Six-year-old Jaishruthi is waiting to get treatment for a lysosomal storage disease (LSD) at the government-run Indira Gandhi Institute of Child Health (IGICH).
However, the hospital has discontinued treating the patients with rare diseases for the past 10 weeks as it has run out of medicine stock. The fresh supply can be purchased only after the government releases grant after which the hospital floats tenders.
Pavitra, Jaishruthi’s mother, said they had approached the court to get an order for their daughter to be treated free of cost for LSD at the hospital.
“We have been meeting many officials and ministers to get our daughter treated. While this is taking time, my daughter is running out of time,” Pavitra said.
Similarly, Revathi (12), who was under medication for Gaucher, also a rare disease, has not been given a dosage of the medication since January.
Shivashankar, her father, said he was also struggling to get the medicines. “It has been 45 days since my daughter has received her dose of medicine for gaucher. Although she is attending her school, she is getting tired very quickly which is not a good sign,” said Shivashankar.
Meanwhile, Prasanna Kumar Shirol, executive director of Organisation for Rare Diseases in India (ORBI), said as the IGICH does not have a director, procuring medicines is taking time as they have to call fresh tenders.
“Treatment for LSD including, gaucher, pompe and mucopolysaccharide (MPS), is very expensive. The amount depends on the weight of the patients. So for 10 kg, the cost of the medicine would go up to Rs 40 lakh per month. The high court has directed the government to treat these patients and the government allocates funds for this purpose,” he added.
Dr Naveen Benakappa, the in-charge director and medical superintendent, IGICH, said the government granted Rs 3 crore to get medications for the rare diseases. “We have got the funds three days ago and will shortly procure the medicines directly without floating any tenders,” he added.