The EACH Coalition submitted comments to the Colorado board on the updated redline versions of the affordability rule and policy and procedures prior to deliberations on both during the December 6 meeting. The Coalition was joined by 40 organizations that comprise its national network.
The proposed rules do not recognize patient organizations as a key stakeholder or provide adequate opportunity for patient organizations to provide information to the board during the cost review process. This is reflective of board members’ expressed bias against non-profit organizations whose corporate donors include pharmaceutical companies.
The letter urged the board to include patient organizations as a key stakeholder group throughout affordability reviews stating:
“[I]t is especially important that organizations that represent the population of patients who rely on the medication under review can provide specific insights to the board throughout the process. Therefore, we strongly urge that the board ensure all stakeholders, including patient organizations, are afforded the same opportunities to provide input to the board on all topics.”
“We urge you to add patient organizations as a vital stakeholder group throughout both documents, providing fair and equal participation for everyone.”
“Failing to allow patient organizations to also provide input on the drugs under review would unnecessarily limit a vital source of information on patient experiences and needs.”
At the request of the board during testimony Q&A during the October meeting, the coalition also provided a copy of the questions included in the PIC survey on drug affordability and access.
UPDATE: In following meetings, the Colorado PDAB voted to approve the rules and regulations without addressing the issues raised by the coalition or acknowledging the importance of patient organizations by recognizing them as a key stakeholder, thus continuing to limit and discount patient organization participation in drug affordability reviews.