Paxton Embraces Childhood With A First-in-Class Treatment for Hemophilia A
Posted: October 20, 2023 | Word Count: 1,109
Article is sponsored and developed by Sanofi. Jenny and Paxton were compensated by Sanofi and received free product through Sanofi’s Patient Support Program.
As a parent, there is no formula for raising a happy and healthy child. For Jenny and her son Paxton, it’s been a balancing act; struggling to find treatment for his hemophilia A while giving him a typical childhood full of happy memories. Yet, the duo navigated his condition as a team so Paxton could live his young life as smoothly as possible.
Their journey started shortly after his birth, when Paxton showed the telltale signs of hemophilia A, a rare, lifelong condition in which the ability of a person’s blood to clot properly is impaired.1,2 This can lead to excessive bleeds or spontaneous bleeds into joints that can result in joint damage, chronic pain, and potentially impact quality of life.1 His first few months were smooth sailing and Jenny was hopeful that life with hemophilia A would be manageable for her and Paxton.
However, once Paxton turned seven months old, Jenny noticed a large purple sore under his tongue that would mark the beginning of the next few years of his life in and out of the hospital. His visits ranged from three to four times a month, receiving infusions for his bleeds that could take up to five hours in the hospital.2 As he endured the pokes and pain from his treatments, Jenny struggled to cope at first but strived to embody the strength Paxton needed not only from a mother to son, but also as teammates in managing a chronic condition together. And Paxton was the MVP.
“I made it my goal to set a positive example for Paxton and be his fiercest advocate,” Jenny said. “To follow through with my promise to ensure he had a strong, beautiful childhood full of happy memories, hemophilia or no hemophilia.”
Jenny was initially reluctant to switch from on-demand treatment to prophylaxis with recombinant factor VIII due to the number of injections. But after learning how prophylaxis could potentially decrease the number of bleeds and help protect Paxton’s joints, Jenny’s mindset shifted. Now putting prevention first, this team made the switch when Paxton was five years old and he responded well to treatment, seeing a reduction in his bleeds and allowing him to participate in the activities he enjoys.
“Shifting to prophylaxis treatment fit our schedules, but our needs changed again as Paxton got older and more active. With that increased activity, we knew his body could potentially have an issue as his factor levels decreased and reached his trough level," Jenny said. Trough levels measure factor VIII in the blood, which is essential for evaluating the risk of bleeding.2 When trough levels or factor activity levels are low, there is a higher risk of bleeding, so it’s important to maintain factor levels.2
Jenny became interested in learning more about ALTUVIIIO® [antihemophilic factor (recombinant), Fc-VWF-XTEN fusion protein-ehtl], a first-in-class factor VIII treatment for adults and children with hemophilia A that offers once-weekly dosing.3 With ALTUVIIIO proven to maintain factor activity levels in the normal to near-normal range (over 40%) for most of the week in adults and two to three days in children,3 Jenny considered this a potential option for her son and their team.
Their consultation with Paxton’s other teammate, his hematologist, helped them to learn more about ALTUVIIIO and its most common side effects, including headache, joint pain and back pain, and the possibility to develop inhibitors while taking the treatment. After switching to ALTUVIIIO, Jenny and Paxton both expressed a sense of freedom brought by its once-weekly dosing.3
“ALTUVIIIO gives us peace of mind knowing that Paxton’s factor levels stay higher throughout the week, so he can keep his head in the game and enjoy being a kid,” she said. Paxton’s new dosing schedule allows him to infuse once a week, giving him more time to do the activities he loves.
Now in the 8th grade, Paxton and his mother encourage others affected by hemophilia to build a supportive team that helps them focus on their life goals. “As a parent, there is no greater reward than watching my son chase life with so much passion,” Jenny said.
Patient experiences on ALTUVIIIO may vary so please talk to your doctor when making treatment decisions. To learn more, visit ALTUVIIIO.com.
ALTUVIIIO® [antihemophilic factor (recombinant), Fc-VWF-XTEN fusion protein-ehtl] is an injectable medicine that is used to control and reduce the number of bleeding episodes in people with hemophilia A (congenital Factor VIII deficiency).
Your healthcare provider may give you ALTUVIIIO when you have surgery.
IMPORTANT SAFETY INFORMATION
What is the most important information I need to know about ALTUVIIIO?
Do not attempt to give yourself an injection unless you have been taught how by your healthcare provider or hemophilia center. You must carefully follow your healthcare provider's instructions regarding the dose and schedule for injecting ALTUVIIIO so that your treatment will work best for you.
Who should not use ALTUVIIIO?
You should not use ALTUVIIIO if you have had an allergic reaction to it in the past.
What should I tell my healthcare provider before using ALTUVIIIO?
Tell your healthcare provider if you have had any medical problems, take any medications, including prescription and non-prescription medicines, supplements, or herbal medicines, are breastfeeding, or are pregnant or planning to become pregnant.
What are the possible side effects of ALTUVIIIO?
You can have an allergic reaction to ALTUVIIIO. Call your healthcare provider or emergency department right away if you have any of the following symptoms: difficulty breathing, chest tightness, swelling of the face, rash, or hives.
Your body can also make antibodies called “inhibitors” against ALTUVIIIO. This can stop ALTUVIIIO from working properly. Your healthcare provider may give you blood tests to check for inhibitors.
The common side effects of ALTUVIIIO are headache, joint pain, and back pain.
These are not the only possible side effects of ALTUVIIIO. Tell your healthcare provider about any side effect that bothers you or does not go away.
Please see full Prescribing Information.
- What is hemophilia? Centers for Disease Control. July 17, 2020. https://www.cdc.gov/ncbddd/hemophilia/facts.html. Accessed September 26, 2023.
- Srivastava A, et al. WHF Guidelines for the Management of Hemophilia Third Edition. Haemophilia. 2020; 26 (Suppl. 6): 1-158. doi: 10.1111/hae.14046.
- ALTUVIIIO [antihemophilic factor (recombinant), Fc-VWF-XTEN fusion protein-ehtl] prescribing information. Bioverativ Therapeutics, Inc. March 2023.
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