Families denied insurance from ESIC for rare genetic disorders, seek refuge in court

Utransh Vyas, a wide-eyed 18-month-old boy, shows no signs of the genetic disease he was diagnosed with three months ago; Gaucher’s disease, a rare genetic disorder that often causes the stomach to protrude, liver and spleen to swell and sometimes severe bone pain. To keep these symptoms at bay the boy will need immediate treatment, which has to last his lifetime, that costs anywhere between 40 lakh to 2 crore. His father, Kapil Vyas, a lower middle class worker in textile factory in Banswara, Rajasthan cannot hope to afford such a course, and his claims for medical insurance have been denied by the Employee State Insurance Corporation, where he registered 15 months ago. 

He has come to Delhi in the hope that courts will provide him relief, as on May 31, the Delhi High Court through an interim order directed the ESIC to pay for treatment of six children suffering from such genetic disorders, collectively called Lysosomal Storage Disorders, till the final judgement in passed. 

Talking to dna at a meeting of families with affected children, the Lysosomal Storage Disorder Support Society (LSDSS), Vyas said that because his son was born three months before the date of insurance registration, according to the ESIC guidelines he was not eligible to be a beneficiary. “The doctor who diagnosed my son said even he wouldn’t be able to afford such a treatment,” said Vyas who came straight from Jaipur, where his son was turned away from the ESIC hospital, referred instead to another government facility where Vyas would have to bear the cost.  

This clause, 5.3, in the ESIC 2014 guidelines, along with clause 5.1 that caps the amount per beneficiary per year to Rs. 10 lakh has left many such families in the lurch. Dharmender Singh, a 24-year-old from Sultanpuri, New Delhi and his eight-year-old brother Vishal suffer from Mucopolysaccharidosis type I (MPS 1), that has caused Dharmender to slowly lose his vision, his fingers to shorten and contract, his body to stop growing and ache frequently and intensely. He was denied insurance as his father registered much after his birth, and Vishal was denied as the treatment cost far more that the Rs. 10 lakh cap.

These clauses are  now a point of contention in the Delhi High Court, where, according to senior advocate Ashok Agarwal, the judge looking at the cases told ESIC that these clauses need to be withdrawn. However, he added, thousands of families who couldn’t approach the court were still suffering. ESIC had enough money, said Agarwal, a recent audit revealed a surplus of Rs 4,000 crore.