We invite you to join us as we engage with patient advocates and stakeholders, sharing insights about ongoing legislation in key states, current PDAB decisions, preparations for the 2025 legislative session, and proactive strategies.

This is a follow-up to our January workshop, discussing how PDABs impact the rare disease community. We update attendees with our work in states with active PDABs and legislation.

Join the Rare Action Access Project ( RAAP) for an important and timely webinar on Prescription Drug Affordability Boards or “PDABs.” Since 2016, state policymakers have contemplated several methods (e.g., manufacturer transparency bills) aimed at reducing spending and costs associated with prescription drugs that the state deems “unaffordable” for state purchasers and patients. States are increasingly turning to PDABs to address prescription drug spending; in 2023, at least 11 states considered or are considering PDAB legislation. The specific duties of PDABs and similar groups may vary from state to state; however, most possess the authority to review the cost of prescription drugs, assess their affordability, set upper payment limits (UPLs), engage with drug manufacturers, and advocate for transparency in prescription drug pricing. While the intention behind PDABs is to ensure that drugs are accessible, we at RAAP believe that efforts to control drug prices through a PDAB are flawed and will inevitably harm innovation and actually limit patient access to the most innovative lifesaving therapies for rare diseases.

Rare Access Action Project’s 2023 Fall Policy Conference covers the implications of the IRA on Rare Disease Drug Development and Innovation, modernizing the approach to Newborn Screening and Genetic Testing, and an overview of State Health Issues for 2023 plus the outlook for 2024 including RDACs and PDABs. This event brings together legislative stakeholders, industry experts, state and federal panels, and patients to discuss access challenges and solutions.