High Court relief for rare disease patient in Delhi

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Senior advocate, Ashok Agarwal

NEW DELHI : The Delhi High Court has come to the rescue of a 28-year-old son of a factory worker from Delhi suffering from one of the rarest ailments, MPS I, a Lysosomal Storage Disorder.

The high court has directed that the Employees’ State Insurance Corporation (ESIC) will foot the expenses involved in the medication and domiciliary care of the patient Dharmender Singh who suffers from the Lysosomal Storage Disorder, which causes neurological problems, inflammation of joints and coarse facial features.

The parents of the patient have fought a long drawn legal battle against the ESIC, a central government organization which provides health insurance cover to factory workers and their dependents.

Dharmender’s struggle for continuous treatment support from ESIC had been on-going for the last many years. Hence, he took the case to the Delhi High Court subsequent to which the Court passed a groundbreaking judgment in which ESIC has agreed to provide treatment to Dharmender considering his dependency.

It was ESIC's contention that a person who is a major is not a dependent and thus not entitled to benefits. The court held that despite being 28 years of age, Dharmender was a dependent on his parents and entitled to ESI benefits.

Ashok Agarwal, a social jurist, said, “Today, we have received a remarkable victory for Dharmender. The verdict shows that Ministry of Labor has been committed towards lending support to rare disease patients. Not just Dharmender but other 15-20 rare disease patients who have approached ESIC to seek treatment will benefit from this judgment.”

“The Union Health Ministry should take notice of this commendable judgment and expedite the notification of the National Policy and the on-ground implementation guidelines for Treatment of Rare Diseases”, he demanded.


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