​In a letter to the Institute for Clinical and Economic Review (ICER), the Partnership to Improve Patient Care (PIPC) offered feedback on ICER’s draft evidence report for Cystic Fibrosis treatments. PIPC Chairman Tony Coelho was critical of ICER’s QALY-based approach in its assessment, noting that the QALY disservices those with chronic and disabling conditions such as CF. Chairman Coelho also took issue with ICER’s willingness to prioritize financial savings over patient life and well-being. “ICER needs to reconsider its use of the QALY and model construction to ensure it is capturing an accurate picture of the value of treatments to patients,” wrote Chairman Coelho. “We disagree, as do the patients and families impacted by your analysis, that ICER should have the authority to determine the value of a patient with cystic fibrosis.

On Mar. 12, PIPC joined nearly 150 leading patient advocacy groups in signing on to a letter of support for the Strengthening Innovation in Medicare and Medicaid Act (H.R. 5741). Sponsored by Reps. Terri Sewell (D-AL) and Adrian Smith (R-NE), this bill would make significant strides in addressing patient and provider concerns about the impact of the Center for Medicare and Medicaid Innovation (CMMI) demonstrations on access to care and the quality of care. ​“We are concerned that too many CMMI models endanger patient access to healthcare providers and medically necessary treatments and create unnecessary obstacles for vulnerable patients,” the letter states. “H.R. 5741 provides safeguards for CMMI to ensure CMMI demonstrations are patient-focused and benefit beneficiaries.”