How the poor child got gene therapy worth 22 crores for free
Gene therapy for neuropathy: How a poor child in Bangladesh received a life-saving injection worth Tk 22 crore for free.
The injection required to treat the rare neurological disease ‘spinal muscular atrophy’ costs around 22 crores in Bangladeshi currency. Especially in Bangladesh, this treatment is beyond the reach of common people in most countries of the world.
But this injection has been applied for the treatment of a child of a poor family in Bangladesh for free. The child is now under the observation of doctors at the National Institute of Neurosciences and Hospital in Dhaka.
Raihan is the child of Rafiqul Islam and Reena Akhter, a resident of Navagram in Manikganj Sadar near Dhaka. Rafiqul Islam lives in Saudi Arabia. Child Raihan was born after 13 years of marriage of this couple.
The child was suffering from the neurological disease of spinal muscular atrophy since birth. A child with this disease has progressive muscle weakness and cannot sit or stand up.
When the Rafiqul-Reena couple had almost given up hope of treating this rare disease in their child, fortunately, they got an opportunity to treat this extremely rare and expensive gene for free.
Multinational pharmaceutical company Novartis provided an injection ‘Zolgensma’ used in the treatment of ‘Spinal Muscular Atrophy‘ free of cost to Neuroscience Hospital in Dhaka. This injection has been applied to Raihan’s body.
On Tuesday at 10 am, baby Raihan was injected with saline for about an hour.
Mother Reena Akhter said she had given up hope when she found out her child would need so much money for treatment.
He said – We can’t raise one lakh rupees. And after all these years of marriage, I had a child, and I couldn’t bear to see that child dying in front of my eyes.
Bangladesh Country Director of Novartis Dr. Riyad Mamun said this injection is marketed in America. Only developed world countries buy this drug.
He said – The United States has chosen a lottery system to send a limited number of these drugs to poor countries for free.
The National Institute of Neurosciences, a state-of-the-art specialized medical institution in Bangladesh, and the pediatric neurology department of the hospital participated in this lottery.
The blood of some affected children and the report along with the necessary medical documents were sent to the United States. The lucky Raihan was selected in the lottery – he said.
What is known about this rare disease?
Doctors said that spinal muscular atrophy is a rare and complex congenital neurological disease.
Director of the National Institute of Neurosciences and Hospital of Bangladesh Professor Dr. Kazi Deen Mohammad said It is caused by a genetic defect.
The muscles of children affected by this disease continue to weaken and so, they cannot sit or stand. But their intelligence is fine. Later, the affected children die due to complications of the respiratory system.
Doctors say one in every 10 to 12 thousand children is affected by this rare disease.
Affected children die within two years. Most children survive only with that injection.
Why does the injection cost so much?
The Zalgensma injection is a type of gene therapy. Spinal muscular atrophy is mainly caused by genetic defects. When Xalgensma is injected into an affected child, the defective genes are replaced with properly functioning genes.
It has to be applied to one’s body only once and a single dose costs about 2.2 million US dollars or about 22 crores in Bangladeshi currency. In explaining why it costs so much, Novartis says that developing such treatments is very expensive.
Bangladesh Country Director of Novartis Dr. Riyad Mamun said the price is determined at the time of sale in the market by the cost incurred in the research process. The cost of making this medicine is high.
However, there is a lot of debate about whether such a sky-high injection price is reasonable. For example, several charities in the United States initially funded the research that led to the invention of the Jalgensma injection. And charities have collected this money from common people.
So the question of many is, why should Novartis make so much profit from the injection?