NPR, November 3, 2017
Sarah Jane Tribble

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[...] In 2018, the U.S. is expected to grant nearly $2.8 billion in orphan drug tax credits to companies, according to estimates from the Treasury Department. And the reduced tax revenue for the U.S. government under the current law would increase every year, to a projected total of $75 billion from 2018 to 2027.

As sales rise, so does the cost of the orphan drug tax credits to the U.S. government. "A billion here and a billion there and eventually it's real money," said Nicholas Bagley, a law professor at the University of Michigan who has studied the credits.

The National Organization for Rare Disorders said in a statement that there would be 33 percent fewer orphan drugs coming to market if the tax credit vanishes, calling it "an unprecedented decrease in the development of these life-improving therapies." NORD said advocates for people with rare diseases had sent over 500 letters to Congress in support of the credit.

The Biotechnology Innovation Organization, a trade group, and 20 individual drug companies, including Novo Nordisk, Horizon and Sanofi, wrote to Congress late last month urging legislators to keep the credit in the tax overhaul bill. BIO vowed Thursday to work with lawmakers to save the credit. [...]

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