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hemgenix-logo-bg mobile-menu-bg HEMGENIX® (etranacogene dezaparvovec-drlb)

CONNECT WITH REAL HEMGENIX PATIENTS

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Talk to other patients about their experiences with HEMGENIX.

Through the HEMGENIX Patient Advocate Program,* people with hemophilia B and their caregivers can speak to others about their treatment with HEMGENIX, ask questions, and share their own experiences.

To connect with a HEMGENIX patient advocate,* simply fill out the form below. To register by phone, or if you have any questions about the program, call 1-844-281-4259.

All fields are required.

Are you over the age of 18?

Are you living with hemophilia B, or are you a caregiver for someone living with hemophilia B?

Have you, or has the person you care for, received HEMGENIX?

By submitting this form, you are consenting to disclose any information provided, including your name, email address, address, telephone number, and any other information (collectively “Personal Information”) to CSL Behring and its representatives, agents, and contractors, including CSL Behring’s support program(s) (collectively “CSL Behring Entities”) and to receive communications with relevant information from CSL Behring Entities. You may also receive relevant information, including marketing information, from CSL Behring Entities by mail, email, telephone and/or SMS/text message in the future to provide information or to offer enrollment in educational programs and programs intended to benefit patients using or eligible to use CSL Behring therapies. You will have the ability to opt out from receiving communications from CSL Behring Entities at any time. CSL Behring and CSL Entities will not sell your personal information.

CSL Behring respects your privacy. For an explanation of how CSL Behring will use the information you are submitting, please view our Privacy Policy.

* Advocates are not healthcare providers or medical experts and are compensated for their participation. For medical questions, you should contact your physician.

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Need additional support? Learn more about and enroll in HEMGENIX ConnectSM

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IMPORTANT SAFETY INFORMATION

What medical testing can I expect to be given before and after administration of HEMGENIX?

To determine your eligibility to receive HEMGENIX, you will be tested for Factor IX inhibitors. If this test result is positive, a retest will be performed 2 weeks later. If both tests are positive for Factor IX inhibitors, your doctor will not administer HEMGENIX to you. If, after administration of HEMGENIX, increased Factor IX activity is not achieved, or bleeding is not controlled, a post-dose test for Factor IX inhibitors will be performed.


HEMGENIX may lead to elevations of liver enzymes in the blood; therefore, ultrasound and other testing will be performed to check on liver health before HEMGENIX can be administered. Following administration of HEMGENIX, your doctor will monitor your liver enzyme levels weekly for at least 3 months. If you have preexisting risk factors for liver cancer, regular liver health testing will continue for 5 years post-administration. Treatment for elevated liver enzymes could include corticosteroids.

What were the most common side effects of HEMGENIX in clinical trials?

In clinical trials for HEMGENIX, the most common side effects reported in more than 5% of patients were liver enzyme elevations, headache, elevated levels of a certain blood enzyme, flu-like symptoms, infusion-related reactions, fatigue, nausea, and feeling unwell. These are not the only side effects possible. Tell your healthcare provider about any side effect you may experience.

What should I watch for during infusion with HEMGENIX?

Your doctor will monitor you for infusion-related reactions during administration of HEMGENIX, as well as for at least 3 hours after the infusion is complete. Symptoms may include chest tightness, headaches, abdominal pain, lightheadedness, flu-like symptoms, shivering, flushing, rash, and elevated blood pressure. If an infusion-related reaction occurs, the doctor may slow or stop the HEMGENIX infusion, resuming at a lower infusion rate once symptoms resolve.

What should I avoid after receiving HEMGENIX?

Small amounts of HEMGENIX may be present in your blood, semen, and other excreted/secreted materials, and it is not known how long this continues. You should not donate blood, organs, tissues, or cells for transplantation after receiving HEMGENIX.

What is HEMGENIX?

HEMGENIX®, etranacogene dezaparvovec-drlb, is a one-time gene therapy for the treatment of adults with hemophilia B who:

  • Currently use Factor IX prophylaxis therapy, or
  • Have current or historical life-threatening bleeding, or
  • Have repeated, serious spontaneous bleeding episodes.

HEMGENIX is administered as a single intravenous infusion and can be administered only once.

Please see full prescribing information for HEMGENIX.

You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch, or call 1-800-FDA-1088.

You can also report side effects to CSL Behring’s Pharmacovigilance Department at 1-866-915-6958.