Bengaluru: Haemophilia patients can now hope for a more active and normal life, as state govt will provide them with preventive drug meant to stop bleeds, joint aches and other complications caused by the genetic disorder. Govt on Wednesday launched ‘Kusuma Sanjeevini’, a scheme to provide free prophylactic treatment at 36 Integrated Treatment Centres for Haemoglobinopathies and Haemophilia (ICHH) in district and taluk hospitals. The new drug, Emicizumab, a non-factor monoclonal antibody administered once a month, can prevent bleeding. Until now, they could receive treatment only after they suffered a bleed.For families with young patients, the move brings relief. Nine-year-old Sarvesh M has been in and out of hospital numerous times since he was two-and-a-half-year-old. “From nose and ear bleeds to brain bleeds, we have seen it all. He was often rushed to Victoria Hospital after a fall. He missed many days of school,” said his mother, Mallika Munikrishna from Jigani. With preventive care, she hopes to plan hospital visits during holidays instead of emergencies.The family from Girinagar is also elated with the possibility of giving their son, five-year-old Yuvaraj G M a normal life. He was diagnosed when he was just 3.5 months old. “Now we can let him play freely after years of caution,” said his father, Mahantesh G K.Padma Shri awardee and haemophilia patient Dr Suresh Hanagavadi, who runs Karnataka Hemophilia Society, said, “It will help patients stay bleed-free and avoid frequent disruptions.”Health minister Dinesh Gundu Rao said 200 patients, including children with life-threatening bleeds, received the drug during a trial last year and none reported a single bleed. The programme will now expand to around 1,000 patients. “Govt has earmarked Rs 42 crore for haemophilia care, including Rs 17 crore for the new drug. Prophylaxis will cost about Rs 5 lakh per patient annually, still cheaper than treating repeated bleeds with clotting factors,” he said. Supplies have been sent to all district hospitals. Health department has also introduced dedicated ambulance services to provide free pick-up and drop for haemophilia patients to and from ICHH centres for treatment and emergencies. At the launch, deputy chief minister D K Shivakumar said families should not lose hope. “Not everyone can afford such expenses. Karnataka govt will support the children and their parents,” he said. Haemophilia (A or B) is an inherited disorder caused by deficiency of clotting factors VIII or IX. Predominantly affecting males, it leads to spontaneous bleeding, deep bruising, joint pain and swelling, frequent nosebleeds, and blood in urine or stools. Karnataka has 2,621 haemophilia patients, including 685 children.
