'Tom, Dick and Harry' cannot be permitted to raise funds, says HC (Eds: Combined related stories) Thiruvananthapuram/Kochi, July 9 (PTI) Days after a crowdfunding initiave helped generate a whopping Rs 18 crore in Kerala to buy a life-saving drug for a child suffering from a spinal issue,Chief Minister Pinarayi Vijayan on Friday urged the Centre to waive off the taxes involved, even as the Kerala High Court batted against such a fund mobilisation drive.
The court said every 'Tom, Dick and Harry' cannot be permitted to raise funds for the cause.
Vijayan wrote to Prime Minister Narendra Modi, seeking a waiver of tax and customs duty on the imported drug.
In a letter to Modi,he detailed the plight of 18 month-old Muhammed, a native of Kannur district, who is undergoing treatment for Spinal Muscular Atrophy (SMA) with the drug used in its cure costing Rs 18 crore, including taxes.
SMA is a rare 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.
A CMO source told PTI that the total cost of the drug was Rs 18 crore, inclusive of taxes.
Senior CPI(M) leader and Rajya Sabha MP, Elamaram Kareem, who also recently sent a letter to the Prime Minister, with the demand for duty waiver, said the tax amount for importing this medicine would be around Rs 6.5 crore, which includes 23 per cent import duty and 12 per cent GST.
The CM told Modi on Friday that the central government had recently given a waiver in a similar case of a five month old child in Mumbai, who is suffering from SMA.
'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 in this case involving the import of the life saving drug Zolgensma,' he said.
The medicine would have to be procured from abroad and the treatment committee had petitioned the state government to initiate the process for procurement.
The crowdfunding campaign for Muhammed was taken over by social media, resulting in raising the amount within seven days from across the world.
The treatment committee had on Monday said that over Rs 18 crore has reached the bank accounts opened for donations for this purpose and asked people not to deposit any more money.
Meanwhile, expressing concern over private people collecting funds via crowdfunding for treating children suffering from rare diseases, the Kerala High Court asked whether governments have any control over such transactions.
'I do not want every Tom, Dick and Harry to collect money. Is there any state control over this collection of funds via crowdfunding? We should know where the money is going,'Justice P B Suresh Kumar said.
The court was considering the plea of anautorickshaw driver, Arif, seeking free treatment for his six-month old son, who is also suffering from SMA as he could not afford the cost of Rs 18 crore to buy it.
In his petition, filed through advocate P Chandrasekhar, Arif has said that while he obtained permission for importing the required medicine, he cannot afford to buy even one dose due to its cost.
The HighCourt said it does not want to interdict the crowdfunding process, but wants the funds to go to the government, instead of into the account of some private individuals who may or may not give it to those who require the money.
The court also observed during the hearing that such transactions, if left unsupervised, could destabilize the economy.
It said it would be passing a detailed order in the matter. Arif has moved the court, claiming that he cannot ensure his son's treatment without the state support.
During the hearing, the Kerala government also expressed apprehensions regarding the source of the money being collected via crowdfunding. PTI LGK HMP SA APR ADMINISTRATOR ADMINISTRATOR APR ADMINISTRATOR ADMINISTRATOR