RAAP Advocacy Highlight - Rare Access Action Project

RAAP LEARNING HUB PRESENTATION: “ADDRESSING ACCESS ISSUES FOR RARE DISEASE PATIENTS”

The Rare Access Action Project (RAPP), sponsored and ran a panel during the Learning Hub portion of the National Conference of State Legislatures (NCSL) Legislative Summit held in Indianapolis, IN. CLICK HERE to see the panel discussion.

RAAP’s Policy Director, Mac Haddow, testified in Utah’s Senate Business and Labor Committee in support of S-139, which ensures patients will continue to have access to their needed medications and stay on their prescribed treatment regimen by ending the practice of Copay Accumulator Adjustment Programs. Click here to see Mac Haddow’s comments

STOP: Accelerated Approval As A Proxy For High Drug Costs Is Misguided

The Rare Access Action Project, (RAAP) submitted comments to the Oregon Health Authority’s (OHA) proposed renewal and amendment of its Section 1115 waiver for the July 1, 2022 – June 30, 2027, demonstration period…

RAAP Public Comments on Oregon Health Authority Waiver Renewal

Dear Director Allen:

The Rare Access Action Project, (RAAP) appreciates the opportunity to comment on the Oregon Health Authority’s (OHA) proposed renewal and amendment of its Section 1115 waiver for the July 1, 2022- June 30, 2027, demonstration period. RAAP agrees with OHA’s focus to maximize continuous and equitable access to coverage and supports OHA’s goal to eliminate inequitable access with strategies to extend and stabilize coverage to every eligible child and adult in Oregon.

RAAP, however, is concerned that OHA’s proposals seeking the authority to implement a closed formulary and limit coverage of drugs approved under the FDA’s accelerated approval pathway will have the opposite result..