(I’m pretty sure they give it so many names so it’s much harder to conquer. It’s another Place That Sends You Mad.)
In the very near future this is the route we will likely have to take if we want to be able to access FOP drugs.
The good news (or bad news, I guess, depending on your control issues and the skill/willingness of your medical provider) is the application for access must be made by a medical professional (or “authorized prescriber”, as EAP calls it). Less stress/fight for us?
Your doctor will put in the application based on which route you end up taking (SAP or EAP, with a push on the Compassionate Review Policy) and then you wait.
The good news for FOP may be our current lack of treatment options. One of the questions posed in the application delves into why alternate (read: already available) options aren’t being explored for treatment.
If you get accepted your doctor will get the drug and pass it on to you. It should be noted that the cost of the drug isn’t covered by the government. Drug companies do sometimes cover the costs, but if not a private insurer or you will have to step up to cover the total.
In a dream world garetosmab and palvarotene will both speed through the FDA process and then be quickly accepted by the Committee to Evaluate Drugs (CED) and the Health Products and Food Branch (HPFB) of Health Canada. We’ll all hand over prescriptions to our pharmacists, get our drugs and the whole FOP flare up thing will be something that happened in previous centuries.
(Dream worlds are fun but I’m a pessimist and don’t have a lot of faith in the system.)
We also do have the $1 billion offered by the federal government to help gain access to rare disease drugs and the faint promise of a National Pharmacare that includes rare disease drugs.
At the same time, though, we now have to handle the changes made to the Patented Medicines Prices Review Board (PMPRB) and the dangers of whether the drugs will be too expensive to even make it to Canada.
I’d suggest burying our heads in the sand and hoping for the best but I’m pretty sure FOP limits your ability to bend over and access the sand to do just this.
I guess I’ll just say…. Good luck?