Funds given, but treatment of LSD kids yet to start

In such cases, a mode of treatment called Enzyme Replacement Therapy is employed to replace the enzyme which is deficient in the child. On August 21, the government informed the Karnataka High Court that it had released Rs 1 crore to IGICH. A month later, the institute received an additional Rs 3 crore from the state.

The hospital is yet to track these children. Of the 26 only a few have been traced so far. The hospital had informed parents that for procuring medicines, an e-tendering process is mandatory, but in this case, there is only one manufacturer, hence there is no point in calling a tender.

Dr Sanjeeva G N, Assistant Professor, Pediatrics, IGICH, said, “We received the additional Rs 3 crore about a week ago. We should start the treatment within a week, as there is only one manufacturer for these type of medicines — Genzyme. With the additional money we can treat the children till March.”

Prasanna Kumar Shirol, whose child is one of the 26 children to be treated said, “We were told that a technical committee consisting of an international expert, a national expert and an insider from IGICH will be formed to recommend to the government that with only one vendor, e-tendering process won’t work. The government is treating LSD children at such a large scale for the first time, hence it is a first for all stakeholders.”

Just a day before the state government released Rs 1 crore to IGICH, two-year-old Chetan from Davanagere had died from Gaucher.

“This is a progressive disorder. As time passes, treatment cost can be calculated only by the weight of the child. Hence, we are following up with IGICH every day for any progress on the treatment front,” Shirol said. For instance, for a child weighing 10 kg, the annual cost of treatment comes up to about Rs 43 lakh.