Bengaluru: In Jan, Dr Suresh Hanagavadi, a native of Davanagere and founder of the Karnataka Hemophilia Society, received an unexpected phone call informing him he had been chosen for the Padma Shri. The recognition followed more than four decades of advocacy for people with hemophilia, a disorder in which blood fails to clot due to missing factors. Dr Hanagavadi is himself one of his blood brothers, as he calls fellow patients diagnosed in childhood. In an interview with TOI, he spoke about his journey, gaps that remain, and advancements offering new hope.Excerpts:-How did your own experience shape your advocacy on hemophilia?I was diagnosed very young, when Karnataka had neither proper laboratories nor treatment. Childhood was difficult. I missed school because of painful bleeding and grew up overprotected.The turning point came in Harihara, where I saw my maternal uncle suffer and die from the same condition. He sensed a brain bleed and sought help at a district hospital, but was dismissed. Within days he became paralysed and died.That experience gave me purpose. I chose medicine so no family would lose a loved one due to ignorance or lack of care. That journey still drives my work across Karnataka.-What are the short-term and long-term needs on the ground?In the short term, Karnataka needs awareness and clinical training at the district level so hemophilia is recognised early. Many patients from Kalyana Karnataka to Malnad remain undiagnosed because nearby hospitals lack diagnostic facilities.Long-term needs are systemic. Families must have assured access to clotting-factor medicines through the public system, as costs are beyond most households. Children need prophylactic treatment to prevent permanent disability by adolescence. Laboratories capable of factor testing should exist in all govt medical colleges so patients need not travel to Bengaluru or Mysuru for confirmation.-What breakthroughs and advancements have emerged in care?Progress has been significant and Karnataka is benefiting. Clotting factors with extended half-life remain active longer, reducing injection frequency, and recombinant products improved safety.Most important are non-factor therapies that rebalance clotting using monoclonal antibodies. These can be given as subcutaneous injections, sometimes once a month, and can achieve near-zero bleeding. Because disability is largely preventable when bleeding is controlled early, such therapies are transformative.Our advocacy aims to ensure these treatments reach the public system so children from ordinary families, not only those who afford private care, can live normal lives.-How can children with hemophilia avoid missing school?Preventing bleeding is key. With regular prophylaxis, especially newer long-acting or non-factor options, children can stay largely bleed-free and attend school. This lets them study, build friendships, and grow with confidence.Awareness among teachers, anganwadi workers, and parents is vital, particularly in rural and semi-urban areas where misconceptions persist. When schools respond with understanding, dropouts fall. Ensuring uninterrupted education is both a medical and social responsibility.-What support is needed for people living with hemophilia?Adults need inclusion in education and employment. As a lifelong condition affecting mobility, finances, and mental well-being, it requires recognition within disability frameworks, workplace support, and access to job reservations.Equally important are opportunities for higher education, counselling, and skills so individuals can pursue sustainable careers rather than depend on families. Society must see that patients simply lack one clotting protein. With the right policies and medical support, people with hemophilia can live independently and contribute to Karnataka’s future.
