Sat Nov 02 19:50:07 UTC 2024: ## AAP Leader Urges Donations for 10-Month-Old with SMA, Calls for Government Intervention

**New Delhi, November 3, 2024:** Aam Aadmi Party (AAP) leader and Rajya Sabha member Sanjay Singh has appealed for public donations to help a 10-month-old girl diagnosed with spinal muscular atrophy (SMA), a rare and debilitating neuromuscular disorder. The child’s parents, Prashant and Neha Yadav, are facing an uphill battle to raise over ₹10 crore for the life-saving drug, Zolgensma, which is currently unavailable in India.

Mr. Yadav, an Air Force employee, said the family has collected ₹1.5 crore so far but needs to raise significantly more. He expressed frustration at the lack of options for his daughter, saying, “People have been telling me to let her go… but what about feelings?”

SMA Type 1, the most severe form, often leads to death by the age of two without breathing support. Children with the condition experience worsening mobility, difficulty sitting, breathing, eating, and swallowing.

Mr. Singh, who previously advocated for a government scheme and dialogue with the drug’s manufacturer, Novartis, highlighted the need for state intervention. He reiterated his call for a government scheme and dialogue with Novartis, emphasizing the impossibility for a normal family to afford the ₹10 crore injection. Mr. Singh pledged ₹1 lakh from his own pocket towards the family’s cause.

The 35.8ml of Zolgensma required for the child must be imported from the U.S., costing approximately $1.7 million. Dr. Sheffali Gulati, the child’s neurologist at AIIMS Delhi, attributed the high cost to patent restrictions.

An affidavit filed in the Kerala High Court revealed that another SMA drug, Risdiplam, could be manufactured domestically for ₹3,000 per year if freed from patent restrictions, compared to its current price of ₹72 lakh per year. Dr. Melissa Barber from Yale University, who provided the cost analysis for the affidavit, pointed out the exorbitant prices charged by patent-protected monopolies. She emphasized the need for government action, including compulsory licensing, to address this issue.

Dr. Barber noted that while manufacturing Zolgensma is feasible, it requires more capital and higher production costs compared to Risdiplam. Lifting intellectual property restrictions could facilitate local production of both drugs, she added.

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