Senate drops orphan drug bill amendment opposed by patient advocates

18 June 2025

A controversial proposal to change the Inflation Reduction Act’s pricing framework for rare disease drugs has been dropped from the Senate’s reconciliation package, marking a win for patient advocacy groups that lobbied against it. The ORPHAN Cures Act, which sought to shield some rare disease drugs from Medicare price talks, was notably absent from the text released this week by the Senate Finance Committee.

Patients for Affordable Drugs Now (P4ADNow), a Washington-based nonprofit, welcomed the omission, characterizing it as a patient-led victory over what it called industry-friendly legislation. “This decision helps protect the popular and effective Medicare Negotiation program and its promise of lower prescription drug prices for millions of Americans on Medicare,” said executive director Merith Basey. She added that the group would continue pushing back against similar efforts that may re-emerge in future legislation.

The group, which campaigns for lower drug prices, said advocates had sent more than 13,000 letters and met with lawmakers in recent weeks to urge removal of the provision. The bill would have allowed some high-cost drugs with multiple orphan indications to dodge pricing negotiations, even if they brought in substantial Medicare spending. According to P4ADNow, the measure risked adding nearly $5 billion in federal costs over a decade, citing estimates from the Congressional Budget Office.

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