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Ned Sharpless weighs in on gene therapy pricing debate, suggesting ‘the messaging got lost’ | Endpoints News

PHILADEL­PHIA — You know the drug pric­ing de­bate has reached a new height when the act­ing FDA com­mis­sion­er starts to chime in on a pub­lic fo­rum.

In re­sponse to a ques­tion on gene ther­a­pies posed dur­ing a fire­side chat at the an­nu­al BIO con­ven­tion, Ned Sharp­less ac­knowl­edged the im­por­tance of dis­cussing cost — though it doesn’t fall un­der the FDA’s purview — but said he’s “a lit­tle dis­ap­point­ed” in the cov­er­age of the re­cent ap­proval of No­var­tis’ spinal mus­cu­lar at­ro­phy treat­ment, Zol­gens­ma. The treat­ment was priced at $2.12 mil­lion spread out over a 5-year in­stall­ment.

“This is a com­plete­ly nov­el, al­most mag­i­cal mir­a­cle that ends a dev­as­tat­ing dis­ease for lots of lit­tle kids and the thing you care the most about is the price? I mean, re­al­ly? If you’re so cyn­i­cal you can’t see how won­der­ful and great that is […] you need to re-wear your hap­py hat,” he said.

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Ned Sharpless weighs in on gene therapy pricing debate, suggesting ‘the messaging got lost’ – Endpoints News.

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