Say hello to the world’s most expensive drug, courtesy of Novartis

FDA approval of the world’s most expensive drug sparks hope for SMA patients... and debate over healthcare costs.


May 30, 2019

The FDA approved Zolgensma — Novartis’ gene replacement therapy drug that can cure pediatric spinal muscular atrophy (SMA) in a single treatment. For susceptible little ones and their families, it’s a huge stride in the fight against a leading cause of infant mortality.

… But the $2.1M price tag is a bitter pill to swallow 

Drug pricing watchdog ICER deems the cost appropriate based on initial clinical success. Given Novartis’s previous $4-5M prediction, ICER hails the “fair” price as a win for patients and the health system.

Cue the healthcare debate

Despite Novartis’ promise of annual payment plans and rebates, some critics point to the lower costs of competitor Biogen’s Spinraza as proof of overpricing. Novartis says its one-time treatment is more cost-effective and less physically taxing than Spinraza’s long-term spinal injections.

Others accuse Novartis of looking to reward investors — given that Zolgensma was largely developed by its recently acquired AveXis.

Is there really a ‘fair’ price when it’s life and death?

Broadly speaking, a wholly business-centric mindset posits that any company’s purpose is to maximize shareholder returns. But when (tiny) lives are at stake, it’s hard to just turn the other check.

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