by James Romano

CHB Attends Pfizer Advocacy Meeting

By James Romano

In early December 2024, the Coalition for Hemophilia B was invited to attend the Pfizer Rare Disease Advocacy Collaborative. Erica Garber and James Romano represented the Coalition.

The two day event brought together advocacy leaders from the major Rare Disease Advocacy Groups (NORD, the Every Life Foundation and Global Genes; Bleeding Disorder Patient Groups (NBDF, HFA, and the Coalition) as well as other rare disease community organizations such as groups from the Sickle Cell Community and the Amyloidosis Community.

The purpose of the meeting was to meet and understand the Pfizer Team and to discuss health policy in the aftermath of the election.

The first day was devoted to introductions to the Pfizer Staff at the Pfizer Headquarters. More than 30 individual staff members were on hand for discussions, presentations, and fellowship with attendees. The first day was run by Mr. Bert Bruce, U.S. President, Rare Disease at Pfizer.

Each Brand team for the Disease Community spoke, Dr. Burcu Turiakan Diener, VP for the US Gene Therapy department discuss Gene Therapy in the hemophilia community. At the end of the first day there was an interesting discussion on the diversity of Pfizer and their staff that is important to rare communities such as the Sickle Cell Community.

The second day was devoted to federal policy. Pfizer reviewed the election outcomes and the status of important patient legislation such as The Safe Step Act and The Help Copays Act. There was a discussion on dealing with Congress and the new Administration led by representatives of NORD and The Every Life Foundation.

Eboni Morris, formerly of the Hemophilia Federation and now with Pfizer lead a state discussion. Finally, Melissa Bishop Murphy Senior Director of State Government Affairs discussed Pfizer’s Multicultural Health Equity Collective.

The Coalition for Hemophilia B looks forward to partnering with Pfizer on important advocacy issues and engaging with them to improve access to treatments for those living with hemophilia B.