What publicly funded research went into Zolgensma?
The NIH invested more than $450 million in SMA-related science and parent-led charities funded early research at Nationwide Children's Hospital — with no conditions protecting public interests or linking price to that investment when AveXis commercialised the product.
ProPublica reported that the NIH invested more than $450 million in SMA-related science, and that a parent-led charity raised about $2 million for early research at Nationwide Children's Hospital that underpinned the therapy. When AveXis commercialised the product, there were no conditions protecting the charities' financial interests or linking the price to public investment. Novartis also received a pediatric priority review voucher, a government incentive that can be sold for around $100 million or used to speed review of another drug. Critics argue that when the public funds a large share of the underlying science, and the company receives valuable regulatory incentives, the resulting price should reflect that shared investment. Novartis argues that commercial development, manufacturing and clinical trials required billions in private capital and risk.