April 17, 2014–The Plasma Protein Therapeutics Association (PPTA) recognizes World Hemophilia Day, an annual international event sponsored by the World Federation for Hemophilia (WFH) that seeks to raise awareness of people living with inherited bleeding disorders.
Since 1989, World Hemophilia Day has been celebrated annually on April 17. An estimated 1 in 1000 have a bleeding disorder; yet 75% receive inadequate or no treatment. This year's theme is Speak Out. Create Change., encouraging young members of the hemophilia community to assume key roles in building and supporting the bleeding disorder community.
People around the world living with hemophilia and other inherited bleeding disorders rely upon the life-saving therapies produced by PPTA member companies. PPTA and its members work tirelessly to ensure the quality and safety of these life-saving therapies. PPTA works globally to advocate on behalf of patients with these disorders.
Additionally, PPTA collaborates with patient organizations in both the U.S. and Europe, including the Committee of Ten Thousand (COTT), Hemophilia Federation of America (HFA), the National Hemophilia Foundation (NHF), the World Federation of Hemophilia (WFH) and the European Hemophilia Consortium, through its stakeholder meetings, publications and advocacy events. In particular, PPTA shares an interest and research agenda that uses health technology assessments (HTAs) as a valuable tool for demonstrating the cost effectiveness of plasma protein therapies. In the U.S., the Association also works to ensure access to medically appropriate blood clotting factor in state funded public health programs, including Medicaid via comment letters on pending legislation and educational visits with decision-makers.
PPTA administers standards and certification programs, is engaged in a broad range of regulatory issues, and works to advocate and protect patient access to these therapies. Jan M. Bult, PPTA President and CEO said, "I am particularly proud of these programs which help deliver safe and effective therapies." "Treatment for all is an important goal and PPTA supports WFH in this endeavor."
Today these therapies enable patients with plasma protein disorders to lead active, productive lives. The progress has been remarkable, but there is much work to be done. World Hemophilia Day shines a much-needed spotlight on the important needs of the bleeding disorder community, as well as the need for raising awareness, early diagnosis and effective treatment.
Created on April 17 2014.