14-Month-0ld Gets Life-Saving Drug Worth Rs 16 Crore Through A Lottery From The Manufacturer
Basil's 14-month-old daughter is suffering from spinal muscular atrophy (SMA) - a genetic disease. She got a new lease of life after she received the drug, Zolgensma at Bangalore Baptist Hospital.
Every parents wants to give the best life to their child and ensure that they have a healthy body. However, sometimes, things are not in their control and children suffer due to birth defects that are nobody's fault.
So, when someone who thought they would lose their child due to the inability to afford treatment for a health-related problem, it was a miracle when things took a turn for the better.
Mohammed Basil, an auditor from Dubai told Times of India that it would have taken him his whole life to earn Rs 16 crore - the cost of the life-saving drug needed for his daughter. He said, ¡°We were extremely lucky to get the drug through a lottery from the manufacturer. Even if I had earned Rs 16 crore, I don¡¯t know if my daughter would have lived till then,¡± said Basil, who is from Bhatkal.
TOI
Basil's 14-month-old baby girl is suffering from spinal muscular atrophy (SMA) - a genetic disease. She got a new lease of life after she received the drug, Zolgensma at Bangalore Baptist Hospital.
SMA is caused by loss of nerve cells which carry electrical signals from the brain to the muscles.
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His daughter, Fathima was the lucky winner of a lottery through a compassionate access programme by Novartis - the drug manufacturer. Her father also said that she is showing gradual improvement and has been able to move her legs since she was given the 40 ml dose of the drug through IV fluids.
Aside from the obvious fact that Basil wanted Fathima to have the best of health and a long life, what makes this even more crucial is the fact that he lost his first child, a boy, of the same disease.
PTI
¡°I took her for a test when she was three months old. Our fears came true as she was also suffering from SMA-type 1. By six months, she started showing the same symptoms that my son had experienced. Her neck balance was lost and she could not lift her hands,¡± said Basil.
He then continued to research on the disease and found Dr Ann Agnes Mathew from Bangalore Baptist Hospital.
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¡°I was in Dubai and urged my family to take Fathima to Bengaluru from Bhatkal. The doctors informed us about Zolgensma and the drug manufacturer¡¯s lottery scheme. My daughter¡¯s blood sample was sent to a lab in the Netherlands for a test before participation in the scheme,¡± said Basil.
When he was informed that Fathima had won the lottery, he was on cloud nine.
¡°It was nothing short of a miracle. She is very lucky to get the drug when several other patients with SMA are waiting for the same,¡± he said.
After arriving at Customs at Kempegowda International Airport, Fathima got the drug only three days later.
¡°Customs officials did not release the drug though we had obtained exemption from the health department, as there was some error in the approvals given by the government. It required the intervention of Dr Mathew, consultant and head, neuro muscular services, Bangalore Baptist Hospital, who met the customs authorities to tell them about the drug¡¯s importance,¡± said Basil.
The Brazilian Report (Zolgensma)
He was then asked to pay roughly Rs 1.5 crore as integrated GST to seek exemption from which he had to obtain another letter from the district surgeon.
¡°There is a need to create awareness among customs officials about the importance of such essential life-saving medicines,¡± he said.
He added, ¡°I request the Indian government to approve the drug in India and provide it to needy children at a subsidised price."
