January 17, 2025
Today, the Partnership to Improve Patient Care (PIPC) issued a statement on the selection of drugs subject to Medicare price negotiations in 2027.
CMS also recently released its explanations for its first round of maximum fair prices (MFPs). PIPC was concerned to see that several of these explanations referenced the Institute for Clinical and Economic Review (ICER) and the National Institute for Health and Care Excellence (NICE). Both entities inherently devalue people with disabilities, relying on measures that fail to recognize how people with disabilities and chronic conditions and their families value and perceive their quality of life. Federal law bars the use of QALYs and similar measures in making Medicare reimbursement and coverage decisions. Federal Section 504 nondiscrimination regulations similarly bar the use of such measures across federal programs. Transparency of the process is a significant priority to the patient and disability communities, including insight about the evidence being considered and the standards set by CMS for high-quality and patient-centered evidence. We were very concerned to see ICER and NICE cited and urge CMS to avoid relying on outside research entities whose methods inherently devalue the lives of people with disabilities as they review the second list of drugs.
Patient and disability experts are in an excellent position to help guide CMS to more appropriate data sources and provide feedback to ensure that CMS’ decision-making does not create more challenges for patients to access their needed treatments. We look forward to working with the incoming administration on setting explicit standards for what data will be considered high-quality and centered on patients and people with disabilities as we work together to ensure the Medicare negotiation program does not entrench a health system of devaluing people living with disabilities and chronic conditions.