Living with hemophilia: A Nashville musician shares his story

Growing up in Bowling Green, Kentucky, a college town known for its high quality of life, football rivalries and sports cars, singer-songwriter Trevor Martin knew his childhood was a little different from those around him.

When Martin was born, he wouldn’t stop bleeding. When he was two days old, he was rushed in an ambulance to Vanderbilt University Medical Center, where he was diagnosed with severe hemophilia A, a bleeding disorder in which the blood doesn’t clot properly.

When he started crawling, his parents were quick to pad the room with pillows to help him avoid joint injuries and bumps that could cause internal bleeding. As he got older, having hemophilia meant contact sports were off the table.

However, in a town that took its sports seriously, sitting on the bench wasn’t where he wanted to be.

“I wanted to play football, which was a big deal in my town, but I couldn’t,” Martin said. “I was able to play basketball and baseball, some of the less contact sports.”

Speaking to Martin now, he exudes a sense of optimism. Having hemophilia was a challenge that would set the stage for his approach to life.

Inspiring others in the hemophilia community

Martin was 8 years old when he realized his passion for singing and performing. He sang a solo with a local orchestra, his first time singing for an audience of a thousand, and he got a standing ovation. “It opened my eyes like, ‘Oh, wow, people like to hear me sing,’” he said.

By the age of 13, he had picked up the guitar and was writing his own songs. Now, at 25, he’s an up-and-coming pop-country musician living in Nashville.

Music has always been a deeply personal expression for Martin, and living with hemophilia has inspired some of his songs. “The first single I ever put out was written and produced with the father of another boy with hemophilia,” he said. “That was really cool to make that connection in the hemophilia world and put that music out there.”

As a teenager, Martin traveled and shared his story with others in the community. On stage, he could voice through song what it’s like to live with hemophilia. “I [wanted] to inspire people, help them think about other things and [let them know], ‘Hey, you can live a fulfilling life having this bleeding disorder,’” he said.

Finding a little more time with a different treatment

For much of his life, administering treatment for his hemophilia was something he had to do almost daily.

When he was very young, he had a port-a-catheter surgically implanted under the skin in his chest, which allowed for repeated access to a central vein where his medicine was infused every other day. As he got older, he was able to self-infuse directly into his veins a few times a week. However, it still wasn’t easy for him.

Just over a year ago, Martin was introduced to another option for managing his hemophilia: Hemlibra (emicizumab-kxwh),* a prescription medicine used to prevent or reduce the frequency of bleeding episodes in adults and children with hemophilia A with or without factor VIII inhibitors.

*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 aPCC (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.

Martin had been hearing about Hemlibra for several years but was hesitant to change his routine. He eventually spoke with a nurse at a national conference for bleeding disorders late last year, who answered all of his questions about Hemlibra; then he met with his doctor to discuss it further and set up a treatment plan.

Hemlibra is given as an injection under your skin. Your doctor recommends after your loading dose, it can be taken once a week, once every two weeks or once every four weeks. He still has to be careful to avoid causing bleeds, but so far, he’s been very happy with how Hemlibra helps him manage his condition.

“Now, I only have to do my treatment routine once a month,” he said. “Switching was the right decision for me.”

About inspiring others as he’s done so many times before, Martin said, “I would encourage people to at least ask their doctor about Hemlibra and see if it’s a good fit for them.” As a passionate and active voice in the hemophilia community, he’s feeling positive about the future, and it shows. Right now, he’s in the studio working on more songs to release later this year. “I’m proud to be a part of the hemophilia community, and I’m so honored that I have the opportunity to show others that the adversity in our lives doesn’t have to hold us back from pursuing our dreams.”

To learn more about Hemlibra, visit https://www.hemlibra.com/.

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 (e.g., 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.

©2022 Genentech USA, Inc. All rights reserved.

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