Nathan Visweshwar
University of South Florida, USA
Title: Validity of on demand treatment in hemophilia patients based on patient's perception of a joint bleed impact on resources in developing countries
Biography
Biography: Nathan Visweshwar
Abstract
It is anticipated that the child born in year 2013 with hemophilia will have a normal lifespan. About 80% of patients with hemophilia live in developing countries. The world federation of hemophilia is aiming for “treatment for all” patients with hemophilia. The treatment paradigm has shifted from on demand basis to primary prevention. In developing countries, primary prophylaxis with factor VIII (costing about 300,000 US dollars for each person) is unlikely to happen in the near future. On demand therapy, mainstay of treatment in developing parts of the world is about 150,000 USD. The cost escalates as the product specificity, purity and longevity improves. World federation of hemophilia chapters assist in importing factor concentrates. Patients in the remote parts of the developing world still depend on cryoprecipitate/fresh frozen plasma for their bleeds. Infective complications from these products cause HIV (1.2%), hepatitis B (6%) and hepatitis C (23%) and obesity secondary to lack of physical activity, add to the cost. There is paucity of scientific data to guide treatment in patients who are on demand therapy, as what is perceived as a bleed by the patient, may be pain from other causes. Ultrasound of the joint has shown consistent sensitivity and specificity is valuable in assessing joints for other complications including synovitis, fibrosis/osteoarthritis. Optimal utilization of the factor concentrates can only be achieved by education, expedited physical therapy and evaluation of the joint for secondary complications, early intervention and prenatal diagnosis for expectant mothers (5Es). We have long way to achieve the goal of “treatment for all” in hemophilia.