CHENNAI: A 21-month-old girl from Thanjavur, who suffers from the rare Spinal Muscular Atrophy (SMA), requires a drug that costs Rs 16 crore. The drug named Zolgensma is a one-time gene replacement therapy and is known to be the world’s costliest drug.
The drug needs to be administered before she turns two years old, which is in November, according to doctors.
The toddler, Bharathi, was diagnosed at the Christian Medical College in Vellore for SMA. Later, the parents got a prescription for six vials of the medicine from the Bengaluru Baptist Hospital.
As the parents hail from an ordinary middle-class family, they have gone for crowdfunding and have so far raised close to Rs 40 lakh out of the Rs 16 crore required, excluding tax.
Jagadeesh, the father of the girl, says in 13 months, the girl still was not able to walk and then they took her to a local hospital in Thanjavur. “The hospital did not diagnose the condition properly and just told us to spend more time with the girl as both of us were working professionals. However, in her 16th month, her condition remained the same and we took her to the Vellore Christian Medical College where she was diagnosed with type-2 of SMA,” he told The New Indian Express.
From Vellore, they then visited the Baptist Hospital in Bengaluru, where a two-year-old girl named Mithra was previously given this drug. The hospital in its report has written that the medicine needs to be imported to save the life of the child.
In the past, various political parties have written to the Union government to subsidise the drugs and waive the tax.
People willing to donate can do so through this link: https://milaap.org/fundraisers/support-bharathi-j-e