We Work For Health Statement Opposing Amendment to Repeal the ORPHAN Cures Act

We Work For Health issued the following statement ahead of an anticipated vote to repeal the ORPHAN Cures Act in the budget reconciliation bill.

"As the Senate prepares to vote on a series of amendments to the reconciliation bill, we urge lawmakers to reject the Welch amendment, which would repeal the ORPHAN Cures Act — a critical fix to the Inflation Reduction Act that was signed into law last year."

"For the nearly 30 million Americans living with rare diseases, the ORPHAN Cures Act is a lifeline. By ensuring that orphan drugs are exempt from IRA price-setting provisions regardless of the number of rare disease designations a medicine carries, the law preserves the incentives that make it possible to develop treatments for patients who have nowhere else to turn. More than 90% of rare conditions still lack any approved treatment. Repealing the ORPHAN Cures Act would make that number worse."

"Developing medicines for small, underserved patient populations is already among the most challenging and financially uncertain work in biopharma. These patients cannot afford to have their medicines deprioritized because of a policy that discourages the very research they depend on.

"We urge senators to reject this amendment and stand with rare disease patients, their families, and the researchers working to give them hope."