Chances are that if you’re reading this, you have an interest in kidney cancer and an interest in how patients across Canada navigate our healthcare systems. If I’m wrong about one of those two things, you really should stop reading now.
1. Welcome (?) pCPA — Another acronym for the Canadian Healthcare glossary
What’s a pCPA? It’s a Pan-Canadian Pricing Alliance for pharmaceutical drugs that includes all provinces except Quebec. In principle, pCPA will ensure that each province pays the same negotiated price. That sounds fair, especially for the smaller provinces that don’t have as much bargaining power.
Is Canada thinking about a pCPA? No, actually the provinces are already doing it — you probably just haven’t heard of it yet, but that’s ok, there hasn’t been much communication that you’ve missed! At last count, 10 or 11 drugs have gone through pCPA, and 17 are currently in review. (One of those 17 in review is a kidney cancer drug, axitinib (Inlyta). Since the compassionate access to Inlyta is now closed to new patients, we are anxiously awaiting news that the mrcc drug has made it through this latest process.)
So, how you can see how things are going? Well, unfortunately you can’t. The new process is up and running, but as of yet there is no transparency… except a commitment to hire a consultant who will consult with stakeholders. But in the meantime, drugs have one more step between the pCODR recommendation and your medicine cabinet. We’re concerned about potential delays to access. Need access to axitinib today? Well you had better have private insurance or live in the province of QC (which funded back in March). The rest of us are waiting while we clear this latest hurdle. Hurry up please. Patients needing 2nd line therapy cannot afford to wait. Experience tells us that some provinces would have listed by now (BC, AB, SK?), but alas, now we all wait for a lump of provinces called the pCPA.
2. Where is pCODR going?
Nothing is confirmed, but one of the worst kept secrets in Canada is that our new cancer drug reimbursement process (pCODR – pan Canadian Oncology Drug Review) is about to be moved back inside CADTH (Canadian Agency for Drugs and Health Technologies). A few of you who were paying attention in 2007 might remember that pCODR (then JODR) was actually spun off from CADTH and its Common Drug Review (CDR) to allow for a specialized oncology drug review. So yes, the repeated rumours are that we are going back for formalized governance structures etc. The thing is, there was a need for cancer drugs to be treated differently in 2007, and that need still exists today. So, as long as all of the good things we’ve achieved with pCODR (greater transparency, greater patient engagement in the process) are kept intact, we *might* be ok. It’s just hard to contemplate that all of the progress we’ve made might be lost if we get folded into the old processes again. Stay tuned for an official announcement that is sure to talk about streamlining and efficiencies… and we’ll keep reminding them that cancer patients deserve timely and efficient access to new treatments.
3. Clinical Trials under the spotlight in ON
In Ontario, the number of patients treated at a cancer centre who actually enroll in a clinical trial has been declining steadily (from 9.1% in 2008 to 6.4% in 2011). As we’ve said so many times, the future of cancer treatment depends upon patients like you and me signing up for clinical trials. In kidney cancer, we still have so many unanswered questions — why do treatments work on some patients and not on others? How can we determine ahead of treatment what treatment will have the most benefit? If you need the answers to these questions, thank a patient who is on a clinical trial, or investigate trial opportunities for yourself or a family member. We can help you navigate if needed.
In Ontario, we were recently asked to consult on a planned new policy on cancer drug funding within (and subsequent to) clinical trials. The problem is that some patients who have been on a new drug have actually had trouble accessing “standard” therapy afterwards. The Ministry says this is because they are evidence-based, and there is no evidence after a new drug. Exactly Ministry. That’s what a clinical trial is for (to collect evidence). We are working hard to ensure our viewpoint is understood:
- that no cancer patient should be penalized in any way by being denied a standard treatment after a clinical trial
- that barriers to clinical trials need to come down, not new ones erected
- that a big red carpet should be rolled out for every patient who enters a clinical trial. (Ok, I made that one up, but these patients should be thanked at every possible opportunity for moving the research forward!)
Hope this update brings you up to speed on what’s been happening. Kidney Cancer Canada continues to play a very strong role on the advocacy front in Canada to ensure we have access to treatments of all kinds. If our work matters to you and your family, please consider making a donation to our organization to say ‘THANK YOU KCC’, or drop us a note to firstname.lastname@example.org Your support keeps us going!
Thanks… and Happy Canada Day July 1st!