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)