Chief Minister Siddaramaiah has written to Prime Minister Narendra Modi seeking help for the treatment of a 15-month-old boy from Karnataka, who has been diagnosed with Spinal Muscular Atrophy (SMA) type 2, a rare genetic disease.
Posting the letter dated October 27 on X (formerly Twitter) on Wednesday, the Chief Minister has requested the Prime Minister to waive off the import taxes on Zolgensma, the expensive ₹17.5 crore single-dose injection, required for the child’s treatment. He has also urged the Prime Minister to consider allocating monetary support from the PM CARES Fund to assist with the procurement of the injection.
“The exorbitant cost of the medication presents a formidable challenge for the family to access this crucial treatment. While the drug’s price itself is overwhelming, the added import taxes substantially increase the financial burden. Understanding the dire need to support young Maurya, I earnestly request your benevolent intervention in waiving off the import duty on the medicine and provision of financial aid under PM CARES Fund,” the letter stated.
“Such compassionate steps will significantly alleviate the financial burden on Maurya’s family, reflecting our nation’s commitment to championing the health and well-being of its youngest citizens. I genuinely believe that the gravity of the situation and the life of a young child hanging in the balance warrants our collective action and support. I am confident that with your kind intervention, we can extend our collective support and offer a ray of hope to young Maurya and his family,” the Chief Minister said in the letter.
Caused by loss of nerve cells
Ann Agnes Mathew, Consultant Paediatric Neurologist and Neuromascular Specialist, at Baptist Hospital who is treating the boy, said SMA is a disease caused by loss of nerve cells, which carry electrical signals from the brain to the muscles. “The protein needed for this signaling is coded by a gene for which everyone has two copies — one from the mother and the other from the father. A child develops this disorder only if both the copies are faulty. Without treatment, this disease is ultimately fatal,” she said.
“The disease, as it progresses, makes it extremely difficult for the babies to carry out basic activities like sitting up, lifting their head or swallowing milk. This child is still well preserved and timely treatment can help him,” said the doctor.
500 children
The doctor, who has over 500 SMA children under her care currently, said as many as 29 children have been lucky to get free medicine after they were selected through a lottery under a compassionate access programme by Novartis, the Swiss drugmaker. This lottery is held once in two weeks for SMA children across the world as of now.
“The therapy was approved by U.S. regulators in May 2019 and has since then turned into a miracle drug for this rare disorder. We have applied for free gene therapy under the lottery system for over 120 children so far,” the doctor said.
The toddler’s parents — Mallikarjun Chanappagoudar and Madhuri — have taken to crowdfunding on ImpactGuru.com, a crowdfunding platform, to cover the cost of Zolgensma.
