State apathy worries haemophiliacs
Sahil Muli, 4, did not tell his parents that he had gotten hurt while playing cricket. He was afraid that his parents would not let him play again.mumbai Updated: Apr 17, 2011 02:25 IST
Sahil Muli, 4, did not tell his parents that he had gotten hurt while playing cricket. He was afraid that his parents would not let him play again.
Muli, a haemophiliac, was bleeding internally for two days. "Finally, on the third day when he was unable to walk he told us about his injury. We had to rush him to KEM Hospital," said Manda Muli, 32, his mother and a teacher from Titwala.
Haemophilia is a genetic disorder that impairs the body's ability to clot blood.
The Muli family that has a monthly income of Rs 6,000 spent more than Rs 10,000 on Sahil's treatment at KEM Hospital.
The reason for this exorbitant cost is that the government does not manufacture AHF (Antihemophilic Factor) - a factor that enables blood clotting and the only way to stop haemophiliacs from bleeding.
AHF has to be imported at high rates and so far there seems to be no cheaper way out.
Tired of the state government's neglect towards the cause, The Hemophilia Society Mumbai (Chapter) is planning to file a public interest litigation in the Bombay high court against the municipal corporation and the state and central governments for not making essential drugs available in their hospitals.
"Once in a while after a hue and cry the municipal body or National AIDS Control Organisation would sanction a few lakhs to buy AHF. However, the money is exhausted quickly because of the high cost. For example, if a patient has internal bleeding in the brain, his treatment costs Rs 1 lakh," said Balshiram Gadhave, secretary of the society.
The society has made a database of haemophiliacs across the state and Mumbai has the highest number of patients (1198).
Experts too feel that the government should do more. "Last year, Rs 1 crore was sanctioned in the BMC budget for AHF. However, most of the money was used up for emergencies such as malaria and dengue. Rs 10 lakh was left for hemophilia patients. The government needs to work on manufacturing AHF," said Dr K Ghosh, director of National Institute of Immunohaematology at KEM Hospital.
The BMC's plan to build a plasma fractionation centre that would manufacture AHF at Govandi is in limbo. Dr Sanjay Oak, dean of KEM Hospital who is part of the project, said that the centre would take two more years.
Till no solution is found Sahil will not be able to play with his friends in the neighbourhood for fear of another expensive injury.