Orphan Drug Makers Would Escape Price Reporting Requirements Under House Bill
Executive SummaryLegislation pending in US House Energy and Commerce Committee would exempt drugs treating diseases with less than 200,000 patients from needing to justify price increases.
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HHS lacks authority to require drug price disclosures in TV ads, judge rules. Even if legislation were to explicitly give the Trump Administration such authority, First Amendment issues would still linger.
The total cost of Zolgensma is more than $2m – in line with estimates – or $425,000 annually for five years if payers choose an annuity-like payment plan. Novartis is also negotiating value-based reimbursement agreements for infants treated with the one-time infusion.