This topic contains 1 reply, has 2 voices, and was last updated by 
Katie Haubrich 9 months, 3 weeks ago.
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Hi all,
I am asking on behalf of a colleague. I have not personally dealt with cysteamine since many years ago. Wondering if anyone could offer any insights. Thanks in advance.
Original inquiry:
“One issue that has come up in the new year is coverage for Procysbi. Have you guys had to deal with that at all? It was approved by Health Canada for cystinosis last summer, but averages about $1 million/year. Cystagon, which is the IR version, was available to patients before through SAP because there wasn’t ANY marketed cysteamine product in Canada before Procysbi was approved. Cystagon, on the other hand, is less than $10K/year. I can’t quite understand how Cystagon was never approved in Canada, but in any case there is just no way to justify paying over a million dollars for a product that only has noninferiority data against Cystagon. Certainly twice a day dosing is more convenient than q6h, but not enough to warrant a 100x price difference. It seems like Health Canada is now no longer going to approve SAP requests for Cystagon (https://www.capneph.ca/ images/Cystinosis_letter_to_ Health_Canada_.pdf), which leaves a huge gap in therapy for patients as they may very likely be unable to access either drug. Just wondering if you have heard any developments/new on this through the renal grapevine?
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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…)
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