Ever wondered how drug review committees make their decisions on which drugs to fund and which to reject? In the past, these committees reviewed clinical evidence (trials data) and pharmo-economic data (cost versus benefit). That explains, in part, why back in 2006 the Common Drug Review (Federal) rejected both Sutent and Nexavar for kidney cancer, despite the fact that these drugs presented the first major advances in kidney cancer in over a decade. Similar decisions have been made since, many times by drug review committees that use only two legs of the proverbial decision-making stool. For the process to be sound, we must add the third leg: the patient input.
Yesterday we had the chance to participate in a workshop focusing on the patient evidence piece of Canada’s major drug review processes (CADTH/CDR, Ontario (provincial process), and pCODR (new pan-Canadian process). Representatives from all of these agencies recognized that patient input into the process is in its infancy. Not all patient groups are providing input. For example, in Ontario, for the last 39 drug reviews, only 15 submissions were received from 12 different patient groups. From what we hear, some were very good (we assume ours was one of those…) and some were very bad…
Our challenge now is to provide credible, well-written and impactful patient evidence submissions. We are challenged to reach out within our patient communities to gather our own data on patient experiences with a drug, side effects, QOL (magic term for Quality of Life), and comparisons to other treatment options. Yes, this means we will need data from those patients who took the drug on a clinical trial or through a compassionate use program. Our first challenge will be to FIND those patients. (As you know, doctors can’t give us names…)
So, if you’re reading this and wondering how you can help, perhaps we need to start with this:
— Wherever you go where you might see patient brochures, please take a second look to make sure that you see Kidney Cancer Canada prominently displayed. This includes doctors offices, (especially urology and cancer clinic waiting rooms), Wellspring/HopeSpring/cancer support places. (If you find our stuff hidden in the back, be radical and move it to the front…)
— If you find our materials missing or in short supply, please let us know (firstname.lastname@example.org). If you’re willing to take a few brochures along with you, we would be happy to send you some.
We need a small army of volunteers to get the word out. If every patient who joined a clinical trial or started a new drug registers with us, we will have no trouble reaching those patients when it’s time to write a compelling submission for funding.
Please join us and wave the flag for patient input. We need you. Our next patient evidence submission will be written for Votrient/pazopanib in the coming weeks.