Three girls suffering from the rare disease, Spinal Muscular Atrophy, were administered the expensive gene therapy, Zolgensma, for free at Bangalore Baptist Hospital on Thursday. Each vial of the one-time injection costs Rs 16 crore and is capable of changing the genetic code in the body.
In all, the initiative amounts to Rs 48 crore for the three children, and is being given for free by the manufacturing company, through a lottery system (CSR). Three other girls with the same disease are being administered Spinraza, a drug costing Rs 70 lakh each (Rs 2.10 crore for three kids) in the same hospital. This is also being given for free by the Compassionate Access Programme of the NGO Direct Relief. The total cost is Rs 50.1 crore.
The cost for treatment for rare diseases is high as it takes 8-10 years to develop a drug, explained Prasanna Shirol, founder of Bengaluru-based Organization for Rare Diseases India