Ten Years of Making an Impact in the Hemophilia B Community

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.

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 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.

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.

INDICATION

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.

IMPORTANT SAFETY INFORMATION

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.

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