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.
This article is accessible to registered users, to continue reading please register for free. A free trial will give you access to exclusive features, interviews, round-ups and commentary from the sharpest minds in the pharmaceutical and biotechnology space for a week. If you are already a registered user please login. If your trial has come to an end, you can subscribe here.
Login to your accountTry before you buy
7 day trial access
Become a subscriber
Or £77 per month
The Pharma Letter is an extremely useful and valuable Life Sciences service that brings together a daily update on performance people and products. It’s part of the key information for keeping me informed
Chairman, Sanofi Aventis UK
Copyright © The Pharma Letter 2025 | Headless Content Management with Blaze