Washington, D.C., November 10, 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 Senate Finance Committee’s proposal to substantially weaken the Orphan Drug Tax Credit (ODTC) within its Tax Cuts and Jobs Act:
“On behalf of the 30 million Americans with a rare disease, NORD opposes yesterday’s proposal from the Senate Finance Committee to diminish the Orphan Drug Tax Credit.
This proposal would alter the calculation for determining the tax credit, effectively cutting the incentive in half. Additionally, this proposal aims to limit those who might qualify for the credit, disregarding the possible benefit they might bring to the rare disease community. Finally, this proposal would go into effect immediately, greatly interfering with critical clinical trials already underway.
The Orphan Drug Tax Credit is an absolutely vital incentive. Without the credit, 33 percent fewer therapies could be developed for our patients going forward. Any change to the Orphan Drug Tax Credit that weakens its ability to incentivize development for crucial rare disease treatments is indefensible.
With 95 percent of people with a rare disease still waiting for a treatment, it is essential to maintain a tax credit that encourages the development of new and innovative orphan drugs.
We implore Congress to stand with over 200 patient organizations, stand up for the 30 million Americans with rare diseases, and preserve the Orphan Drug Tax Credit.”