Why was Zolgensma's price itself controversial?

At $2.125 million, Zolgensma was the first US drug priced above $1 million and the world's most expensive medicine at launch. ProPublica reported that Novartis assembled academics and consultants to support a value-based price, that executives publicly floated $4 million to $5 million before launch, and that the underlying science was built on more than $450 million in NIH investment in SMA research and charity-funded work. Novartis also received a priority review voucher worth around $100 million.

ICER initially concluded the price should be below $900,000, but after new data it said the final price fell within the upper bound of its revised benchmark, noting Novartis had considered prices approaching $5 million. The debate, therefore, is less about whether the drug works, since it clearly transforms outcomes, and more about how gene therapy prices are set.