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After decades, a scientific development has changed how people treat hemophilia A

“Treatment doesn’t have to be as big of a focus with my time.”

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A sprained ankle, jammed finger or pulled hamstring may not seem like a big deal for most people. But for a person with hemophilia, bleeding in the muscles and joints can be exceedingly painful experiences that can lead to bruising and require hospitalization.1,2 For people with hemophilia A, this is because they lack a specific protein, known as factor VIII, that helps blood clot.1 In the U.S. alone, roughly 20,000 people are living with hemophilia, with hemophilia A being the most common form.1

But a scientific development in therapy for hemophilia A is changing how people treat this disorder.

WHAT’S CHANGED FOR PEOPLE WITH HEMOPHILIA A?

Historically, most people with hemophilia A needed intravenous infusions of their treatment as often as multiple times a week to prevent or treat bleeds.3 During his early teenage years, Guy Warner Law, now 36, sometimes had to go to the hospital five times a week for treatment. But as he got older, his hematologist encouraged him to consider an option that could be administered as a shot at home: Hemlibra® (emicizumab-kxwh), a preventative treatment for people with hemophilia A with or without factor VIII inhibitors that can be taken once a week, once every two weeks, or once every four weeks.* He eagerly started and found himself self-injecting once every 28 days, after four weekly loading doses that helped build up Hemlibra levels in his blood.

*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.

With a different treatment schedule, Law started reevaluating his daily routine and how he makes plans. Lately, he has been focusing on achieving his life goals. He got married last year and traveled to Florida for his honeymoon.

“I took Hemlibra just prior to the trip,” he said. “So I didn’t have to think about treatment as much while I was there. We walked around theme parks in Orlando for two weeks without having to treat multiple times per week.”

Aerospace engineer Donald Smith, 57, also switched to Hemlibra once it became available. For most of his life, he waited until he experienced a painful bleed to get treated on-demand, although preventative treatments were available. This had an impact on how he planned for physical activities.

“With on-demand treatment, I always had in my mind that I had hemophilia A,” he said. “Hemlibra was my first experience treating prophylactically, meaning I take treatment to try to prevent bleeds rather than waiting to treat bleeds after they’ve occurred.”

A biker, hiker and kayaker, Smith is teaching his friends and family how this has affected his life.

“When you have a group around you who loves you, they of course have concerns,” he said. “Hemophilia A has always been a concern. They’re learning now that treatment doesn’t have to be as big of a focus with my time.”

The effect that this approach to managing hemophilia can have isn’t limited to Smith. Forging new connections is a significant part of the college experience. That’s one of the main reasons Lucas Nash, a 21-year-old student in his third year of college, decided to start treatment with Hemlibra.

“It gives me a lot more flexibility with my treatment schedule,” Nash said. “Rather than setting aside time every three days for treatment, I only have to do it once a week, so I have some more time to study, hang out with friends and meet new people.”

What a development like this means for the hemophilia community is not lost on Nash.

“I was lucky I grew up in an era of more treatment options,” said Nash. “Overall, I think people with hemophilia are very optimistic for the future as we continue to see progress with science and research.”


What is Hemlibra?

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.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.

What is the most important information to know about Hemlibra?

Hemlibra increases the potential for blood to clot. 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. Hemlibra may cause the following serious side effects when used with activated prothrombin complex concentrate (aPCC; FEIBA®), including:

  • Thrombotic microangiopathy (TMA). This is a condition involving blood clots and injury to small blood vessels that may cause harm to one’s kidneys, brain, and other organs. Patients should get medical help right away if they have any of the following signs or symptoms during or after treatment with Hemlibra:
  • confusion
  • stomach (abdomen) or back pain
  • weakness
  • nausea or vomiting
  • swelling of arms and legs
  • feeling sick
  • yellowing of skin and eyes
  • decreased urination
  • Blood clots (thrombotic events). Blood clots may form in blood vessels in the arm, leg, lung, or head. Patients should get medical help right away if they have any of these signs or symptoms of blood clots during or after treatment with Hemlibra:
  • swelling in arms or legs
  • feel faint
  • pain or redness in the arms or legs
  • headache
  • shortness of breath
  • numbness in the face
  • chest pain or tightness
  • eye pain or swelling
  • fast heart rate
  • trouble seeing
  • cough up blood

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.

Before using Hemlibra, patients should tell their healthcare provider about all of their medical conditions, including if they:

  • are pregnant or plan to become pregnant. It is not known if Hemlibra may harm an unborn baby. Females who are able to become pregnant should use birth control (contraception) during treatment with Hemlibra.
  • are breastfeeding or plan to breastfeed. It is not known if Hemlibra passes into breast milk.

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 when they get a new medicine.

How should patients use 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.

  • Stop (discontinue) prophylactic use of bypassing agents the day before starting Hemlibra prophylaxis.
  • Patients may continue prophylactic use of factor VIII for the first week of Hemlibra prophylaxis.

What should patients know about lab monitoring?

Hemlibra may interfere with laboratory tests that measure how well blood is clotting and may cause a false reading. Patients should talk to their healthcare provider about how this may affect their care.

The most common side effects of Hemlibra include: 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 should speak to their healthcare provider for medical advice about side effects.

Medicines are sometimes prescribed for purposes other than those listed in a Medication Guide. Patients should not use Hemlibra for a condition for which it was not prescribed. Patients should not give Hemlibra to other people, even if they have the same symptoms that they have. It may harm them. Patients can ask their pharmacist or healthcare provider for information about Hemlibra that is written for health professionals.

Side effects may be reported to the FDA at (800) FDA-1088 or http://www.fda.gov/medwatch. Side effects may also be reported to Genentech at (888) 835-2555.

Please see the Hemlibra full Prescribing Information and Medication Guide for more important safety information including Serious Side Effects.

  1. Centers for Disease Control and Prevention. What is Hemophilia https://www.cdc.gov/ncbddd/hemophilia/facts.html. Accessed August 3, 2021.
  2. Mayo Clinic. Symptoms and Causes. https://www.mayoclinic.org/diseases-conditions/hemophilia/symptoms-causes/syc-20373327. Accessed August 3. 2021.
  3. Porada C, et al. Hemophilia A: an ideal disease to correct in utero. Front Pharmacol. 2014; 5:276.

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