Lack of diagnostic facilities and the prohibitive cost of blood components, the essential drug for treating Haemophilia, has crippled the care of thousands of Haemophilia patients in the State.
The State needs to set up a comprehensive care centre for its Haemophilia patients so as to at least save the younger generation from the crippling disabilities caused by this disorder, says George A. Tharakan, a haemophiliac himself, and one of the founders of the Haemophilia movement in India during the days when medicines for the disease were not available in the country. Haemophilia is a debilitating hereditary disorder affecting one in 5,000 or 10,000 males.
Mr. Tharakan has now submitted a formal proposal to Chief Minister Oommen Chandy detailing the need for a comprehensive care centre for haemophilia in Kerala and the current problems faced by the patients.
Haemophilia is a rare genetic disorder which prevents blood from clotting due to the lack or absence of one of the 13 clotting factors in blood. In the event of an injury, if prompt medical attention is not given, the patient could die of bleeding.
The patient can be saved only by replacing the deficient clotting factor in the blood and it is the expenses involved in procuring factor concentrates — which is a blood product produced through recombinant technology — that has caused difficulties to many poor families in the State with haemophilia patients.
“Though it is a hereditary disease, in about 30 per cent of the cases, there has been no prior history of Haemophilia in the family. This could be because of genetic mutations. Only the males are afflicted with the disease while the females are the carriers of the gene. We have only rough estimates about the number of Haemophilia patients in the State — about 4,000 to 6,000 — as there has never been a proper data collection exercise on the State’s Haemophilia burden,” says Mr. Tharakan.
Knowing the number of Haemophilia patients in the State, in each region is important when it comes to setting up proper treatment facilities and arranging for the storage of factor concentrates. The local bodies have a big role to play in this.
Lack of diagnostic facilities to determine the deficient clotting factor in blood is another major problem that is hampering the treatment of this disease. The patient needs to be transfused the deficient clotting factor whenever bleeding occurs to save his life. At present, all Haemophilia patients have to go to CMC Vellore to get this test done.