The EACH/PIC Coalition submitted comments to the Colorado PDAAC on their proposed recommendations for engaging patients in the cost review process. The letter urges for the implementation of reforms that will increase engagement and improve collaboration between board members and patient organizations.
The letter states:
“We share the council’s commitment to lowering prescription drug costs for Coloradans. Achieving that goal requires a process that starts with and ends with patients. The advisory council and board must focus on patients’ lived experience, their real barriers, and addressing the challenges they report are the cause of affordability issues. We welcome the opportunity to collaborate on designing improved patient engagement processes for future reviews.”
“While we applaud the council for recognizing that patients must be included in the metrics that the board should consider when selecting drugs for affordability review, we caution that providing a summary of patient feedback is not enough. Specifically, the same rigor applied to data collection during drug reviews should also apply at this stage, including clear metrics for evaluating patient responses.”
“However, for this collaboration to be effective, it must be accompanied by a good-faith commitment from board members to respect the contributions of patient organizations. In past Colorado PDAB processes, some patient organizations have experienced skepticism or dismissal of their perspectives. A successful engagement toolkit requires not only strong materials, but also a culture that values and trusts patient-centered expertise.”
“We appreciate the council’s acknowledgment that the board has on more than one occasion demonstrated an attitude of dismissal and distrust towards patient organizations. We broadly agree with the underlying belief of the duality of interest approach – that all stakeholders have merit and deserve to share their views.”
“However, we strongly caution that implementing new disclosure requirements will only be effective if the board first demonstrates a commitment to treating all organizations, even those with “dual interests”, with respect and without presumption of bias. A voluntary disclosure framework can help build trust, but only if it is applied universally and is paired with meaningful cultural change within the board.”