, some provincial programs are unwilling to widen the criteria for Afinitor to mean after “any prior VEGF therapy.” These provincial drug plans demand Level 3 evidence to prove that the 2nd drug is effective after each specific 1st line drug. These trials will take years – if indeed they are ever done for a small patient population such as kidney cancer.

Implications for kidney cancer patients:

Patients on any other drug than Sutent first line who rely on the public drug programs in these provinces will not have access to 2nd line treatment. That might include patients who take a clinical trial drug in the 1st line (e.g., tivozanib) since there is no data to support Afinitor after tivozanib, after pazopanib, after any-other-anib that comes along.

Does this make sense?

Of course not. We want and need patients to take advantage of clinical trials so that we can improve therapies going forward. We should not then penalize them by disallowing them standard 2nd line therapy.  Nor should we penalize a patient for taking a newer therapy, perhaps one that seems more appropriate for their individual circumstances, by cutting them off from any 2nd line therapy until there is explicit and undeniable evidence . We need some flexibility in decision-making around a “choice” in the first line – and a ‘choice” in the second line based upon the oncologist and patient ‘s requests.

Issue 2: Patients not able to access Votrient 1st Line per pCODR Recommendation of Jan 2012

Not all provinces have announced reimbursement of Votrient following the pCODR recommendation. The Patient Assistance Program (PAP) ended on May 31 2012. This means there is no funded access to Votrient (as a choice in the 1st line) in the following provinces: ON, MB, NB, and PEI. Other provinces (including most recently, NS) have adopted the pCODR recommendation and its wording. What could possibly be unique about ON, MB, NB, and PEI that they have to re-examine and refine the work of the pan-Canadian oncology drug review — a review that each of those provinces participated in?

Issue 3: Access to High-Dose Interleukin therapy for selected patients

Once again, your access to high-dose interleukin therapy depends a whole lot upon where in Canada you live. If you live in Quebec or Alberta, you can access an expert centre. If you live in other Western provinces, your oncologist can request an intra-provincial transfer if you are eligible for this type of therapy. Unfortunately it gets a whole lot muddier east of Manitoba. In Ontario, as the case of Mike Pidberezny  illustrated, you might have to put up a huge fight to gain access.  While Mike’s case was ultimately successful, he lost months of time, let alone sleep, anxiety, and frustration fighting a provincial decision that denied him IL2 out of country, out of province, anywhere.  And it’s not any clearer (yet) what hoops the next patient will need to jump through to get permission for treatment in Quebec.

Other Issues We’re Aware of – and Unfortunately — All in New Brunswick and PEI

  • No Access to Afinitor 2nd line in PEI
    • PEI is the only province in Canada not to fund 2nd line therapy post Sutent. Kidney Cancer Canada would be pleased to work with any patient who is (or will be) in need of treatment beyond the first line.
  • No Access to Torisel in NB or PEI
    • Again, NB and PEI are the only provinces where Torisel is not funded in any way. Patients with poor prognosis or non-clear cell histology who would normally be prescribed Torisel will have to be offered something other than what is indicated in the Canadian Consensus Guidelines.
  • No Catastrophic Drug Coverage Plan in NB or PEI
    • Patients in these provinces who are not eligible for provincial pharmacare have no safety net. A middle-income middle-aged patient in NB could pay up to $7800 every 6 weeks for Sutent. (A Patient Assistance program may pay up to 20%, but again, that’s a drop in the bucket when there is no provincial relief program.

So, Happy Canada Day…

We’re betting that you’re just a little dismayed that getting access to therapy is still so difficult. That wasn’t the intent (to cause you dismay), but it’s good for all of us to have our eyes WIDE open to the current trends. We’re all hoping that pCODR and INESS make a difference in the long run and that we will see more uniformity between provinces. Clearly we are not there yet.

Kidney Cancer Canada is staying active on these issues – and we’re here for you if an unexpected issue comes your way. Together we can make Canada a fairer place for kidney cancer patients wherever they live.



10 thoughts on “Oh Canada: how cancer care still depends upon where you live

  1. As a responder to HD IL2, I always follow this issue with great interest and am shocked to understand how difficult it is for all Canadian patients to receive this treatment. It is now eight years of being free from this disease. What kind of support is needed to support those patients who might benefit from HD IL2.
    References to the role of immunotherapy, inc HD IL2,in my blog at http://www.peggyRCC.wordpress.com in a lecture from the KCA patient meeting in Houston, by Dr. David McDermott of Deaconess Beth Israel in Boston.

    1. Hi Peggy,
      Yours is an excellent blog — I put a link to it from ours. About HD-IL2: the challenge in Europe and here comes down to cost vs. the percentage of patients who will benefit. Buffalo was charging over $300k for 2 cycles, so that’s the cost. We were all hoping that the McDermott study (ASCO 2010?) would give some improved guidance on selection criteria to better the odds of a response. Unfortunately there was no new data to suggest that patients could be selected in advance based upon biomarkers, prognostic factors etc. Unfortunately the manufacturer of Proleukin is not interested in clinical trials that might otherwise that might provide access and data.

      In the short-term, the BMS/MDX-1106 studies will likely fill the void for those looking for immunotherapy up front. It would be good to see some solid Complete Responses from that study!

      Perhaps you know something different?

      1. I will email you several retrospective studies from the UK, in which they looked at the general IL2 populations, in people who responded and who did not, both before and after the introduction of the targeted therapies. Both groups had similar response rates. However, when more study was given to the tumor types, both groups had some deemed “Favorable” and “Unfavorable”, depending on the general histology of the tumor. Grouping the sets of patients according to that standard, the “Favorable” group response went from approximately 25% to 41%. That gave rise to their recommendation that more attention should be paid to the specific histology–not just type–of RCC being found in the tumor, as an improved method for choosing patients.

        My summary here is quite brief, but I can send you the longer summary and the study itself for your review. I will be blogging about this soon, but the lectures seemed most urgent. I can be reached at peggyzuckerman@gmail.com. Interested in sharing any info that is relevant.

    1. Thanks Karen. We will likely need to do province-specific letter-writing campaigns on some issues. We’ll be launching an online patient/caregiver survey this month for the pCODR submission for Axitinib/Inlyta, so that’s coming up next. Stay tuned for he survey link — we want as many patients and caregivers to weigh in on matters of treatment choice etc. Stay well!

  2. thanks for all the hard work everyone is putting into the blog I will be on my 3rd cycle of sutent on Friday . I dont know how this is working on me yet no ct scanI hope to fight for one set of rules for all provinces I do want to get involved to what ever i can do to help


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