Story perspectives

Orphan Cures Act Costs Soar to $8.8 Billion

10/22/2025

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Summary

Story summary

The Congressional Budget Office now estimates the ORPHAN Cures Act will cost taxpayers $8.8 billion over the next decade, nearly double the initial $5 billion.
The increase arises from high-priced drugs, such as Keytruda, exempt from Medicare price negotiations.
Critics, including Merith Basey (Patients for Affordable Drugs Now), say the act benefits Big Pharma.
Advocacy groups call for stronger Medicare price negotiations and oppose loopholes that protect profitable drugs.

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Story summary

The Congressional Budget Office now estimates the ORPHAN Cures Act will cost taxpayers $8.8 billion over the next decade, nearly double the initial $5 billion.
The increase arises from high-priced drugs, such as Keytruda, exempt from Medicare price negotiations.
Critics, including Merith Basey (Patients for Affordable Drugs Now), say the act benefits Big Pharma.
Advocacy groups call for stronger Medicare price negotiations and oppose loopholes that protect profitable drugs.