Rare Daily Staff

The Tax Cuts and Jobs Act, a Republican proposal to make sweeping reforms to the nation’s tax code, calls for the repeal of the Orphan Drug Tax Credit, widely viewed as a powerful incentive for drug developers to invest in therapies for diseases affecting small patient populations.

The Orphan Drug Tax Credit provides a federal tax credit of 50 percent of clinical drug testing costs for orphan drugs.

“The Orphan Drug Tax Credit is one of the most important incentives for developing therapies for individuals with rare diseases, and its repeal is wholly unacceptable,” said The National Organization for Rare Disorders said in a statement released in response to the proposal. “A repeal of the Orphan Drug Tax Credit would directly result in 33 percent fewer orphan drugs coming to market, an unprecedented decrease in the development of these life-improving therapies.”

More than 140 rare disease groups signed a letter to Congressional leaders last month in support of the Orphan Drug Tax Credit. Within the last week, rare disease advocates have sent more than 500 letters to Congress in support of the credit while others have called their elected representatives to show their support, NORD said.

With more than 95 percent of rare disease patients without an approved therapy to treat their illness, NORD said now is not the time to reverse the progress that’s been made in research and development.

“We strongly oppose the proposed repeal of the Orphan Drug Tax Credit within the Tax Cuts and Jobs Act,” NORD said, “and we implore the House of Representatives to reconsider.”

November 2, 2017

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