Thiruvananthapuram: Kerala Chief Minister Pinarayi Vijayan on Friday urged the Centre to waive GST and customs duty on a life-saving drug to be imported from the US for the treatment of a child suffering from Spinal Muscular Atrophy (SMA).
In a letter to Prime Minister Narendra Modi, he detailed the plight of 18-month-old Muhammed, a native of Kannur district, who is undergoing treatment for the disease.
Noting that the medicine for SMA is 'prohibitively expensive' and 'unaffordable' for the child's family, Vijayan said it costs a whopping Rs 18 crore and is proposed to be imported from the US.
As many as 112 patients, mostly children, in Kerala are battling SMA.
The CM, in the letter, also pointed out that the central government had recently waived tax in a similar case of a five month old child, who is suffering from SMA in Mumbai.
"I request you to give directions to the Union Finance Ministry to take steps not to levy Customs duty and integrated Goods and Services Tax (GST) in this case involving the import of the life saving drug zolgensma," he said.
The Chief Minister's plea to the Centre came days after funds for purchasing the drug had been raised in Kerala through online crowdfunding for Muhammed. Son of P K Rafeeq and Mariyumma, the child requires a dose of Zolgensma, which is considered as one of the most expensive drug in the world.
The medicine would have to be procured from abroad and the treatment committee had petitioned the state government to initiate the process for procurement.
Medical experts suggest that the child will have to be administered the dose of the medicine before he reaches the age of two, family sources said
The treatment committee had on Monday informed the public that over Rs 18 crore reached the bank accounts opened for the donations and asked the people not to deposit any more.
The campaign was taken over by social media resulting in raising the amount within seven days from across the world. Incidentally, 15-year-old Afra, the elder sister of Mohammed, was also affected with the same disease.
Most of the children affected by the disease have registered on Cure SMA, a collective of parents working with those suffering from the disease. There are other children who are yet to reach out to this group. The demand is that the government should intervene and formulate a special scheme for them by combining the CSR funds of companies and donations.
Over 20 children, who had registered with the collective, have died. Elven children died in 2019 alone.
Help arrives for eight children
By 2020, eight lives could be saved as medicines were procured as a result of the constant talks between Cure SMA, the doctors who help them and the foreign pharmaceutical companies. These eight children, who are below two years of age, were given the medicine for free of cost as part of the company’s humanitarian projects. Thirty-four older children also got free treatment through the charity projects of other companies.
Gene therapy
This rare genetic disorder causes the muscles to weaken and affects body movement, leaving the children bedridden or dependent on wheelchairs. One in 10,000 babies born in India suffer from SMA. If they do not undergo the gene therapy Zolgensma, which costs Rs 18 crore, within the age of two years, these children either die or they suffer for the rest of their lives.
Parents plead for help
Seventy of the 112 children, who have registered, are awaiting the medicine and the money for it. A system would also have to be set up for the treatment of newborns. Therefore, action at the government-level is imperative, says Dr K Raseena, Cure SMA south India coordinator.
The Cure SMA Foundation is working all across India. The national collective is made up of parents who have witnessed the plight of about 600 children.
Website of Cure SMA India: www.curesmaindia.org
(with inputs from Santhosh John Thooval)
