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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 Product Safety
  • 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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  • A recent study of young children with bleeding disorders found evidence for decreasing risk of childhood infection from plasma-derived clotting factor concentrates.
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  • Hispanic patients with severe hemophilia are about twice as likely to get an inhibitor than non-Hispanic white patients.
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  • A six-year study of patients in 17 U.S. hemophilia treatment centers finds that all patients can be at risk for an inhibitor and screening for an inhibitor is important.
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Bleeding
  • Prophylaxis decreases the risk of intracranial bleeding by 50% for people with hemophilia.
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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.

  • A study of more than 10,000 patients enrolled in the UDC surveillance project revealed that boys and men who were overweight or obese were less likely to infuse clotting factor at home.
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  • Women who are hemophilia carriers were found to have reduced joint range of motion compared to non-carrier women.
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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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