Doctors’ reluctance to write to pharma co could cost girl-out-of-coma dear

KOLKATA: A 20-year-old girl who woke up from a five-year coma in 2013, thanks to a wonder drug, is at risk of slipping back into a life-threatening condition owing to her doctors’ reluctance to communicate with a pharmaceutical company that manufactures the expensive medicine. Off the drug since February-end, she is showing symptoms of relapse, with persistent fever and stiffening and bending of her limbs.Sumana Pal suffers from Wilson’s disease, a genetic disorder that afflicts one in 1,00,000 children and is caused by accumulation of copper in the brain. She went into a coma in September 2007 and remained unresponsive until a city-based neuroscientist suggested a radical drug rarely prescribed in India. One month into Trientine dihydrochloride, Sumana woke up in 2013. Since then, her parents have been procuring the medicine from UK manufacturer Univar Plc. With Sumana requiring to take 100 capsules a month—each costing Rs 1,000—the middle-class family has to bend over backwards to mop up the finances. The pharma company has been generous, supplying 10 files of free medicines, valued at Rs 10 lakh. But now, the company wants a hospital to send the medicine request.

 

“Each file costs around Rs 85,000. With Customs duty and courier charges, it goes up to around Rs 1lakh. Univar’s decision to dispatch the medicines only after a hospital request has become a challenge. While doctors at Bangur Institute of Neuro Sciences are sympathetic, senior officials’ reluctance to write to the private pharma company is threatening to undo all the good,” said Sumana’s father Kanan Behari.The director of BINS is in a dilemma over a possible breach in the government’s health policy if they write to Univar. But with Sumana’s mother Kakali saying the company would send three months’ free medicines if it got the hospital request, officials said the request was under process.

 

Sumana suddenly broke out with fever and rashes in September 2007. Initially misdiagnosed as measles, an MRI at SSKM revealed she had Wilson’s disease. Usually, the liver gets affected but for Sumana, it was her brain. The standard medicine aggravated her condition and she slipped into a coma for five years. Finally, they met Bimal Kanti Roy at BINS, who told

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