Tara:
Hi, my name is Tara, and I have 2 children with hemophilia A. When Katie was 7 years old, she was diagnosed with tonsillitis. We were lucky enough to find an ENT who investigated a little further, and he did the bloodwork and found out she had hemophilia. So that was the beginning of our journey. Shortly after Katie’s diagnosis, everybody was tested and Mary, my middle—she does not have hemophilia. Jack tested positive for mild hemophilia A, and so that meant learning a second treatment regimen for him. When Katie tested positive for hemophilia, it put everything into perspective, made some things make sense in our family history. The bumps and bruises that we noticed in Katie and Jack that we assumed were just part of our everyday rural life—they were actually symptoms. For us, education was the best course of action rather than going out of our way to avoid risk. We didn’t want their hemophilia diagnosis to change how they were able to participate in life, or how we were able to participate in life as a family.

Jack:
Having a sister with hemophilia makes me feel less different. She’s been a role model to me because she has a lot more experience than I do. Katie knows how to infuse better than I do, so it’s motivating me more to self-infuse.

Katie:
Jack and I can lean on each other for support and we understand each other. When we’ve both had kind of a tough day, we’re able to lean on each other and vent to each other.

Tara:
When Jack was first diagnosed, he was treated on demand. It was very difficult. He didn’t understand why we had to do the things that we had to do, and he fought really hard, so he missed treatments because it was nearly impossible. As Jack got a little older and wanted to start playing sports regularly, he started to understand that he would have to be on prophy treatment if he wanted to play sports. That’s when things started to click into place for him and he started to be agreeable to prophy. In May of 2021, Jack started a factor-mimetic subcutaneous treatment. We experimented with weekly, biweekly, and monthly injections, and none of it seemed to work out for us. We were using factor as backup for breakthrough bleeds while Jack was using the factor-mimetic subcutaneous treatment. As a runner, he was starting to have some knee pain and ankle pain, and we had to use factor 6 times in a short period of time to treat or prevent bleeds. Nothing we were trying seemed to fit our treatment goals at that time. The most important thing to us when deciding to switch was protecting his target joints from bleeds. Less pain was secondary. And third was a good, easy schedule to stay on target for dosing. I encourage and empower my kids to make their own decisions medically, so I encouraged Jack to learn as much as he could about ALTUVIIIO, and it was ultimately his decision to switch. I explained to him that that’s an intravenous infusion, and he said, “Yes,” and that’s how we got here today.

I am being compensated to share my story with you in this video. This is our experience, and everyone is different. Our healthcare provider told us that ALTUVIIIO is the only once-weekly prophylactic Factor VIII replacement therapy. ALTUVIIIO was also shown to have higher-for-longer factor levels at over 40% for multiple days of the week. ALTUVIIIO’s higher factor levels were associated with lower bleed risk, and the once-weekly dosing would allow us to schedule our week around a single infusion time. Our doctor discussed the most common side effects of ALTUVIIIO being headache and joint pain.

Jack:
I switched to ALTUVIIIO in November of 2024.

Tara:
Jack’s dosing schedule is every week on Wednesday. We chose Wednesday because he didn’t have any sports on Wednesdays.

Jack:
I run cross-country and track. And cross-country usually has me doing a lot of miles. So protecting my target joints is very important to me. Since I’ve started ALTUVIIIO, I’ve had 1 national race, 3 5Ks, and about 10 track meets. Having hemophilia has made me more understanding how everyone has challenges in their life.

Tara:
Since Jack switched to ALTUVIIIO, we haven’t had to use any extra doses. He hasn’t had any bleeds in any of his joints. The once-weekly dosing has allowed us to be a little more free. And when we travel, we have to take less supplies with us. We have to stop what we’re doing less often for infusions. He worries less about joint bleeds. I just hope they continue to be independent with their medication schedules. Hemophilia doesn’t dictate their lives, it’s just a part of who they are, but it’s not dictating what they can do and who they become.

VO:

INDICATION

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 and joint 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.