KOCHI: With the 28th World Haemophilia Day falling on Tuesday, the focus is now moving to increase awareness among the public, patients, caregivers, officials and policy makers about the disease in order to improve the facilities for diagnosis and management of the disease. The day was chosen as it coincides with the birthday of Frank Schnabel, founder of the World Federation of Haemophilia, and this year’s theme is “Sharing knowledge makes us stronger’.
Haemophilia is the hereditary bleeding disorder caused by the deficiency of the clotting factor VIII (Haemophilia A) or IX (Haemophilia B). “In developed countries due to timely treatment (regular factor replacement therapy and optimum physiotherapy supported by good counseling), those with hemophilia lead a near normal life. But 70 per cent of our children become handicapped by the time they are 17 years old in our country. Though the Kerala Government entered the field only five years ago, it has made rapid strides,” said Dr N Vijayakumar, medical officer in charge of the Hemophilia Treatment Centre, District Hospital, Aluva.
“The Kerala Government has lifted a lifetime ceiling of Rs. 3, 00,000/- for treatment of acute bleeds. For those holding Karunya cards, the coverage is unlimited for on demand treatment and next year the government is embarking on prophylaxis (regular replacement therapy) for children under five years. If so, Kerala will become the first in the country to adopt prophylaxis as a treatment policy,” said Dr Vijayakumar.
“This year the stress is on sharing experiences between the patients, promoting learning by freely exchanging their knowledge ideas and opinions. The suggestions and proposals will reflect real life situations, solutions perceived by the people with hemophilia and give a direction to the policy makers while drafting the treatment guidelines and allocating funds,” he said.
The only comprehensive haemophilia care centre in the state is at the District Hospital, Aluva. Promoted by Ernakulam District Panchayat, it has state of the art facilities for lab diagnosis, counseling, factor treatment, physiotherapy and occupational therapy. Out of 851 patients on its rolls, 619 suffer from Haemophilia A, 131 from Haemophilia B and 101 from other bleeding disorders. In a short span of four years, the centre has produced 7 international publications. HTC, Aluva has planned a mega medical camp with added facilities for factor & inhibitor assay and screening for transfusion transmitted infections on Sunday from 8 am to 2 pm on the occasion.
