Comprehensive care for hemophilia and related inherited bleeding disorders: why it matters

Comprehensive hemophilia treatment centers (HTCs) were first inaugurated more than 50 years ago. In 1976, a federally funded HTC network was created in the United States, making multidisciplinary care for patients with hemophilia and other inherited bleeding disorders available throughout the country for the first time. Education of the patient and healthcare professional in the management of bleeding became a mainstay of these programs. The HTCs began surveillance of the complications of treatment, such as hepatitis and HIV. The high rate of HIV infection in the hemophilia population from contaminated clotting factor concentrates forced an adaptation of HTCs to manage the medical and psychosocial consequences of these diseases. In addition, expanded surveillance for potential new therapy-associated complications became a legacy of these efforts. From the HIV era until the present, HTCs have undertaken expanded clinical research (drawing on a new scientific understanding regarding hemostasis and new knowledge regarding the management of quality of life) to study new methods to improve the well-being of patients with hemophilia. The further research has extended to phase 1 gene transfer trials for hemophilia A and B. Although the prospect for a complete cure for patients with hemophilia is some time away, HTCs in the 21st century continue to vigorously research a cure. In the interim, the HTC model continues to provide essential services that are being reassessed in light of new scientific information to prevent the complications that have defined the clinical picture of hemophilia.