A 14-year-old girl Anushka Panda suffers from a rare neuro-muscular disorder called spinal muscular atrophy (SMA). The disorder affects the nervous system that controls muscle movements. A drug that could help cure the condition costs Rs 48 lakh per year and is only available in the United States.
Anushka's parents have now approached the Prime Minsiter's Office and met the health minister for help. Anushka was just a year-and-a-half when she was diagnosed with the disease, which is progressive and life threatening.
"I have Scoliosis so I wear a brace which is very uncomfortable. Life at home is little easier than the one I lead at school," said Anushka.
Fo all these year, there was no cure for this disorder but now Anushka's parents have a ray of hope after a US-based company developed a drug called Spinraza. But the drug is available only in the US and is priced at $ 75,000 per year, which amounts to Rs 48 lakh.
"She was diagnosed with Scoliosis of the spine which means the muscles do not have the strength to hold the spine erect. It has become a threat to her life and we are not able to take the call on her surgery. It is an 18-hour surgery and the child needs to have at least 50 per cent of lung funtion. I sincerely request the PM to intervene or may be the External Affairs minister can talk to US and make the drug available to our kids. I also request that the health care system in India is revamped so that the cost will not be a matter later," said Anushka's mother.
Dr Anshu Rohatgi, senior neurologist, Sri Ganga Ram Hospital, joins Rajdeep Sardesai to explain the disorder and whether the drug can be made accessible to Anshu and other patients suffering from the disorder. "It is a very rare condition where the neurons in the spinal cord degenerate and you have a progressive muscular weakness. The drug Spinraza has shown some promise. It was approved in the US in 2016. Unfortunately, this drug is very expensive. It costs approximately Rs 48 lakh in the first year, thereafter it costs Rs 24 laks in the next year," said Dr Rohatgi.
"Bringing down the cost might not be possible unless the company agrees to. India is very far away from researching in these critical areas because, unfortunately the clinical trials have disappeared since the last few years. None of the big companies come to India for trials because of the environment," he added.
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