Chandler Jackson plays for the University of Illinois Springfield Prairie Stars, a Division II men’s basketball team. A freshman, he’s attending school on a scholarship he earned as the second-highest scorer on his high school team in Indianapolis. He’s 19 years old, 6’6”, and plays guard.
He was also born with severe hemophilia A.
According to the Centers for Disease Control and Prevention, about one in 5,000 American males is born with hemophilia, a disorder that prevents blood from clotting due to a missing or defective protein called factor VIII. Hemophilia A is the most common type of hemophilia. For hemophiliacs, sprains and bumps that would be minor injuries for most can result in internal bleeding and long-term health concerns.
But that didn’t stand in the way of Jackson playing basketball from a young age. While there’s no cure for hemophilia, he first managed his condition with factor VIII infusions before deciding in high school to switch to Hemlibra® (emicizumab-kxwh)*, a prescription medicine used to prevent or reduce the frequency of bleeding episodes in adults and children with hemophilia A. Because Hemlibra has a unique four-week half-life (the length of time it takes for half the amount of a medicine to leave the body), the medicine sustains longer in the body between doses, enabling patients to self-administer once a week, every two weeks, or every four weeks, after a loading dose.
*What is the most important information I should know about HEMLIBRA? HEMLIBRA increases the potential for your blood to clot. Discontinue prophylactic use of bypassing agents the day before starting HEMLIBRA prophylaxis. Carefully follow your healthcare provider’s instructions regarding when to use an on-demand bypassing agent, and the dose and schedule you should use. HEMLIBRA may cause serious side effects when used with aPCC (FEIBA®), including thrombotic microangiopathy (TMA) and blood clots (thrombotic events). If a PCC (FEIBA®) is needed, talk to your healthcare provider in case you feel you need more than 100 U/kg of aPCC (FEIBA®) total. See more safety information below.
Complex spoke to Jackson about his career on the court, his journey with hemophilia A, and his goals after college.
How did basketball become your passion?
Basketball became a real passion for me around the fourth or fifth grade. One time, my dad and me were at our local YMCA and we were just shooting around, and he bumped into his childhood best friend, who still lived in Indiana. He saw me out there playing, and he was like, “Oh, who's that kid?” And my dad was like, “That’s my son.” He was like, “I need him on my team.” He had a little fourth-grade, fifth-grade team. We talked to my doctor to make sure it was OK for me to play with my condition and learn how to take the necessary precautions. So once I started playing with him, then it really became a thing where I was like, “OK, I actually really like playing this game. This is something I want to do for a long time.”
You've said that everyday cuts and scrapes aren’t your biggest concern on the court, but internal bleeding from bruises and other injuries is a threat. What could happen without proper treatment?
I’ve always worked with my doctor to make sure I continue to stay healthy and play safely, because if I fall hard or get kneed in the leg or things like that, I know they could potentially cause serious internal bleeds and lead to long-term joint damage. I know not everyone with hemophilia A is able to do these kinds of activities, just given the risks. In high school, I did have to miss some games because of injuries. I would definitely say I could have easily been done with basketball if I didn’t take necessary precautions, like wearing ankle braces or padded shorts. The precautions that I have to take are definitely more than other people, but at the same time, it becomes such a routine for me. It doesn’t feel abnormal to do those things.
Are there any misconceptions about hemophilia? And if so, what's the biggest?
This is so funny. Every time I explain it to someone, the thing I get the most is, “So if you get a cut, it’s never going to stop?” I’m like, “That’s not really what I mean by that.” I mean, it’d have to be a pretty deep cut, bleed a while, but even now I’ve gotten cuts and I'd say they take the normal amount of time to stop. Internal bleeds are a bigger issue for me. Say it’s my leg. Well, my leg could swell up—it might even turn purple—and I could wind up with joint damage.
When it comes to things now, I’m just out there being who I am.
Is there any part of you that still gets even a bit nervous while practicing with the team or on your own, or when you’re out there playing?
I wouldn’t say I feel nervous, but I still make sure to take precautions and continue my routines to help manage my disease. The last time I really felt nervous about it was elementary school and middle school. I knew hemophilia was a part of who I was, and then, as I got older, I knew it was something I couldn't change, so I just decided I’m not going to let that stop me. In elementary school, it was a little rougher because kids, they didn’t understand.
Sometimes they would think I was faking an injury, because one day I could be in a wheelchair because of a joint bleed, and the next day I could be walking. It was hard because I had to deal with kids not knowing what was going on, and also had to deal with teachers not really knowing what’s going on. I’d have to sit out of the gym class almost all the time if we were doing something a little more physical. I mean, it was a little rough at that time because that made me feel more on an island. Nobody really knew what I was dealing with and what I was going through because I’m a young kid, and it’s hard to explain all this medical stuff to other kids. But when it comes to things now, I’m just out there being who I am.
How are you managing your symptoms these days?
Hemlibra, man—I started taking it in high school. I have severe hemophilia A, and the doctors said Hemlibra could be a treatment that could work for me. I take it every two weeks, which is a lot easier to manage with my practice and game schedule.
*In the Phase III HAVEN 3 study in people aged 12 years and older without factor VIII inhibitors, the average number of treated bleeds per year (ABR, annualized bleed rate) for people receiving HEMLIBRA prophylaxis every week (N=36) or every two weeks (N=35) was 1.5 (95% CI: 0.9, 2.5) and 1.3 (95% CI: 0.8, 2.3), respectively, compared to 38.2 (95% CI: 22.9, 63.8) for people receiving no prophylaxis (N=18). The median time on HEMLIBRA for people in HAVEN 3 study was 30 weeks (once every week), 31 weeks (once every 2 weeks), and 24 weeks (no prophylaxis). In the Phase III HAVEN 4 study, the ABR for people aged 12 years or older with hemophilia A with or without factor VIII inhibitors receiving HEMLIBRA prophylaxis every four weeks (N=41) was 2.4 (95% CI: 1.4, 4.3). The median time on Hemlibra for people in HAVEN 4 study was 26 weeks.
How has your disease management helped you pursue your goals?
I would say that being able to care for myself more as I’ve gotten older has helped drastically. If I didn’t know the importance of my treatment schedule, if I didn’t know how to get in touch with my doctors and say, “I’m feeling this type of way, this type of pain—what do you think I should do?” then it would've definitely slowed me down a lot. Because that would mean I’d have to either have my parent or someone by my side the whole time asking all these questions if I get injured or infusing me every time I need medicine. And, honestly, that would’ve just slowed me down. I feel like now that I can do all these things on my own, it’s just prepared me for living on my own and being on my own as an adult, and helps me in a way to live a more normal life.
What are your plans once you finish college? What's the next goal you're chasing?
Once I finish college, I definitely still want to try and pursue basketball for a couple more years. But I’m also working on my agriculture degree right now. I’m going to go out there and give it my all.
Every person's hemophilia A journey is different, and Chandler's physical practices may not be appropriate for everyone.
Hemlibra U.S. Indication
Hemlibra is a prescription medicine used for routine prophylaxis to prevent or reduce the frequency of bleeding episodes in adults and children, ages newborn and older, with hemophilia A with or without factor VIII inhibitors.
Important Safety Information
What is the most important information to know about Hemlibra?
Hemlibra increases the potential for blood to clot. People who use activated prothrombin complex concentrate (aPCC; Feiba®) to treat breakthrough bleeds while taking Hemlibra may be at risk of serious side effects related to blood clots.
These serious side effects include:
- Thrombotic microangiopathy (TMA), a condition involving blood clots and injury to small blood vessels that may cause harm to one’s kidneys, brain, and other organs
- Blood clots (thrombotic events), which may form in blood vessels in the arm, leg, lung, or head
Patients should talk to their doctor about the signs and symptoms of these serious side effects, which can include:
- Confusion
- Stomach, chest, or back pain
- Weakness
- Nausea or vomiting
- Swelling, pain, or redness
- Feeling sick or faint
- Decreased urination
- Swelling of arms and legs
- Yellowing of skin and eyes
- Eye pain, swelling, or trouble seeing
- Fast heart rate
- Numbness in your face
- Headache
- Shortness of breath
- Coughing up blood
If patients experience any of these symptoms during or after treatment with Hemlibra, they should get medical help right away.
Patients should carefully follow their healthcare provider’s instructions regarding when to use an on demand bypassing agent or factor VIII, and the dose and schedule to use for breakthrough bleed treatment. If aPCC (Feiba®) is needed, patients should talk to their healthcare provider in case they feel they need more than 100 U/kg of aPCC (Feiba®) total.
Patients’ bodies may make antibodies against Hemlibra, which may stop Hemlibra from working properly. Patients should contact their healthcare provider immediately if they notice that Hemlibra has stopped working for them (eg, increase in bleeds).
The most common side effects of Hemlibra include: injection site reactions (redness, tenderness, warmth, or itching at the site of injection), headache, and joint pain. These are not all of the possible side effects of Hemlibra. Patients can speak with their healthcare provider for more information.
What else should patients know about Hemlibra?
Patients should see the detailed “Instructions for Use” that comes with Hemlibra for information on how to prepare and inject a dose of Hemlibra, and how to properly throw away (dispose of) used needles and syringes.
- Patients should stop taking their prophylactic bypassing therapy the day before they start Hemlibra
- Patients may continue taking their prophylactic factor VIII for the first week of Hemlibra
Hemlibra may interfere with laboratory tests that measure how well blood is clotting and create an inaccurate result. Patients should speak with their healthcare provider about how this may affect their care.
Medicines are sometimes prescribed for purposes other than those listed in a Medication Guide.
Patients should only use Hemlibra for the condition it was prescribed. Patients should not give Hemlibra to other people, even if they have the same symptoms that they have. It may harm them.
Patients should tell their healthcare provider about all the medicines they take, including prescription medicines, over-the-counter medicines, vitamins, or herbal supplements. Patients should keep a list of them to show their healthcare provider and pharmacist.
Before using Hemlibra, patients should tell their healthcare provider about all of their medical conditions, including if they are pregnant, plan to become pregnant, are breastfeeding, or plan to breastfeed.
Since Hemlibra was tested in males, there is no information on whether Hemlibra may impact an unborn baby or breast milk. Females who are able to become pregnant should use birth control during treatment.
Side effects may be reported to the FDA at (800) FDA-1088 or www.fda.gov/medwatch. Side effects may also be reported to Genentech at (888) 835-2555.
Please see Important Safety Information, including Serious Side Effects, as well as the Hemlibra full Prescribing Information and Medication Guide.
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