A 23-Month-Old Girl With A Rare Medical Condition Needs A Drug Worth Rs 16 Cr For Her Treatment
A family in Namakkal, Tamil Nadu has been left shattered after doctors told them that their daughter is suffering from an extremely rare medical condition.
The girl Mithrra, was diagnosed with Spinal muscular atrophy (SMA), a genetic disorder characterized by weakness and wasting in muscles used for movement. It is caused by a loss of specialized nerve cells, called motor neurons that control muscle movement.
According to the doctors at the Kovai Medical Center and Hospital, the 23-months-old girl needs a drug named ZOLGENSMA for her treatment, which should start before she is two years old.
But ZOLGENSMA is highly expensive and costs around Rs 16 crore and has to be imported, for which additional import duty and taxes have to be paid.
The amount is too high for the middle-class family whose income is from a small fabric trading business.
The family has now launched an online crowdfunding campaign seeking help for the treatment of their daughter.
Zolgensma is said to the world's most expensive drug and there have only been a handful of cases in India where it was used.
Recently, three children suffering from SMA had received the drug under the compassionate access programme by the drug major Norvartis, a doctor at the Bengaluru Baptist Hospital said.
"Under the lucky draw, these three children will get 'Zolgensma', each of the doses costs Rs 16 crore," Dr Ann Agnes Mathew of Baptist Hospital said.
According to her, two patients are from Hyderabad and one is from Bengaluru.
In other recent cases, the families had raised the amount through crowdfunding.
