Letter to the Community regarding HEMGENIX supply and patient access
Our Continued Commitment to the Hemophilia B Community: An Update on HEMGENIX® (etranacogene dezaparvovec-drlb) Supply and Patient Access
Dear Hemophilia B Community,
In March, we shared an update regarding HEMGENIX® (etranacogene dezaparvovec-drlb) availability and our efforts to support people living with hemophilia B while maintaining the highest quality standards for this one-time gene therapy. Since then, we have provided monthly updates to healthcare professionals and patient organizations to enable them to support patient care. Today, we are pleased to share an encouraging update on the progress made over the past several months.
Since reestablishing limited supply in April 2026, HEMGENIX has been delivered to support treatment for 22 people living with hemophilia B in commercial and clinical trial settings. This includes the first commercial HEMGENIX treatment in Canada, and the first-ever adolescent to receive a gene therapy in a global clinical trial for hemophilia B, and continued experience across new and established treatment centers. Together, these achievements reflect our steadfast commitment to supporting the hemophilia B community. More than 100 people with hemophilia B have now received commercial treatment with HEMGENIX globally since approval, underscoring the continued progress being made in expanding access.
Our highest priority remains supporting eligible people living with hemophilia B and healthcare providers to plan and deliver their hemophilia care. We remain committed to actively managing HEMGENIX supply so they have the confidence to continue shared decision-making conversations, complete evaluations, testing and other readiness activities to enable appropriate patient access.
We will continue to keep the community informed as additional updates become available. Thank you for your continued trust and partnership.
Sincerely,
Dr. Deborah Long
SVP, Medical Affairs
CSL
The Coalition for Hemophilia B is a national nonprofit organization based in New York City. For more than 35 years, CHB has been dedicated to serving patients and their families affected by hemophilia B, providing patient programming, education, financial assistance, and advocacy nationwide. Learn more at hemob.org.