The EACH/PIC Coalition submitted comments to the Colorado PDAB providing input on the patient engagement toolkit developed by the Prescription Drug Affordability Advisory Council (PDAAC).
The letter stated:
We appreciate the efforts of the Prescription Drug Affordability Advisory Council (PDAAC) to improve patient engagement. Representatives from EACH/PIC and other patient organizations have participated in the Stakeholder Working Group because we believe better engagement can help the PDAB understand the real-world affordability and access challenges patients face and identify policy solutions that address those challenges.
Unfortunately, we have significant concerns with the current draft of the PDAB Education & Patient Engagement Toolkit. Patient organizations that participated in the stakeholder process were not provided an adequate opportunity to review and provide feedback on the current draft before it was advanced for final approval. This is particularly concerning because the toolkit itself envisions an ongoing role for community partners and organizations in connecting patients with the board.
More importantly, the current draft does not provide patients with a complete understanding of the board’s work or how its policies may affect them. In particular, it does not adequately distinguish between payer spending and patient out-of-pocket costs when describing Upper Payment Limits (UPLs), nor does it meaningfully address potential unintended consequences for patient access.
As organizations entrusted by patients to provide accurate information and advocate on their behalf, we cannot in good faith distribute or promote educational materials that we believe could leave patients with a misleading understanding of policies that may directly affect their care. We therefore urge the board not to finalize the toolkit in its current form and to provide patient organizations a meaningful opportunity to review and recommend revisions.