Women and girls with haemophilia receiving care at specialized haemophilia treatment centres in the United States

• Authors: Robert Sidonio Jr, Emory University; Vanessa Byams, Emory University; CH Miller, Ctr Dis Control & Prevent; JM Soucie, Ctr Dis Control & Prevent; AB Payne, Ctr Dis Control & Prevent; RF Sidonio, Emory University; TW Buckner, Univ Colorado; CJ Bean, Ctr Dis Control & Prevent
• Journal Title: HAEMOPHILIA
• Volume: Volume 27, Number 6
• Publisher: WILEY | 2021-09-04, Pages 1037-1044
• Type of Work: Article
• Publisher DOI: http://doi.org/10.1111/hae.14403
• Keywords: Science & Technology; Life Sciences & Biomedicine; Hematology; factor IX; factor VIII; haemophilia A; haemophilia B; CARRIERS

Abstract

Introduction: Females may have haemophilia with the same factor VIII (FVIII) or factor IX (FIX) levels as affected males. Characterization of females with haemophilia would be useful for health care planning to meet their unique needs. Federally-funded haemophilia treatment centres (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. Aims: To estimate the number of females with haemophilia receiving care at HTCs in the United States and compare their characteristics with those of males with haemophilia. Methods: HTC PP data collected on people receiving care at an HTC from January 2012 through September 2020 with haemophilia A and B were evaluated by sex for demographic and clinical characteristics. Results: A factor level < 40% was reported for 23,196 males (97.8%) and 1667 females (47.6%) attending HTCs; 51 (.48%) severe, 79 (1.4%) moderate, and 1537 (17.9%) mild haemophilia 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 haemophilia were more often uninsured than males. Conclusions: Females with severe or moderate haemophilia are uncommon, even in specialized care centres; however, almost one in five patients with mild haemophilia was female, indicating needs for specialized care based on factor level and history for affected females.