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Baby gets Rs 17.5 cr ‘gene therapy’ jab & a shot at life, first in Bengal govt hosp – ET HealthWorld

Kolkata: One year eight months old boy, who has spinal muscular atrophy ,SMA), happened recently gene therapy To manage his condition, which cost him Rs 17.5 crore NRS Medical College The hospital, the first among the hospitals run by the Government of Bengal.

SMA is a rare disorder that affects motor neurons, nerve cells that control voluntary muscles. It is incurable but can be controlled through therapy. A patient usually suffers from progressive weakness of voluntary muscles – the arms, legs and respiratory muscles are affected first. line of treatment for soumyajit In the NRS, Paul included one of the world’s most expensive drugs – Zolgensma, which cost just Rs 17.5 crore for just one shot.

This was the first such treatment in a government hospital, but Soumyajit was the second patient to receive the treatment in Bengal. The first was at Peerless Hospital last August.

Ranjeet Pal, a resident of a village in Howrah’s Shyampur and the boy’s father, who works as a goldsmith, said, “NRS doctors diagnosed my son with SMA when he was only six months old. Since then, they have been trying to give gene therapy.” Were trying to.” in Mumbai. “We followed Dr Jasodhara Chaudhary’s advice and got the medicine free of cost,” he said.

Kolkata: Spinal muscular atrophy (SMA) is a condition caused by an abnormality in a gene (SMN1 gene), and is diagnosed in childhood. Due to weak muscles, the child can neither crawl, sit nor lift his head. Health experts said that gene therapy is the best management or treatment option. But due to the high cost and lengthy documentation required for approval, only about 45 children in India have availed themselves of this therapy.

20-month-old Soumyajit received therapy with the medicine provided under the Global Managed Access Program at NRS Medical College on May 2. novartisBy a team led by Choudhary, Assistant Professor of Neurology. Cure SMA Foundation of IndiaA parent support group for SMA helped with paperwork and applications. “This procedure should be done before the age of two. Our medical team worked hard and the therapy could be done on time,” said Pit Baran Chakraborty, principal of NRS.

“A trial was conducted in Denmark,” Choudhary said while thanking Chakraborty, MSVP Indira De, neuromedicine head KC Ghosh and all the resident doctors of the department. Soumyajit’s doctors are hopeful that he will gradually start improving. “We are hopeful that the child will improve. We request the government to help other children,” said Moumita Ghosh, co-founder of Cure SMA Foundation of India, adding that one of her daughters is suffering from SMA.

  • Published on May 8, 2024 at 12:49 PM IST

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