Congress MP Vivek Tankha during zero hour in the Rajya Sabha on Wednesday raised the issue of children suffering from spinal muscular atrophy.
The Congress MP raised the matter and demanded the government to take up theissue with the drug manufacturing company so that the drug becomes cheaper. He also demanded that the medicine should be provided to all those children who are suffering from this genetic disease.
The company Novartis manufactures the drug named Zolgensma for gene therapy to treat spinal muscular atrophy. Zolgensma is the most expensive medicine in the world and it costs 2.1 million US dollars, about Rs 15.24 crore in Indian currency. One injection is enough to correct the genetic defect.
“There is a tax component on it of around Rs 7 crore,” said Tankha.
Recently the Prime Minister waived the tax for a Mumbai based child after a request from former Chief Minister Maharashtra Devendra Fadnavis.
The parents of the child, Mumbai-based Priyanka and Mihir Kamat, managed to gather the money through crowdfunding for the couple’s six-month-old daughter Teera, who suffers from Type I Spinal muscular atrophy and requires a ventilator at home and a feeding tube.
Vivek Tankha said every year Novartis conducts a lottery and provides the injection free to 100 children. “From India a few children were fortunate to have got it free of cost in this way, around 2,000 children are suffering from this disease,” said Tankha.
The disease is a genetic disorder in which one defective gene causes muscles weakness and degenerates its normal functions. This rare disorder is found in one of every 10,000 babies with most unable to survive beyond a few years.