BENGALURU: With the intention to save the life of a toddler from Karnataka, who is suffering from a rare disease, Chief Minister Siddaramaiah wrote a letter to Prime Minister Narendra Modi, requesting an import tax waiver for a life-saving drug.
Fifteen-month-old Maurya is suffering from a severe condition called Spinal Muscular Atrophy (SMA), affecting the central nervous system. His family is financially struggling to access treatment as the required drug is exorbitantly expensive and not easily accessible. The doctors have highlighted that ‘Zologensma’, a single-dose medication costing Rs 17.5 crore, will potentially cure the condition.
In a letter written to Modi on October 27, Siddaramaiah requested him to consider allocating monetary support from the PM Cares fund for procuring the injection. He has also asked the PM to direct the Ministry of Finance to waive off import taxes on Zologensma.
“While the drug’s price is itself overwhelming, the added import taxes substantially increase the financial burden, making the acquisition of this life-saving medicine nearly unattainable for the family,” the CM wrote.
SMA is a neuromuscular genetic disorder affecting the nerve cells, which control voluntary muscular movement in the body. It affects the control movement in the arms, legs, face, chest, throat, and tongue, as well as skeletal muscle activity, such as speaking, walking, swallowing, and breathing.