The Rare Disease Company Coalition Submits Comments on Oregon’s Application for a Section 1115 Demonstration Waiver

Earlier this month, our Coalition expressed concern to the Oregon Health Authority (OHA) on the proposed renewal and amendment of its Section 1115 waiver. We are a Coalition of biotech companies dedicated to the research, development and delivery of innovative treatments for rare diseases with over 225 rare disease development programs in process, we are deeply concerned about the impact of the proposed closed formulary provisions on the rare disease community.  The proposal would limit coverage to one drug per therapeutic class and exclude drugs approved via the accelerated approval pathway.  93% of rare diseases do not have a single FDA approved treatment and limiting coverage for Medicaid beneficiaries that live with a rare disease jeopardizes patient health while threatening to curtail innovation.

We urge our Oregon-based partners, advocates, individuals living with rare diseases, and their caregivers to contact the Governor and their state legislators to voice their concern with this proposed amendment. Limiting Medicaid coverage for viable treatments would have a devastating impact on patients benefiting from this innovation and create a greater healthy equity divide, all while resulting in limited budget savings. This proposal is the wrong solution for patients.

Contact Information:
Governor Kate Brown
Submit comments online at:
Call directly at (503) 378-4582

To find your state legislator, please visit

Click here to download the letter submitted from our Coalition to OHA on January 7, 2021.