Make Your Voice Heard on New IRA Medicare Drug Price Negotiation Program

For the first time, the Centers for Medicare & Medicaid Services (CMS) will be able to negotiate the prices of certain prescription drugs. Created as part of last year’s Inflation Reduction Act (IRA), the Medicare Drug Price Negotiation Program could have significant impacts on the more than 25 million people living with a rare disease and the ability for some to afford needed treatments.    

Exactly how this program and new law will be implemented is critically important because the vast majority of the 7,000+ rare diseases still don’t have FDA-approved treatments.  NORD believes the law’s success hinges on a careful balance between greater affordability and continued industry investment in rare disease drug development.  

Just as we have for the past 40 years, NORD is taking a leading role to ensure this law ultimately benefits patients and families living with rare disease, and we thank everyone in our community who joined us in taking action. We sent a letter to CMS signed by more than 100 member organizations, detailing the concerns of the rare community regarding the IRA’s implementation. We also mobilized rare disease patients and caregivers, who shared their own messages to CMS about the importance of rare inclusion and considerations for orphan drug development.

Lastly, NORD hosted a webinar with the Centers for Medicare & Medicaid Services where we asked some of the rare community’s most pressing questions about the implementation of the Inflation Reduction Act. Chief of Staff and Senior Advisor for CMS’s Center for Medicare, Kristi Martin, provided answers to NORD’s VP of Policy and Regulatory Affairs, Heidi Ross. Watch our webinar at the top of this page.

Are you interested in getting involved with NORD’s policy efforts? Join our Policy and Advocacy Taskforce here!