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Data & Statistics

In the United States

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  • Hemophilia affects 1 in 5,000 male births. About 400 babies are born with hemophilia each year.

  • The exact number of people living with hemophilia in the United States is not known. A CDC study conducted in six states in 1994 estimated that about 17,000 people had hemophilia at that time. Currently, the number of people with hemophilia in the United States is estimated to be about 20,000, based on expected births and deaths since 1994.

Diagnosis

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  • Hemphilia data chart showing the age of diagnosis among children less that 2 years of ageIn 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, 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. Special blood tests are required to make the diagnosis.

Treatment

  • A CDC-sponsored randomized clinical trial found that children who were treated on a regular basis to prevent bleeding had less evidence of joint damage by 6 years of age than did those who were treated only after a bleed had started.
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  • About 70% of people with hemophilia in the United States receive multidisciplinary, comprehensive care in a network of federally funded hemophilia treatment centers.
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  • Mortality rates and hospitalization rates for bleeding complications from hemophilia were 40% lower among people who received care in hemophilia treatment centers than among those who did not receive this care.
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Complications

Treatment
  • Some of the products used to treat bleeds in people with hemophilia are made from plasma from donated blood. Manufacturing and viral inactivation steps have made these products very safe. A blood safety surveillance system in place since 1998 has found no new infections with hepatitis or HIV associated with these products among hemophilia patients.
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  • Some people with hemophilia develop an inhibitor (antibody) to the treatment product that makes the product ineffective at stopping a bleeding episode. The incidence rate of this potentially very serious complication is estimated to be about 2.75 cases per 1,000 person years among people with hemophilia who have used treatment products more than 150 times.
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Bleeding
  • A CDC study that examined surveillance data on more than 500 babies with hemophilia found that more than 70% had suffered a bleeding episode before 2 years of age, and one in five of these bleeds involved the head.
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  • People with hemophilia who learn how to treat their bleeds at home are less likely to be admitted to the hospital for a bleeding complication.
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Joint Disease
  • CDC data have shown that in addition to increasing severity of hemophilia, overweight, as measured by body mass index (BMI), is strongly associated with joint mobility limitations.
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    • These same data show that the rates of overweight and obesity among children and adolescents with hemophilia are similar to those among the general population, which are currently at epidemic proportions.

  • Septic arthritis, also called infectious arthritis, is an infection located in a joint caused by bacteria or, more rarely, by a fungus or virus. The incidence of septic arthritis among people with hemophilia is 15 to 40 times higher than that among the general population. These infections may lead to a faster decline in joint mobility in people with hemophilia.
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Heart Disease
  • People with hemophilia have unique risk factors such as infusion of factor concentrates and infection with HIV that may predispose them to heart disease as their life expectancy increases.
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Renal Disease
  • People with hemophilia have risk factors such as HIV infection, inhibitors, and kidney bleeding that have been associated with acute and chronic renal disease.
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