Indira Gandhi Institute of Child Health (IGICH) plans to provide treatment for rare diseases like hemophilia, thalassemia, immuno-deficiency and few other diseases for children at free of cost. The project is expected to kickstart in a week or two after the budget allocation is decided and finalised.
The IGICH is the only government-run referral centre for children in Karnataka. Director of the institute Dr R Premlatha said: "As we have been getting a lot of cases of rare diseases like hemophilia, thalassemia and immuno-deficiency, we sent a proposal to the government. Even though the charges are minimal, many of them do not continue the treatment and leave it midway owing to financial problems. Once the budget is allocated, which is likely to happen in about two weeks, we will begin the process."
According to Hemophilia Federation (India), Karnataka has about 6,000 hemophilia patients. Treatment for hemophilia is expensive as it has to be treated by infusing the relevant factors, which are very costly and each episode of bleed would cost about Rs5,500 per infusion. If there is bleeding in the brain or if the patient has to undergo surgery, they require about 25,000-30,000 units of anti-hemophilic factor. Very few canafford to meet such a heavy cost of treatment.
Similar is the situation with patients suffering from thalassemia. Bangalore alone has over 1,000 children with thalassemia who are being treated at various hospitals and thalassemia care centres. At the IGICH, they have about 200 thalassemia children undergoing treatment. Since most of these patients come from families with poor socio-economic background, they do not turn up to the hospitals and day care units where they have registered, as the parents have to give up their day's earning and spend on the transportation charges.
Meanwhile, according to a senior nurse working in the thalassemia ward at Vani Vilas Hospital, 390 children have registered for thalassemia treatment at the hospital, but only 200 of them receive it regularly.
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