Shire’s data shows bleeding episode occurs every three to 15 seconds in people living with hemophilia worldwide

These findings build on existing data from the World Federation of Hemophilia (WFH), which show only 25 per cent of individuals living with hemophilia worldwide receive proper diagnosis and care, only 8 per cent of which receive prophylaxis or regular treatment to prevent bleeds. This research reinforces Shire’s ongoing commitment to innovative data collection to improve global standards of care for individuals living with rare bleeding disorders.

“As the global leader in hematology, we are committed to efforts, such as estimating the GABR, that improve our understanding of the global landscape for hemophilia and the true experience of those living with this debilitating bleeding disorder, said Leonard Valentino, M.D., global head of hematology medical affairs, Shire.

Shire developed the GABR in collaboration with renowned hemophilia institutions, including WFH. Our shared aim is to identify regions of the world with the greatest need for improved diagnosis and care for hemophilia patients. Together, we created a literature-based model to estimate the GABR at both country and global levels. A full report of the GABR model is expected to be published later in 2017.

“Shire is proud to support the global hemophilia community in honoring World Hemophilia Day,” continued Valentino. “On this day and every day, Shire is dedicated to supporting hemophilia patients through advancing early diagnosis, prophylaxis, individualized treatment options and innovative research and development efforts.”

This year, Shire is embracing WFH’s theme for World Hemophilia Day of “Hear Their Voices” and joining its partners and local advocacy organizations to raise awareness of those living with bleeding disorders. 

Hemophilia is a challenging chronic disease that causes longer-than-normal bleeding due to absent or deficient clotting factor in the blood. Hemophilia A is more common than hemophilia B; hemophilia A affects about 150,000 people, whereas hemophilia B affects about 30,000 people worldwide.

Treatment regimens typically include on-demand and/or regular prophylactic infusions of factor replacement therapy to control or prevent the risk of bleeding. People with hemophilia, working closely with their healthcare professionals, can live healthy lives with proper care and adequate treatment.

Approximately 5-7 percent of people living with hemophilia develop inhibitors. Inhibitors are a rare but serious complication in patients with hemophilia. They form when the body's immune system attacks the molecules in factor therapy, causing it to be ineffective. Bypassing agents help bypass the inhibitor to help the body form a clot and stop bleeding.

Shire’s data shows bleeding episode, living with hemophilia worldwide