Data and Statistics on Hemophilia

At a glance

  • As many as 33,000 males are estimated to be living with hemophilia in the United States.
  • Hemophilia is associated with spontaneous (unexplained) bleeding and excessive bleeding after injury. This can include repeated bleeding within joints that can lead to chronic joint disease.
  • Bleeding symptoms in females with hemophilia are usually milder than symptoms in males with hemophilia. Nonetheless, females with hemophilia have been found to have reduced joint range of motion compared with females with no bleeding disorder.
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Key findings

Incidence and prevalence1

  • The exact number of people living with hemophilia in the United States is not known. A CDC study that used data collected on patients receiving care in federally funded hemophilia treatment centers during the period 2012–2018 estimated that as many as 33,000 males in the United States are living with the disorder.
  • Hemophilia A (low levels of clotting factor VIII [8]) is three to four times as common as hemophilia B (low levels of clotting factor IX [9]).
  • Among all males with hemophilia, just over 4 in 10 have the severe form of the disorder.

Incidence and Prevalence‎

Prevalence is a statistical concept referring to the number of cases of a disease that are present in a particular population at a given time. Incidence refers to the number of new cases that develop in a given period of time.


  • In the United States, most people with hemophilia are diagnosed at a very young age. Based on CDC data, the median age at diagnosis is 36 months for people with mild hemophilia, 8 months for those with moderate hemophilia, and 1 month for those with severe hemophilia.
  • In about two thirds of cases diagnosed as babies, there is a family history of hemophilia. The diagnosis of hemophilia is made using a special blood test and most babies can be tested soon after birth. Sometimes prenatal genetic testing is done to diagnose hemophilia before birth.
  • For the one third of babies born with hemophilia in families with no known history of hemophilia, the diagnosis is made when an unusual bleeding event occurs.

Many children with hemophilia are diagnosed before they are 2 years old.



  • In both hemophilia A and B, the blood does not clot properly, which can lead to spontaneous internal bleeding (bleeding that occurs for no known reason) as well as excessive bleeding after injuries or surgery.34
  • Hemophilia can cause repeated bleeding within joints that can lead to chronic joint disease, pain, and mobility limitations. Hemophilia also poses a risk for bleeding in the head and sometimes in the brain which can cause long term problems, such as seizures and paralysis. Death can occur if the bleeding cannot be stopped.34
  • The extent of bleeding into the joints and other complications varies by the severity of the hemophilia (which is defined based on how low the level of clotting factors is in the blood).34
  • In addition to hemophilia severity, being overweight, as measured by body mass index (BMI), is strongly associated with joint mobility limitations.34
  • Because hemophilia is inherited through mutations to genes located on the X chromosome, bleeding symptoms in females with hemophilia are usually milder than symptoms in males with hemophilia. Nonetheless, females with hemophilia A or hemophilia B have been found to have reduced joint range of motion compared with females with no bleeding disorder.5
  • The best way to treat hemophilia, is to replace the missing blood clotting factor so that the blood can clot properly. This is usually done by infusing (injecting into a vein) commercially prepared factor concentrates. Episodic care is used to stop a patient's bleeding episodes; prophylactic care is used to prevent bleeding episodes from occurring.
  • A CDC-sponsored randomized clinical trial found that children who were treated on a regular basis to prevent bleeding (prophylactic care) had less evidence of joint damage by 6 years of age than did those who were treated only after a bleed had started (episodic care).6

Inhibitors to treatment products

  • About 1 in 5 people with hemophilia A and about 3 in 100 people with hemophilia B will develop an antibody—called an inhibitor—to the treatment products (called factor concentrates) used to stop or prevent their bleeding episodes.78
  • People with hemophilia who develop an inhibitor are twice as likely to be hospitalized for a bleeding complication, and they are at increased risk of death.9
  • A 6-year study of patients in 17 US hemophilia treatment centers found that all patients with hemophilia can be at risk for an inhibitor and regular screening for an inhibitor is important.10

Other health problems11

  • As more people with hemophilia are living longer, it's important to know what other health problems are affecting the aging hemophilia community to better understand their healthcare needs. A CDC study evaluated the prevalence of health conditions in more than 2,200 men with hemophilia who were aged 45 years or older in 2013 to 2021.
  • In comparison with men in the general US population, men with hemophilia had
    • Lower prevalence of coronary artery disease, stroke, heart attack, and leukemia, and
    • Higher prevalence of anxiety, depression, and obesity.
  • Additionally, nearly 3 in 4 men with hemophilia had a history of prior hepatitis C virus (HCV) infection, and about 1 in 4 had a history of human immunodeficiency virus (HIV) infection.
  • Men with hemophilia who had a history of HIV or HCV infection had a higher prevalence of chronic kidney disease, liver cancer, anxiety, and depression than those without infections.

Community Counts Data Visualization‎

Check out the Community Counts Data Visualization Tool for the most up to date data from Community Counts.
  1. Soucie JM, Miller CH, Dupervil B, Le B, Buckner TW. Occurrence rates of haemophilia among males in the United States based on surveillance conducted in specialized haemophilia treatment centres. Haemophilia 2020; 26:487-93.
  2. Kulkarni R, Soucie JM, Lusher J, Presley R, Shapiro A, Gill J, Manco-Johnson M, Koerper M, Mathew P, Abshire T, DiMichele D, Hoots K, Janco R, Nugent D, Geraghty S, Evatt B; Hemophilia Treatment Center Network Investigators. Sites of initial bleeding episodes, mode of delivery and age of diagnosis in babies with haemophilia diagnosed before the age of 2 years: A report from The Centers for Disease Control and Prevention's (CDC) Universal Data Collection (UDC) project. Haemophilia 2009;15(6): 1281–1290.
  3. Schieve LA, Byams VR, Dupervil B, et al. Evaluation of CDC's Hemophilia Surveillance Program — Universal Data Collection (1998–2011) and Community Counts (2011–2019), United States. MMWR Surveill Summ 2020;69(No. SS-5):1–18. DOI:
  4. Witmer C, Presley R, Kulkarni R, Soucie JM, Manno CS, Raffini L. Associations between intracranial haemorrhage and prescribed prophylaxis in a large cohort of haemophilia patients in the United States. Br J Haematol 2011;152(2): 211–216.
  5. Sidonio RF, Mili FD, Li T, Miller CH, Hooper WC, DeBaun MR, Soucie JM; Hemophilia Treatment Centers Network. Females with FVIII and FIX deficiency have reduced joint range of motion. Am J Hematol 2014;89: 831–836.
  6. Manco-Johnson MJ, Abshire TC, Shapiro AD, Riske B, Hacker MR, Kilcoyne R, Ingram JD, ... Evatt BL. Prophylaxis versus episodic treatment to prevent joint disease in boys with severe hemophilia. N Engl J Med 2007;357(6): 535-544.
  7. Wight J, Paisley S. The epidemiology of inhibitors in haemophilia A: A systematic review. Haemophilia. 2003; 9(4):418-435.
  8. Puetz J, Soucie JM, Kempton CL, Monahan PE, and Hemophilia Treatment Center Network Investigators. Prevalent inhibitors in hemophilia B subjects enrolled in the Universal Data Collection database. Haemophilia. 2015; 20(1):25-31.
  9. Walsh CE, Soucie JM, Miller CH; United States Hemophilia Treatment Center Network. Impact of inhibitors on hemophilia A mortality in the United States. Am J Hematol. 2015;90: 400-405.
  10. Soucie JM, Miller CH, Kelly FM, Payne AB, Creary M, Bockenstedt PL, Kempton CL, Manco-Johnson MJ, Neff AT; Haemophilia Inhibitor Research Study Investigators. A study of prospective surveillance for inhibitors among persons with haemophilia in the United States. Haemophilia. 2013 Mar;20(2):230-7.
  11. Soucie JM, Le B, Dupervil B, Poston JN. Prevalence of comorbid conditions among older males with haemophilia receiving care in haemophilia treatment centers in the United States. Haemophilia. 2022;28: 986–995.