Congress is in the process of considering the Build Back Better Act. Unfortunately, the House Ways and Means Committee's portion of this legislation would change the Orphan Drug Tax Credit (ODTC) in ways that would likely reduce the ability of more rare disease patients to have access to an FDA approved drug for their specific condition. NORD is deeply concerned about these possible changes and we need your help! 

The ODTC is crucial to the rare disease community because it helps incentivize drug manufacturers to seek FDA approval for orphan indications by allowing them to claim a 25% tax credit for qualified clinical testing expenses for each rare indication. The Ways and Means Committee's portion of the Build Back Better Act would only allow drug manufacturers to claim this tax credit for a drug's first orphan drug indication, and not any subsequent rare indications. Given that 90% of rare diseases lack an FDA approved treatment, NORD fears the changes to the ODTC being considered could have a devastating impact on the millions of rare disease patients who continue to hope for a safe and effective therapeutic option to treat their specific condition.

Please ask your members of Congress to maintain this critical incentive as it is currently in law and ensure more rare disease patients can one day can have access to an FDA approved drug. 

Together we are strong,

The NORD Policy Team