A New Study of Hemophilia Occurrence Finds Many More Cases in the United States

Hemophilia is an inherited bleeding disorder in which the blood does not clot properly due to a lack or decrease in a protein called clotting factor. The two most common types of hemophilia are hemophilia A, which is due to a lack of clotting factor VIII (8) and hemophilia B, which is due to a lack of clotting factor IX (9). Either type can lead to spontaneous bleeding into muscles, organs, and joints as well as prolonged bleeding following injuries or surgery. The condition primarily affects males.

The complications of hemophilia can be severe, and treatment is often expensive. It is important to know how many people in the United States have hemophilia. This information can be used to understand the healthcare needs of those living with hemophilia, and thus, aid in service planning.

In the early 1990s, the Centers for Disease Control and Prevention (CDC) conducted a study with health departments in six U.S. states to count the number of males with hemophilia in those states. Using those results, the researchers estimated that 18,000 males in the United States had hemophilia. Additionally, about two-thirds of these individuals were receiving care in the U.S. network of specialized and comprehensive Hemophilia Treatment Centers (HTCs).

About this Study

Researchers from CDC and the U.S. HTC Network conducted a study using data collected during 2012–2018 on all male patients who visited federally supported U.S. HTCs. The study aimed to

  • Update the estimated number of males with hemophilia currently living in the United States; and
  • Estimate the birth rate of new cases in the United States each year.

We invite you to read the study’s abstract here.

Did you know? Prevalence is a statistical concept referring to the number of cases of a disease that are present in a particular population at a given, whereas incidence refers to the number of new cases that develop in a given period of time.

We invite you to read the study’s abstract here.

Main Findings From this Study

  • The current number of males with hemophilia living in the United States is estimated to be between 30,000 and 33,000.
  • The estimated prevalence of hemophilia in the United States is 12 cases per 100,000 U.S. males for hemophilia A and 3.7 cases per 100,000 U.S. males for hemophilia B.
  • Hemophilia prevalence varies widely across the United States and is highest in Midwestern and Northeastern states.
  • The estimated incidence of hemophilia among U.S. births is 1 birth per 5,617 male births for hemophilia A and 1 birth per 19,283 male births for hemophilia B.
  • Among all males with hemophilia, just over 4 in 10 have the severe form of the disorder.
  • The average age of persons with hemophilia in the United States is 23.5 years.
  • Compared to the distribution of race and ethnicity in the U.S. population, white race is more common, Hispanic ethnicity is equally common, while black race and Asian ancestry are less common among persons with hemophilia.

Critical Gaps and Future Directions

Gaps – A number of observations from this study need further investigation:

Future Directions

More work is needed to get a better estimate of how many people living with hemophilia do not utilize HTCs for their care. It would also be important to know whether the health of this group differs from the health of people with hemophilia who are cared for in the HTCs. Similar studies are needed to assess the size and characteristics of women with hemophilia A and B.

More Information

More information about hemophilia is available here. Please visit the following link for more information about hemophilia.

Paper Reference

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, May;26(3):487-493.

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