POSITIVE LIVES: The Story of Ashok and Others with HIV by Kalpana Jain. Penguin Books, Delhi, 2002.
Ashok smiles as he looks back at his life again. The groups, positive peoples’ networks, will grow for some time to come. They are the only hope. They have achieved quite a bit so far. They were being consulted by governments, they were managing to reach out more and more. So what if they haven’t yet been able to draw any celebrity into announcing his/her status. Ashok knows that this is the world he will come into as his soul leaves its present shell. He has always believed in the teachings of the Gita, and feels his soul will move on from this body to another one. That he will be born again, into a new world where HIV will be better understood by young people. And he won’t make the same mistakes again.
Ashok Pillai, the hero in Kalpana Jain’s book, Positive Lives, is no more. He succumbed to AIDS just a couple of months after Jain’s book was released. He lived a rich and full life, known to his friends as funny, boisterous and always the diehard optimist. Just 32 when he died, Ashok lived for thirteen years after being diagnosed HIV positive. He made a tough and challenging transition in this span – from being a radio operator with the Indian Navy to building up and strengthening the Indian network for people living with HIV/AIDS – with inimitable style. His work created tremendous impact on the lives of many Indians trying to live with a disease that currently has no cure.
Ashok’s short life personifies the spirit of Jain’s book – that HIV/AIDS could be ‘as much about living as it is about dying.’ She explains in the author’s note: ‘Countless young men and women, over the years, have learnt to conquer their fears of HIV, even as scientists desperately search for a cure to this fatal infection. These young people are bringing about changes in society in certain places by forming collectives such as widows’ groups. Such groups, unheard of sometime back, help in strengthening the morale of their members as well as that of others with HIV, in the face of their present hopelessness. This book is about such people and their struggles.’
Jain lives up to her promise, right till the postscript of the book. Positive Lives may well be a first-of-its kind book because it allows the reader a close look – deeply disturbing, mostly – at the lives of people who have been infected by HIV. It is a multitude of images of people struggling with the terminal conditions of full-blown AIDS, trying to make sense of a life suddenly fraught with stigma and discrimination simply because of their infected status.
The human vignettes are what accord Positive Lives its distinction. The facts and figures are all there, but always secondary to the narrative of what real people have gone through fighting a disease. This style ensures that while Jain’s book does educate about HIV/AIDS in India, it does so simply and unobtrusively – the magnitude and dimensions of the epidemic, the challenge of government policy, statistics and actual action (or the lack of it) to stem the epidemic. Jain is plainly critical of the Indian government’s HIV sentinel surveillance system. During her travels across India, the author found that in the city of Patna last year, only 46 blood samples were collected, whereas a minimum of 400 samples are needed to estimate the prevalence of HIV in women visiting antenatal clinics. ‘It is not that clinics in hospitals all over the state fail to get pregnant women for antenatal checkups. Bihar has one of the highest birth rates in the country. The sheer inefficiency and lethargy that characterises Bihar could partly explain the negligible figures.’
Analysing the many hurdles that come in the way of making life easier for people living with HIV in India, the book goes on to discuss in detail the emergence and current status of positive peoples’ networks in the country and what they are trying to achieve. ‘This is the new mood around AIDS: collective action and strength. Positive peoples’ groups that have emerged over the past five years or so, have provided those infected with the virus an admirable example of endurance, and how to cope with societal attitudes.’ There is of course, a disclaimer – robust networks have not necessarily translated into a reduction in the stigma attached to the disease. Jain found that although awareness has grown, the discrimination is still there and many members of these networks still do not feel prepared to disclose their identities publicly.
Writing this book has been what Jain describes as a ‘completely overwhelming’ experience. She was particularly moved by her experience of meeting a young boy in Maharashtra. ‘In the male ward at Bel Air hospital, where patients in various stages of HIV are lying on rows of beds on either side, is twelve-year old Gajanand. He has been admitted with a rash all over his body. There is no children’s ward here. But in the most unlikely of places, Gajanand has suddenly found happiness. He lost both his parents to HIV four years ago, and was separated from his only sibling. His elder brother was taken away by his father’s parents as he was healthy; he was left behind with his grandmother.
‘Gajanand, a frail boy, with a sensitive face, has been battling not just his illnesses as a result of a progressing HIV, but also ridicule for quite some time. His classmates poke fun at him. Not because they know that he has HIV, but as they perceive him to be a weak, sick orphan. His deep, black, expressive, almond-shaped eyes glistened with tears as he talked about his school and said slowly, ‘I like school. I like learning Marathi. But I don’t want to go there any more. I don’t know why I fall ill so much. But when I do, they all say such bad things to me.’
Gajanand affected Jain deeply, perhaps because seeing a child suffering is always so much more difficult. Travelling over 15,000 kilometres across India over a period of four months as part of her research for the book, Jain says: ‘Those images will never ever go away, however much one tries to distance oneself from the experience.’ Researching and writing this book, she says, revealed to her how difficult it is to work in the area of HIV/AIDS. ‘Everyone looks at you with so much doubt, since so much funding goes into HIV/AIDS.’ For her, the real challenge has been building bonds and to still not betray the trust placed in her by affected people.
This is a powerful book, and written in a simple, yet compelling style. Small, editorial glitches are there though. For instance, the district of Namakkal is referred to a number of times before it is actually described as a ‘sleepy district’ towards the northern part of Tamil Nadu. But somehow, the glitches seem really minuscule against the scale of emotion reflected in the narrative that moves, even causes considerable anguish. Jain, who went for Ashok’s funeral, explains how terrible it is to see fear on the faces of other positive people, and wonders why they must ‘live and die such lonely people.’
Positive Lives might make you want to cry, but it may even make you laugh. Laugh because almost two decades into India’s first brush with HIV, lack of awareness about the infection and the disease is still so widespread, leading to high levels of discrimination against affected communities, and a tangible insensitivity in peoples’ responses to the many problems these communities face. As Ashok Pillai had hoped, there may come a time when this will change, but not before nations work hard to bring about this change. But just as Positive Lives is only about people and people, change will also be wrought only by people. Jain, very effectively, brings home this message – of charting new paths out of pain and anguish and suffering. That is perhaps the spirit of the networks of positive people, forging ahead for a new dawn not for oneself, but for millions of others, unknown, unseen, unheard.
SHOTS IN THE DARK: The Way ward Search for an AIDS Vaccine by Jon Cohen. Norton, 2001.
Jhalajit Laitonjam, a craftsman from Manipur, discovered he was HIV positive in 1993. He chose not to tell anyone, not to deal with it at all. Two years later, he married. ‘I was in complete denial,’ he says. ‘Not only did I marry, I also had a son.’ It was only in 1999, when his three year old boy became seriously sick that Laitonjam returned to the doctors. Sure enough, both his wife and child had been infected. The family had no money to fund drugs for all three. It was decided that Laitonjam, the primary earner and also the most sick, should start on the triple drug therapy.
Laitonjam’s wife, Jaiwait, then took charge of the crisis. The barely educated, energetic, sparrowlike village woman demanded information that would keep her child alive. ‘They told me, boiled water, fresh vegetables and enough protein,’ she says. ‘And that is what I have been doing. My son is still going to school.’ The couple went back to the doctor to figure out how to have a healthy baby. Under the doctor’s care, they ensured that the foetus was given a preventive drug. Their two-year-old daughter does not have HIV. But both parents know they don’t have long to live. But Laitonjam grins and hugs his baby. ‘Why worry so much? This is a manageable disease. Not like cancer or something.’
The only thing the couple wants desperately is to ensure a safe future for their daughter. Their son, already HIV positive, will not survive. But the curly haired, plump little girl will grow up, she will go to college and she will have boyfriends, a husband. Yet no one in Manipur feels safe any more. The chances of her falling in with heroin addicts and sharing an infected needle, or more likely coming in sexual contact with someone with the virus is very, very high. Officially, at least 10% of the population is infected with the AIDS virus, though attending doctors say that actually the rate of spread is much higher. What Manipuris want is a vaccine to prevent the deadly disease from afflicting their healthy children. ‘I wish someone was doing something for us,’ one man grumbled, his cheeks sunken with disease. ‘I look at my children and all I want to do is lock them away so nothing can touch them. Nothing is safe any more and no one wants to make it all right.’
Shots in the Dark, a 440 page account of the hunt for a vaccine against HIV, written by science and medicine journalist Jon Cohen, would tell him that people have at least tried. Yet, as Cohen documents, most of these efforts have remained just what he suggests: shots in the dark that have, by and large, misfired. But a vaccine is really the only safeguard against disease, especially one as virulent as HIV, which is already threatening to kill one per cent of the world’s population. The hunt is still on, but after years of expensive and failed serums, it has finally become a more global effort. Several wealthy philanthropists have contributed, as have regular people who put in their dollars and rupees into charity shows and donor boxes to help the victims of the disease.
Talk of a vaccine first started in 1984 soon after the American political leadership had stopped sneering about the ‘gay plague’ and woken up to the disaster. But when Cohen published the book in 2001, nothing substantial had been gained because the process has too often been grounded by false starts, ugly competition and hopeless results. He ends his book with a plea for the world to pay more attention, to work together to put an end to the commercial, ethical or political problems that have led to the strangling of medical research. ‘This prescription for the AIDS vaccine search, which builds off the ideas of many others, may well not lead to the day where I write the sentence that says the world has realised its hopes and found an effective vaccine against HIV,’ he writes. ‘But the world at least could declare that it did everything in its collective power to develop an AIDS vaccine as quickly as possible, which is not something it can now say.’
The solution is simple, but one that has until now proved impossible to achieve. What is needed is a vaccine that helps the body to fight off HIV when it enters the body. It is these, simple concoctions that even now baffle scientists with their effectiveness, that have saved millions and millions of lives. There are vaccines against small pox, polio, now, even some strains of hepatitis. And yet a similar poison that destroys HIV, a virus that is infecting 15000 new people in the world every day, has proved as elusive as a cure for cancer. What we have are modes of partially preventing HIV infection – clean blood, disposable needles, condoms – but no way of stopping the disease.
What the book documents, however, is something that the world has almost always ignored. The contribution of individuals in the tortuous quest for a preventive vaccine. People love to celebrate pop stars and movie actors – even today, you need them to promote better understanding and acceptance of AIDS patients. But hardly anyone knows the names of scientists like Robert Gallo, Jonas Salk, Luc Montagnier, Laurence Lasky, James Stot, Dani Bolognesi, David Ho, Daniel Zagury, scores of others and their unnamed co-workers who all contributed – sometimes with spectacular failure – to work on the magic potion. That is why Cohen’s book is so important. It not only documents the work of individuals, a crucial task by itself, but because of the author’s long association with the subject, the book also tells the world how greed, callousness or ambition can come in the way of public welfare.
Clearly, what is needed is scientific cooperation in the spirit of public service, which does not get mired in conflicting political and business ambitions. Cohen also says that people have to take risks, not wait for the perfect drug, and points out that the dangers from an experimental vaccine would be accepted if there was a culture of truth and information sharing. Although every large pharmaceutical company knows that an AIDS vaccine is worth millions in revenue, as years of research failed to bring results, they began to drop out of the race. Once it had become apparent that primates were not a perfect option to test vaccines, to ensure they were effective, human trials were crucial. That naturally threw up fear of litigation. The delay, say scientists, has led to more and more people becoming infected. A vaccine that is even somewhat effective could have saved some of those lives.
Of course, AIDS has an added reason for being ignored. If people practice safe sex and are not drug abusers, they are unlikely to be infected. That is often an argument offered by health officials as well. In India, when the horror of HIV first came up for discussion in the early nineties, bureaucrats were unsympathetic. While some scoffed at a disease brought on by ‘perverted sex’, others said that they had limited budgets and would much rather use it to fight malaria, TB, polio, diseases that afflict innocents and cannot be prevented by simple lifestyle choices. But actually, the HIV virus is racing through the poor, ill-informed swathes of the world where wives cannot insist on condoms, where children are infected while still in the womb, where nervous boys learn to cope with their sexuality for the first time. Each one of these encounters can perpetuate the deadly virus.
There is now a global effort to test vaccines. Several developing countries have allowed independent agencies like International AIDS Vaccine Initiative to encourage collaboration on vaccine trials. Since the disease has spread so rapidly through the developing world, IAVI has even come up with a credible market option, promising returns to research agencies by locking up those markets. IAVI is now sponsoring ethical and informed trials on humans.
Yet, some of Cohen’s questions still remain in the air. Will children be tested? How to prevent coercion in an illiterate country where people seldom find a voice? What happens to volunteers who are infected despite the vaccine? What if a vaccine is too risky? All these problems will have to surpassed if a preventive cure is to be found, and the effort has begun. One drug ensured that Jhalajit Laitonjam’s little girl was born without HIV. Ultimately only a foolproof vaccine can ensure that she will grow up safe from the killer disease.