THANK YOU, GOVERNOR SPANBERGER! RAAP Applauds VA Governor Spanberger's PDAB Veto

WASHINGTON, May 20, 2026 /PRNewswire/ -- The Rare Access Action Project (RAAP) today thanked Virginia Governor Abigail Spanberger for standing with patients and vetoing legislation that would have created a Prescription Drug Advisory Board (PDAB) which had raised significant concerns among rare disease patients and advocates regarding future access to specialized therapies.

RAAP, whose efforts in conjunction with patients and patient advocates lead the way towards the Governor's decision to veto the PDAB legislation, had voiced concerns that the legislation included provisions allowing for the potential implementation of Upper Payment Limits (UPLs), including mechanisms tied to Medicare's Maximum Fair Price (MFP) framework established under the Inflation Reduction Act. Patient advocates warned that applying these policies at the state level could create unintended consequences for individuals with rare diseases as well as other patients who rely on complex, specialized treatments.

"Thank you, Governor Spanberger! Your veto demonstrates thoughtful leadership and a commitment to protecting patient access," said Michael Eging, Executive Director of the Rare Access Action Project. "Patients with rare diseases often have few, if any, treatment alternatives available to them. We appreciate the Governor's recognition that policies involving government-imposed payment limits deserve careful study to ensure they do not create barriers to care or undermine access to lifesaving therapies."

"While everyone agrees that healthcare affordability must remain a priority, solutions should not come at the expense of patient access," said Eging. "As the governor pointed out, based on the experiences of other states, MFP based UPL policies are not the answer. We are grateful that Governor Spanberger listened to patients, caregivers, and advocates who shared their personal stories and raised concerns about the potential impact this PDAB legislation could have had on the rare disease community."

RAAP also extended its sincere thanks and appreciation to the broader patient and medical professional community who engaged policymakers throughout the legislative process.

Eging concluded, "I want to personally thank the patients, caregivers, and advocates who stepped forward to educate policymakers and share their experiences. Their voices played a critical role in ensuring decision-makers, most notably Governor Spanberger, understood the real-world implications PDAB policies can have on patients and families. This hard-fought victory is for them and because of them. Virginia made substantial gains this season tackling patient costs for medicines, and we look forward to working with the General Assembly and the Governor to build on the progress."

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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)