I want to thank Mr. Lobb for bringing the motion forward and I think there is an important discussion here. Basically, besides Cystagon, there is a second drug, Procysbi, which has the same active ingredient for treating cystinosis. Neither of them was approved in Canada until just recently, and all patients had to go through Health Canada's special access program, SAP, to acquire the drugs.
Just recently the change was that the other drug has been approved, Procysbi, and for the most part, patients and doctors are now being directed to use that drug. There is an issue with it. That drug is significantly more expensive than Cystagon, and there is active work under way right now to renegotiate the pricing on that alternative drug.
What is still true today is that Health Canada will continue its practice of considering requests to access Cystagon through SAP, just as it's been done in the past. Patients were always accessing it through SAP. It's done on a case-by-case basis in accordance with established criteria. Practitioners who want to continue accessing Cystagon for their patients through the SAP can do so provided they identify the clinical reasons that treatment with Cystagon and not Procysbi is more optimal for their patients. Physicians, in discussion with their patients, are uniquely placed to determine the best treatment for their patients, taking all aspects of their health and well-being into account.
The fundamental statement in this motion, “Health Canada's...decision to make Cystagon unavailable”, is not correct. It's still available through the SAP on a case-by-case basis, just as it has been. There is an added requirement for the practitioner to identify why it's preferable clinically to Procysbi, but otherwise it's still available to patients. For that reason, I wouldn't support the motion. It is still available to patients through the SAP with a practitioner's request.