S Mandal, The News National :
Hridika Das – 8 month-old baby girl from Sonarpur town in West Bengal needs the ‘world’s most expensive drug’ worth Rs 16 crore to survive. Hridika was diagnosed with a rare Spinal Muscular Atrophy (SMA) and the injection is required as part of gene therapy treatment.
SMA type 1 is a rare disease that affects 1 in 10,000 babies worldwide. This deadly disease, if not treated immediately, can prove to be life threatening.
Inspired by few lucky families, Baby Hridika’s parents Haimanti Das & Bapan have begun a painstaking campaign to crowdfund Rs 16 crore for a gene therapy treatment to treat their 8 month old daughter.
The Novartis manufactured Zolgensma gene therapy to treat spinal muscular atrophy (SMA) is the most expensive medicine globally; it costs 2.1 million US dollars, about Rs 15.24 crore in Indian currency. One injection is enough to correct the genetic defect.
It replaces the faulty or missing SMN1 gene, effectively halting the disease’s progression if administered early enough in life.
Time is of the essence, as delays could lead to irreversible complications and decreased efficacy of the treatment.
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Treatment options for Spinal Muscular Atrophy (SMA), a rare genetic disease, are virtually nonexistent in India, primarily due to the excessive costs. Zolgensma, the drug needed for the gene therapy to treat this condition, is priced at an astounding 16 crore rupees.
“This is the most appropriate medicine and this life-saving medicine should be administered as soon as possible before the child completes two years of age,” said Sanjukta Roy, clinical director, department of paediatrics at the Peerless Hospitex Hospital and Research Centre.
The family has raised Rs 33 lakh so far. but miles to go… Baby Hridika’s mother Haimanti Das urged to West Bengal Chief Minister Mamata Banerjee to help them save baby Hridika.
However, the staggering cost poses an insurmountable challenge for her financially struggling mother Haimanti Das.
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