Bengaluru: The goal of haemophilia treatment is no longer just to prevent life-threatening bleeds, but to help people with the inherited bleeding disorder live lives as close to normal as possible, experts said at National Haemostasis Update 2026, an annual scientific meet organised by Indian Association for Haemophilia and Allied Disorders (IAHAD) Saturday.Clinicians said advances in treatment over the past decade have transformed both patient outcomes and expectations. Wider access to clotting factors, preventive therapy and newer non-factor treatments has meant that children with haemophilia are increasingly able to attend school regularly, participate in sports and social activities, and aspire to careers and relationships without being defined by their condition.“Clotting factors were the first generation of treatment. Now we have several non-factor therapies that are much easier to administer,” said Dr Tulika Seth, professor of haematology, All India Institute of Medical Sciences (AIIMS), New Delhi. Unlike conventional clotting factors, which require repeated intravenous injections, some of the newer drugs are longer acting and can be given as subcutaneous injections.“The biggest gap is awareness of the disease; the treatments and the options available,” said Dr Alok Srivastava, president, IAHAD. He also stressed the need to move towards home-based treatment. “In developed countries, home treatment is the norm. If patients are doing well on treatment, they should not have to travel long distances to hospitals for every dose,” he saidChanging trendsDr Varun Kaul, professor, department of pediatrics, Guru Gobind Singh Medical College & Hospital, Faridkot recalled earlier, many children with haemophilia would isolate themselves at school out of fear that even a small push from a classmate could trigger a bleed. But, now regular treatment allows them to participate in school and everyday activities with much greater confidence.For clinicians, the biggest change has been in what patients expect from treatment. “As doctors, we think of preventing bleeds and hospitalisations. But that isn’t what a child wants. A child wants to play football, go on picnics, ride a bicycle and be picked for a sports team with everyone else. Ultimately, people with haemophilia want a near-normal life,” said Dr Anupam Dutta, assistant professor of medicine, Assam Medical College and Hospital, Dibrugarh.What is hemophilia?Haemophilia A and B are inherited bleeding disorders caused by a deficiency of clotting factor VIII or IX. The condition, which predominantly affects males, impairs the blood’s ability to clot, leading to spontaneous bleeding, deep bruising, joint pain and swelling, frequent nosebleeds, and blood in the urine or stools.
