Karnataka CM appeals to PM Modi for lifesaving aid for toddler battling rare disease

BENGALURU: Karnataka Chief Minister Siddaramaiah has reached out to Prime Minister Narendra Modi, seeking help for the medical treatment of a 15-month-old boy with a rare disease.

Karnataka CM has requested PM Modi’s assistance in securing financial support from the Centre for the child’s treatment and urged the consideration of waiving import taxes on the required Zolgensma injection.

In his letter to PM Modi, CM Siddaramaiah said that the baby, Maurya, from Karnataka, is battling a severe health condition called Spinal Muscular Atrophy (SMA).

“Our medical community has informed us of a potential cure in the form of an injection named Zolgensma. However, 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 lifesaving medication nearly unattainable for them,” CM Siddaramaiah said.

ಪ್ರಧಾನಿ @narendramodi ಅವರೇ,
ಕರ್ನಾಟಕದ 15 ತಿಂಗಳ ಮೌರ್ಯ ಎಂಬ ಪುಟ್ಟ ಕಂದ 'ಸ್ಪೈನಲ್ ಮಸ್ಕ್ಯುಲರ್ ಅಟ್ರೋಪಿ' ಎಂಬ ಅಪರೂಪದ ಕಾಯಿಲೆಯಿಂದ ಬಳಲುತ್ತಿದ್ದಾನೆ. ಈ ಮಗುವಿನ ಖಾಯಿಲೆಯನ್ನು ಗುಣಪಡಿಸಬಹುದಾದ ಝೋಲ್ಗೆನ್‌ಸ್ಮ ಎಂಬ ಚುಚ್ಚುಮದ್ದನ್ನು ವಿದೇಶದಿಂದ ಆಮದು ಮಾಡಿಕೊಳ್ಳಬೇಕಾಗಿದ್ದು, ಅದರ ಬೆಲೆ ರೂ. 17.5 ಕೋಟಿ ಇದೆ. ಕೇಂದ್ರ ಸರ್ಕಾರವು… pic.twitter.com/1mW5o1Dw99

— CM of Karnataka (@CMofKarnataka) November 1, 2023

Siddaramaiah, in his letter, requested intervention from PM Modi in two critical aspects: first, to direct the Ministry of Finance to waive off the import taxes on Zolgensma required for the child’s treatment; and second, to consider allocating monetary support from the PM CARES Fund to assist with the procurement of the injection.

He also emphasised that these compassionate steps will significantly alleviate the financial burden on Maurya’s family and reflect the nation’s commitment to championing the health and well-being of its youngest citizens.

“While I recognize the unique nature of this plea, I genuinely believe that the gravity of this 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,” Siddaramaiah further said in his letter.

“I thank you for your attention to this matter and eagerly await your positive response,” he added. (ANI)