The BENEFIT Act, HR 4472 / S373, has obtained more bi-partisan support in the US House of Representatives! Representative Doug LaMalfa (R-CA) has signed on to show his continued support for the rare disease community. 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