By Glenn Mones

The Coalition for Hemophilia B (CHB) had the privilege of representing our members at an invitation-only Gene Therapy Town Hall Meeting. It was hosted by the Hemophilia Alliance on June 20 and 21 in Chicago. The Hemophilia Alliance is a not-for-profit organization that comprises federally funded hemophilia treatment centers (HTCs) that either have, or are seeking to have, pharmacy programs under Section 340B of the Public Health Service Act. CHB was represented by Advocacy Director Glenn Mones.

The main purpose of the meeting was to learn about a reimbursement model for gene therapy in which the HTCs take the principle role in providing access to eligible patients who want one of the new treatments. The model has many advantages including consistency in the way the treatment is administered and in appropriate follow-up over time.

In addition to the national patient organizations who opened the meeting, the more than eighty attendees included representatives from ATHN (the American Thrombosis and Hemostasis Network) and 44 HTCs including twenty-five doctors, nurses, pharmacists, and administrative staff.

There will be many more discussions in the months to come on this and other import related topics. The Coalition for Hemophilia B will work to keep our members informed as these discussions progress.