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Haemophilia care in Taiwan has come a long way over the past 35 years, from the absence of specialised haemophilia treatment centres before 1984 to the establishment of treatment centers in the majority of medical centers, the listing of haemophilia as a catastrophic illness with full treatment reimbursement by the Taiwan National Health Insurance (NHI), and the implementation of full NHI coverage for prophylaxis therapy. This has led to outcome improvements such as reduced bleed-related morbidity and mortality, fewer viral infections, and enhanced overall multi-modality care. Most people with haemophilia (PWH) are now able to live normal, active lives. Early diagnosis has improved through increased awareness, physician education, and prenatal diagnosis; while comprehensive care, including state of the art rehabilitation and orthopaedic management for haemophilic arthropathy, eradication therapy for chronic hepatitis C, and better treatments for human immunodeficiency virus, allows PWH to enjoy a better quality of life and improved survival. Efforts are now being made to raise prophylaxis rates through full NHI reimbursement and the use of extended half-life recombinant factor products. Overall, Taiwan has made great strides in haemophilia care and we would like to share these experiences for the benefit of all healthcare providers involved in haemophilia care.
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http://dx.doi.org/10.1016/j.jfma.2021.07.017 | DOI Listing |
Blood
March 2025
Indiana Hemophilia and Thrombosis Center, Indianapolis, Indiana, United States.
Type 1 plasminogen deficiency (PLGD), an ultra-rare disorder caused by PLG pathogenic variants, results in decreased levels of immunoreactive and functional plasminogen. PLGD can cause fibrin-rich pseudomembranes on mucosa that impair tissue/organ function, impact quality of life, and are potentially life-threatening. Lesion regression/resolution is facilitated by intravenous administration of human plasma-derived Glu-plasminogen (IV PLG concentrate), the first and only FDA-approved specific treatment, licensed in 2021.
View Article and Find Full Text PDFRes Pract Thromb Haemost
January 2025
Research Department, National Bleeding Disorders Foundation, New York, New York, USA.
The care of people with hemophilia with access to treatment has evolved over the past 70 years, with an average life expectancy like unaffected peers. For people with hemophilia living in low- and middle-income countries, the same is not true because of the lack of access to diagnosis and treatment. It is imperative to close gaps in care that exist throughout the world.
View Article and Find Full Text PDFAnaesthesiologie
March 2025
Klinik für Anästhesiologie, Intensivmedizin und Schmerztherapie, Universitätsklinikum des Saarlandes und Medizinische Fakultät der Universität des Saarlandes, 66421, Homburg (Saar), Deutschland.
Perioperative bleeding is and remains a major complication during and after surgical interventions, resulting in increased morbidity and mortality. The main causes of a non-primary vascular-related bleeding are congenital or multifactorial pre-existing hemostatic disorders that have not yet been diagnosed, the operating procedure itself and acquired hemostatic abnormalities as a secondary phenomenon, e.g.
View Article and Find Full Text PDFHaemophilia
March 2025
Division of Hematology and Bone Marrow Transplantation, Azienda Ospedaliero-Universitaria Policlinico G. Rodolico - San Marco, Catania, Italy.
Background: Acquired haemophilia A (AHA) is a rare and severe bleeding disorder generally associated with pregnancy or aging. Spontaneous remission and prompt inhibitor eradication are described more frequently in postpartum cases. We evaluated retrospectively 15 postpartum AHA cases between 2007 and 2023 in order to evaluate response in terms of inhibitor eradication.
View Article and Find Full Text PDFHaemophilia
March 2025
Department of Pediatrics, Hemophilia and Thrombosis Center, University of Colorado Anschutz Medical Campus, Aurora, Colorado, USA.
Background: Despite reports of elevated rates of osteoporosis and fractures in persons with haemophilia (PwH) and von Willebrand disease (PwVWD), routine bone health screening using dual-energy X-ray absorptiometry (DEXA) scans is not consistently implemented for this population across all Haemophilia Treatment Centres (HTCs) in the United States.
Objectives: The primary aim of this study was to examine rates of screening for bone health in PwH and PwVWD with vitamin D levels and DEXA scans.
Methods: We conducted a survey of all federally funded HTCs nationwide from June 2023 to August 2023.
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