Recently reports have been shared on social media about deaths relating to a new treatment for haemophilia A, Emicuzumab (Hemlibra). This has been used in the UK for treatment of people with Haemophilia A and inhibitors since the start of last year.
Earlier this year its license was extended to cover prophylaxis for people with severe Haemophilia A. It is currently being considered by NHS England for routine commissioning. The extension of its license follows the publication of a phase 3 trial last September.
Like all new treatments there is very strict scrutiny of Emicuzumab. Its effectiveness and safety continues to be carefully monitored. Safety monitoring data are regularly published and these data contains information on serious adverse events including deaths of people who have taken Emicuzumab. Worldwide over 2,500 people have been using Emicuzimab. Although a number of deaths have been reported, these were not felt to relate to the Emicuzumab treatment.
If you are currently taking Emicuzumab and are concerned or have questions, please do talk to your haemophilia team. It is important people don’t stop taking their treatment without a discussion with their haemophilia team.