EveryLife Foundation Joins Forces with NORD and Leading Patient Orgs to Address Technical Changes to IRA

EveryLife Foundation for Rare Diseases has sent a joint letter to Congress urging consideration on two essential technical corrections to the orphan drug exemption of the Inflation Reduction Act (IRA). These corrections are crucial in addressing unintended consequences that currently impact the development of therapies for rare diseases. The letter was sent in conjunction with National Organization for Rare Disorders (NORD) and 170 patient organizations, including the ALS Association, American Cancer Society Cancer Action Network (ACS CAN), Friedreich’s Ataxia Research Alliance (FARA), The Leukemia & Lymphoma Society, National Health Council, and an impressive alliance of 163 other patient organizations.

The IRA, while a significant legislative achievement, inadvertently poses challenges to rare disease therapy development. It includes provisions for Medicare drug price negotiation, which, while beneficial in many aspects, may inadvertently diminish incentives for rare disease therapy development. For a details on the IRA and its implications, please visit our background information page.

To further shed light the issues at hand, we have also prepared a comprehensive one-pager, which can be accessed here. This document succinctly explains the technical aspects and the potential impact of the IRA on rare disease therapy development.

This partnership marks a pivotal step in our ongoing commitment to advocate for the rare disease community. By addressing these critical issues, we aim to preserve the momentum of rare disease therapy development and ensure that incentives for such vital work remain strong.

We call upon our community members, stakeholders, and the public to join us in this crucial advocacy. Together, we can make a difference and continue to foster an environment where innovation and hope thrive for those affected by rare diseases.