Congressional Hearing Pressures FDA to Improve Compassionate Use Program

The Senate was urged last week to permanently reauthorize the Creating Hope Act, which would provide market incentives to pharmaceutical companies to develop drugs for pediatric rare diseases, ahead of a March 9 markup of the bill by the Senate HELP Committee.

Nancy Goodman, executive director of the nonprofit Kids v. Cancer, also called for the passage of the Andrea Sloan CURE Act, which would give patients and doctors more information about how to access experimental treatments, while providing additional details on the compassionate use program to drugmakers. She made her plea during a hearing of the Senate Committee on Homeland Security & Governmental Affairs.

Provisions of both acts were included in the 21st Century Cures Act, which the Senate is now carving up.