South Eastern Coalfields Limited (SECL) has handed over a cheque of Rs 16 crore to an employee whose 2-year-old daughter is suffering from a rare ailment called Spinal Muscular Atrophy (SMA) and requires an imported injection called Zolgensma of that amount, an official said on Saturday, November 20. The cheque was handed over on Friday to Satish Kumar Ravi, who works as an overman at SECL Dipka in Chhattisgarh, said SECL Dipka project mining general manager Shashank Shekhar Dewangan.
Ravi's daughter, Shristi Rani, is suffering from SMA, a genetic disorder in which a person can't control the movement of muscles due to loss of nerve cells in the spinal cord and brain stem, and Zolgensma injection, which costs Rs 16 crore and has to be imported from the US, is required as part of the treatment, Dewangan said.
The child was diagnosed with SMA in December last year, and is on portable ventilator support at her home in Dipka currently after undergoing treatment stints at AIIMS Delhi and the SECL-empanelled Apollo Hospital in Bilaspur.
Coal India Limited (CIL), of which SECL is a part, has set an exemplary example by showing that employees and their families are the real wealth of an establishment and saving their lives at any cost is the first and foremost job, Dewangan added.
TNM had earlier reported that Zolgensma isn’t marketed in India, and has to be imported from the US if prescribed by a medical practitioner. At $2.125 million, it is touted to be the world’s most expensive drug. The price, according to industry sources, is due to the low incidence of the disease, which means a smaller number of patients, as well as the significant costs in the research in gene therapy and the drug development process. For now, when children are prescribed Zolgensma, their guardians must write to Novartis and import the same from the US. The one-time drug can only be administered to children below the age of two to arrest the progression of the disease.