April 1, 2014 would usher in not only a new fiscal. It would also ring in a new dawn for nearly 2.40 million people infected with HIV/AIDS.
Having been kept at an arm’s length by most sections of society, including sections of the state, they would start getting counted as ‘regular’ Indian citizens, finally. For, from that day ‘people living with HIV’ – or PLHIV – would get medical insurance benefits.

According to a recent notification of the Insurance Regulatory and Development Authority (IRDA), the regulatory body for the sector, all insurers will be required to cover people with HIV, as also continue to offer health coverage to existing customers who are diagnosed as HIV-positive after buying the policies.

But this is not a story of the regulation, or the notification. This is the story of the struggle to get to that point. A struggle that took three years – almost to the day.

For Rajeev Sharma, Delhi-based activist who is the prime force behind the revolutionary regulation, it was workshop that changed his life. At the event, held in Bhopal in September 2009 to train people working in the field of HIV/AIDS, Sharma says he got the “shock of his life”. There is no health insurance coverage for HIV/AIDS patients, or PLHIV, he learnt. “They are in the ‘exclusion clause’ category of health insurance companies,” as Sharma recalls one of the trainers putting it.

That piece of information reverberated in Sharma’s mind throughout the daylong event. “It was an eye-opener for me. I did not know this fact despite working in the area of labour and workers,” he says.

Sharma had started working as a researcher in the field of labour and trade unions straight after getting his PhD from Delhi’s Jawaharlal Nehru University in 1996. In 2001, he joined the South Asia office of the Building and Wood Workers International (BWI) as the regional policy officer. Operating out of Geneva, BWI, affiliated with the International Labour Organisation, is a global federation of 350 trade unions from 130 countries, including 39 from India.

“Since a lot of workers suffer from HIV/AIDS, it is also a trade union issue,” he says, indicating the level of surprise that clouded his mind while processing the information that HIV patients were treated like pariahs by health insurance companies. According to him, most PLHIVs come from economically disadvantaged groups – among them female sex workers, migrants and truckers.

While returning to Delhi after the workshop, jointly organised by BWI and the Delhi-based Naz Foundation, which works in the field of HIV-AIDS, Sharma had made up his mind: he would work extensively on this issue. And that silent fight has gone on over the last four years.

“If a country like Namibia can afford to have insurance coverage for HIV/AIDS patients, why not India?” Sharma, now 44, says, almost wondering aloud. He says an HIV/AIDS patient can live for a further 20 to 25 years if given proper treatment.

The slog begins

Spending the last two months of 2009 extensively on researching and comprehending the subject, Sharma first called up health insurance companies and asked them whether they had policies for people affected with HIV/AIDS. In December that year he shot off letters to all leading insurance companies – both private and public. “I need insurance cover for our offices and one of our colleagues is suffering from HIV. Can you cover my colleague?” he wrote.

The reply – even the lack of it – was startling: “Some (insurance companies) did not respond; most replied saying there was no such health coverage.”
Public sector health insurance companies also put HIV/AIDS patients in the exclusion list, he adds.

PLHIVs were not covered even under the Rashtriya Swasthya Bima Yojana (RSBY), launched by the labour ministry in 2008 to provide cashless insurance for people living below the poverty line (BPL) for recuperation in public as well as private hospitals.

Sharma also learnt that the dice is loaded against even existing policyholders who get diagnosed with HIV/AIDS during the policy period. These people, too, are put under the “exclusion category”.

While denying medical coverage to adult PLHIVs is immoral to begin with, Sharma gets more agitated talking about the young victims: “What about thousands of children who are suffering (from HIV/AIDS)? These companies don’t cover them as well.”

IRDA, the insurance regulator, specifically excluded all cases related to AIDS under section 32B of the Insurance Act 1938, he points out. “The public insurance companies, too, are enforcing stigma,” he alleges, adding in the same breath that the National Aids Control Organisation (Naco) is working against it.

Having touched base with the insurers, the next step was to arrive at the “real cost” of treatment. He filed a right to information query with Naco, which is under the ministry of health and family welfare and aims to prevent and control HIV/AIDS, and learnt that the cost of first-line anti-retro viral drugs per patient is approximately '5,000 annually. The second-line anti-retro viral drugs cost '29,000 per patient per year, Naco said in reply.

“While treatment of HIV/AIDS can be quite expensive, treatment for other medical conditions which are not excluded from insurance benefits, such as cancer or kidney failure, can be costlier,” Sharma says, questioning why insurance firms should keep PLHIVs at arm’s length.

Moving the court

Gathering all the information took him six months. In March 2010, he took help of lawyer friends, drafted a petition and filed a public interest litigation (PIL) in the Delhi high court.

If Sharma thought he was the proverbial David taking on Goliath in the form of the health insurance industry, he was right. But if he thought the first slingshot would fell the adversary, he could not have been farther from the truth. Hearing the case, justice Dipak Misra ticked off Sharma’s lawyer for not doing proper homework on a serious and humanitarian matter and asked who had worked on the petition.

As the lawyer answered the petitioner had done it and Sharma identified himself in the court, justice Misra advised him to file a properly constituted writ petition so that appropriate actions can be issued to protect interests of PLHIVs.

“The judge asked me to withdraw the petition and come up with more material,” Sharma says, “but it was not discouraging for me. Rather, it was the turning point – it encouraged me to work more on this issue.”

In the following months Sharma collected more information, spoke with more people who had faced such discrimination, and gathered evidence from all walks of life. Finally, he was ready to file a fresh petition.

He also got in touch with professional lawyers from the Human Rights Law Network (HRLN), an NGO run under the guidance of senior supreme court lawyer Colin Gonsalves in New Delhi that works for poor and marginalised sections of society.

The improved petition gave an example of a private insurance company in Karnataka that offered insurance coverage for PLHIV (see box). It also submitted a high court order in the United India Insurance Company vs Mohanlal Aggarwal case. “Providing adequate medical facilities for the people is an essential part of the obligation undertaken by the government,” the court order had said.

The petition noted that in 2007 the government had mooted health insurance coverage for HIV/AIDS, but the plan was never implemented.
It also cited that the ministry of labour and employment issued a policy on HIV/AIDS in 2009 which had identified development of insurance policies/products, including for PLHIVs. “Insurance companies are encouraged to develop and offer all-inclusive health insurance policies/products to cover people living with HIV,” the ministry’s document said.

The petition submitted that discrimination by health insurance companies cannot be justified on economic grounds: “IRDA has failed not only to uphold Articles 14, 21 and 47 of the constitution but has also failed to perform statutory duties imposed on it by section 14 of the IRDA Act.”

With Sharma filing the fresh petition in 2011, the division bench headed by justice Dipak Misra issued notices to the government, Naco and IRDA and asked why insurance companies are not providing medical cover to HIV/AIDS patients. The court asked IRDA to file a reply by July 27, 2011.

IRDA issues draft guidelines

Asked to move on by the court, the Hyderabad-based IRDA formed a team and issued an exposure draft in February 2012. “All life insurers and general insurers shall put in place an underwriting policy on health insurance coverage for persons suffering from HIV,” it said (see box for more).

The draft was prepared under section 14(2) of IRDA Act-1999 to provide insurance cover to persons living with HIV and people vulnerable to HIV/AIDS under health insurance policies of both life and non-life insurance companies. The companies were given chance to submit suggestions, as they were hesitant about the pricing factor.

Proposing to implement the guidelines from October 1, 2012, IRDA asked insurance companies not to deny claims of existing policyholders diagnosed with HIV/AIDS during the tenure of insurance.

With insurance companies not issuing the pricing policy for covering PLHIVs till February 2013, Sharma filed another PIL in the Delhi high court in February 2013 to know the status of the case. On February 21, the bench of justices D Murugesan and VK Jain directed IRDA to implement the guidelines providing health insurance coverage for PLHIVs “within six months from today”.

Disposing of Sharma’s PIL, the bench told him to move the court again if “nothing happens” in the next six months. While IRDA has now said that the new rules would be implemented from April 1, 2014, for Sharma the struggle is not over. “I cannot leave without getting the full result,” he says.
 

(This article appeared in the December 15 to 31, 2013 issue of the magazine)