Sign-on Letter to CMS to Protect Incentives for Rare Disease Drug Development

Please consider adding your organization to the letter to Centers for Medicare and Medicaid Services (CMS) being circulated by Global Genes Project, encouraging the agency to revise its proposed rule on Medicaid “line extension” rebates and exclude orphan drugs from the scope of this policy.

This discretionary decision would greatly encourage the development of new treatments for rare diseases, while maintaining the intent and appropriate scope of the line extension rebate.   Failure to remove orphan drugs from the scope of the policy could result in creation of an economic barrier to rare disease therapeutic innovation in conflict with the Orphan Drug Act.

A two-page summary of the issue is available here: Line Extension Patient Group Letter

The patient group sign-on is available here:  Line Extension Two-Pager_community sign on

Please contact Carrie Ostrea at by Monday, March 31 to add your organization to the letter.