An Assamese writer has sought support from the State government for treatment of spinal muscular atrophy (SMA), a rare degenerative neuromuscular disease that requires medicines – now available in India – worth at least ₹4 crore at ₹72 lakh per annum for up to nine years.
Sarmistha Pritam Baruah, based at Phulaguri in central Assam’s Nagaon district, has also advocated a health scheme for people with SMA.
Following her appeal, Assam Health Minister Keshab Mahanta visited the wheelchair-bound Ms. Baruah at her residence on August 22. He had assured her of action after discussion with Chief Minister Himanta Biswa Sarma.
“I am still awaiting communication from the government,” she told The Hindu on October 9.
A life member of Ellora Vigyan Mancha, an NGO that spreads scientific temper and promotes organ donation, Ms. Baruah has won several literary awards.
She was diagnosed with SMA at the age of 5. “My parents arranged physiotherapy sessions, as per the doctor’s advice for the first few years but had discontinued them after some time. They did not know much about SMA at that time and my condition deteriorated due to wrong treatment plans,” she said.
Ms. Baruah has been facing hardship after Alzheimer’s disease took a toll on her father and her mother started suffering from hypertension and backache.
“Even after bearing the pain and difficulties, I have been trying to establish myself as a valued human resource,” she added.