Women and Girls with Hemophilia Receiving Care at Specialized Hemophilia Treatment Centers in the United States
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Women and Girls with Hemophilia Receiving Care at Specialized Hemophilia Treatment Centers in the United States

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    Females may have hemophilia with the same factor VIII (FVIII) or factor IX (FIX) levels as affected males. Characterization of females with hemophilia would be useful for health care planning to meet their unique needs. Federally-funded Hemophilia Treatment Centers (HTCs) in the United States contribute data on all individuals with bleeding disorders receiving care to the Population Profile (HTC PP) component of the Community Counts Public Health Surveillance of Bleeding Disorders project.


    To estimate the number of females with hemophilia receiving care at HTCs in the U.S. and compare their characteristics with those of males with hemophilia.


    HTC PP data collected on people receiving care at an HTC from January 2012 through September 2020 with hemophilia A and B were evaluated by sex for demographic and clinical characteristics.


    A factor level <40% was reported for 23,196 males (97.8%) and 1,667 females (47.6%) attending HTCs; 51 (0.48%) severe, 79 (1.4%) moderate, and 1,537 (17.9%) mild hemophilia patients were female. Females were older, more often White, and less often non-Hispanic than males. Females were less likely to have history of HIV or HCV infection, even among those with severe disease, but twice as likely to have infection status unknown. Females with mild hemophilia were more often uninsured than males.


    Females with severe or moderate hemophilia are uncommon, even in specialized care centers; however, almost 1 in 5 patients with mild hemophilia was female, indicating needs for specialized care based on factor level and history for affected females.

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