Nisarga, a five-year-old from Bengaluru, who suffers from a rare genetic disorder — Gaucher’s disease — has to travel to New Delhi to get a much-needed enzyme replacement therapy (ERT) even though it can be administered in Bengaluru.
On March 21, the Delhi High Court had issued an interim order asking the Employees’ State Insurance Corporation (ESIC) to provide treatment to Nisarga and two other children who suffer from Gaucher’s disease.
Though the High Court order was issued on March 21, the families were called to ESI Hospital, Rajajinagar, on April 25 after the High Court pulled up ESIC for failing to comply with the interim order. But on Monday, the parents were told that they would have to travel with their children to New Delhi.
“The court order we received on Friday night says they have to take treatment from AIIMS. So we have made arrangements to refer them to AIIMS and written to AIIMS to provide the treatment and send the bill to us. As per the order, we have to provide the patients at least two injections from AIIMS within 10 days and reimburse the treatment,” said Rachita Biswas, Medical Superintendent, ESI Hospital, Rajajinagar.
When asked how the ESI would proceed if an application were filed in court for treatment to be provided in Bengaluru, she replied,
“If there are any further instructions from the court or the ESIC office in Delhi, we will follow those instructions.”
Now, the parents of all three children are scrambling to figure out how to fund and plan this trip.
They were hoping that the treatment would be administered in Bengaluru. Nisarga’s father Chinappa is worried about how to take his sick daughter all the way to New Delhi.
“I don’t know what to do. I don’t know where the hospital in Delhi is or how much expenses I will be incurring,” he said.
Four-year-old Lalit Kumar from Bengaluru and Nisha (6) from Hosur are the other children named in the interim order of the High Court.
Nisha’s father, an electrician living in Hosur, has just returned after spending 15 days in New Delhi running from pillar to post with regard to the case. “If the treatment is provided in Bengaluru, it would be easier for us,” he said.
Gaucher’s disease is a rare genetic disorder in which fatty substances accumulate in cells and organs like the liver and spleen.
ERT is a prohibitively expensive treatment for which drug vials need to be imported from abroad. The available treatment is enzyme replacement therapy, which can cost as much as Rs. 30 lakh to Rs. 45 lakh per annum.
“The cost of the treatment increases as the child grows,” said Sanjeev G.N. from the Rajiv Gandhi Institute of Child Health, Bengaluru, who has been monitoring the health of these children. If treatment is provided to the three children, there is hope that similar aid could be extended to other patients suffering from the disease.
(With inputs from Mohammed Iqbal in New Delhi)
