You want a quick summary of where we are with the updated PMPRB? I give you this fantastic analogy from Jason Field: It’s “a canoe built of sticks covered in duct tape.” They took a system that wasn’t going to hold up, did a slap-dash “repair” that didn’t really change anything (and possibly made things worse), then held it up as a suitable replacement. (Note: this is similar to what the Conservative government did with our sex work laws in 2014. This is not an example of Liberal ineptitude as much as a good look at how democracy or humanity is flawed.)
The new guidelines are more complex—possibly in attempt to seem more impressive—but lack a logical foundation for their creation (i.e. case studies, formulas).
Although the high-cost threshold was raised it was not raised to a level that will qualify drugs for rare diseases.
These reductions and regulations are not making our pharmaceutical market more competitive. In fact they are shrinking the number of drug manufacturers entering the Canadian market.
Unfortunately it looks like the SAP/MAP/GAP route is still the way we’ll have to go if/when there’s treatment for FOP and this means we are facing a future in Canada where some of us get treatment and others are shut out.
The good(ish) news is the new PMPRB isn’t set yet. CORD is gearing up for another battle and has until July 20, 2020 to offer an official opinion/criticism of the plan.
As well, PMPRB is holding a patient panel public forum on July 8, 2020. Let’s hope we have a solid rare disease presence on that panel.
Oh, Canada, I really hope one day I can stop writing these “If you have a rare disease in Canada you’re pretty much f*cked” articles. Show compassion and support for the millions of Canadians living with rare diseases. It’s the Canadian thing to do.