Kim Phelan Speaks at Congressional Briefing on Gene Therapies

by Glenn Mones

Kim Phelan, fourth from left.

May 2024

The Coalition for Hemophilia B’s CEO, Kim Phelan, represented our community speaking at a Congressional briefing on how the Medicaid Rebate Program changes will increase barriers patients face to accessing cell and gene therapies. The panelists discussed which policies are needed to improve patient access, such as enabling value-based payment arrangements and addressing cross-state Medicaid barriers.

The briefing also addressed patient and advocate perspectives on how changes could impact patient access. IGT and ARM brings together experts from across the healthcare system as well as patients and others to advocate for a modernized policy framework that encourages innovations and promotes patient access to the treatments we and others need.

Kim’s presentation was coordinated with the assistance of James Romano, CHB’s advocacy and policy “man in the field.”Kim had the opportunity to speak about the importance of gene therapy to our community, with a special emphasis on access and reimbursement. Kim, along with other panelists and IGT members, made a visit to key legislators on Capitol Hill later that afternoon.

Earlier that day, Kim and Jim also went separately to meet with legislators to speak about having them sign the “Help Copays Act (H.R. 830). Stay tuned for more information about this issue as it becomes available.