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Price is $2.125 million. Officially the world's most expensive one-time drug ever. Price is $1.2mm to $600,000 higher than ICER recommendation for cost effectiveness. Going up against another egregiously priced medication, SMA, which is sold at 6x its cost effective price.
Novartis arguing that its drug is 50% cheaper than 10 years of Spinraza (which is $375k a year, and is given chronically). BUT no evidence this gene therapy lasts 10 years! oldest kid is 5.
Here is the ICER cost effectiveness report. icer-review.org/material/sma-f…
