The silent discrimination
27 Dec 2013 11:00 PM GMT
1 April 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 a 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 Rs 5,000 annually. The second-line anti-retro viral drugs cost Rs 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.
By arrangement with Governance Now
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 a 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 Rs 5,000 annually. The second-line anti-retro viral drugs cost Rs 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.
By arrangement with Governance Now
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