Karnataka Chief Minister Siddaramaiah has sought Prime Minister Narendra Modi’s help in saving a 15-month-old boy, who is battling a rare disease and the potential treatment is the world’s most costliest drug Zolgensma.
The child is suffering from Spinal Muscular Atrophy (SMA) – a rare genetic disorder. According to doctors Zolgensma could be the potential treatment. However, according to Siddaramaiah, one dose of the miraculous drug costs Rs 17.5 crore excluding additional import duties.
Now Karnataka Chief Minister Siddaramaiah has written to PM Modi seeking financial assistance from the PMCARES fund and exemption of import duties on humanitarian ground.
Siddaramaiah said that exorbitant cost of the life saving drug is beyond the reach of Maurya’s family and requested him to consider releasing funds form the PMCARES and waive off the import duty.
“Prime Minister Narendra Modi, a 15-month-old boy named Maurya from Karnataka is suffering from a rare disease called ‘spinal muscular atrophy’. Zolgensma, an injection that can cure this child’s disease, has to be imported from abroad and costs Rs. 17.5 crores. I am requesting that the central government should consider this as a special case on humanitarian grounds and help save the life of the little village of Karunad by exempting it from import duty,” the Karnataka CM said in a post on Twitter, now renamed X.
The Karnataka CM further noted that life of a young child is hanging in the balance and need urgent collective action and support.
What is Spinal Muscular Atrophy (SMA)?
According to the US National Institute of Neurological Disorders and Stroke, Spinal muscular atrophy (SMA) refers to a group of hereditary diseases that can damage and kill specialized nerve cells in the brain and spinal cord (motor neurons). Motor neurons control movement in the arms, legs, face, chest, throat, and tongue, as well as skeletal muscle activity, such as speaking, walking, swallowing, and breathing.
The most common form of SMA is caused by a mutated or missing gene known as the survival motor neuron gene 1 (SMN1), which is typically responsible for the production of a protein essential to motor neurons.