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Hemophilia

Treatment

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We’re here for people living with hemophilia.

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Whether you’re living with hemophilia or you’re a caregiver, managing it can feel overwhelming. We’ll help you understand the latest treatments and what the lab tests mean, and what you can do to help manage hemophilia moving forward.
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Keep track of numbers

Work with your care team
Balancing work, school, and health

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Explore treatment types

Hemophilia treatment continues to evolve.

Some of today’s treatments help improve factor levels, prevent excessive bleeding, and reduce the risk of joint problems. There are also treatments that focus on factor replacement and others that leverage gene therapy or rebalancing approaches.

A plan can include more than one type of treatment and depends on a few factors:

  • The type of hemophilia
  • How severe it is
  • Whether you or your child have, or are at risk for, inhibitors — antibodies created by the immune system that block, or inhibit, the action of certain treatments

Knowing about different treatments helps you take an active role with your care team.

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Factor replacement therapy

As the name suggests, these treatments replace clotting factors in the blood. They are given as infusions through a vein, often by patients themselves or their caregivers. They are taken in two ways:

  • Prophylactic: Regular infusions to help prevent bleeds, also called prophylaxis. Prophylactic treatment is recommended for those with severe hemophilia and some with mild or moderate hemophilia
  • On-demand: Infusions taken before surgery or after an injury or spontaneous bleed

Factor replacements carry a risk for inhibitor development in some patients. Bypassing agents or higher doses of factor replacement can sometimes be used to treat those with inhibitors.

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Non-factor replacement therapy

These are taken regularly to help prevent bleeding. They are usually given as an injection or infusion. There are two main types:

  • Factor mimetic: For people living with hemophilia A, this mimics clotting factor VIII instead of replacing it
  • Rebalancing: Anticoagulants promote blood flow. Rebalancing therapy aims to reduce, or balance, anticoagulants in the blood which helps improve the blood’s ability to clot

Factor replacement is used instead of non-factor replacement therapy if bleeding occurs.

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Bypassing agents

For those who have developed inhibitors, these treatments “bypass” the inhibited factor.

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Gene therapy

This treatment is given as a one-time injection, usually for those living with severe hemophilia. The injection carries a specific gene through the body to the liver.  The liver then makes more clotting factor available in the blood.

Gene therapy can help reduce bleeding episodes and possibly the need for factor replacement therapy.

Although the cost of gene therapy can be higher than other treatments, it may be an option for some patients.

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Clinical trials

If available treatments aren’t a fit for you or your child, participating in a clinical trial may be right for your situation. Clinical trials study the safety and efficacy of potential new medicines, including hemophilia treatments. Your doctor can tell you about the benefits and risks, and whether joining a clinical trial is the right step.

Explore clinical trials

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Keep track of numbers

How do I know if the treatment plan is working?

It’s a good question and one that you’ll talk about with your care team during regular appointments. You’ll also discuss overall health and hemophilia including:

  • Bleeding episodes, where and when they occurred, how they happened, and how many infusions it took to control the bleeding
  • Persistent symptoms including joint or muscle pain or signs of brain bleeding such as headaches and sleepiness

The discussion gives your care team a better idea of how your, or your child’s, treatment plan is working. They may also order one or more of the following tests.

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Inhibitor test

Inhibitors develop when the immune system creates antibodies that block, or inhibit, the action of factor replacement treatments. If tests show inhibitors, it could be a sign that your treatment should be adjusted.

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Clotting factor test

Also called a factor assay, this test looks at the clotting activity of factors VIII and IX in the blood. Monitoring factor activity can help care teams adjust a hemophilia treatment plan.

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Coagulation screening test

These tests show whether blood is clotting properly and how quickly clotting occurs.

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It could be time to talk to your care team about your treatment

Is your current treatment meeting your needs? Get a guide that can help you start the conversation.

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Download your guide

Get ready for your visit

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Work with your care team

You and your care team

Your care team is an important part of your life. Still, there may be times when you need to make a change.

If you’re switching from pediatric to adult care, going to college, or moving to a new city, visit the World Federation of Hemophilia site to find a new treatment center.

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Balancing work, school, and health

Your education and career are important.

You have the right to ask for reasonable accommodations and support. Here are just a few to consider:

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Permission to avoid PE or sports activities that could lead to a bleed

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Access to a private space to take medicine during school or work hours

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Accommodations for children on field trips

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Time off for medical appointments

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Transitioning to adult care

As a teen or young adult, you’ll move from pediatric to adult care. The good news is that your current care team can help. They’ll provide health records, insurance information, and tips on navigating the transition.

Here are some other steps you can take:

  • Describe your hemophilia history and symptoms in your own words
  • Save your lab numbers and a list of your medications
  • Ask your hematologist about learning how to practice giving yourself infusions or injections if you've never done it on your own before

If you need a little help, the HemMobile® app is a good place to start.

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Still have questions?

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What should I know about managing hemophilia day-to-day?

There are definitely things you can do daily or regularly to help manage hemophilia. Here are just a few ideas:

  • Get the HemMobile app to track bleeds and infusions or injections. You can also keep track of the date, time, and reasons for your infusions along with the name of your medicine
  • Reorder treatment before it runs out
  • Have treatment available for breakthrough bleeds and for when you’re away from home
  • Make a backup plan for when you don’t have treatment on hand
  • Carry or wear a medical identifier
  • Get a letter from your doctor with the type and severity of your hemophilia and your treatment needs
  • Make sure you always have contact numbers or addresses of people, clinics, and health centers that can provide medical attention

Use the HemMobile app to help you with day-to-day hemophilia management.

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Can I exercise or play sports if I have hemophilia?

Yes. Physical activity can help improve or maintain strength and flexibility. Muscles surrounding joints need exercise to help recover from joint bleeding. Strong muscles help protect joints, which can lead to fewer joint bleeds.

Make sure to talk to your doctor or care team before starting an exercise routine. Here are some things to keep in mind:

  • Exercise at least 3 times a week or as advised by an orthopedist and physical therapist
  • Swimming, biking (with a helmet), walking, strength training, and yoga are recommended
  • Tennis and baseball and other non-contact sports are recommended with caution
  • Football, hockey, wrestling, and boxing are not recommended

Children can exercise and play sports as well. Here’s what caregivers should know:

  • Not all activities may be appropriate for a child with hemophilia
  • Generally, children can engage in the same exercises and sports as adults
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I’m going to college soon, what steps should I take?

There are five steps you can take, think of it as STUDI:

  • Search for and find a hemophilia treatment center near your college
  • Talk to your roommates about your hemophilia and your treatment schedule
  • Update your address so that your medications are shipped to you or to a nearby friend or family member
  • Determine an emergency plan. Start by saving the number of your emergency contact in your phone and by posting it where others can see it quickly
  • Identify yourself in case of emergency by always wearing your medical-alert bracelet or device

Discover more ways to prepare for care and emergencies.

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Are there communities and advocacy groups I can join?

There are many patient advocacy and support groups in the hemophilia community. These organizations can help you connect with patients and caregivers and provide you with resources to support you during your journey:

CHES Foundation

Coalition for Hemophilia B

Hemophilia Federation of America

Hope Charities

National Bleeding Disorders Foundation

World Federation of Hemophilia

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What can I do if I’m having trouble affording my medicine?

Managing treatment costs and paying for medicine can be overwhelming. We’ve got resources on how to help manage costs and information on where you may be able to find financial support for Pfizer medications.

Get help navigating costs