“We are almost like the original managed care plan,” stated Joe Pugliese of the Hemophilia Alliance. The group started in the 1970s when the hemophilia patient community went to Congress and said “we need to have a comprehensive care model for adequately treatment people with hemophilia.”
And so began the Hemophilia Alliance, a not-for-profit organization of federally funded hemophilia treatment centers that is working to ensure its member have the expertise, resources and public support to sustain their integrated clinical and pharmacy services for persons with hemophilia and other bleeding disorders.
Hemophilia A is a genetic disorder caused by missing or defective factor VIII, a clotting protein. Symptoms will vary and are dependent on the level factor VIII present. Treatment for hemophilia is factor VIII replenishment. Most hemophilia A patients take a recombinant factor VIII product to control bleeding and numerous products are available. Those with serious hemophilia are also likely to be on a prophylaxis regimen.
Hemophilia B is due to missing or defective factor IX and like hemophilia A, this condition has different levels of severity based on the level of the clotting factor. Also like hemophilia A, treatment for hemophilia B is largely to replenish factor XI and numerous products are on the market for this community.
Treatment and symptom management for hemophilia is best controlled by persons highly trained in hemophilia. As such, specialty treatment centers are a vital part of this community.