Haemophilics cry for govt help
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16/04/2008
Twelve-year-old Harsh is nourishing a dream of playing cricket like Yuvraj Singh and Mahendra Singh Dhoni. Like his friends in school, Harsh wants to take active part in sports, but a little strain on his body or a minor injury while playing can be life threatening. Because, Harsh is among tens of thousands of children in the country who is born with haemophilia, a chronic bleeding disorder. "I see my friends playing in school and at home, but I cannot play. And if I do, then I will be playing with my life,' said Harsh Gajjar, who will be holding a bat for the first time at an event sponsored by the Surat chapter of Haemophilia Society of Gujarat (HSG) on the occasion of World Haemophilia Day on Thursday. Pointing fingers at his right elbow joint which had swollen due to internal bleeding, Harsh's mother Dimple Gajjar said,"I see my son dying a slow death everyday. He cannot sleep at night and always complains about body ache and other problems.' Every month, Harsh's parents have to spend around Rs 10,000 to Rs 15,000 on life saving injections and medicines. Though fresh plasma and cryoprecipitate are being offered free of cost to haemophilic patients across the country,Harsh's parents are sceptical. Their worry is that in the past,many patients have contracted HIV through this process. "We want the government to offer injections free-of-cost to all the haemophilic patients,' Dimple said. Though genetic,haemophilia continues to be a royal disease as far as the treatment is concerned. The medicines still have to be imported and there is no permanent cure or treatment available. "The injections given to haemophilic patients are very costly. One unit of injection costs around Rs 6 and an adult patient needs around 1,200 units at one time. However, the patient has to cough up around RS 7,000 to RS 8,000 for an injection,' said paediatrician Dr Prescient Karma who treats haemophilic children. According to Karia, there are more than 160 haemophilic patients, including children,registered with Surat chapter of HSG and around 1,000 registered haemophilia patients in Gujarat. Even if doctors start providing injections at half the price, it is difficult for affected persons and their family members to afford the treatment. The doctors said patients having less than 1 per cent of factor VIII and IX suffer from spontaneous bleeding. In case the factor is between one to five per cent, the bleeding does not stop after a minor accident or trauma. Patients having factor level above five come to know of the disease during severe trauma or surgery. About 50 to 60 per cent patients approach doctors after crossing the age of 16 when the problem gets worse. A factor VIII patient and vice-president of Surat Chapter of HSG Ganesh Jariwala said, "Unlike HIV/AIDS and cancer patients, we are not getting any sort of government relief. Our yearly expenditure on the treatment is between Rs 1.5 lakh and Rs 2 lakh. The government should at least make some arrangement where we can get injections freeof-cost or at very subsidized rates.' Harsh Gajjar, a young haemophilic patient, showing swelling on his hand to his mother in Surat