‘Let Raihan not be the last child to get treatment for spinal muscular atrophy’

Raihan has been positively improving since receiving the gene therapy injection for Spinal Muscular Atrophy (SMA) and hopefully he will be able to walk one day, said the toddler's physician Dr Jobaida Parvin, junior consultant of paediatric neurology at the Neurosciences hospital.

She called on the government, donor organisations and the wealthy to come forward so that other children including Koushiki and Tasnuva, who are also suffering from SMA, can avail the highly costly treatment.

Raihan is the first Bangladeshi child to receive the gene therapy injection worth Tk22 crore for the rare neurodegenerative disease. The 22-month-old was selected in a global project lottery, under which Novartis provides its gene therapy medication Onasemnogene Abeparvovec to two children from around the world every month for free as part of their CSR campaign.

Dr Jobaida enrolled Raihan's name in the global project and played an active role in bringing the medicine to the country after the lottery.

"In India and Canada, there is an organisation named Cure SMA, which provides support to SMA-affected patients and families. It also funds and directs research leading the way to a cure for SMA. There is no such thing in our country – if we can build something like that, the children suffering from SMA will have the chance to get treated," Dr Jobaida told The Business Standard.

"In India, the children got medicine through lottery and also through fundraising initiatives. More than 40 children have received the gene therapy in India. They also availed two other drugs that are approved for the treatment of SMA," she said.

Dr Jobaida stressed that if the wealthy and the donors offer their help these children will survive and will become social assets from social burden.  

She also revealed that they have enrolled names of two other children from Kushtia and Cox's Bazar.

"Doctors in our hospital are planning to talk with the government about making the injection available for SMA patients. We will not get the lottery every time and the facility will soon discontinue for Bangladesh. That's why we will try to buy the medicine for some of these children with the help from the government, donors and the affluent," said Dr Jobaida.  

"We are in contact with Novartis and negotiating to reduce the price of the injection. They gave us an idea that if the government buys 5-7 injections a year, they might reduce the price," she added.

The Neurosciences hospital gets some 30-35 patients suspected with SMA every year while Shishu Hospital, Bangabandhu Sheikh Mujib Medical University, Dhaka Medical College Hospital also treat children with the condition.

"Children suffering from SMA cannot raise their necks. They cannot move its arms and legs. They also have frequent breathing problems. Parents should be aware of these symptoms and take their child to any good hospital," Dr Jobaida said.  

"The sooner an SMA patient gets the medication, the faster they can lead a normal life. If we could have given Raihan this injection when his age was 6 months, the possibility of Raihan being able to walk would have increased," added the doctor.