HFA was informed by Genentech on March 26, 2018, that a total of five patient deaths have occurred while the patients were using Hemlibra (emicizumab-kxwh). Genentech has little information that they can presently share about the circumstances surrounding the most recent patient deaths; however, Genentech could confirm that the patients had received Hemlibra as part of compassionate use and expanded patient access. Genentech has a Medical Communications line at 1(800)-821-8590 for patients, concerned community members, and healthcare providers who seek further information. HFA encourages you to reach out to Genentech and/or to your treating physician if you have questions or concerns.
On February 22, 2017, HFA shared about the death of a patient who was a part of the HAVEN 1 emicizumab trial. Because the other 4 deaths have been under expanded patient access, or compassionate use, there has been little communication available from Genentech.
HFA recognizes that there has been robust discussion on social media as the community has been made aware of this and other adverse events surrounding Hemlibra. We will continue to monitor the situation and share information as we learn more.
UPDATE, 3/28/2018: Genentech Offers Hemlibra Update