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Insightful Findings on PDABs by RAAP

On August 6, 2025, the Rare Access Action Project (RAAP) made a significant announcement regarding its latest study centered around Prescription Drug Affordability Boards (PDABs). This comprehensive research paper, titled Solving for Access and Affordability: PDABs Are Not the Answer, sheds light on a pressing issue affecting patients, particularly those living with rare diseases. The RAAP firmly believes that the implementation of PDABs does not effectively address the financial struggles faced by these patients in accessing their essential medications.

Michael Eging, the Executive Director of RAAP, emphasized the organization's perspective on PDABs, stating that while they may seem like a promising solution on paper, the reality is far more complex. The challenges presented by PDABs have led to unintended consequences, undermining their intended goals. For instance, New Hampshire, which enacted a PDAB in 2020, rescinded it in 2025, illustrating the difficulties and unfulfilled promises associated with such regulatory measures.

The detailed analysis within the study reveals that PDABs, as currently designed, might not fully grasp the ramifications of their policies, especially concerning vulnerable populations like those with rare diseases. One key area of concern is the implementation of Upper Payment Limits (UPLs), which can significantly restrict patient access to vital treatments. Eging pointed out that while the purported benefits of PDABs appear attractive, the reality of their implementation often falls short, leaving patients at risk of losing access to crucial healthcare options.

Moreover, the study delineates several recommended actions for policymakers:

• - Pause the Expansion of PDABs: A temporary halt is suggested until comprehensive assessments of their impact on rare disease patients are conducted.
• - Incorporate Patient Perspectives: Any affordability reviews should seek direct input from rare disease specialists and patient advocates, ensuring that policies are grounded in real-world patient needs.
• - Exclude Orphan Drugs: Price-setting mechanisms should exclude orphan drugs from their jurisdiction to prevent pricing issues from jeopardizing patient access.
• - Ensure Transparency in Data Modeling: Mandating clarity in the data used for rare disease evaluations is essential for fostering trust and accountability.

Eging concluded with a warning: “PDABs, in their current form, risk sacrificing genuine access for mere appearances. Political motivations can lead to severe consequences for patients. Efforts aimed at cost control must not overshadow the human element or diminish the incentives for innovation in the treatment of rare diseases.”

In its mission, RAAP serves as a coalition designed to explore innovative policy solutions that address the systemic challenges around access and coverage for rare disease patients. It remains dedicated to advocating for the necessary changes to ensure that those living with rare conditions can attain the care and treatments indispensable to their health. As a registered 501 c4 non-profit organization, RAAP continues to fight for better healthcare policies that truly benefit all patients.

In conclusion, the recent RAAP study serves as a clarion call for lawmakers and stakeholders in the healthcare system to reconsider the efficacy of PDABs and to prioritize policies that promote access and affordability for all patients, especially those grappling with the complexities of rare diseases.