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Take advantage of
support offerings like:

  • A dedicated support team, including a Patient Resource Navigator and CSL Case Manager
  • Insurance assessment to investigate coverage and explain your benefits
  • Logistics and travel support
  • Determination of eligibility for financial assistance programs
  • Ongoing commitment to providing additional support and resources
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Enroll today for support throughout your
treatment journey with HEMGENIX

Patient Information

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Are you 18 or over and living with hemophilia B?*

Thank you for your interest in HEMGENIX!

Enrollment in HEMGENIX Connect is only available to people 18 years of age or over and living with hemophilia B.

Which number do you prefer we contact?*

These initials denote that I authorize HEMGENIX ConnectSM to leave information regarding my HEMGENIX prescription, insurance coverage, and Specialty Pharmacy Provider on my voicemail or alternate contact (participation optional).

These initials denote that I authorize CSL Behring, HEMGENIX Connect, and its other service providers to send me autodialed and prerecorded marketing calls and text messages at the telephone number(s) that I provide. I understand that I may opt-out of autodialed and prerecorded marketing calls and text messages at any time through the means by which I have been contacted (participation optional).

These initials denote that I authorize HEMGENIX Connect to leave information regarding my HEMGENIX prescription, insurance coverage, and health information to the following individual (participation optional).

To help your CSL Case Manager conduct a benefits investigation for HEMGENIX, please select your type of insurance and fill out the corresponding section of the form below*:

If you are enrolled in a private, non-governmental insurance plan (such as an employer-sponsored plan, including FEHB program, or plans from the healthcare marketplace), please attach a photo of the front and back of your insurance card OR fill out the section below:

Please either attach a photo of the front and back of your insurance card OR fill out the section below

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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.

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.

Please see full prescribing information for HEMGENIX.

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

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

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