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      RAAP Applauds VA Governor Spanberger's Action on PDAB & Capped Co-Pay Legislation

      (PRNewsfoto/Rare Access Action Project (RAA)

      News provided by

      Rare Access Action Project (RAAP)

      Apr 15, 2026, 10:30 ET

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      WASHINGTON, April 15, 2026 /PRNewswire/ -- The Rare Access Action Project (RAAP) today praised Virginia Governor Spanberger's decision to amend legislation that creates a Prescription Drug Advisory Board (PDAB), ensuring controversial provisions will undergo further study and require future legislative approval before taking effect. 

      The Governor's amendments to SB 271 place a reenactment clause on the bill's upper payment limit (UPL) authority tied to Maximum Fair Price (MFP) as created by the Inflation Reduction Act for the Medicare program. This action requires the policy to be studied throughout 2026, with findings reported to the General Assembly by December 2026. The legislature must vote again during the 2027 session to reauthorize those specific provisions before they can be implemented.

      "Today is a tremendous win for patients in Virginia," said Michael Eging, Executive Director of the Rare Access Action Project. "The Governor's action ensures that the MFP-based UPL policy will receive the careful, transparent review it deserves, and requires the General Assembly to examine the study and reconsider these provisions in 2027."

      RAAP has raised concerns that applying mechanisms such as UPLs -particularly those tied to MFP benchmarks - could unintentionally restrict access to specialized therapies developed for smaller patient populations. Why Medicare's Maximum Fair Price Is Not a Model for State Drug Pricing - Rare Access Action Project

      "I want to extend my sincere gratitude to the entire RAAP community that shared their experience with legislators and the Governor to assist them in understanding the implications of an experimental upper payment limit on patient access. RAAP also thanks Governor Spanberger for her leadership and willingness to stand up on behalf of patients with rare diseases."

      In addition, RAAP celebrated another milestone: the signing of a capped copay bill (HB 625 and SB 161) into law, marking a series of major victories for patients living with rare diseases across Virginia. The bipartisan leadership within the legislature to tackle affordability and out of pocket costs during this session has been critical to passage of this legislation. 

      Eging concluded, "The capped copay legislation is another significant victory. Patients in Virginia— especially those with rare diseases—will have greater certainty and reliability when it comes to their out-of-pocket costs. The bipartisan leadership in the General Assembly took a major step forward for patient affordability. We are deeply grateful to Blood Cancer United and the unwavering efforts of patients who helped get this across the finish line."

      RAAP, the Rare Access Action Project, is a coalition of patient and life sciences stakeholders that explore creative policy solutions to address structural issues in access and coverage. Our priority is to help ensure rare disease patients have access to the care and treatments they need.

      SOURCE Rare Access Action Project (RAAP)

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