Today, NORD joined over 140 patient organizations in sending a letter to Congress in support of the Orphan Drug Tax Credit (ODTC). We are extremely grateful to all those organizations that joined us and lent their support. It is vital that the Orphan Drug Tax Credit remains in place, and the rare disease patient community will continue to fight for this life-saving incentive.
We will continue to make our voices heard as Congress considers tax reform proposals. Stay tuned for further updates and advocacy opportunities by signing up to receive policy alerts from NORD.
To view or share the letter, please click here.
Why is the ODTC Important for Rare Diseases?
Without the ODTC, one-third fewer orphan drugs would be developed going forward.
The ODTC allows drug manufacturers to claim a tax credit of 50 percent of the qualified costs of clinical research and drug testing of orphan drugs (drugs for diseases affecting 200,000 Americans or fewer). The ODTC is part of a package of provisions enacted in 1983 in the Orphan Drug Act (ODA) that provides incentives for drug companies to develop products for rare diseases. This legislation has been extremely successful.
In the decade before the ODA, only 10 medicines were developed by industry for rare diseases. Since 1983, however, more than 3,500 potential treatments have been designated as an orphan drug, and more than 500 orphan therapies have been approved by FDA. This is a direct result of the incentives provided by the ODA, including the tax credit.