Succour for haemophiliacs

The Haemophilia Society of Kerala, which is providing a lot of medical and psycho-social support to haemophiliacs, is celebrating its silver jubilee.

Twenty five years ago, it was the plight of poor patients struggling to cope with this debilitating disease and the huge financial burden it imposed that prompted K.N. Pai, the then Head of the Department of Medicine at Medical College, to set up the society to help out haemophiliacs.

A haemophiliac himself, Dr. Pai, knew how difficult it was to live with the disease, given the bare minimum treatment facilities and the lack of awareness about haemophilia and its management among the medical fraternity themselves.

Twenty-five years hence, the plight of haemophiliacs remains the same. The cost of medicines and clotting factors remains expensive for patients. There are also absolutely no Government programmes to lend financial assistance to haemophiliacs, who have to spend a fortune on buying blood products.

Haemophilia is a genetic bleeding disorder in which an essential clotting factor in the blood - Factor 8 or Factor 9 - is either partly or fully missing. In such patients, even the most minor trauma or injury can trigger severe internal bleeding. Unless multiple infusions of the clotting factor are administered, the patient can die of uncontrolled bleeding.

Most hospitals do not stock this essential clotting factor. A haemophiliac coming with a bad bleeding episode to any Government hospital is managed by administering plasma and cryo precipitates as these contain the clotting actor in small proportions.

The prohibitive cost of blood products - factor concentrates cost about Rs.8 to 12 per unit and each patient would have to be administered at least 250 to 1,000 units twice a day - is a heavy burden on the families of haemophiliacs.

The society has been trying to help out poor patients by acquiring factor concentrates from the World Haemophilia Federation. The need for frequent blood transfusions also poses an increased risk of blood-borne infections like hepatitis for the haemophiliacs.

The society is lobbying with Governments and hospitals to augment the treatment facilities for haemophiliacs. It is in the process of setting up a haemophilia care and research centre in the capital.