Chennai: Chairman of the Minister of Tamil Nadu minister on Tuesday reached out to the Minister of Finance Union Nirmala Sitharaman with a request to free the drug that saved the lives imported for the treatment of spinal muscle atrophy (SMA) from customs and integrated GST.
In a letter, Stalin said high school was a rare disease, causing loss of nerve cells, which brought electrical signals from the brain to muscle.
For children affected, gene therapy must be given ideally before the child reaches the age of two years.
“Learned that genetic therapy for this genetic disorder is worth more than Rs 16 Crore per person.
Medicines for this genetic therapy are imported by hospitals for treatment.
In Tamil Nadu, 90-100 cases as they are reported every year,” Stalin said in The letter to the United Finance Minister.
Single dose care (zolgensma) or dosage dose care (spinraza) treatment of gene therapy or an expensive oral risdiplam syrup and parents of children affected by rare disorders feel difficult to meet the cost of care, he said.
Because these drugs are imported, customs and GST integrated collect them, increasingly increasing gene therapy costs.
Recently, the Government Government has ignored taxes for this drug imports for a child who suffers from high school.
“Therefore I ask you to give you instructions needed to the Ministry of Finance to take the necessary steps to free customs, integrated GST and other taxes on the import of life savings for the treatment of high school as a policy,” Stalin said.