Landmark judgement brings hope for a rare disease patient in Delhi

Subsequent to a petition by the rare disease patient, Dharminder Singh, the Delhi High Court passed a groundbreaking judgment in which ESIC Hospital was asked to provide free treatment to him considering his dependency

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New Delhi: Dharmender Singh, a 28-year-old son of a factory worker in Delhi, suffers from MPS I, a Lysosomal Storage Disorder which belongs to a group of rare genetic diseases. The disease causes neurological problems, inflammation of joints and coarse facial features. Dharmender and his family have been fighting a legal battle against the Employees’ State Insurance Corporation (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.

Elaborating further, Senior Advocate Ashok Agarwal, a social jurist said, “Today, we have received a remarkable victory for Dharmender. He had filed a petition with the Delhi High Court requesting treatment under ESIC as his father, a factory worker, is insured along with his family members. As per the guidelines, anyone beyond the age of 21 cannot be treated under ESIC. Due to his disability, Dharmender cannot work and is completely dependent on his family. Considering these circumstances, in today’s verdict, Dharmender has been granted treatment under ESIC till his father is employed and insured.”

“This 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 Ministry of health and family welfare 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 added.