The BENEFIT Act, HR 4472 / S373, has received a bill number in the US House of Representatives! Representative Doris Matsui (D-CA) introduced the BENEFIT Act mid-July, but with a bill number it’s now easier than ever to ask your elected officials to sign on and support this life-changing piece of legislation. The BENEFIT Act is a bi-partisan piece of legislation that would require that the FDA disclose whether and how patient experience and/or preference data was used in the benefit risk assessment of a new drug. It will ensure that patient voices are being heard and allow for patient stakeholders to continue to work with FDA to refine the data that they need to make decisions. With everything our community has experienced throughout the last year, we know it's more important than ever to have the FDA consider patient experience as a part of their approval process. Help the voices of our community be heard and encourage your elected officials to co-sponsor this bill today!
Encourage your elected officials to support the rare disease community by sending a letter of support: https://p2a.co/p2rB8XJ