health insurance for people with HIV

What insurance company will not insure people with HIV? One that does not understand the virus and the people living with it.

A month back I was called by my line manager to his office, we discussed about health insurance project that my organization implemented last year and their intention to continue and expand the project. The previous project was in collaboration with two non-profit organizations, donor agency and a private insurance company. An insurance product was developed specifically for people with HIV with CD4 count not lower than 300. As we know it, insurance is never free. The project allowed people living with HIV (PLHIV) to pay half of the Rs1,500 annual premium ($34), the other half was shouldered by one of the partners. Through this more than 1000 PLHIVs were able to avail of a health insurance.

There are about 2.3 million cases of HIV in India. PLHIVs need this insurance because although Anti-retroviral treatment (ART) is covered by the Indian government, it is not the only health-related expense they have. Eighty per cent of health expenses in India are out of pocket and only 20% is covered by the government; a household with one PLHIV spends 3 to 6 times higher than the general population because of opportunistic infections as a result of their weakened immune system.

I need to help the project manager extract from our MIS relevant data to determine mortality and morbidity rate of the people with HIV. A meeting with the one of the partners weeks later made the data requirements clear and for what. We need to produce numerical evidences that will convince insurance companies that designing health insurance product for PLHIV is feasible. The partner wanted us to determine the life expectancy of a person living with HIV.

No insurance company with all its business sense intact will offer any product to individuals with already one foot in the grave. This is the challenge we have, to prove that people with HIV are not dead people walking and are still viable clients. But none of us in the organization has the expertise to calculate life expectancy and will require resources to get people to do that for us. The partner was rational enough to accept our proposition that the organization will produce substantial information to establish evidence that people with HIV don’t just drop dead the minute they contract the virus, and in fact can survive many more years with adequate health services.

I don’t blame the insurance companies for their ignorance of the virus. For almost three decades now there is still the stigma that accompanies HIV and the mistaken belief that it is the same thing as AIDS. I, myself, was guilty of that. It was only after meeting people with HIV in the Philippines and hearing their testimonies that my perception changed.

As the project is yet to begin I don’t have the figures to show that there are so and so number of people who have been living with HIV for the past 5, 10, 15 or 20 years. But I do know of Indians, real people who were infected with the virus and yet looking haler than I am.

There’s Senthil, the person I mentioned in my previous post. When he tested positive for HIV some 8 or 9 years ago his CD4 count was 14. He was ready to die. But upon detection of the virus his doctor immediately put him on anti-retroviral therapy, started having proper nutrition; his CD4 steadily rose, now at 800. He is now one of the most active and most committed members of the PLHIV network. He is featured in educational poster wearing a suit and looking suave.


Nandhini was a staff of the organization, a chubby woman who ambled in the office everyday dressed in her smile and colourful sari. One day I saw her with great effort and almost distorted face, taking milk curd. I could emphatise with her because I don’t like curd. “What’s that?” I asked. “Curd, curd, increase CD4”. Had she not divulged to me her HIV status I wouldn’t have guessed at all. She contracted the virus over 5 years ago. She said she maintains her CD4 count above 1000, lower than that and she could get cancer. Consistent with my role in monitoring and evaluation, every week I would ask, “CD4 count?” And she would proudly update me with her progress, last I heard before she resigned from her job to attend to her store her CD4 was 1300.

There’s also N, another staff. He is not as open about his HIV status like the others but he religiously nibbles on amla, a yellowish round fruit with an acrid taste, rich in vitamins and helps increase CD4. (I know because they made me taste it. Oh, they will make me taste everything.)

Of course, there’s the indefatigable KK. Abraham who founded the network with Ashok Pillai and 10 others, back in 1997; he remains an active advocate for the rights of “positive people” (this is not the politically correct term, I must admit). And oh, the first man in India, who was identified to have HIV back in 1986, just passed by as I wrote this! He’s gained weight since the last time I saw him.

There are so many others I’ve met whose names are too difficult for me to remember or pronounce. One thing common to all of them is they are all on ART, getting proper nutrition, living healthy lifestyles. They succumb to illness more often than sometimes. But many of us do, even sans the virus.

It’s premature to say whether private companies would agree to the creation of special health insurance product for these people. If any one does, it is not to say that it will become fashionable to be HIV positive, and it is not even an assurance that all of the estimated 2.3 million PLHIVs in India will be able to buy the product because majority of them are from low-income groups. But if something like this becomes available it is a step forward to changing the view towards HIV and the people living with it. I believe it will, aside from ease the burden of accessing medical services, significantly reduce the stigma that accompanies the virus considering that insurance companies are very prudent in choosing their clients. It should also boost the morale of people with HIV who have not only suffered from discrimination from others but also from self-stigma. And as insurance becomes available, more people may have the courage to get themselves tested, and if positive can come out, disclose their status, get counseling and advices, help prevent possible transmission.

I may be dreaming now, but that’s where many realities start anyway.

photo posted with permission from senthil

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Remembering Ashok Pillai (1968-2002)

My online chatting with a good friend, Yhen, in the Philippines, was interrupted by a colleague in my organization. He said we were going to the meeting hall for five minutes of prayer. The immediate thought that came to mind was that one PLHIV has just succumbed to AIDS. I have come to learn here that when a member of network passes away due to complications of AIDS, they pause for five minutes of prayer to pay their last respect and then get back to their busy schedules. There is so much to do that if they take days to grieve for a late PLHIV will mean a lot of time taken away from those who are still living and striving to survive.

In the meeting hall all the staffs were gathered, on an oval glass table were two photos. One was a poster of a tall and fit young professional, in polished black leather shoes, slacks and white buttoned shirt and suspenders, hands in the pockets of his trousers, flashing a big smile his back leaning on an invisible wall. The poster said, "i'm 31, i have a successful career, i work out in a gym, i love to dance, i miss my flight sometimes and i have HIV for the last 11 years". The other is a framed portrait of an older man who seemed lost in thoughts, with just a hint of a smile in his face. His hands were clasped under his chin.

I've not met these two men but i have become familiar with their faces because both the poster and framed photo were displayed in the meeting hall. I knew that both men were living with HIV but i didn't know that the one in the poster and the other in the picture frame was one and the same man. The pictures were taken two years apart but there was a sharp contrast in his miens. It was Ashok Pillai, one of the founders and the second president of Indian Network of People Living with HIV (INP+) who passed away on April 19, 2002. In 2000 Ashok Pillai was very healthy, but the virus eventually damaged his immune system entirely. At 1 pm on that day in 2002 he had a seizure while working at his desk and perished at 4:30 pm. He was 33.

I soon realized that we were commemorating his death. Senthil, the vice president of INP+, himself living with HIV for the last 8 or 9 years now gave a short speech in Tamil about Ashok Pillai, then he invited everyone to bow our heads and say our silent prayers. ( As an atheist, i couldn't pray, don't know how to pray but i bowed in silence as well). Then each of the staff were handed white candle for us to light and offered to Ashok Pillai. (I think that was the meaning of it). Senthil asked one staff to say something about Ashok Pillai in English, for the benefit of us two VSO volunteers.

Bit of what he said: "I have heard of Ashok Pillai and I didn't know what he looked like... When I joined INP+ i was led to what was going to be my desk, I was told that it was Ashok Pillai's. It was where he worked and died. At the time Ashok Pillai died anti-retroviral therapy (ART) was already available in India but not for free. ART then cost from Rs15,000 to Rs.50,000. Although he could afford it, Ashok Pillai refused to take ART even when his CD4 count dropped to and all-time low of 10, and vowed that he wouldn't for as long as the government was not giving free ART to millions of Indians with HIV who could not afford the cost. Seven years after his death, with continuing advocacy efforts of INP+ about 2 lakhs of the members (200,000) are getting free ART from the government."

The staff then sang solemnly "we shall overcome, we shall overcome one day. we shall overcome, i do believe in my heart we shall overcome one day". The ritual ended with sweets distributed to all the staff.



file photo from INP+

Who said I couldn’t wear tank top

All I wanted on the eve of Diwali last year, was to be able to go out, get my groceries wearing comfy tank top. I expected that most shops would be closed the following day as Hindus celebrated the festival of lights and sweets (and firecrackers). If I couldn’t do my shopping I would starve by Sunday. I was not insecure about Diwali (Saturday) as I was invited to celebrate the festival with two families that took care of lunch and dinner.

It’s a protracted walk to and from my favored grocer’s shop on a humid day. I fought long and hard with myself before finally deciding to go out in tank top with a shawl wrapped around my shoulders. It was a compromise after internal debate whether to conform to Tamilian culture or assert my right to wear anything I wanted.

I wondered what could happen if I went out baring my shoulders. Light-skinned, I am obviously a foreigner here. I thought that Chennai, being a mixed of Tamilians, South Indians and few other nationalities, it would be more tolerant when it sees a foreign woman walking alone in the streets in tank top. But remembering that we have been advised to respect the culture, and that the erogenous zones for them were legs, shoulders and chest, a tank top could be perceived as an affront. Worse, create an image of loose morals.

Although most people I asked told me that Chennai’s culture has changed considerably through the years the conservatism is palpable through the clothes they wear. Majority of women wear sari. A sari is a colorful untailored fabric five or six yards long wound around the waist, the extra length is thrown over one shoulder, pinned to the blouse, goes all the way around to the waist, the end is tucked in at the left side of the front waist. It goes with short-sleeved, tight-fitting blouses enough to cover the upper trunk. The midriff is only partially hidden, but one need not peek through to see their bellies.

Many men wear lungi, by my estimate three for every ten men. A lungi is like a sarong, a fabric with two opposite ends sewn together, it’s draped around the waist pleated in front of the groin. Some lungis are folded twice and worn short, some four or five inches above the knee.
I often wondered what’s under a sari or a lungi. Once or twice I no longer inhibited myself and just begged female colleagues to lift the hems of their saris to show what they use as undergarment and saw that they wear long skirts. I couldn’t do that with men, but I was told they may have boxers. Yet during Diwali there was a man in lungi lying carelessly on a pavement, I accidentally (okay, maybe not accidentally) saw that there was nothing underneath. I am digressing.

With all due respect to their culture, if women can bare their bellies and men their legs, what is so wrong if I am fully clothed save for part of my shoulders? It may be an erogenous zone for them but my own sensibility tells me the bellies and legs are better unexposed.

Here in the compound where I live, my male neighbors wander about without shirts on, while women are covered down to their heels even inside their homes. This differentiation in manner of dressing alone already infuriates me. Much as I want to be sensitive and respectful of the culture it runs counter to my conviction to gender equality. I cannot go on here as volunteer without ever having to do something or anything about it. Certainly I cannot change their thinking and their values, but I can at the least assert my own right.

I asked colleagues in my organization if it’s really impossible for me to go out in tank top. They said not. Both male and female colleagues said I could do it at my own risk. Just be prepared for the consequences; probably be stared at more than usual. Perhaps they may even pardon me for being a foreigner.

Taking the risk was the least I could do so I don’t insult myself feeling powerless just over what I could wear or not. So then I resolved that I would dress up as decently comfortable as possible, just to desensitize the people around me and those I would meet in the streets. I took the risk and went to the grocery shop on that eve of Diwali in tank top and a scarf to cover my shoulder. As I wore the scarf loose it occasionally dropped and exposed my shoulders. Except for a young boy who looked intently, curious than anything, no one actually was insulted, offended or outraged (at least not overtly).

I also started going up my rooftop wearing shorts to hang my clothes. The first time I did it, a male neighbor who happened to be at his terrace called the other men to come out and ogled. I was finished hanging my clothes by the time I could make out what they were saying in Tamil. The succeeding times they got used to seeing me in shorts with a bucket full of clothes to dry and there was no more fuss.

Six months after that Diwali and after having explored larger parts of Chennai, I found that other Indian women (read: not Tamilian) do wear western clothes in a far more daring fashion. Roles are reversed as I am now the one who can’t help gazing at them, but in a deferential manner.

There are a lot of moral policing going on in India, not just in Chennai, too many restrictions especially for Indian women. It takes courage to challenge the cultural norms, shedding off the sari makes at least a good start, so does wearing a tank top.

(Note: I find sari one of the most elegant things a woman can wear. I even loved it when I wore one. It’s different when it is considered a symbol of women’s status in male-dominated society.)

photos by Francesca (me in sari) and Mike (men in lungi)

Living in Chennai

(repost from previous blog)
I am waiting for that day, before I write again when I would begin with “It’s an exhilarating day today” or ‘something unforgettably wonderful happened”. It’s not my standard opening line, and not a very appealing one, but at least it wouldn’t suggest another tirade. I thought India and its citizens deserve some praise from me for letting me in this incredible country. But so far, my experiences here have just been that, incredible.

I blame it partly on my indolence to discover more of the sights, history and culture. I’ve been here for two months, but I can count in my fingers how many places I have visited, a Jain temple in Old Delhi, the Red Fort in Agra and right across it is the Taj Mahal which would have been really inane if I missed going there, and Spencer Plaza (a shopping mall) here in Chennai. On one hand, the fact that I am staying here for two years psyches me up that I have the luxury of time, later not sooner I’ll see enough of India. On the other hand, there are limitations to what I can and am willing to do at the moment.

As I live alone sans the comfort of a washer and a clothesline I spend a good deal of my weekends doing my laundry on an installment basis. I don’t have a flat iron so I hang my clothes in the bathroom without wringing them to avoid crease; the drying process of course takes place only after excess water have completely dripped. That was the culprit why I was unable to have a sleepover in a house by the sea last Saturday. And then by the time I finish washing one batch, it’s time to cook.

Culinary chore takes longer for me here. I have learned to use the pressure cooker after giving up the first time when I couldn’t even seal the lid. A colleague from my NGO came to my flat one day to teach me how to press and turn the lid to close. It never fails to give me a start every time it whistles to let out steam. Four whistles indicate that the rice is cooked, wait for a couple more minutes till all the steam is released before taking the lid off, that is if you don’t want it to blow up on your face. It saves both time and LPG.

That gives me time to stare at the stuff in my fridge. What to cook other than rice is a test of patience and creativity. I have all kinds of masala (spices) in my kitchen but I don’t know which goes with what vegetable. Fish and other seafood are stupendously expensive in this coastal city; something about a dispute with Sri Lanka on territorial waters gives reason for fish sellers to peg a high price on them. And when I’ve had my fill, the sun has risen so high (with a normal temperature of 35 degrees Celsius) and discourages me to venture out as it takes half hour walk to get to the nearest bus stop. Unlike in Manila, the buses here don’t just load and unload passengers anywhere the drivers and/or the commuters please.

The other limitation is that most people taking the buses cannot speak English and the bus signs are in Tamil script. Sure I’ve learned to read and write, but my reading proficiency is of kindergarten level, one letter per 30 seconds. The buses don’t wait for more than one minute at the stops, imagine how far and how long the bus has left before I finish reading Vellachery written in Tamil. And that’s not even where I am going. My Tamil vocabulary is also restricted to what my language teacher taught me, none helps in asking for directions. I can say, “Spencer Plaza naan po keerayn.” (I am going to Spencer Plaza). And then I get answers in Hindi. Who knows what they’re saying, might be ‘good for you’ or ‘what do I care?”. The good thing is that buses here are number coded, like buses with number 18 on the sign board are going to the High Court and passes Spencer Plaza.

Whenever I go out, I make sure to don western clothes. That makes people nice and helpful to me. I look like a northeastern Indian so if I put on Indian clothes, unless I open my mouth and speak, I’d probably be just ignored. The downside is the cost of fruits and vegetables instantly goes up when I’m the one buying. Last week I went to buy a few pieces of ordinary guava, less than half kilogram which cost me Rs,30. Shucks, you don’t even need fertilizer to make a guava tree bear fruit, and it’s a perennial fruit too. How could it cost that much! My colleagues said they could have gotten it at half the price. Aarrgh.

Still another limitation is I don’t have a local phone SIM yet. Two or three days after arriving to Chennai I bought a local SIM at Rs19 with lifetime validity. I availed of a promo that if I recharged (they call it recharge here, not load) with minimum of Rs50 plus additional Rs123, for one month all calls to the same network within the state is only 0.35 paise per minute and calls to same network outside the state of Tamil Nadu is Rs1 per minute. Not bad at all. Three or four days later, I couldn’t use my phone. Every time I dialed a number I get a recorded message that my line is temporarily suspended for non-submission of documents. Unlike in the Philippines, even the pre-paid SIMs have to be duly registered here; the Indian government beefed up security system after the Mumbai terror attack last year. Prior to that, getting SIM was as easy buying a piece of candy.

So it was that I lacked one document (a local referee) which I immediately produced. Another week passed still my phone wasn’t working. When I went to the retail shop, I was asked to provide 3 more ID cards. Ok, done. Another day, proof of my birthday was needed. I told them they could see the date of my birth in the passport. Convinced, they said I should fill up a form. And then today, they want another photocopy of my passport and visa, to have a proof of my address in Manila. Tsk! I wonder if they make an effort to be obnoxious or is it their gift. I ended up telling them to give me back my documents and I’d go to another network instead.

So you see, still unfamiliar with a huge city (population: 6 million) I dare not go out without a phone handy. However friendly people might be here, compared to Dehliites, there’s a language barrier. The only recourse I have when I wander too far off my intended destination is to call people from my NGO, who by the way would tell me to see this place or that but won’t tell me how to get there. Almost all of them have motorbikes so they don’t really know which bus would take me where. When I got lost the first time I approached the only person who looked like she could speak English, and she really could. When I told her I wanted to go to Spencer Plaza, she answered, “I don’t know, I am also new here.” She could have been as lost as I was but at least we understood each other.

Taking an auto-rickshaw would be far convenient but I’ve already gotten in too many arguments with rickshaw drivers since I arrived here (I got a lot of practice from the taxi drivers in Manila). Auto-rickshaws are tricycles to Filipinos but instead of regulated fixed fare they have meters, which never work. At least that’s what the drivers claim.

I am a person who values my space and privacy. When I was still staying in a hotel and I ordered coffee or tea they would make me wait for half-hour and then either of the three very young room boys, Suresh, Sadish or Ati, would ring the doorbell and forcefully open my door, if I left my door unlocked from inside they would brazenly barge in. And I’m not even telling about my half-consumed Cadbury dark chocolate I left in my room one morning and gone in the afternoon. At least one of them took out my garbage. And oh, I lost a 50-peso bill. Imagine that, what use do they have for it?

Now that I have my own flat, I have to be scrupulous with the things I store in my fridge. When colleagues come to check on me, they would inspect everything, my room, my shelf, what’s inside my fridge. I happened to find dried fish sold here which I had mistaken for smoked fish. I don’t know what’s with dried fish but it was news at the office that I bought it. “So, you bought dried fish huh”, one woman said. “Yes, she bought dried fish.”, the woman who inspected my fridge replied for me, and then a man who just happened to pass by butted in, “oh you bought dried fish huh.” Not to be mistaken as a grumble, I must add that when I ate the dried fish I felt itchy all over my body. It turned out I have to soak it in hot water for a few minutes and then rinse with tap water before frying it.

So you see, even as I attempt to write about the wonderful things about Incredible India, I can’t now. I am still trying to recover from culture shock. That in restaurants they use just one cloth to wipe sweat, dishes and kitchen counter is another story to tell. At this point, I must remind myself again that I am a volunteer in another Third World country. The term may be obsolete but I like to use it one last time only because it was Jawaharlal Nehru who coined that term. In spite of it all I am happy being here. India is an enchanting place. I know that in time I’ll be able to write about it and begin with “it’s an exhilarating day today in India’.

Battling with Isolation

(this was written some months back, on my 7th week in India

Cats and I are not friends, but the mosquitoes are my lifetime nemesis. Just when I thought I would have the most restful slumber since I arrived in India now that I have my own flat came this realization that in spite of the apartment being newly constructed, I am not its first occupant. Could it be that I moved here two days late of my original schedule the mosquitoes squatted here and decided they want to stay permanently?

I rushed to the nearest store to get a box of mosquito coils (25 pieces with 4 extra coils free). Never mind if I am contributing to the acceleration of global warming. After all the Indian government itself is not keen on reducing the country’s CO2 emission now or in the immediate future.

As I lay my back on my rickety bed that first Saturday night, an army of my archenemy started attacking me from all fronts. I had plugged in a mosquito repellant in my room but that didn’t work. Almost all night I alternately snoozed and swatted the mosquitoes. Until they became more than a nuisance that I resolved to stay awake and just watched them flit around till I drifted to sleep out of exhaustion. The morning after, I found several smudges of blood on my pillow. Apparently, I managed to retaliate in my sleep, but counted 26 bites in one arm and one leg. The number of course is conservative because I didn’t count the ones on my other leg and arm. Without a mirror in my house I didn’t become aware that I have bites in my face too until colleagues told me Monday morning.

Not far down from where I live is a river clinging to its last breath of oxygen to stay alive. It is home to life forms that don’t swim. Every time I pass there I no longer feign repugnance. The stagnant water gives off a repulsive stench that makes one’s stomach revolt. To nauseate is the next best thing to do. That’s where the mosquitoes are from I surmise.

Recognizing that I have to live with them for the next two years of my life I was better prepared on my second night. I shut all my windows and the lone door, sealed the hole in my kitchen wall (provision for exhaust fan) and lit a coil. I don’t know what those repellants are supposed to do, either kill those mosquitoes or drive them away out of my house. Whatever, they seemed to have worked this time. The army of mosquitoes that was there before was in short supply. But with all the air vents shut I then had to suffer from profuse heat.

But how could I fret about the more than 26 bites that dot my skin? What am I doing talking about this mosquitoes when some volunteers from my batch are still anxious about ever finding shelters they can call home for the next one or two years? At least I already have a home. Well, I have to have an excuse for the unexplained gloom I felt on the second night. I hate to admit but I think I have already entered that phase that most (or all?) volunteers go through at the early stage of service.

I became impatient when the day I had to move to my apartment came and I was still stuck in the hotel room for 2 nights more. Yet when I have settled, which I longed for, I was consumed with mixed of anticipation, isolation, helplessness. Albeit I only have the bare necessities, (a small coffee table with two chairs, a wobbly cot, a gas stove, a fan; the second-hand fridge will be shifted later), my flat now gives a semblance of permanence that elicited a hint of anxiety in me. Unlike when I was in a temporary accommodation, knowing I would leave soon I didn’t have to unpack all my stuff. It was like I could just flee anytime I wanted. I can’t now.

It seemed that that the decision I made 10 months ago was just beginning to sink in. That whoa, I’d live in an unfamiliar territory alone for twenty-four months! The volunteer nearest me is thousands of kilometers from here. It cannot be like the first month, when I was in Delhi, that whenever i experienced dismay for whatever reason the other volunteers were a just a room or two away.

But as I wrote this, it filtered deeper through my senses. Two years is a fleeting permanence. I might be in a place all so new to me, with mosquitoes that have the advantage of the terrain, but I am armed with commitment and determination. There’s no going back now. Time to forge new alliance with the people in the NGO I am now with. And when things become unbearable, I know the volunteers will send reinforcement one way or another. This is the choice I made, a new journey, a new sense of independence, a new battle in life… a new life. I am not allowing the mosquitoes or the sweltering heat defeat me.

Splat!!! another mosquito down. May it rest in peace.