Siddaramaiah writes to PM requesting waiver of import taxes on injection to treat baby battling rare disease

PTI, Nov 2, 2023, 8:14 AM IST

Karnataka Chief Minister Siddaramaiah has urged Prime Minister Narendra Modi to waive import taxes on injection named ‘Zolgensma’, and provide financial assistance to a 15-month-old boy, who has been diagnosed with a rare genetic disease.

The Chief Minister has written to Modi in this regard, pointing at the financial challenge faced by the family in procuring the expensive Rs 17.5 crore single-dose injection, required for their child’s treatment. ”I am reaching out with a pressing matter concerning a young child from our state. A 15-month-old boy named Maurya, from Karnataka is battling a severe condition. Spinal Muscular Atrophy (SMA). Our medical community has informed us of a potential cure in the form of an injection named Zolgensma,” Siddaramaiah said in a letter.

Noting that the exorbitant cost of this single-dose medication stands at approximately Rs.17.5 crore presenting a formidable challenge for the family to access this crucial treatment, he said, ”while the drug’s price itself is overwhelming, the added import taxes substantially increase the financial burden, making the acquisition of this life saving medication nearly unattainable for them.”

The letter dated October 27, was posted by the Chief Minister’s Office on ‘X’ on Wednesday. Requesting Modi to direct the Ministry of Finance to waive the import taxes on Zolgensma required for the child’s treatment, Siddaramaiah also asked him to consider allocating monetary support from the PM CARES Fund to assist with the procurement of the injection. ”Such compassionate steps will significantly alleviate the financial burden on the child’s family, reflecting our nation’s commitment to championing the health and well-being of its youngest citizens,” he said. ”While I recognise the unique nature of this plea. I genuinely believe that the gravity of the situation and the life of a young child hanging in the balance warrant 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,” he added.