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New Survey Spotlights Ongoing Concerns for People Living with Hemophilia B

admin April 30, 2023

This is a paid public announcement from CSL Behring 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 the CSL Behring website. LA Kelley Communications always advises you to be a savvy consumer when contacting any company; do not reveal identifying information against your will.

Carefully controlled schedules. Undercurrents of uncertainty. Persistent pain. People who are living with hemophilia B, and those who love them, face a lifetime of managing the complexities of this condition.

While significant advancements have been made in the treatment of hemophilia B, there is still a desire for new treatment options to address unmet needs for people with moderate to severe forms of the condition.

In fact, a recent CSL Behring-sponsored survey on the burdens of living with hemophilia B found that even with treatment, people with hemophilia B are still experiencing spontaneous bleeds and joint pain, and would consider switching to a new therapy that may be more effective. The online survey conducted by CSL Behring in partnership with the Coalition for Hemophilia B included 110 people with the rare bleeding disorder who are on either short-term or long-term prophylactic treatment.* The survey revealed that during a six-month period, respondents reported an average of 4.2 spontaneous bleeds and 2.2 joints bleeding three or more times.

Additionally, 87% of respondents reported experiencing joint pain at least a few times a month. 

“The survey really highlighted the concerns and challenges that people with hemophilia B still face,” said Kim Phelan, Chief Operating Officer of The Coalition for Hemophilia B. “Spontaneous bleeds, joint damage and joint pain are just a few of the burdens that some in the hemophilia B community must live with.

With up to 156 intravenous infusions per year, people with hemophilia B are also at risk for vein collapse.

The life-long effects of living with and managing hemophilia B however aren’t just physical. More than 40% of people living with hemophilia B experience depression, anxiety, or other psychological disorders.

As new treatments become available to potentially address the unmet needs within the hemophilia B community, discussion with healthcare professionals on treatment goals is essential. It’s time to ask, “Is there a better treatment option for me?”

*Short-term prophylaxis is prolonged treatment following a bleed until full recovery and prophylaxis prior to physical activity. Long-term prophylaxis is regular preventative injections. Of the 110 people surveyed, 29 were being treated with short-term prophylaxis only, 74 were being treated with long-term prophylaxis only, and 7 were being treated with both short-term and long-term prophylaxis.

©2023 CSL Behring LLC 1020 First Avenue, PO Box 61501, King of Prussia, PA 19406-0901 USA

www.CSLBehring.com USA-HGX-0330-APR23

Boost Mental Well-Being with Empowerment

admin April 24, 2022

Sponsored content by Sanofi

May is Mental Health Awareness Month. Since it is not uncommon for people with hemophilia to experience higher rates of mental health issues, this is an important topic for the bleeding disorders community. If you or someone you care for has hemophilia, it can be a time to be mindful of mental health and consider taking empowering steps toward improved well-being.

Studies have shown that nearly four out of 10 adults living with hemophilia met the criteria for depression,¹ and that people with hemophilia and depression are less likely to adhere to a proper treatment regimen.² Withdrawing from friends, family, and the community can also happen over time, all of whom may help with maintaining a well-rounded and connected life.

Mental health not only affects a person emotionally, but also influences physical well-being. “There
is no health without mental health,” said Debbie de la Riva, CEO of Mental Health Matters Too.
“When someone is struggling with a mental health disorder, he/she is less likely to engage in
healthy self-care behavior, such as getting enough exercise. This can have a lasting, negative
impact on their joints and increase the risk of bleeds.”

If you are struggling with your mental health, it is important to talk to someone about it and
possibly seek treatment. Recognizing and acknowledging your condition is critical to managing
mental health. Visit the National Alliance on Mental Illness to learn about the signs and symptoms
of common mental health conditions, such as depression and anxiety, and to better recognize them in
yourself or a loved one. Through honest, open conversation, you can help yourself and others by
breaking down stigmas associated with mental health.

“I encourage people to recognize what mental health conditions look like and how to have that
conversation,” de la Riva says. “It’s time we break the stigma and educate ourselves.”

Another way to potentially improve mental well-being is by taking steps toward a greater sense of

empowerment. Empowerment allows patients and caregivers to have a sense of control over mindsets
and the confidence to make choices and solve challenges that arise. Some steps you can take to help
increase your sense of empowerment include:

  • Embracing uniqueness
    What traits make you special? Think about characteristics like creativity, gratitude, and bravery.
    These are strengths that can help you navigate difficult situations.
  • Engaging in self-advocacy
    Self-advocacy means understanding your needs and speaking up for yourself in order to have those
    needs met.
  • Creating empowering partnerships
    Partners in empowerment support you in your decisions. They can be friends, family, a care team,
    others with hemophilia, and other people in your life who believe in you and your abilities.

Empowerment is an active process that can be nurtured, practiced, and developed over time. One way
to practice empowerment is through visualization. The activity below can be used to help you
visualize the situations, behaviors, and people who give you confidence in navigating life:

  1. On a piece of paper, write a word that describes a situation where you feel in control of your surroundings and empowered to speak about and make decisions regarding your hemophilia. Make that word so large it fills as much of the space as possible.
  2. Fill in the space around your big word with actions you take in that situation that make you
    feel confident.
  3. Write down the names of people who support you, continuing to fill in as much space as you
    can. Post this somewhere you will see it often as a reminder of what makes you feel empowered.
    Sanofi is committed to empowering people with hemophilia. If you’d like to learn more, you can also connect with your local Sanofi Community Relations and Education, or CoRe, Manager, who can provide
    education and share resources for additional information.

¹https://pubmed.ncbi.nlm.nih.gov/22642565/#:~:text=Adult%20patients%20with%20haemophilia%20have,h ealth%20outcomes%20and%20treatment%20adherence
²https://www.dovepress.com/interrelationship-between-depression-anxiety-pain-and-treatment-adhere-pe er-r eviewed-fulltext-article-PPA

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Women, the community, and hemophilia B

admin September 19, 2021

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?

admin August 22, 2021

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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