The case of Sidhant's liver: how govt doesn't care for workers' insurance

QUICK PILL

The case

• Sidhant Gaiykwad, 14, suffers from advanced chronic liver disease, and has been awaiting a transplant for three years
• His father, Prahlad, works in an Aurangabad factory and can\'t afford the Rs 14 lakh needed for the surgery

The scheme

• Prahlad contributes towards the Employees State Insurance scheme, and thought he would get the money
• But a change in the ESI guidelines shot his case down - they don\'t allow for more than Rs 10 lakh to be given per year

More in the story

• Prahlad has moved court - how is it expected to respond?
• Is the ESIC denying his request because it is cash-strapped?

Employees in the unorganised sector know as little about the country's social security schemes as about their rights under the law and the Constitution.

Till date, there's no laudable security net for the millions employed in various private and non-governmental organisations across the country. And the schemes that do exist seem to not even reach those in dire need of aid.

Sidhant's case

Sidhant is the 14-year-old son of Prahlad Gaiykwad, a worker from Aurangabad. Sidhant suffers from advanced chronic liver disease, and needs to undergo liver transplant. He has been awaiting surgery for the last three years.

Prahlad works as a machine operator with an auto-manufacturing company in Aurangabad, and gets a monthly salary of Rs 13,000. He is the sole bread-winner for his family, consisting of his wife and three children. Naturally, he cannot afford to pay for his eldest son's operation.

But Prahlad doesn't need to. Since 2004, Prahlad has been contributing 2% of his salary every six months under a social security scheme known as the Employees State Insurance Scheme, run by the Employees State Insurance Corporation (ESIC), under the Ministry of Labour and Employment. This assures medical benefits to Prahlad and his family for as long as he is working and gets a salary less than Rs 15,000 per month.

The scheme is supposed to cover 1.95 crore families across the country. But Sidhant still awaits treatment.

This is because the scheme has a major impediment. In 2014, the ESIC revised the scheme, bringing in new guidelines, which limit the reach and benefits granted under it.

Under the 'high cost treatment' section of the ESI guidelines 2014, a beneficiary is not eligible to get in excess of Rs 10 lakh per year.

In the case of a procedure like a liver transplant, which requires an expense greater than Rs 10 lakh, the ESIC is to decide on a case-to-case basis whether the beneficiary is eligible for a reimbursement by the corporation.

Running from pillar to post

Prahlad had asked for a total for approximately Rs 14 lakh for the surgery at the Institute of Liver and Biliary Sciences (ILBS) in New Delhi.

ILBS had given an estimated expense of Rs 17,60,000, including Rs 11,50,000 towards the cost of transplant, Rs 2,50,000 towards the cost of the donor evaluation, and Rs 3,60,000 as the cost for the first year of life-long medication post-transplant.

So, the ESIC's head committee clearly thought Prahlad's son was not eligible for a liver transplant that could potentially save his life.

Prahlad was initially just worried about the operation, since he was certain he would be eligible under the ESI act of 1950, and since the donor was none other than his wife.

But since then, it's been a long battle for Prahlad and his family. They have come a long way from initially getting Sidhant diagnosed in Mumbai, and then commuting to the Capital to get Sidhant admitted at the ILBS. He also got back in touch with the hospital where his son was initially admitted for help.

After being denied reimbursement for the operation, Prahlad was asked to consult the ESIC in-charge in Delhi, but to no avail. He was just informed of the latest guidelines under the "ESIC Decisions on Medical Services-July 2014", under which he was ineligible due to the Rs 10 lakh limit.

He was also given a bizarre reason by a representative of the ESIC - that since his son was born after he registered under the scheme, he was not eligible. Nowhere in the ESI Act does it mention that all family members need to be born before the employee registers under the ESI scheme.

Approaching the court

Prahlad had not other option but to approach the court.

Ashok Aggarwal, Senior Advocate at the Supreme Court, said the rejection by the ESIC is not just irrational and arbitrary, but defeats the very purpose behind the ESI Act.

Aggarwal says he has fought more than 500 cases similar to Prahlad's, and while several of them act as precedents for the ESIC to take note of, it seems unwilling to budge from its old habits.

"While there is no estimate on the number of workers and labourers approaching the court for availing the benefits under the ESI Act, in the national capital itself, the number can go up to thousands each year," Aggarwal says.

Prof. Praveen Jha of the Centre for Economic Studies and Planning at JNU, says: "Presently, the Act states that if expenses exceed Rs 10 lakh, it needs to be looked at on a case-by-case basis. The bizarreness of this fact is that gazetted officers and the political elite do not have any limits. So why is there a limit only for workers? There is no logic behind it. The government is not going to lose much by allowing for such treatments.

"Going by the economic census, the organised sector is less than 1%. What are we doing for the rest? The present scheme is not designed in a way to cater to the needs of a majority of workers."

Aggarwal states that while it is not possible for every employee to afford to approach the court, the judiciary has given resoundingly favourable judgments, helping hundreds of patients that are beneficiaries under the ESI act. Aggarwal expects a favourable order this time as well.

Revenue surplus

In April, the Delhi High Court had directed the ESIC to grant interim treatment to three children: two from Bengaluru suffering from Gaucher disease, rejecting its argument that the therapy was too expensive.

"I think the most astonishing fact remains that ESIC has declared a revenue surplus last year," says Aggarwal. "Even so, more than 50% of employees eligible for the scheme are not beneficiaries, since they never registered due to a lack of awareness or being asked by their employers to not register," he adds.

Under the scheme, the employer has to contribute 5% of its revenue every six months towards the scheme.

Social security in India is far from reality, and the few legislations that aim to bring some sort of relief seem to have enough loopholes to leave a majority of the population out of the ambit of the schemes.

In cases like that of Prahlad and Sidhant, on the other hand, beneficiaries have to spend their time and money approaching to court to address their concerns.