Women, the community, and hemophilia B

Our community members often identify themselves by the type of bleeding disorder they have, or by the treatment they are on. But it’s important to remember that there are family members and professional caregivers who care for them, who are sometimes patients themselves. Take a moment to show gratitude for the people who help hold everything together. Please read the public-service message below from Medexus, to see what one company is doing to honor women in our community.

Here’s what’s happening in the hemophilia B space!

Medexus Pharma, the people behind IXINITY® [coagulation factor IX (recombinant)], has launched a webpage specifically to honor the remarkable women they are calling the Heroines of Hemophilia B. These are women who advocate for themselves—as women with hemophilia B—or have made an impact lending their support to others.

The work women do as healthcare professionals is absolutely essential. And many times, the key provider of care in the family setting is also a woman. Then there are the women who have hemophilia B. As a patient population, these women are often overlooked. It’s time they got the care and support they deserve.

One of the great things about the Heroines of Hemophilia page is that it gives you a way to show your gratitude by nominating someone in your life. If you know of a woman who has courageously taken a stand to advocate for herself, or gone over and above in the care of someone else, go to www.HeroinesofHemophiliaB.com and nominate her as a Heroine of Hemophilia B.

This is a community in every sense of the word. Here’s a way to show to it.

INDICATIONS AND IMPORTANT SAFETY INFORMATION

What is IXINITY®?

IXINITY [coagulation factor IX (recombinant)] is a medicine used to replace clotting factor (factor IX) that is missing in adults and children at least 12 years of age with hemophilia B. Hemophilia B is also called congenital factor IX deficiency or Christmas disease. Hemophilia B is an inherited bleeding disorder that prevents clotting. For children and adults, your healthcare provider may give you IXINITY for on demand treatment to prevent bleeding episodes or when you have surgery. For adults, your healthcare provider may also give you IXINITY for routine prophylaxis.

IXINITY is not indicated for induction of immune tolerance in patients with hemophilia B.

IMPORTANT SAFETY INFORMATION for IXINITY

• You should not use IXINITY if you are allergic to hamsters or any ingredients in IXINITY.
• You should tell your healthcare provider if you have or have had medical problems, take any medicines, including prescription and non-prescription medicines, such as over-the-counter medicines, supplements, or herbal remedies, have any allergies, including allergies to hamsters, are nursing, are pregnant or planning to become pregnant, or have been told that you have inhibitors to factor IX.
• You can experience an allergic reaction to IXINITY. Contact your healthcare provider or get emergency treatment right away if you develop a rash or hives, itching, tightness of the throat, chest pain, or tightness, difficulty breathing, lightheadedness, dizziness, nausea, or fainting.
• Your body may form inhibitors to IXINITY. An inhibitor is part of the body’s defense system. If you develop inhibitors, it may prevent IXINITY from working properly. Consult with your healthcare provider to make sure you are carefully monitored with blood tests for development of inhibitors to IXINITY.
• If you have risk factors for developing blood clots, the use of IXINITY may increase the risk of abnormal blood clots.
• Call your healthcare provider right away about any side effects that bother you or do not go away, or if your bleeding does not stop after taking IXINITY.
• The most common side effect that was reported with IXINITY during clinical trials was headache.
• These are not all the side effects possible with IXINITY. You can ask your healthcare provider for information that is written for healthcare professionals.

For more information about IXINITY, please see full Prescribing Information, including Important Patient Information.

You are encouraged to report adverse events related to Medexus Pharma products by calling 1-877-215-2297. If you prefer, you may contact the Food and Drug Administration directly. Visit www.fda.gov/medwatch, or call 1-800-FDA-1088.

Is your emergency plan up to date?

Our publications address the many challenges you face as you begin life with hemophilia. For this week’s HemaBlog, we suggest you check out this website to learn more about handling life’s many phases and changes!

Laurie

This is a paid public announcement from Takeda and does not constitute an endorsement of products or services. When you click on the links in this blog entry, you will be directed to a Takeda website. LA Kelley Communications always advises you to be a savvy consumer when contacting any company; do not reveal identifying information against your will.

Big changes are coming—as schools and workplaces continue to reopen, we all need to prepare for what’s ahead. For people or loved ones with a bleeding disorder, part of that preparation can include completing an emergency preparedness plan. BleedingDisorders.com has information and reminders that can help you get your plan in order.

Add a medical bracelet to your list of necessary supplies
In case of an emergency, having a medical ID bracelet and carrying a wallet card may help save precious time. There are other things you can do now to prepare for an ER visit that may happen in the future. Download and print an ER checklist to take some of the stress away from urgent situations that may arise.

Take advantage of the calm before the storm
There’s no way to know when an emergency may happen. But there are steps you can take now to prepare yourself, your family, AND the ER staff for any future emergency situations:

• Find an ER with bleeding disorder experience (ask your doctor for a recommendation)
  
• Schedule a pre-emergency appointment at your ER of choice
  
• Get emergency preparation information from your hemophilia treatment center team

Find more information about each of these steps and other ways to prepare at BleedingDisorders.com.

Make your voice heard
Until a cure is found, bleeding disorders need to be actively managed throughout a person’s life. That means starting out with a management plan that you are confident fits your needs and goals, and then staying connected with your doctors to make sure that plan changes if needed over time. BleedingDisorders.com offers several discussion guides aimed at helping you better communicate with doctors about the long-term management of your or your loved one’s bleeding disorder. Download and use the guide that works best for you.

Connect with the Bleeding Disorders community on Facebook, Instagram, YouTube, and Twitter. You can also sign up to learn more about a program designed especially for the bleeding disorders community.

References:

1. Canadian Hemophilia Society. The emergency room: prepare to succeed. Accessed May 25, 2021. https://www.hemophilia.ca/files/er2.pdf

©2021 Takeda Pharmaceuticals U.S.A., Inc. Lexington, MA 02421. 1-877-TAKEDA-7. All rights reserved. TAKEDA and the TAKEDA logo are trademarks or registered trademarks of Takeda Pharmaceutical Company Limited.

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