Hello. Thank you for inviting us here today.
I am the CEO of Cystic Fibrosis Canada.
Cystic fibrosis is a fatal disease affecting over 4,300 Canadians who die far too young. We are, however, at a time of extraordinary change for this disease, as there are now drugs that can help 90% of our community live much longer, healthier lives. The next best thing to a cure is on our doorstep.
When we first put forward our submission to this committee, we wanted to discuss the opportunities and the challenges we saw with respect to the implementation of the PMPRB changes. We wanted to stress that we agreed with the goal of lowering drug prices and the changes to the comparator countries, but we had concerns about the additional pharmacoeconomic elements. While we stand behind that thinking, today I need to share the serious concerns we have about the approach and the conduct of the PMPRB.
Drug policy is important. It can have a life-or-death impact. With a drug policy change of this magnitude, it was our expectation that the PMPRB would ensure there was meaningful consultation with those most affected. However, in our experience and in the experience of many other patient groups, this was not the case. Our submissions were sent into what felt like a vortex. Ultimately, they were never reflected in the minimal revisions made by the PMPRB, nor were explanations given for their chosen direction.
Last week we learned of activity at the PMPRB that solidified our concerns about the value placed on patients. We learned through an ATIP request that the PMPRB had developed a communications strategy to discredit four groups. Three of these groups were patient groups, including the cystic fibrosis community. To quote the PMPRB strategy, “opponents of the reforms have been more vocal about the potential negative impacts of their implementation and are spreading disinformation through organized public relation campaigns.” Further, it's noted that “the CF community…have aggressive public relation strategies that are aligned with the messaging promoted by the industry.”
I want to make a specific point here. The word “disinformation” is highly inflammatory and was a deliberate vocabulary choice by PMPRB officials. We now understand that if you dare to disagree with the PMPRB, they won't simply refute your point of view. They will villainize your efforts.
As the CEO of a nationwide organization dedicated to serving people with a fatal disease who now have an opportunity to access life-changing medications, I cannot fully convey the dismay and concern I have that a federal agency deems this community to be an opponent and a threat to be discredited. To specifically target the credibility of this community—children and young adults who are fighting for their lives—is beyond what I could comprehend as reasonable or appropriate for a federal agency. These families felt that these changes stood in the way of their access to new life-saving medications, so they spoke up.
Members of Parliament who disagreed with the PMPRB's directions should also be concerned, as they, too, were characterized as spreaders of disinformation. This characterization should be very concerning to the members of this committee, as the role of elected representatives is to assess policy direction.
My final remark is with respect to another ATIP request that showed calculations conducted by the PMPRB on two cystic fibrosis drugs if the guidelines were implemented. The calculations indicated that the manufacturer would be required to reduce its price by 99%. We found this to be of keen interest. Why? It's because time and time again the PMPRB told us that our concerns were not valid and that the impact on industry was overblown. Whatever you think about the pharmaceutical industry, we believe that most of us can agree that there isn't a company in any sector that would raise its hand to come to a country that requires a 99% reduction in price.
These examples illustrate an agency that we have grave concerns about. As I noted earlier, we support the government's goal of lower drug prices. However, we believe this must be accomplished in a transparent, credible and consultative manner, where all parties are listened to and, frankly, those with the most at stake—Canadian patients—respected. This has not been the case with the PMPRB.
It is incumbent on the Standing Committee on Health to stay these guideline changes and to call on the Auditor General and the Integrity Commissioner to review the activities of the PMPRB.
Thank you.