Aam Aadmi Party (AAP) leader and Rajya Sabha member Sanjay Singh on Saturday urged people to make donations to help Prashant and Neha Yadav, parents of a 10-month-old girl diagnosed with spinal muscular atrophy (SMA), a rare and debilitating neuromuscular disorder. The couple is racing against time to collect over ₹10 crore for the life-saving drug, Zolgensma, currently unavailable in India.
For Mr. Yadav, 29, who works in the Air Force, his daughter’s diagnosis with SMA Type 1 has left his family with the daunting task of raising the large amount. They have managed to collect ₹1.5 crore so far. “People have been telling me to let her go, because it’s impossible to save her… but what about feelings?” he said.
SMA Type 1 often results in death by the age of two without breathing support. The health of children with the condition worsens by the day, with difficulties in moving, sitting, breathing, eating, and swallowing.
Mr. Singh, who had earlier advocated for a government scheme and dialogue with U.S.-based manufacturer Novartis, emphasised the need for state intervention. “You will remember that in Parliament I had called for a scheme and for engagement in dialogue with Novartis. The injection costs ₹17 crore and after relaxations will cost around ₹10 crore. Investing in an injection worth ₹10 crore is impossible for a normal family,” the AAP leader said at a press conference. He also committed to donating ₹1 lakh to the couple.
The prescribed 35.8ml of Zolgensma for the child would need to be imported from the U.S., costing approximately $1.7 million. Dr. Sheffali Gulati, the child’s neurologist at AIIMS Delhi, attributed the drug’s high cost to patent restrictions.
Meanwhile, an affidavit in the Kerala High Court states that another SMA drug, Risdiplam, if freed from patent restrictions could be manufactured domestically for as little as ₹3,000 per year, compared to its current price of ₹72 lakh per patient annually.
Dr. Melissa Barber from Yale University, who provided the cost analysis for the affidavit, pointed out that patent-protected monopolies enable originators to charge exorbitant prices. “There are legal tools at India’s disposal, such as compulsory licensing, but that would require government action,” she said.
She said manufacturing Zolgensma is feasible but requires significantly more capital and involves higher marginal costs of production in comparison with Risdiplam. Lifting intellectual property restrictions could enable its local production, she added.
Published - November 03, 2024 01:20 am IST
