Ten Years of Making an Impact in the Hemophilia B Community

Published on: March 28, 2024
Alicia, Landon, CJ, and Alex smile for a headshot photo
Alicia, Landon, CJ, and Alex, living with hemophilia B, United States

On March 28, 2014, the US Food and Drug Administration (FDA) approved the first extended half-life therapy for hemophilia B, transforming the treatment landscape at the time.1 Since then we’ve remained committed to supporting the health and lives of people with rare blood disorders.

Hemophilia B, a rare condition in which a person’s blood does not clot properly, currently impacts more than 7,000 Americans.2-4 People with hemophilia B have low levels of a clotting protein called factor IX, which increases their risk of spontaneous bleeding, as well as excessive bleeding following injuries or surgery.2,4

In the 10 years since its FDA approval, more than 1,400 people with hemophilia B have been treated with Alprolix® [Coagulation Factor IX (Recombinant) Fc Fusion Protein] to help control and prevent bleeding.1,5,6 In honor of this anniversary, hear first-hand from hemophilia B patients and caregivers about the impact of bleed protection and convenient/flexible dosing schedules delivered by Alprolix.7,8

Alex’s Story: Proactively Managing Hemophilia B from Colombia to the US

Alex and his wife wearing helmets while smiling for a picture and riding on Alex’s motorcycle.

Alex, living with hemophilia B, United States

Alex was diagnosed with hemophilia B at birth. During his childhood in Colombia, Alex was very active exploring the outdoors, but often experienced bleeding episodes due to the limited access to treatment options at the time. After moving to the US, the disorder began to impact his ability to work and make a living.

Following the birth of his second daughter in 2014, Alex and his hematologist decided it was time to switch from on-demand to prophylactic treatment to better manage his hemophilia B by staying ahead of bleeds. During the conversation, Alex’s doctor recommended Alprolix and explained the benefits and risks, such as the most common side effects including allergic reactions, headaches, abnormal sensations in the mouth, and pain in the side with blood in the urine, which may be a sign of clot formation in the urinary collecting system.   

Over the last decade of prophylaxis treatment, Alex has had more freedom to live his life to the fullest— riding his motorcycle across the country, surfing in Hawaii, and coaching his daughter, Isabella, in soccer.

Alicia and Landon’s Story: The Importance of Advocacy

Alicia and Landon smiling while wearing sunglasses and riding along in Alicia’s convertible.

Alicia and Landon, living with hemophilia B, United States

After the birth of her son, both Alicia and Landon were diagnosed with hemophilia B. Alicia was a bit surprised as testing while pregnant showed her baby had a low risk of the genetic condition.

Finding a treatment regimen was challenging in the early years. At the age of two, Alicia worked with his healthcare providers to enroll him in the clinical trial for Alprolix, and he has continued treatment for the last 10 years. Now, Landon maintains as close to a regular lifestyle as possible and has been able to reduce his infusion to once every two weeks.

Alicia remains involved in helping others navigate this disease through her advocacy and volunteer work. Through these efforts, her daughter Kylie was recently diagnosed with hemophilia B as well.

CJ’s Story: Finding Independence while Living with Hemophilia B

CJ smiling while posing for a picture against the city landscape.

CJ, living with hemophilia B, United States

CJ was diagnosed with hemophilia B at a young age and his initial treatment required infusions three times a week. In an attempt to reduce the number of infusions, CJ began taking Alprolix in 2013 after speaking with his doctors.

Throughout his teens, he started to learn how to self-infuse himself and independently started managing the process at the age of 18. Through working with his local Sanofi Community Relations and Education (CoRe) manager, CJ gained access to educational resources, which helped the infusion process.

He now helps children at a local hemophilia camp learn how to infuse themselves. His goal is to show others the importance of maintaining a positive attitude about living with hemophilia and the importance of self-care. He remains on Alprolix today, and in addition to working full-time, he enjoys running track, playing basketball, golfing, and swimming.

Continuing Innovation in Hemophilia and Beyond

Alex, Alicia, Landon, and CJ represent just a few stories of hemophilia B patients who have benefitted from Alprolix treatment. This treatment option aligns with their current lifestyle goals offering trusted bleed protection and flexible dosing every step of the way.6,7,8

Over the past few decades, there have been many innovations in the hemophilia treatment landscape, including Alprolix.6,9 With many options, people with hemophilia are able to choose therapies that meet their individualized needs. Sanofi is committed to building on this innovation to develop additional treatment options and to continue to learn more from members of this community to address ongoing unmet needs.

These stories reflect the real-life experiences of patients and caregivers with hemophilia B, but individual experiences may vary. Individuals were compensated by Sanofi.

Alprolix Indication and Important Safety Information


ALPROLIX® [Coagulation Factor IX (Recombinant), Fc Fusion Protein] is an injectable medicine that is used to help control and prevent bleeding in people with hemophilia B. Hemophilia B is also called congenital Factor IX deficiency. Your healthcare provider may give you ALPROLIX when you have surgery.


Do not use ALPROLIX if you are allergic to ALPROLIX or any of the other ingredients in ALPROLIX.

Tell your healthcare provider if you have or have had any medical problems, take any medicines, including prescription and non-prescription medicines, supplements, or herbal medicines, have any allergies and all your medical conditions, including if you are pregnant or planning to become pregnant, are breastfeeding, or have been told you have inhibitors (antibodies) to Factor IX.

Common side effects of ALPROLIX include headache, abnormal sensation in the mouth, and pain in your side with blood in your urine, which may be a sign of clot formation in the urinary collecting system.

Allergic reactions may occur with ALPROLIX. Call your healthcare provider or get emergency treatment right away if you have any of the following symptoms: hives, chest tightness, wheezing, difficulty breathing, or swelling of the face.

Redness to the skin at the injection site may also occur.

ALPROLIX may increase the risk of formation of abnormal blood clots in your body, especially if you have risk factors for developing blood clots. Call your healthcare provider or seek emergency care if you have symptoms of a possible abnormal blood clot, which may include: chest pain, difficulty breathing, unexpected swelling of an arm or leg with or without pain or tenderness.

Your body can also make antibodies called "inhibitors" against ALPROLIX, which may stop ALPROLIX from working properly.

These are not all of the possible side effects of ALPROLIX. Talk to your healthcare provider right away about any side effect that bothers you or does not go away, or if bleeding is not controlled using ALPROLIX.



  1. Epstein, J. (2015, March 4) March 28, 2014 Approval Letter – Alprolix. U.S. Food & Drug Administration. Wayback Archive It. Retrieved February 14, 2024, from https://wayback.archive-it.org/7993/20170723024329/https://www.fda.gov/BiologicsBloodVaccines/BloodBloodProducts/ApprovedProducts/LicensedProductsBLAs/FractionatedPlasmaProducts/ucm391050.htm
  2. Srivastava A, et al. WHF Guidelines for the Management of Hemophilia Third Edition. Haemophilia. 2020;26(6):1-158.
  3. (n.d.). Learn More About Hemophilia B. The Coalition for Hemophilia B. Retrieved February 16, 2024, from https://www.hemob.org/about-hemophilia-b
  4. Lambert T, et al. Practical aspects of extended half-life products for the treatment of haemophilia. Ther Adv Hematol. 2018;9(9):295-308.
  5. Data on file. Waltham, MA; Bioverativ Therapeutics Incsw.
  6. ALPROLIX® [coagulation Factor IX (Recombinant), Fc fusion protein] Prescribing Information. Waltham, MA: Bioverativ Therapeutics Inc. May 2023.
  7. Powell JS, Pasi KJ, Ragni MV, et al. Phase 3 study of recombinant factor IX Fc fusion protein in hemophilia B. N Engl J Med. 2013;369(24):2313-2323.
  8. Graf L. Extended Half-Life Factor VIII and Factor IX Preparations. Transfus Med Hemother. 2018;45(2):86-91.
  9. Mannucci PM. Hemophilia Therapy: the future has begun. Haematologica. 2020;105(3):545-533