Bombay HC aids man suffering from rare genetic disorder

Nagpur: The Nagpur Bench of Bombay High Court has rushed to aid a 26-year old man suffering from a rare genetic disorder by directing the government and BSNL to pay for his treatment requiring over Rs 2 crore per annum, his lawyer said on Saturday.

"In their order, a division bench of Justice Bhushan Dharmadhikari and Justice Arun Upadhye on Friday directed the centre, state and the BSNL to pay for his treatment on an interim basis. The matter has been adjourned till August 31," lawyer Bhushan Mohta told IANS.

He said that at the next hearing, the three respondents will file their affidavits on the issue, while the petitioner-patient, Chaitanya Prakash Awathere, 26, will provide an estimate of the cost of treatment for his disease for the next six months.

The son of a mechanic working in BSNL in Yavatmal, Awathere is suffering from the rare Gaucher Disease Type 1 (GD1) for nearly seven years now. Like other variants of the disease, it develops when insufficient glucocerebrosidase is made by the body as it cannot process and break down the fat, and fat-filled Gaucher cells develop in the patient's spleen, liver and bone-marrow.

Mohta said that presently, the cost for treating this condition comes to nearly Rs 2 crore per year, which is beyond the means of his father who earns barely Rs 6 lakh per annum.

"We have sought the help from the centre and state government on the basis of a proposed policy framed by the government in October 2016 for treatment of such rare genetic diseases," he added.

The policy has now been circulated for consideration by various states before it is finalised. Presently, the maximum that centre-states medical schemes allow is a one-time grant for life-saving procedures, he said.

When he was nine, Awathere had undergone a splenectomy (removal of spleen) surgery, and a bilateral hip-joint replacement after he developed oseonerosis in both femur (thigh) bones. This led to multiple complications like anaemia, liver fibrosis causing it to enlarge, portal hypertension and esophageal varices and he vomited blood due to lack of treatment.

The BSNL's Maharashtra Telecom Circle extended help for the expensive treatment for three years till 2012, and then withdrew on grounds that only employees are eligible for such financial assistance and not their family members.

A distraught Awathere finally moved the Bombay HC's Nagpur Bench, through Mohta, praying for directions to the government and BSNL to fully provide for the cost of his costly treatment and also make suitable legislative provisions for the same.

Mohta informed Justice Dharmadhikari and Justice Upadhye that in India, there are no incentives for Indian manufacturers to develop local alternatives to "orphan drugs" - a synthetic pharmaceutical that remains commercially undeveloped - unlike other countries which have special laws and policies to deal with the rare disease.

Incidentally, in a precedent, the Delhi HC has in April 2014 ordered the city government to provide free treatment to a five-year old child suffering from Gaucher's disease to which he has already lost three siblings.

Though the Delhi government cited financial constraints, the court cited the Constitution's Article 21 and directed the All India Institute of Medical Sciences to provide the patient with enzyme replacement therapy free of cost as and when required. The treatment for the patient was estimated to cost around Rs 6-7 lakh per month.