WASHINGTON, D.C. — The ORPHAN Cures Act is proving even more destructive than initially reported. Over the weekend, The Wall Street Journal revealed that the Congressional Budget Office (CBO) will re-score the bill to account for its impact on even more blockbuster drugs, meaning its already massive $5 billion price tag is set to grow.
When first scored, the ORPHAN Cures Act was projected to cost taxpayers nearly $5 billion over the next decade, allowing drugmakers to reap the rewards of a weakened Medicare Negotiation Program. But that initial estimate understated the damage: major high-cost drugs, including blockbusters like Keytruda, weren’t counted in the original analysis. With a new CBO score underway, the full scale of this pharma-backed carveout will soon be clear — and it’s worse than anyone thought.
This carveout is a blatant loophole designed for Big Pharma to protect its monopolies and keep prices artificially high. Pharma’s claim that ORPHAN is necessary to protect rare disease innovation doesn’t stand up to scrutiny either, since Medicare negotiation already preserves all the incentives for rare disease research under the 42-year-old Orphan Drug Act.
This should serve as a warning to Congress: the ORPHAN Cures Act is already funneling billions more to Big Pharma than lawmakers originally understood, doing even greater damage to Medicare negotiation. The last thing patients and taxpayers can afford is another pharma-backed giveaway like the EPIC Act that would hand the industry even more money and further undermine the program’s ability to lower drug price
The Wall Street Journal: Why Drug Prices for Some Big Medicines Will Remain High for a Longer Time
Joseph Walker | August 3, 2025
- “Two little-known provisions in the One Big Beautiful Bill Act signed by President Trump in July will delay Medicare price negotiations for some of the biggest-selling drugs in the world.”
- “Medicare gained the power to negotiate prices on a handful of prescription drugs each year under the Inflation Reduction Act in 2022. The Big Beautiful Bill now puts new restrictions on when and which types of drugs can be negotiated.”
- “The drug industry had long been pushing to include the provisions in the new law that would affect those negotiations.”
- “Dozens of companies, including Merck and AstraZeneca, as well as industry groups such as the Pharmaceutical Research and Manufacturers of America and the Biotechnology Innovation Organization, lobbied lawmakers on the provisions in the first half of the year.”
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