Bengaluru: Six-year-old lysosomal storage disease (LSD) patient Jaishruthi is waiting to get treatment at the government-run Indira Gandhi Institute of Child Health (IGICH). But, from the past 10 weeks, the hospital has discontinued treating the patients with rare diseases as it has run out of medicine stock. The nee supply of medicine can be purchased after the government releases grant.

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Jaishruthi’s mother Pavitra said they had requested in the court to get an order for their daughter to be treated free of cost for LSD at the hospital. She also said they have been meeting many officials and ministers to get their daughter treated. While this is taking time, her daughter is running out of time”. Similarly, a rare disease patient, Revathi (12) was under medication for Gaucher, has not been given a dosage of the medication since January.

Revathi’s father Shivashankar, said he was also struggling to get the medicines. “It has been 45 days since her 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
In the meantime, executive director of Organisation for Rare Diseases in India (ORBI), Prasanna Kumar Shirol said as the IGICH does not have a director, procuring medicines is taking time as they have to call fresh tenders. 

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“Treatment for Rare disease LSD including, Gaucher, Pompe, and mucopolysaccharide (MPS), is very expensive. The expenses depend 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 allotted Rs 3 crore to get medications for the rare diseases.