Karnataka: Baby able to move legs after dose of Rs 16 crore drug, says dad | Bengaluru News – Times of India

BENGALURU: An auditor in Dubai, Mohammed Basil says it would have taken him an entire lifetime to earn Rs 16 crore, the cost of the life-saving drug needed for his daughter.
“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.
His 14-month-old daughter, who is suffering from spinal muscular atrophy (SMA), a genetic disease, got a new lease of life after receiving the drug, Zolgensma, at Bangalore Baptist Hospital on January 21. SMA is caused by loss of nerve cells, which carry electrical signals from the brain to the muscles. Fathima was the lucky winner of a lottery through a compassionate access programme by Novartis, the drug manufacturer.
Basil said Fathima is showing gradual improvement and has been able to move her legs since she was administered 40 ml of the drug through IV fluids.
Basil’s first child, a boy, died of the same disease. When Fathima was born, the family consciously observed her development. “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.
This was around mid-2020, when Basil was in Dubai and his family was living in Bhatkal. He had started doing research about treatment possibilities for his daughter and came across Dr Ann Agnes Mathew from Bangalore Baptist Hospital.
“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,” recalled Basil.
Two months ago, Basil got a call from the hospital and was told Fathima had won the lottery. “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.
Customs hurdles

Though the drug had arrived at Kempegowda International Airport on January 18, the girl got it 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.
He was asked to pay close to 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.
Basil said the drug was accessed through third-party approval. “I request the Indian government to approve the drug in India and provide it to needy children at a subsidised price,” he told TOI.
“The incidence of SMA is seen in one among 10,000 live births,” said Dr Madhuri Maganthi, HoD and paediatric geneticist, Bangalore Baptist Hospital. She added that couples who have come across children born with genetic abnormalities in their families must go for genetic counselling. “Prenatal diagnosis and genetic counselling helps,” she said.

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Sagar Biswas

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