It is a handsome November afternoon outside, and the mood at the monthly meeting of the Delhi Network of Positive People in Neb Sarai is relaxed, cheerful Saturday. There is giggling and catching up, a wedding invitation has been issued to all present, there are plans for singing and dancing later on. Tea is being made, biscuits have been ordered, and it is reliably learnt that bread pakoras will be served as well.
The sobering note is struck by me, the outsider. "Insurance rules are being changed," I say, amid a warm hum of murmurs. "From next year, you will also be eligible to purchase life insurance."
The murmuring stops. There are exclamations of confusion, some hands shoot up. This is a gathering of HIV-positive people. Nisha bought a life insurance policy three years ago; at the time she didn't know she was HIV-positive. Her husband, too, is HIV-positive. They have been paying the premiums on time, but does this mean their policy is not valid? What becomes of their son?
Gayatri, a tiny, brittle woman with hollowed cheeks, says she purchased a policy two years ago expressly because she was infected. She knows she was unwell and she wanted to leave behind something for her son. The agent had not asked about her HIV-status. "They have been calling about my second premium this past week. Should I pay it?" she asks.
They look to me, but I am only the bearer of news, no interpreter of insurance machinations. A quiet man called Manoj addresses the gathering. "It is unwise for people like us to purchase a policy. We think of it as security for our families. But insurance companies cancel the claim when they come to know of our status. I have only heard of one case where they managed to prove that they were unaware of their HIV status when they bought the policy. They were lucky enough to have the paperwork needed; they had a blood test report."
Insurance companies in India, both life and general insurers, are allowed to operate with a stunning exclusion: the withholding of insurance cover to the lakhs of people living with HIV (PLHIV).
On 11 October, the Insurance Regulatory Development Authority of India (IRDA) set about correcting this to an extent. The IRDA sent out a draft circular provisioning the sale of life insurance and health insurance to persons living with the HIV virus. The circular was directed to life insurance providers only; general insurers were not addressed. The policies are expected to come into effect from 1 April 2014.
You wouldn't have known of this exclusion, buried on page 12 or 13 or 14 of your policy, unless you are a connoisseur of insurance prose. Go check your policy. On page 12 of my 28-page health policy, point no 14 mentions that the company will not pay for any claims arising from "Any condition directly or indirectly caused by or associated with Human Immunodeficiency Virus or Variant/mutant viruses and or any syndrome or condition of a similar kind commonly referred to as AIDS."
Considering that this virus attacks the immunity system, the HIV-positive are left especially vulnerable to the infections that the human body is susceptible to, yet less able to combat them. The medical term for this is 'opportunistic infections'. Tuberculosis is the most common among opportunistic infections. Thus the phrase "Any condition directly or indirectly caused by…HIV" implies exclusion of insurance coverage for standard diseases for people living with HIV (PLHIV).
A Times of India report dated 2 February 2011 notes, "Currently, HIV is excluded from all insurance policies available in the country 'violating the national mandate of providing stigma-free care and support services'." More often than not, insurance agents are unaware of this exclusion, says Sanjiv, a member of the MSM (men who have sex with men) community in New Delhi, who sold insurance for "a few months". "Kahaan training dete hain (What training do we get as agents), sales targets are everything," he says.
The Life Insurance Corporation of India (LIC), the largest insurer in the country, responded to interview requests and emailed questions for this story with silence.
The exclusion is especially striking when you consider that diabetics can buy life insurance, albeit at a higher premium. Health insurers often have special policies designed for diabetics; LIC has a special policy called Asha Deep that covers cancer, kidney failure, stroke and heart diseases requiring bypass surgery.
"It is discrimination," says Paul of the Delhi Network of Positive People, speaking evenly, carefully, while the meeting winds down around him and culminates in singing requests. "Why can I not declare myself HIV-positive, like I can tick the box for smoking or drinking, and buy a policy?" Paul tested positive in 1995 and has a wife and three children. They are all, "thankfully", negative. He is one of the few people here aware of the exclusion and hasn't bought a policy. He'd like to. He has been on the first line of Antiretroviral Therapy (ART) for the past six months. (ART is the treatment to keep the HIV virus in check. The therapy is credited with robustly improving the life expectancy and quality of life of those living with HIV.)
It is possible to live long and well even without ART. Paul, for one, started ART a good 18 years after testing positive. And the risk that insurance companies underwrite by taking on HIV-positive clients has been lowered vastly across the population with ART, says the Department of AIDS Control (DAC), formerly known as NACO. The HIV-positive status is now a condition that can be managed - it's not a sentence of death. The Indian government has been offering free ART since 2004; the DAC says about 7 lakh persons are currently registered with government centres for ART.
There are, thus, two equal and opposite reasons pressing for the provision of insurance to the HIV-positive. The first is that as bearers of a condition with a higher mortality rate than average, the PLHIV require the security that insurance offers. Second, as the condition is made more manageable with improvement in medicine and the delivery of public healthcare, the risks and costs of insuring the PLHIV have reduced.
There is, of course, a third reason that applies to us all: choice. The PLHIV should be able to buy insurance if they wish to.
It is also true that the thought of insurance has not really registered among those who live with HIV or are at a high risk of contracting the infection.
At the office of DART, an NGO working with a 1,000-strong MSM community in Khanpur in Delhi, there is a synchronized shaking of the head when I ask about insurance. "Kyun, aap karwa dengi? (Why, will you get it done?)" asks Sakshi, a hijra, to a symphony of laughter.
Of the 10-odd folks gathered at this the Delhi Network of Positive People meeting, none has considered an insurance option except Sanjiv, who once worked as an insurance agent and has a policy. "There is very little awareness in the MSM community and among IDUs (injecting drug users). We barely manage to cover sexual health and protection," he says.
"With my salary, I wouldn't be able to afford it," says Aman/Anamika, who works at a pizza outlet, after thinking for a few minutes. There are several nods. Yet, the lack of awareness or the lack of intent to buy insurance does not mean these people should be denied the choice. The lead taken by government agencies and advocacy organizations to make insurance available to PLHIV is important in this measure - it is a step towards equal citizenship.
The HIV/AIDS Bill 2007 lists denial of insurance as a measure of discrimination. A section titled Prohibition of Discrimination specifies that "No person shall be subject to discrimination in any form by the State or any other person in relation to any sphere of public activity including denial of, or unfair treatment in, the provision of insurance unless such unfair treatment is based on and supported by actuarial studies."
This is among the few provisions in the Bill that have not been contested, says Raman Chawla, a senior advocacy officer with the HIV unit of the Lawyer's Collective in New Delhi. The Bill is slated to be tabled in the winter session of Parliament and will, hopefully, become law soon. "We have been hoping for that for seven years now," Chawla smiles resolutely, like a good girl through a toothache.
The bill's key phrase - "unless such unfair treatment is based on and supported by actuarial studies" - leaves much at the hands of actuaries (who do the insurance calculations). The IRDA circular comes pinned with two reports on 'mortality' and 'morbidity' of the PLHIV from the Institute of Actuaries, offering suggestions for designing insurance policies; presumably, the regulatory authority endorses these proposals.
Any form of insurance calculation is at once a formidable accomplishment: in addition to the interest and expense variables, a perplexing number of risk factors (which determine the rate of mortality) are invoked in the computation of the premium. 'Mortality' is the number of deaths per thousand of population, 'morbidity' marks the prevalence of a disease per thousand of population. Your age and sex apart, your smoking, your car, your diabetes and cholesterol are only some of the many risks that determine your mortality rate. (Securing any manner of insurance claim is even more of a formidable accomplishment.)
For the PLHIV, the rate of mortality is deemed higher, meaning it is riskier and costlier for insurance firms to sign up HIV-positive clients. This is why nearly no one sells insurance to the HIV-positive. It has, therefore, been suggested by the Institute of Actuaries that two criteria be stipulated specifically for this demographic, based on the fulfillment of which insurance be sold to them:
Condition No. 1: The HIV-positive must possess a minimum CD4 count of 350 to purchase insurance. (CD4 or T-helper cells are white blood cells that fight infection. Normal CD4 counts range from 500-1,500 cells per cubic mm of blood. AIDS is defined by a CD4 count of 150 or below.)
Condition No. 2: This 350+ CD4 count must have been maintained for a "reasonable period" prior to purchasing insurance; the precise period can be determined on an individual basis by a doctor.
The morbidity study suggests a sum of Rs 27,800 as approximate hospitalization charges for a single person living with HIV, and Rs 41,400 for an HIV-positive couple. This is for the pricing of medical insurance schemes for PLHIV by life insurance providers.
How sound are these suggestions? Dr Atul Kakar, senior consultant at Ganga Ram Hospital in New Delhi who treats several HIV-positive patients, says the count of 350 would exclude the majority of his patients. "I do not know what they will decide is a 'reasonable period' of ART; it can take up six months to get to a 350 CD4 count, and for some even this is not enough," he says. The 30-odd people who had gathered at the Delhi Network meeting, however, reported the happy development of improving CD4 counts after starting ART (the treatment is started when the CD4 count nears 350). They should, theoretically, be able to purchase insurance by these guidelines.
The DAC thinks the benchmark of 350 CD4 count could be waived for those who show steadily improving CD4 counts, on the advice of a medical consultant. Chawla, though, feels the "viral load" of HIV should also be considered alongside the CD4 count. The viral load measures the number of copies of the Human Immunodeficiency Virus per ml of blood. The lower the viral load, the better; it means a lower count of the virus in the body. "Many patients have low CD4 counts and low viral loads. Why should they not be considered?" asks Chawla. However, viral load testing is a matter of considerable expense and is unlikely to be included for this reason, says Kakar.
The DAC also feels that the pricing for health insurance is unreasonably high, calculated on the basis of inappropriate data focusing on an older age group and not distinguishing between men and women. The DAC is, in fact, distinctly underwhelmed by the IRDA initiative. "The circular addresses only life insurers. What about general insurers selling health insurance?" asks Aradhana Johri, additional secretary with the DAC. (Johri has since been made secretary, Department of Pharmaceuticals, Ministry of Chemicals and Fertilizers.) The DAC wants every general insurer to offer at least one insurance product that does not exclude the PLHIV. "The IRDA circular carries no mention of group health insurance schemes and government-funded health insurance schemes either. Why should the PLHIV be excluded from these?" asks Johri.
The department is the first to push for insurance provisions for the HIV-positive. In 2010, they had ordered a "desk review" of the issues facing PLHIV and were unpleasantly surprised to find that insurers in India refuse cover to the HIV-positive. They did a recce of the international situation and were particularly impressed with South Africa where a rather high percentage of the population, 18 percent, is HIV-positive yet there is insurance covering the cost of ART. Only 0.27 percent of India's population is HIV-positive. A Times of India report notes that Namibia, Uganda, Guyana and the US also have commercial health insurance for the HIV-positive.
The only insurance product available to the HIV-positive in India, and much celebrated for being so, is from a general insurer: a medical policy called Star Netplus offered by the Chennai-based firm Star Health Insurance since 2008. There is one strict pre-condition for availing the policy: a minimum CD4 count of 350, the same that the IRDA is endorsing. Netplus began as a group insurance policy covering hospitalization charges for the HIV-positive on an annual basis, and the payment of a lump sum when the policyholder reaches the stage of AIDS. Once a person reaches the AIDS stage, though, the policy cannot be renewed.
Netplus does not cover treatment - the ART - to keep the HIV virus in check. (ART is also available in private healthcare for a steep price, while the first and second-lines of ART treatment are offered free by the government.)
The DAC, however, wants health insurance schemes to cover the cost of ART. Netplus has proved so popular that it is now offered for sale to individuals as well, says Rama Doraiswami, assistant vice-president with the company.
But Netplus has two astounding exclusions: treatment of the HIV-positive for tuberculosis and gastro-enteritis. Tuberculosis happens to be the commonest opportunistic infection suffered by PLHIV, says Kakar. Diarrhoea, too, is a common affliction among the HIV-positive and it is likely that gastro-enteritis refers to attacks of diarrhea. It seems, then, that Netplus covers meaningfully little.
Nevertheless, the policy has faithful, long-time supporters. "See, when there is nothing, we need to work with what is available," says the unreasonably energetic Vinita Sidhartha of the Petralthan Pillaiya Trust (PPT) that works on raising funds for children with HIV. (The name 'Petralthan Pillaiya' translates to the question 'Do you have to bear the child for it to be yours?'; glorious, flamboyant Tamizh-technicolour rhetoric.) The PPT has a group-insurance policy with Star Health for 2,286 children living with HIV since 2009, at a subsidized rate. "They are definitely able to enjoy a certain quality of life thanks to medical insurance, even if the majority of them come from poorly-educated families who are unsettled by the intricate procedural requirements to claim insurance," she says. "We are trying to educate them about utilizing insurance. Government hospitals are bleak, over-stretched and often really far away."
Maitri, a counselor with the Delhi Network of Positive People, doesn't see the point of health insurance schemes, at least not for herself. She has been on the first line of ART treatment for several years. "If I get TB, one of my doctors refers me to the local DOTS centre. When I fall ill with something else, I get a referral to the closest government hospital." And what about when she needs an operation or has an accident? "The government hospital is free, medicines are supposed to be free too, but when they don't have them, I can buy those. What I would like is life insurance, so my sons can get something. My husband is not HIV-positive but he says he doesn't want to get a policy. Perhaps out of a sense of solidarity," she grins.
But, as Johri says, we assume the perfect delivery of government healthcare here. More importantly, she says, "It's a matter of equal rights. Why should the PLHIV not be able to buy health insurance [from a general insurer] like anyone else? This is what I think lies at the heart of the HIV/AIDS Bill - removing the stigma."
The plan was to discuss this, and several other questions with the IRDA. But our chief protagonist turned out to be bafflingly shy. Repeated requests for an interview were deflected with the promise of emailed answers. When this materialized after two weeks of writing, it was one sheet of desiccated answers that explained nothing.
But there's no need to take this personally. The DAC has been waiting for answers, too.
Sohini Chattopadhyay is a journalist based in New Delhi. She has been Deputy Books and Arts Editor with Open magazine, an apprentice chef at the Bullerei in Hamburg and a sociology student in Edinburgh. She can be reached on firstname.lastname@example.org.