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Twenty-three-month-old Raihan was lucky enough to have been selected in a global project lottery that allowed him to receive gene therapy to treat his incurable neurodegenerative disease Spinal Muscular Atrophy (SMA).
Raihan received US$2.1million or nearly Tk22 crore treatments free of cost under the multinational pharmaceutical company Novartis CSR campaign.
Hailing from Manikganj, Raihan was undergoing treatment in National Institute of Neurosciences and Hospital (NINH) and got the therapy at 10am yesterday morning, Director of the hospital Professor Dr Quazi Deen Mohammad confirmed the news during a scientific seminar on the matter at the hospital.
Raihan was given the treatment by a 10-member physician team including ICU specialists, nurses and pharmacists led by Azimul Hoque, an associate professor of Paediatric Neurology Department of the institute, said Dr Azimul.
Rayhan’s father is a Saudi expatriate and his mother is a homemaker. The hospital director expressed his hope saying that the child would be able to lead a healthy life after the therapy.
Riad Mamun Prodhani, CPO Head and Country President, Novartis Bangladesh, said this is the first time any Bangladeshi children got the Onasemnogene Abeparvovec therapy.
As people from many countries are not able to meet the treatment cost, Novartis holds two lotteries for the children of underdeveloped and developing countries around the world every month for the free-of-cost treatment, he added.
As many as 30 Vietnamese children have received such treatments through the process since 2020. “We have just learned it and after meeting the criteria the child got the treatment for the first time in the country opening the door to all other such patients.”
Citing the process as very complex one, he said to be eligible for getting the treatment for free, children need to be less than 24 months.
“We have enlisted three children and one of them is going to be out of the list as he would be 24 months old next month,” he added.
According to the Switzerland-based pharmaceutical company’s country president some 250 children around the world get the treatment for free.
Junior consultant Jubaida Parvin of the Department of Pediatric Neurology of the institution said the single dose treatment requires much expertise.
“Due to weaker muscles their movements become limited and they suffer from frequent shortness of breath as well. Although their muscles responsible for breathing gradually weaken their brains remain active and they can feel how difficult it is to die,” she explained the symptoms.
According to the physicians there is no data in the country about how many children are affected by the disease. But she said they had suspected 30 patients with SMA. Among them 10 were confirmed as SMA patients after gene analysis.
