Duty waiver sought for Rs 16 crore drug

Vadodara: Minister of state for ports, shipping and waterways Mansukh Mandaviya has sought a waiver of customs duty for a gene therapy drug to treat Spinal Muscular Atropy (SMA) in a child hailing from the Mahisagar district.
The drug costs Rs 16 crore and funds for the same are being crowdfunded in the state.
Three-month-old Dhairyarajsinh Rathod, son of Rajdipsinh and Jinal Rathod, was diagnosed with SMA Type 1.The disease is rare and a genetic ailment that in its advanced stage makes it difficult for the child to carry out basic activities including vital functions like swallowing and breathing. It can be life-threatening.
The drug Zolgensma used to treat the condition costs around Rs 16 crore and is said to be the costliest drug available.
The family is from a humble financial background and is not in a condition to bear the expense. The family has resorted to crowdfunding for the child. Several groups in the state also did collections for the baby and have handed these over to the family.
Mandaviya has written a letter to union finance minister Nirmala Sitharaman seeking a waiver of customs duty on the injection.
Mandaviya has stated that the injection attracts a custom duty of Rs5-6 crore. He has said that in a recent case in Maharashtra, the duty was waived off.
Apart from Dhairyaraj’s case, Mandaviya has also sought a general waiver in such cases.