Cover Story: Aids - Striking Home
India Today 15 March 1997
Farah Baria with Subhadra Menon, Subrata Nagchoudhury, Stephen David, Vijay MenonTragedy and ruin stare India's middle class in the face as the virus that causes AIDS moves beyond red-light areas and seedy highway dhabas. Yet, amid the suffering, people still find the strength to forgive, nurture and fight for their doomed families.
Now out of 10 AIDS patients is a housewife, an indication of just how alarming the spread is.
So Rajesh had been unfaithful. Funny. The doctor had just told her she was going to die, and all she could think of was her marriage. Who was it? An office colleague? The maid? A prostitute?
She got into a cab and mechanically gave the driver her address. Beyond the dusty window, Mumbai swirled by, colourful, kaleidoscopic, supremely indifferent. She looked at the crumpled paper in her hand; ordinary bond paper, covered with neat type. Yes, there they were, those three little letters. HIV+. It may as well have been a death warrant. "Rajesh is also positive," the doctor had informed her gently. "You must forgive him, Sunita. People make mistakes."Mistakes? Forgive? Had everyone gone mad? Now suddenly, things were falling into place. Her husband had been acting strangely of late: he was depressed, constantly badgered her to go for a check-up and insisted on wearing a condom.
"Don't be absurd, Rajesh. You know I can't get pregnant after my tubectomy," she had protested irritably. For a brilliant chartered accountant, he could be so stupid about some things! The taxi stopped. Numbly, she paid, nodded at the liftman, rang the doorbell. The tv was on. Rajesh rose from the sofa, took one look at her pale face, and sank down again. She opened her mouth to speak but, suddenly, it didn't matter anymore. Didn't matter who or what or why or how. All that mattered was her. husband was going to die; they were both going to die. Sunita Rao, MA, former high-school teacher and 33-year-old mother of two, was going to die of AIDS. And their two little sons would become orphans.
Photo: Fawzan Husain
"We thought AIDS didn't strike people people like us, " says Vasantrai Gandhi 71, a Mumbai based businessman. Two years ago, he and his wife watched helplessly as their son Jayesh, 39, died. Six months later, Pooja their 28-year old daughter-in-law also succumbed to AIDS.
Specialists are grappling with the national implications of Sunita's private hell, to come up with answers to combat the new threat that the Acquired Immune Deficiency Syndrome or AIDS cases pose in India. Experts are seeing clear indications that the killer that prowled red-light areas and seedy highway dhabas is now stalking bourgeois neighbourhoods and beginning to attack conservative households.
Officially, the figures don't speak of India's middle class becoming AIDS' newest victims as yet. The Government-funded National AIDS Control Organisation (NACO) reports that of the 2.9 million screened for the disease nationwide, 49,527 tested positive for the human immuno-deficiency virus (HIV). Of them, 3,161 had progressed to AIDS in which the virus cripples their immune systems and exposes them to life-threatening ailments like tuberculosis and cancer.
NACO figures are restricted to the so-called high-risk groups prostitutes, homosexuals, drug addicts, truck drivers and migrants. But based on prevalence rates and samples surveys, the Joint United Nations Programme on HIV AIDS, estimated last year that India has 3 million HIV-infected people, probably the largest number in the world. In comparison, South Africa has 1.8 million infected, Uganda 1.4 million and Nigeria 1.2 million, although the percentages of the population infected are much higher than India's.
Perhaps the most worrying aspect is the growing evidence in India of what HIV experts call "transmission chains", by which the virus percolates insidiously through social substrata and afflicts low-risk individuals like housewives and children. Suniti Solomon, director of the Y.R. Gaitonde Centre for AIDS Research and Education in Chennai, is currently treating two sons of a wealthy Chennai industrialist for AIDS. During a counselling session both admitted they had unprotected sex with "high class" call girls before and after marriage. Neither believed there was any risk involved so long as they kept away from the official red-light areas. "Now their wives are also infected," says Dr Solomon grimly. "And we have to break the news that one of their children is positive."
"Hetero sexual transmission makes up for two-thirds of cases in India." says Dr. S. Hira, Director, ARCON, Mumbai
Researchers say chains like these are striking at the very core of Indian society. "Infected housewives and children are a clear indication of just how much the AIDS virus has advanced in the country," says Dr Subhash Hira, director of the Mumbai-based AIDS Research and Control Centre (ARCON). He estimates that one out of 10 HIV-positive patients is a housewife.
Heterosexual transmission now accounts for over two-thirds of all HIV-positive cases in India. This is diametrically opposite to countries in the west where almost 70 per cent of the cases are infected through homosexual transmission. In India, promiscuity is the single most important way by which the epidemic spreads. One reason for its rapid dissemination is because the symptoms of AIDS takes an average five years to show up. So an infected person can pass the virus unknowingly to scores of people. This is unlike other sexually transmitted diseases like syphilis and gonorrhoea where the symptoms appear in the first few weeks or months of infection itself. Another reason: The middle class never really believed it was vulnerable to the insidious spread.
If they are it is because sexologists are reporting that the old concepts of middle-class morality are breaking down. A just released 11-year old study conducted by the Chennai-based dega Institute on the sexual mores of the middle and upper class is an indication of just how much has changed. Of the 16,154 persons surveyed, as many as 43 per cent of them admitted to having had premarital sex. Among those who had married, one out of five people said they had extramarital relations. That they didn't think such behaviour exposed them to the risk of sexually transmitted diseases such as AIDS came out when only two per cent of them admitted to using contraceptives such as condoms while having sex.
Experts find it hard to explain the dramatic shift in the sexual behaviour of the middle class. Changes in the workplace is cited as a major reason. Industrial growth has spawned a breed of travelling executives who spend nearly half their working lives away from home. At the same time, women have become an increasingly visible part of the professional workforce. Put these factors together and you have the settings for an increasing number of casual sexual relationships.
"I never dreamt it was so easy," recalls Sunder Malhotra, personnel manager at a foreign bank in Bangalore. Then last year he went to Delhi for an official engagement with Marisa Jacob, a junior colleague. "We completed our work, had a drink and dined together," he recalls. When she invited him to her room for a nightcap, Malhotra hesitated; he was married, said a voice at the back of his head, but he ignored it. After all, they were two consenting adults in a strange city no one would ever know.
They spent the next three nights in her hotel room. A month later, Marisa Jacob left to join another bank. "And I forgot my little affair." Until an uncle asked him to donate blood for his bypass surgery. When the blood bank pronounced him HIV-positive, Malhotra was furious. They offered to retest. The result was the same. Frantic, Malhotra went to another diagnostic centre. The reply was no different. While exchange of genital fluids during sexual intercourse is the most common cause of transmission, the rates can be as low as one for every 100 such episodes with infected persons. Too bad his brief dalliance with Marisa had been dead on target. Malhotra is now on anti-depressant drugs.
"Multiple sexual partners, now a sign of upward mobility, is a real danger." says Rajesh Parikh, psychiatrist
Mumbai psychiatrist Rajesh Parikh feels that the growing affluence of the middle class and Hollywood or for that matter Bollywood could have something to do with changing moral values. "I suppose the influence of the West is an inescapable factor," he says. "Unfortunately, we have borrowed the gloss but not the ability to react swiftly to a crisis."
While in the West, having multiple sexual partners is now considered "high-risk behaviour", in India it has just become fashionable, a symbol of liberation and upward mobility. The result: "Everyone wants to be James Bond," says Parikh. Women are shedding their inhibitions. And sexual expectations are running high. "I always thought my wedding night would be some kind of revelation," admits Thomas Daniel, a 42-year-old Chennai paper dealer. It turned out to be a disaster. His bride was shy, dull and unattractive. After their daughter was born, Miriam lost interest completely and her husband started checking out the city's "escort services". Now both are HIV-positive.
With premarital sex gaining increasing acceptance among the new generation, the incidence of sexually transmitted diseases including AIDS has risen. Teenagers and those in the early 20s now constitute a third of the cases testing HIV-positive. But therein lies the paradox. The question is: if students can get sex on campus, why would they opt for the sleaze bazaar? "Because it's easier," admits 19-year-old Amit Dhanak reluctantly. Transplanted from a boys' boarding school in Panchgani to St Xavier's College, Mumbai, at the awkward age of 16, Amit says "peer pressure made him desperate for sex." But he was too shy to make the first move. So when his friend Pritish suggested the brothels of Kamathipura, he agreed. They went only a couple of times, "but I hated the experience." Two years later Amit was diagnosed with tb. A mandatory AIDS test followed, and Amit's conservative Marwari family was told the worst.
Photo: Soumitra Ghosh
Teenagers and young men form a third of HIV cases, prostitutes being the main source of infection.
The dega institute study found that prostitutes topped the list of premarital sexual partners among men. For researchers these are danger signals because prostitutes are a major reservoir for the AIDS virus and, as Dr Hira points out, "the border between this original reservoir and the general population is quickly getting porous." If only someone had warned Nigel Fernandes. An mba from one of the iims saw him land a job with a foreign bank in Mumbai. He was given a flat with three other colleagues all male and more money than his father had earned after 20 years of government service. For Nigel, it was a heady taste of independence.
Last year, his roommate Rajan took him to an "exclusive" brothel downtown. "Time to lose your virginity," he grinned. Seema was about 40 and very kind. "Don't worry," she said when he admitted he had never worn a condom. "You're safe." The next week Nigel was back this time, alone. Soon he was a regular. Six months later, the young executive went home to Mangalore for a holiday. When he returned Seema had vanished. "The doctor said she had AIDS," the receptionist explained matter-of-factly. Nigel felt a knot in his stomach. An AIDS test confirmed what he feared.
While Nigel learnt of his plight accidentally, the real problem is that few go in for blood tests unless the symptoms begin to show. The virus can lie dormant in the body for anything between six month and over 10 years and then strike the immune system down. So in many cases people who are infected get married and pass on the virus to their wives and children unknowingly.
Jai Nair, a young hotelier in Delhi, now faces what doctors call a double whammy of guilt and sorrow. After he got married last year, he fell frequently ill and began to lose weight. His doctor had him tested for AIDS, among other things, and he was found to be positive. By then his wife was already three months pregnant. She has not tested positive yet, but their doctor believes it's too early to determine whether she has been infected or not. That's because while the elisa test for HIV and the more accurate Western Blot technique can detect the virus in your blood between six weeks to three months of being infected, the margin of error can be from 1 to 20 per cent. The tests have to be repeated at intervals. Nair thinks he knows where he picked up the virus. "I was in college then. It wasn't even a relationship, just some nights together. Later I was told the woman had been in this kind of thing before. So I'm sure that is where I got infected." Now Nair lives in constant dread of his wife and his unborn child testing positive. Of dying before his child's first birthday.
Photo: H K Rajshekar
Most HIV-positive people complain they face discrimination by doctors " My own family was worse," says psychologist K.K. Sathyamoorthy. When his sister got married, his family asked him to leave Chennai. Her engagement was once called off after word spread he was HIV - positive.
This imperceptible drama of passion and death is increasingly being played in many middle-class homes. In Delhi, Ritu Singh's husband, a former army colonel, is dying of AIDS. The signs are unmistakable: he can hardly walk and his face is covered with fungal infections. Ritu, 49, knows it is only a matter of time before she joins him. "I'm HIV-positive too, you see." When test reports arrived last year, the Singhs wound up their lives in Punjab and shifted to Delhi for treatment.
Is there anger in her? Amazingly, no. Ritu explains: "Initially when I was told that I was harbouring the virus, I was angry and went into a shock. I had always known about my husband's promiscuous habits, but then men don't listen to their wives' warnings, do they? What's the point in showing my anger now? He's sick, he needs support in every small thing he has to do. I can't send him packing, can I? Would you? It's too late for accusations."
Photo: Pramod Pushkarna
With surveys showing a dramatic increase in casual sex, the midde class now finds itself in high-risk category.
Her concerns lie elsewhere. "I have a daughter who's in college and a son who's working. I keep telling myself not to get worked up about the future. But, that's easier said than done. I know I'm living on borrowed time." Ritu gets tired easily, has lost weight, signs that the disease is progressing. She constantly worries about infecting her children. "If I cut my hand while cooking, will my kids get it? I keep everything as clean as possible, use a different towel and soap and take all possible precautions." Being sick scares her. And she asks pleadingly: "Is there hope for someone like me?" With a complete cure for AIDS still eluding researchers, doctors find it hard to dredge up any optimism for its victims. Every day these doomed people many of them married couples barely out of their teens, some frightened, others defiant, all struggling to come to terms with death visit hospitals in the hope of some cure. The numbers keep growing. At Mumbai's J.J. Hospital, Alka Deshpande, head of its contagious diseases department, tries to counsel them. But at the end of the day, she knows she's fighting a losing battle.
Last month, a surly young man who tested positive admitted that he was engaged. "We told him it was wrong to risk a girl's life, but he wouldn't listen," she says. "It's a hopeless task." Like many other doctors, Deshpande believes that for scores of young couples, an HIV test is probably more relevant than a marriage certificate. "But how many girls can demand to know their fiance's sexual background?" she asks. "And how many married women can force their husbands to have safe sex? Indian society is its own worst enemy."
"No one is safe. At the rate we are going even marriage is fast becoming a risk." Dr.S.Soloman, YR Gaitonde Center, Chennai
The corollary? " No one is really safe," emphasises Gaitonde Centre's Dr Solomon. Over the past few years she has treated dozens of infected lawyers, businessmen, teachers, psychologists, students and housewives, many from affluent families. Now she says:" At the rate we're going, marriage is becoming a risk."
It isn't an exaggerated claim. For Raghuram, 35, there were no warning signals. He was off to head a large company in the Gulf. Shanthi, his wife, was thrilled; after the grind up the corporate ladder, things were finally looking good. Then came the routine blood test. At first the suave Chennai executive refused to believe it. AIDS? How could he possibly have AIDS? He was a respectable, married man with two small children. Oh, there was the occasional fling with a female colleague, but he wasn't one of those who liked to pay for sex.
Then Shanthi tested positive and their carefully constructed world caved in. Raghuram's boss was politely regretful; he would have to find another job. "But no one wants to employ me." Now, he has only one consuming ambition: "I want to live until my children are old enough to take care of themselves."
There are many who find themselves in the same predicament as Raghuram. Yet few private clinics or public hospitals keep a record of HIV-positive cases, making comprehensive data collection virtually impossible. Worse still, the social stigma associated with the disease has ensured that it remains a silent killer, snuffing out its victims behind closed doors. The result: no one quite knows the extent to which AIDS has sneaked into our backyard.
It's only now that some proof of that is trickling in. In Mumbai, India's AIDS capital, a study undertaken by the state Department of Health reveals that in 1996, 2.7 per cent of random blood samples from pregnant women were found to be infected, up four times since 1992. In Bangalore, an AIDS research and control project, Samraksha, has 420 HIV-positive people on its register; 58 per cent of them are married and come from middle-class backgrounds.
Data from more upmarket institutions are just as worrying. In Chennai, the results of a survey by the Asia-Pacific Network of People with HIV (APN+) squarely focuses on educated casualties. Randomly picking 79 infected men and 46 infected women from private HIV clinics across the city, APN+ found that 64.8 per cent were graduates, 24.8 per cent post-graduates and 7.2 per cent PhDs.
The trail of destruction is now visible even in smaller metros. In Pune, the National AIDS Research Institute (NARI) reports that 14 per cent of the women who come to its clinics are housewives, a group that is growing at a distressing rate of 3.3 per cent every year. And in Ahmedabad, the Gujarat AIDS Awareness and Prevention Unit reports a 30 per cent increase in the number of middle-class patients attending its clinics. Says Dr Manoj Jain, professor at the University of Tennessee, Memphis, who has spent the past four years researching AIDS in India: "This sort of data is the strongest proof that the epidemic has progressed to low-risk individuals." He believes that in the coming years, we are going to see an unprecedented number of AIDS widows and orphans.
Photo: Fawzan Husain
"We live in perpetual nightmare." says Lata Batwa, a 25-year HIV-positive widow with three children. Her husband Sanjay, who worked in stockbroking firm, died of AIDS. Then her in-laws threw them out of the house. She now works as a saleswoman to support her children.
Are we equipped to deal with the HIV threat? Hardly, say doctors. Since the virus primarily attacks the immune system, patients are prone to several "opportunistic infections" including tb, diarrhoea, fever and skin disorders. They often occur simultaneously and require specialised treatment with mega doses of antivirals and antibiotics. These can actually be administered by any general practitioner, yet in India very few private hospitals are willing to treat AIDS. In most cities, government hospitals continue to be the patients' only hope but even these are poorly equipped to meet the challenge.
Fear and intimidation seem to be everywhere. In Chennai, 97.7 per cent of the infected people interviewed by apn+ said they had faced discrimination by doctors. Psychologist K.K. Sathiamoorthy, who is HIV-positive and apn's representative in India, has learnt to take their indifference in his stride. "My own family was worse," he says bluntly. At first Sathiamoorthy stoically bore the scorn, but when they stopped talking to him, he left to stay with a friend. A couple of months ago, he received a letter from his brother. Their sister was getting married, but this was not an invitation. "We want you to leave the city immediately," wrote his brother. "Come back only after the wedding." They were justified, of course. The last time his sister was engaged, word got around that Sathiamoorthy was HIV-positive. The engagement was called off soon after. Now his parents were not taking any chances. But they had forgotten one vital little detail: he had nowhere to go and no money to travel.
Social ostracism is distressingly common and often brutal. "We live in a perpetual nightmare," admits Lata Batwal softly. Frail, almost wraith-like, Lata is a 25-year-old widow with two small children. She is also HIV-positive; her husband Sunjay, who worked in a Mumbai stockbroking firm, died of AIDS a year ago. When the couple tested positive in 1994, Sunjay's parents were furious. "They blamed me for his illness and threw us out." The young woman gathered her brood and helped her sick husband down the stairs. They managed to find a small room in a chawl and Lata started selling disinfectants from door-to-door to pay her husband's medical bills. Now she is struggling to put away money for her daughter's dowry. "That way she won't be a burden on anyone once I am gone."
The worst part is that there is no one to turn to. "We deal with broken, lonely people," says Dr Prakash Bora, who runs an HIV information and guidance centre in suburban Mumbai, defeatedly. People consumed by guilt and haunted by fear. It is a private purgatory: confiding in your family can make you a pariah, confiding in colleagues may cost you your job, there are virtually no professional counsellors. And the end, when it comes, is ignoble.
Internationally, researchers are reporting breakthroughs in treatment. Tests on drugs that prevent the virus from replicating itself in the body called anti-reverse transcriptase in combination with chemicals that lower the resistance of the virus known as protease inhibitors are showing dramatic results. The only rider: these drugs are prohibitively expensive. In India, such therapy costs anywhere from Rs 15,000 to Rs 20,000 a month an amount that few can afford depending on which drugs are used.
At the Institute of Economic Growth (IEG) in Delhi, Indrani Gupta is studying how the AIDS virus is burning a hole in household budgets. Based on interviews with patients all over the country, she says an HIV-positive person spends an average of Rs 6,600 every month on consultation, diagnosis, medication, hospitalisation and transport; for people with full-blown AIDS, the tab could go up to Rs 35,000 a month. "For the average middle-class family in India, therefore, an HIV-positive patient is a major catastrophe," says Gupta. Especially since, in most cases, the main breadwinner is the patient himself.
In Mumbai, Leela Jayram is already feeling the pinch. Widowed and unemployed, this suburban housewife's domestic accounts are tightly balanced. Leela's 22-year-old son is dying of AIDS and the effort to keep him alive costs Rs 6,000 every month. Nikhil used to earn half that as a supervisor at a garment factory, but now he's too sick to work. So every week, Leela sells some of her jewellery to pay for his expensive high-protein diet, nutritional supplements and antiviral drugs. The tablets cost Rs 20 each. And every fortnight they fork out another Rs 400 for a taxi to an HIV clinic where a doctor monitors Nikhil's slow crawl to death.
India's health system, already overburdened with handling the so-called traditional diseases, is ill-equipped to cope with the scourge. Dr S.M. Channabasavanna, director, National Institute of Mental Health and Neurosciences (NIMHANS), Bangalore, believes that given the enormity of the crisis and India's unprepared health-care system, the disease cannot be treated at the hospital level. "Society will have to step in or get destroyed."
The battle will involve networking families, ngos, trained medical volunteers and perhaps even religious leaders, who can change attitudes and mobilise entire communities. But as Dr Radium Bhattacharya, director of the Gujarat AIDS Control Unit in Ahmedabad, says, the immediate family plays the most important role. "It is the patient's lifeline."
Photo: Soumitra Ghosh
The middle class is especially under peril because it cannot accept it is vulnerable
On a larger scale, the national campaign needs to shift gears from general awareness to what experts call "focused intervention". This entails targeting specific groups colleges, offices, factories, even social clubs and kitty parties and tailoring the campaign to point out how people could be vulnerable to AIDS. A good intervention programme is one which offers preventive counselling and tackles questions on safe sex.
But changing deeply ingrained convictions is difficult. Gupta believes the middle class is especially at risk because it cannot accept that it is vulnerable. Munira Khan realised it too late when her son admitted he had visited prostitutes and was HIV-positive. "Now I can't help thinking we're to blame," says Munira, wife of a Mumbai metal trader. "If a woman can't talk to her own husband about sex, how can parents educate their sons to live safely? We must overcome our inhibitions to protect our children."
Meanwhile, as more and more cases get identified, it is only a matter of time before this silent killer emerges from the shadows, overtaking old scourges like tb and malaria. "No other epidemic has so many social, cultural, human, ethical and developmental implications," warns Dr Dileep Mathai, a specialist at the Christian Medical College, Vellore. "AIDS is going to change our lives."
But every catastrophe throws up its heroes or, in these cases, usually heroines. "In our clinics ordinary housewives are showing the way," says Dr Bora. Betrayed by their husbands, often condemned by their in-laws for a crime they did not commit, they still find the strength to forgive, nurture and fight for their doomed families.
(Names of some patients have been changed to protect their privacy.)