Bengaluru: Patients with rare diseases wait eagerly for their dosage of medicines from Indira Gandhi institute of Child Health (IGICH).
The hospital has stopped treating the patients with rare diseases for the past 10 weeks owing to exhausted stock of medicines. The hospital has to float a tender to procure the fresh supply of medicines after the government releases grant.
Prashant Kumar Shirol, executive director of Organisation for Rare Diseases in India (ORBI) told that the IGICH does not have a Director which is causing delay in procuring medicine as they have to call fresh tenders .
Medicines for rare diseases like LSD are very expensive. The amount depends on the weight of the patients. For a patient weighing 10 Kg the cost may be as high as Rs 40 lakhs per month.
Some patients have approached the High Court to allow them free treatment from IGICH. As per the HC direction and the government has allocated funds said Prasanna Kumar.
Dr Naveen Benakappa, in-charge director and medical superidentant of IGICH confirmed that the government has granted Rs.3 crore to get medicines for rare diseases and the hospital would be procuring medicines directly without any tender.
