PIPC Joins Over Researchers, Organizations and Individuals Opposing NIMHD Exclusion of People with Disabilities
PIPC recently submitted a comment letter to the Food and Drug Administration (FDA) offering comments on FDA's proposed revision of guidance on the voluntary use of patient preference information (PPI) in regulatory submissions. The letter encourages FDA to review and incorporate best practices from several leading organizations as it revises its PPI guidance, including the Patient Centered Outcomes Research Institute (PCORI), Innovation and Value Initiative (IVI), and Everylife Foundation for Rare Diseases.
In a letter to the Institute for Clinical and Economic Review (ICER), the Partnership to Improve Patient Care (PIPC) submitted comments on ICER's assessment of gene therapies for Sickle Cell Disease (SCD).
In a comment letter to the Maryland Prescription Drug Affordability Board, PIPC highlighted concerns of patients and people with disabilities related to the Board's potential use of discriminatory cost-effectiveness analyses.
Patients and People with Disabilities Urge Robust Engagement, Avoid Use of QALYs and Similar Measures in Drug Negotiation
On April 14, 2023, 56 organizations representing patients and people with disabilities sent a letter to CMS related to its guidance for implementation of the Medicare Drug Negotiation Program. The letter to CMS provides the following recommendations and comments: