The evolution of comprehensive haemophilia care in the United States: perspectives from the frontline. (28th June 2016)

• Record Type: Journal Article
• Authors: Aledort, L. M.
• Is Part Of: Haemophilia. Volume 22:Number 5(2016:Sep.)
• Page Start: 676
• Page End: 683
• Publication Date: 2016-06-28
• Subjects: clotting factor concentrate -- comprehensive care -- haemophilia -- haemophilia treatment centres -- inhibitors; Hemophilia -- Periodicals; 616.1572005
• DOI: 10.1111/hae.12970
• Languages: English
• ISSNs: 1351-8216

Abstract

Abstract : The establishment of dedicated comprehensive treatment centres more than a half century ago transformed the management of haemophilia in the United States. Formerly, a disease associated with crippling disability and premature death, today, persons with haemophilia who are treated appropriately from infancy and do not develop inhibitors can expect a normal life expectancy and relatively few bleeding episodes. The evolution of the comprehensive haemophilia care, while chastened by the viral epidemics of the 1980s, has been marked by ongoing advances, including prophylaxis, immune tolerance induction, new drugs and gene therapy research. Current challenges include sustaining the comprehensive care model despite decreased funding and expanding the delivery and affordability of comprehensive haemophilia care.