The natural evolution of haemophilia care: developing and sustaining comprehensive care globally

Abstract

Comprehensive care is vital for patients with haemophilia to prevent early death and free patients from the complications that inhibit living normal lives. Experience has shown that once introduced in a country, there is a progressive restoration of normal healthy lives to the haemophilia community. Accompanying this progress is a gradual decreased dependency on the haemophilia comprehensive centre - except during brief periods when expertise contained within the comprehensive centre is mandatory for life-saving clinical management or to prevent severe morbidity. During each stage of the natural evolution of comprehensive haemophilia care in a country, challenges to the existence of the centre occur, which threaten the comprehensive treatment concept. The haemophilia community must understand this natural evolution and be prepared to work collaboratively with governments, physicians and other patients to ensure that centres retain the expertise to meet the emergent needs when they arise.