On Sunday at Ramavarmapuram in Thrissur, 19 families gathered together to let the world know that their children suffer from a disease to which an effective medicine was recently approved and made available….but only in the U.S.
Spinal Muscular Atrophy (SMA) is a hereditary disease that weakens an individual’s physical strength by affecting the motor nerve cells in the spinal cord, thereby hampering the ability to walk, eat or even breathe.
“As per data available, there are more than a hundred SMA patients in Kerala. We have been waiting years for a medicine to cure the disease. Last week, a medicine named SPINRAZA was approved by USA’s Food and Medicine Safety Department for the same,” says Dr Sethunath -one of the organizers and also an affected parent- while speaking to The News Minute.
His five-year old son was identified with SMA when he was just one and a half years old. Sethunath says that SPINRAZA treatment would cost an exorbitant Rs five crore per year, a sum not affordable to an average Indian family.
“This medicine is not even available in the Indian market. We request the government to make the medicine available in India at subsidized rates,” he says.
28-year old Mahesh is the eldest patient in the group, and a rare exception. He fought against all odds to achieve his dream of becoming an architect. He was identified with the disease when he turned 18.
Though SMA is basically a genetic disease, it usually becomes evident at the time a child is supposed to learn to walk. The illness can however afflict an individual at any point of his life, and not just young kids alone. It is caused by the absence of a gene that enhances the movement of the nerves in muscles.
It was Dr Sethunath who took the initiative to form the Kerala SMA Family after his son was identified with the disease.
“Such people are not able to walk. They need help to do even basic stuff. They find it difficult to eat or even breathe. Poor patients find it very difficult to survive,” remarks Solomon, another affected parent.
The group has also sought the Centre’s help to get those afflicted with the disease insured.