Thiruvananthapuram: Parents of children suffering from spinal muscular atrophy (SMA), a hereditary disease that weakens an individual’s physical strength by affecting the motor nerve cells in the spinal cord, have urged the Centre to procure a drug from US which is said to highly effective in curing the disease.
The drug SPINRAZA approved by US Food and Medical Safety Department in December 2016, is not available in Indian market. They have also sought insurance coverage for persons affected by the disease.
Earlier this year SMA Family Group had conducted meetings in Delhi, Kolkata, Mumbai , Chennai, Bangalore and Thrissur to seek assistance from Centre for procuring the life saving drug. In Kerala there are more than 100 SMA patients.
“SPINRAZA treatment would cost an exorbitant Rs 5 crore annually which is not at all affordable for affected families. Our request is to the Centre to make these medicines available in the country at subsidised rates and using funds set aside in the health budget for treating rarest of the rare diseases,” said Dr Sethunath, the founder of the group.
Sethunath had formed the Kerala SMA Family group after his five year old son was detected with the disease when he was just one and half years old.
Doctors say SMA is a genetic disorder and it normally surfaces at the time when the child is about to start walking. However, a person can get afflicted at any age.
One of the major causes of the disease is the absence of a gene that enhances the movement of the nerves in muscles.
SMA is one of the biggest genetic causes for infant mortality. The disease is progressively debilitating, patients have frequent respiratory infection due to weak lungs that may be fatal in most cases. All limbs become weak.
The patients are fully dependent. Most become wheel chair bound or bed ridden. Type 1 is the most severe form and the survival rate of affected children is very low.
According to SMA group till December 2016 there was no effective drug to treat the patients. However, the US drug has raised hopes of the families of affected children.
