Hi Vivian,
Not sure if your colleague still has questions about cysteamine access, but we have been struggling significantly with this over the past year! We have some patients who are accessing Procysbi via a compassionate care program from the manufacturer, and others who are still getting Cystagon via SAP. Health Canada is willing to continue to allow access to Cystagon for select patients who have documented intolerance to Procysbi.
Just last week, I learned that a new company (Recordati/Orphan Europe) has acquired Cystagon, and the price has now increased from $1 per 150mg capsule to ~$6 per capsule.
Sounds like Recordati has plans to bring Cystagon to market in Canada (and although the sudden price increase is ridiculous, it’s still cheaper than Procysbi…)
