Biogen SMA drug price, Novartis estimates for its treatment far too high - U.S. group

ZURICH - Biogen Inc should slash the price of its spinal muscular atrophy drug, and the $4 million to $5 million Novartis has said its experimental gene therapy for the disease is worth is excessive, an independent U.S. organization that reviews the value of medical treatments said on Wednesday.

Boston-based ICER has been looking at Biogen’s Spinraza and Novartis’ Zolgensma since last year. The extremely high cost of new treatments for rare conditions has placed SMA at the center of the drug affordability debate. SMA can lead to paralysis, breathing difficulty and death within months for babies born with the most serious Type I form of the disease. It is the leading genetic cause of death in infants.

“The price for Zolgensma should be lower than the hypothetical $4-$5 million price the manufacturer has suggested could be justified,” ICER concluded. Zolgensma would be worth $310,000 to $900,000 for Type 1 SMA patients based on the QALY assessment, or $710,000 to $1.5 million using the LYG calculation, ICER said.

“The value measures and thresholds employed by ICER in this report are designed around the status quo of chronic care management and cannot possibly capture the full benefits of disease-modifying treatments delivered as a one-time administration,” Novartis said in a statement.

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