Indian Society for Clinical Research is now working to create an awareness for hemophilia patients to participate in clinical trials and control the bleeding disorder.

On the occasion of World Hemophilia Day observed on April 17, this year it will focus on encouraging the global bleeding disorders community to Speak out. Create change.

An estimated 1 in 1000 people have a bleeding disorder; close to seven million men, women and children around the world, but 75 per cent of them don’t know it and receive little or no treatment.   Haemophilia is a rare bleeding disorder that affects approximately one in 10,000 people. Those with haemophilia do not have enough clotting factor VIII (haemophilia A) or, less commonly, clotting factor IX (haemophilia B), in their blood.

There is need to increase awareness of haemophilia and other inherited bleeding disorders. This is a critical effort with an ultimate objective to ensure better diagnosis and access to care.

A haemophilia patient will usually have it for life and the severity depends on the amount of factor VIII or factor IX in the blood. Without treatment someone with severe hemophilia is not expected to survive to adulthood which is why there are ongoing global efforts to find new treatment and cure for haemophilia.

“While the number of patients suffering from haemophilia in India may be less in comparison to other life threatening diseases, the continued determination by the medical research community to search for treatments and cures must be recognised,” says Suneela Thatte, president, Indian Society for Clinical Research.

“In a country such as ours, where we struggle with a huge disease burden, greater awareness and education on the benefits of participating in clinical trials must reach the public at large so that even those with rare diseases have a better quality of life and hope of survival,” she added.

According to a patient suffering from hemophilia who is in a post trial follow-up phase in India, the injections taken earlier provided relief only for eight hours. With the new trial drug which he is part of is seen to be effective for up to a week allowing him to carry out normal activities without need to rush to the hospital every eight hours for an injection.