World Federation Of Hemophilia Closes The Gap In Hemophilia Care

Main Category: Blood / Hematology
Article Date: 06 Jun 2008 - 1:00 PDT

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The World Federation of Hemophilia (WFH) has played a key role in bringing about great improvements in the diagnosis and treatment of all people with bleeding disorders, according to data presented by WFH president Mark Skinner at the organization's XXVIII annual meeting in Istanbul, Turkey, this week. "We can demonstrate the quantifiable and significant impact of WFH development programs," he said. "Daily, the work of the WFH is making a difference in the lives of individuals with bleeding disorders around the world."

The WFH's flagship program, the Global Alliance for Progress (GAP), has grown out of the organization's forty-five years of experience in working with national hemophilia organizations to improve treatment and care of those in developing countries. Its purpose is to "close the gap between the estimated and the actual number of people with bleeding disorders; between the amount of treatment products needed versus that available; the gap between the number of people born with hemophilia and the number who reach adulthood," Skinner explained. The WFH's success in these endeavours is supported by data from the organization's annual Global Survey, which has been conducted annually since 1998.

In the past 10 years, the number of people with bleeding disorders identified worldwide has increased from 103,000 people in 65 countries to 219,000 in 101 countries. The number of people with von Willebrand disease, the most common bleeding disorder, has increased by 100% since 1999, to 52,000 worldwide, and more than 20,000 with other rare factor deficiencies have been identified.

Another core objective of the WFH is to increase the availability of clotting factor concentrates, the safest and most effective treatment for people with hemophilia and other bleeding disorders. Global Survey data show that since 2001, worldwide consumption of factor concentrates has increased and global per capita consumption is now just over 1.25 international units (IU) per capita. (The WFH has established that one IU of factor VIII clotting factor concentrate should be the target minimum to ensure survival of the hemophilia population.) Furthermore, over 130 million IU of clotting factor concentrate has been distributed to 69 countries since the WFH's Humanitarian Aid program was launched in 1996.

The WFH has developed and optimized the essential elements of a model for the development of a sustainable national care program. The five elements of the WFH Development Model are integrated and interdependent: ensuring accurate laboratory diagnosis, achieving government support for a national program, improving the care delivery system, increasing the availability of treatment products and building a strong national patient organization.

"Let us pause today and take great pride in what we have achieved by working together these past 45 years, and realize that there is great hope in what we will achieve together in years ahead," Skinner concluded.

About Bleeding Disorders

Hemophilia is a lifelong, hereditary disorder that affects about one in every 5,000 males. von Willebrand disease is another hereditary bleeding disorder and the most common, affecting about 1 in 1,000 people. Rarer clotting factor deficiencies affect between one in 500,000 and one in 1 million people. Each of these disorders interferes in some way with blood's ability to clot properly.

With proper treatment and care, people with hemophilia lead normal lives. Without treatment, they face pain, disability, isolation, and premature death. Most people with severe hemophilia, who do not receive treatment, die before the age of 19.

About WFH

The WFH is an international not-for-profit organization dedicated to improving the lives of people with hemophilia and related bleeding disorders. Since it was established in 1963, the WFH has grown into a truly global network with member organizations in over 100 countries and official recognition from the World Health Organization.

World Federation of Hemophilia

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