Delhi HC directs ESIC to treat 11-year-old patient with rare disease

Sep 08, 2020

New Delhi [India], September 8 : The Delhi High Court on Tuesday directed Employees State Insurance Corporation (ESIC) to provide enzyme replacement therapy (ERT) treatment to an 11-year-old patient with the rare Lysosomal Storage Disorder.
A single-judge bench of Justice Naveen Chawla directed the patient Nargis to go to the ESIC hospital Basaidarapur on September 11 for examination and treatment and listed the matter for further hearing on November 19.
Advocate Ashok Agarwal, representing the patient, sought directions to the ESIC to release Rs 28 lakh to All India Institute of Medical Sciences (AIIMS) hospital for her three-month ERT treatment.
"Her elder brother suffering from the same disease died on August 23 2020 as ESIC did not release money to AIIMS", Agarwal submitted.
Nargis moved the court against the inaction and failure on the part of the respondents in providing free of cost treatment to her for Lysosomal Storage Disorder, a rare, life-threatening disorder, urgently requiring continuous ERT treatment, which is costly.
The petitioner said that the respondents violated the fundamental right of the petitioner guaranteed under Article 21 read with Articles 39(E), 41 and 43 of the Constitution. The advocate told the court that the petitioner's father is insured with ESIC since June 2014.
"The petitioner most humbly submits that the Government of India is under the constitutional duty to preserve the life of the petitioner but unfortunately they are not showing any interest or making any efforts to save the life of the petitioner. It is unfortunate that the respondents have utterly failed to provide the required medical facility to the petitioner and the life of the petitioner is in danger and the petitioner may die any time," the plea said.
The petitioner had urged the court to issue directions to the respondent ESIC to forthwith release the required amount to AIIMS for administering ERT treatment to the patient.