A small cut will bleed haemophiliacs in the district dry as they will have to shell out at least Rs. 24,000 to buy blood clotting agent in private hospitals.
Even a year after registering their names with the Karunya Benevolent Fund, haemophilia patients here are yet to get blood clotting factors free of cost.
The Karunya Benevolent Fund was set up by the government to provide financial assistance to under-privileged people suffering from acute ailments.
Persons who lack blood factor that helps clotting need immediate treatment with externally supplied factor for every bleed. Haemophilia is a genetically-transmitted disease that impairs the body’s ability to help blood clotting.
The quantity of the clotting factor required for a haemophiliac during bleeding depends on the weight of the patient’s body.
As a unit of the factor costs Rs. 12, a patient on average may require up to Rs. 24,000 for treating a small bleed. (See graphic)
6,500 haemophiliacs
The State has about 6,500 registered haemophiliacs. But there could be a lot more in the population that go undetected, said N. Vijaykumar, medical officer in-charge of Regional Blood Transfusion Centre, Aluva.
In the open market, the blood factor is expensive. The World Federation of Haemophilia Societies provides the blood clotting factors only to registered societies.
There are 860 haemophilia patients registered with the Haemophilia Society, Angamaly, which is among the most active societies in mid-Kerala region.
‘Deadly disease’
Chronic shortage of the factor, high cost of treatment and poor financial capacity of patients make this genetically transmitted disorder a deadly disease.
Karunya Fund was expected to issue identity cards for all registered patients so that they can access the factor free of cost from medical colleges and district hospitals. However, neither have the identity cards come through nor has the government started making the blood factor available at the district hospitals. In Thiruvananthapuram, the blood clotting factor is available free of cost under the Karunya scheme.
A judicial intervention about two years ago had made the factor available at all medical colleges in the State.
Haemophilia centre
A full-fledged haemophilia centre proposed at the Regional Blood Transfusion Centre at a cost of Rs. 3.5 crore is also in limbo. While the State had given its nod for starting the centre, construction work is yet to begin. Such a centre would be the first in the State and third in the country after CMC Vellore and St. John’s Hospital, Bangalore.
The district panchayat will provide Rs. 40 lakh for setting up the centre, panchayat president Eldose Kunappilly said. “The project has been approved and tendering process is on”, he said.
The National Rural Health Mission and Kerala State Medical Services Corporation are also expected to chip in. According to Dr. Vijayakumar, equipment worth Rs. 8 lakh is ready but there is no building to house it.
