SADS Signs-on to Support Benefit Act

This important piece of legislation will advance patient-focused drug development (PFDD) work at the FDA. Past acts have spurred much progress, and the FDA now works closely with patient advocacy groups on developing and listening to Patient Focused Drug Development. We believe now is the time to take that work to the next step.


The BENEFIT Act 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. This 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.  It’s been introduced in Senate bill 373.  When co-sponsored in the House, we will update you to when to contact your Congressional representative.

Download the PDF here:
 BENEFIT Act Bill Language

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