The ESI Corporation does not have the authority to create a separate class of treatment called SST through administrative circulars. The guidelines and circulars regarding SST were inconsistent with the ESI Act and regulations and discriminated against certain groups of people.

JUDGMENT :

1. In the present two writ petitions, the petitioners have challenged the validity and legality of Clauses 5.1 and 5.3 of the Guidelines of the ESI Corporation titled “ESIC Decisions on Medical Services-July, 2014”. The impugned clauses read as under:-

“5.1 Upper limit on the expenditure for procedures not covered under CGHS package rates would be Rs. 10 lacs per beneficiaries per year.

5.3 In respect of children of IP, congenital diseases requiring referral to SST and genetic disorders would be eligible for coverage up to the ceiling mentioned earlier only in case the child is born after the IP had become eligible for SST.”

2. The present writ petitions were initially tagged with a batch of matters filed by the employees who were insured under the Employees’ State Insurance Act, 1948 (for short “ESI Act”) but whose minor children had been denied Super Speciality Treatment on the grounds that the minors had been born prior to the employees having become eligible for Super Speciality Treatment and/or the expenditure to be incurred on their treatment was beyond the ceiling of Rupees Ten Lacs per year.

3. It is pertinent to mention that the present two petitioners are minor children who are suffering from genetic disorders, namely, Gaucher Type I (Master Harsha D.S.) and Hurler Syndrome Type I (Baby Devananda D.). Both Gaucher Type I and Hurler Syndrome Type I, which are rare diseases. The term ‘rare disease’ in many countries has been defined as a disease or condition which occurs so infrequently that there is no reasonable expectation that the cost of developing and making available a drug for such disease or condition will be recovered from sales of such a drug. Rare diseases have low prevalence and collectively affect approximately between six to eight per cent of the population. Globally around six thousand to eight thousand rare diseases exist and new ones are reported regularly. Around eighty per cent of rare diseases are of genetic origin, hence disproportionately impact children.

4. While issuing notice in the present batch of matters, this Court had directed ESI Corporation to commence Enzyme Replacement Therapy or any other appropriate treatment to the minor petitioners. It was further directed that in the event the ESI Corporation does not have the expertise to administer the said therapy, it would forward the case of the petitioners to a super speciality empanelled hospital and cost, if any, for such treatment would be borne by the ESI Corporation.

5. During the pendency of the present cases, the impugned Guidelines were amended from time to time by way of administrative orders issued by the ESI Corporation.

6. On 07th November, 2016, the impugned Clauses 5.1 and 5.3 were modified by the ESI Corporation. The revised Guidelines amended the conditions on which Super Speciality Treatment could be availed by the Insured Person and his family members. The relevant portion of the Circular dated 07th November, 2016 is reproduced herein-below:-

“In view of difficulties being faced by IPs for getting Super-Speciality Treatment services especially through referral system and for suggesting measures to improve medical services under ESI scheme, a Sub-Committee was constituted whose recommendations were placed in 169th meeting of ESI Corporation held on 5th September, 2016. These recommendations have been approved by the competent authority, as under:-

xxxx xxxx xxxx xxxx

“The IP should have been in continuous employment for last two years as on the date of diagnosis of the SST (other than cases of employment injury) and at least 156 days of contribution was paid by the IP during the immediately preceding four contribution periods with eligibility for sickness benefit in at least two benefit periods.”

After completion of the above period the IP and family will be eligible for the SST including the children of IP with congenit