 | On September 8, 2023, PIPC joined more than 1400 researchers, organizations and individuals in expressing opposition to the NIMHD Advisory Committee's decision to reject a recommendation to add people with disabilities as a health disparity population. |
Over 75 Leading Patient Groups Join PIPC Comment Letter on ICER 2024 Value Assessment Framework6/30/2023
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.
 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:
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