Toddler Raihan gets Tk22cr worth gene therapy free of cost
Raihan received the medicine under a global project thanks to the efforts of his doctors at neuroscience hospital
Raihan, a 22-month-old toddler from Manikganj, has received Tk22 crore worth gene therapy for his rare neurodegenerative disease Spinal Muscular Atrophy (SMA) at the National Institute of Neurosciences and Hospital free of cost.
He was administered the therapy injection, the first in the country to treat the disease, at 10am on Tuesday, the hospital's Director Professor Dr Quazi Deen Mohammad told a media brief.
Raihan received the medicine free of cost under a global project thanks to the efforts of his doctors at the Neurosciences Hospital and a few strokes of luck.
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"This medicine is still not registered in Bangladesh. I request the government to take steps to register it soon. If necessary, the government should arrange to bring this medicine with subsidy," Dr Quazi Deen Mohammad added.
He also requested the government to build modern neuroscience hospitals at the district level to provide one-stop service. "Patients should not have to come to Dhaka for any test," said the doctor.
Secretary of the Health Services Division, Ministry of Health and Family Welfare (MOHFW) Dr Md Anwar Hossain Howlader said, "Most are not aware of this disease. We hope the price of the drug will come within reach at some point. Then we can do this treatment regularly in our country."
From Raihan's diagnosis to enrolling his name in the global project, his physician Dr Jobaida Parvin, junior consultant at the hospital's Paediatric Neurology Department, worked to bring the medicine to the country after the lottery.
Dr Jobaida said gene replacement therapy medicine for SMA is administered once through injection before the patient is 2 years old.
"Raihan is doing well and we will keep him under observation for 15 days," she said.
With the help of Novartis (Bangladesh) Limited, arrangements were made to provide this valuable medicine to Raihan.
Multinational pharmaceutical company Novartis provides their gene therapy medication Onasemnogene Abeparvovec to two children from around the world every month for free as part of their CSR campaign.
Novartis (Bangladesh) Limited's Head of Value and Access and Public Affairs SK Abdul Goni said the company invented the therapy medicine in 2019.
"So far, 30 patients have received the therapy for free. As of January the gene therapy medicine has been administered to 230 patients across the world," he said.
Health Services Division Additional Secretary Md Saidur Rahman was present at the event among others.
