Nov. 2, 2017
Posted by Lisa Sencen
Washington, D.C., November 2, 2017—The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, issued the following statement in response to the release of the Tax Cuts and Jobs Act, and the proposed repeal of the Orphan Drug Tax Credit (ODTC):
“Today, the House Ways and Means Committee released a draft of the Tax Cuts and Jobs Act, a comprehensive proposal to reform the U.S. tax code. Within this proposal, the Committee proposes to repeal the Orphan Drug Tax Credit.
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. 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.
The rare disease patient community, comprised of 30 million Americans, emphatically supports this life-saving tax credit, as evidenced by a letter sent to Congressional leaders signed by over 140 rare disease patient organizations in support of the ODTC. Within the last week, rare disease advocates have sent over 500 letters to Congress in support of the ODTC, and many others have called their elected representatives to show their support.
Over 95% percent of individuals with a rare disease are still waiting for a treatment. Now is not the time to move backwards. We strongly oppose the proposed repeal of the Orphan Drug Tax Credit within the Tax Cuts and Jobs Act, and we implore the House of Representatives to reconsider.”