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The road to ruin
By Jo Johnson
Published: August 12 2005 16:34 | Last updated: August 12 2005 16:34
Auntie Noorie, a middle-aged eunuch from the hijra transgender community of Chennai - the huge south Indian port-city - is in great demand. For the loneliest of India’s lonely hearts, there’s no better matchmaker. In a mid-life career shift, the 54-year-old former sex worker has reinvented herself as a specialist marriage-broker-cum-agony-aunt for the HIV-positive community. Twenty years ago, she became the third person to be diagnosed HIV-positive in India. In these two decades an epidemic of terrifying proportions has spread across the sub-continent, infecting more than five million Indians. With 500,000 new cases recorded a year, experts say that if India has not done so already, it will soon overtake South Africa as the country with the most HIV infections. And it will be in India, home to one-sixth of humanity, that the global fight against Aids will be won or lost.
Noorie nurses an HIV infant, whom she recently rescued from the filth of a local rubbish dump. As she does so, she welcomes a young couple into her Chennai office, the headquarters of the South India Positive Network, which she founded. Elizabeth, 27, contracted HIV from her first husband, a truck driver who died of Aids in January. “I felt lonely and I wanted help, so I went to Auntie,” she says. Noorie introduced her to K. Radhakrishnan, 32, a mechanical engineer whose own marriage plans fell apart in 1995 after he tested positive for HIV in Dubai. Immediately deported to India, he spent the next nine years keeping his condition a secret. In June, the two became the eighth couple to get married under Noorie’s auspices in a joyous ceremony held at her office. Elizabeth and Radhakrishnan, who are among the lucky few to have access to Indian-made anti-retroviral drugs, are now consulting a doctor about how to have an HIV-free baby.
”People come to me for counselling and tell me the saddest things,” says Noorie. “They have been thrown out of their families and are helpless, fearing death, depression and stigma. Marriage helps them avoid all that. They say, ‘Madam, help me!’ so I try to find them a partner.” No one could look happier than Elizabeth, dressed in a brilliantly embroidered red and gold sari, smiling ear to ear. “I am looking forward to starting my new life,” she says. “It was difficult when I learnt that I had the disease, and losing my husband was equally hard. But being HIV-positive does not mean we are not entitled to desires. We also have dreams and aspirations.” Radhakrishnan, now a social worker and president of the Kancheepuram District Network of Positive People, is just as defiant. “Don’t HIV people have a right to marriage? You tell me why HIV-positive people shouldn’t marry.”
A few miles away, 33 children, ranging from nameless infants to a 19-year-old rescued from the brothel into which her grandmother had sold her, occupy a deliberately unmarked house in Valasaravakam, a suburb of west Chennai. Eighteen are infected with the virus, while another five are thought to be but will need to be retested when they are 18 months old in case residual maternal antibodies are giving a false positive result. The rest of the children’s parents have died of Aids, but they do not themselves carry the infection. According to Dr P. Manorama, founder of the Community Health Education Society (CHES), 80 per cent of the 200 children she has looked after since 1994 have been abandoned by orphanages that want nothing to do with the victims of HIV/Aids.
”Most orphanages are catering for the adoption market and they subject their children for testing because no one wants a child with HIV,” says Manorama. “We found we were becoming a burial ground, a dumping ground.” Evicted twice in the past, she has not told the landlord or neighbours about the nature of her work, in a telling illustration of the stigma facing the most helpless of all HIV/Aids victims. Gradually, however, CHES has reopened links with the community. “We made contact with their families. Relatives came and visited, saw we were not wearing gloves and were handling the children naturally, and realised that communal living is possible.” The results have been remarkable, with 63 orphans now reintegrated into their extended families since the start of the programme and about 20 adopted or given to foster parents. “The others have died,” she says.
A report for the US Central Intelligence Agency by the National Intelligence Council, a think tank, forecasts that 25 million people could become infected in India over the next five years. HIV has already spread to the general population in several states. The National Aids Control Organisation (NACO), a government agency, has identified six “high-prevalence” states, where infection rates among high-risk groups exceed five per cent and one per cent among pregnant women. Of these, four are contiguous southern states - Tamil Nadu, Maharashtra, Karnataka and Andhra Pradesh - where the epidemic has been driven by sex workers such as those in Mumbai, where 44 per cent of female prostitutes carry HIV. In Manipur and Nagaland, by the north-east border with Burma, it has principally spread through drug use.
”India is at a tipping point in this epidemic and it’s time to mount the largest prevention programme the world has ever seen,” says Ashok Alexander, director of the Bill Melinda Gates Foundation’s Avahan project, which is the single largest donor to India’s fight against Aids. The Gates Foundation’s annual $40m budget compares with $32m lent by the World Bank to NACO, $20m provided by the Global Fund To Fight Aids, Tuberculosis and Malaria, and a meagre $7m from the Indian government itself. “Unfortunately, the tipping point has already happened in a number of places where the prevalence rate is above 2 per cent. In about 24 districts you can see a clear corridor where the transmission is happening.”
Dr S.Y. Quraishi, a former television executive drafted in to run NACO, is leading India’s battle against HIV/Aids. He says the more that people such as Noorie and Manorama can help reduce the stigma of HIV by showing that infected people can live normal, long and happy lives, the better India’s chances of controlling the spread of the disease. The stigma of HIV/Aids, at every level of society, is a serious barrier to effective prevention and treatment. It breeds fear among the infected, and keeps HIV/Aids undercover where it can spread unchecked. “It requires guts to come forward and get tested,” he said at a recent conference in New Delhi. “If you turn out to be positive, you are ostracised. As a result, there’s gross underreporting. For every one person that comes forward, four do not. Stigma drives people underground and if they’re not treated properly, they take revenge and go into the street and infect other people.”
Compared to some countries in southern Africa, where HIV rates run as high as 20-30 per cent, India, with an estimated rate of 0.91 per cent of the adult population, might seem on top of the epidemic. But any complacency is misplaced for two reasons: first, the sheer size of the population, at more than 1.03 billion, means that for every percentage point added to the adult infection rate another 5m people are thrown on to the resources of an already overburdened health system; and second, there is no reason to believe that the several dozen localised Indian HIV epidemics in various parts of the country will not mesh and contribute to a terrifying steepening of the infection curve, exactly as happened in South Africa in 1991 when its rate of about one per cent skyrocketed into the 20s in the space of a decade.
HIV/Aids statistics are fraught with difficulty the world over, but they are especially controversial in India. Data are patchy and politicised. Some states such as Bihar, the poorest in the country, offer none at all. Because an estimated 80 per cent of HIV/Aids carriers never get tested and few of those who do then report the result, India is forced to derive its official rate by extrapolating the results at just 670 sentinel sites across the vast subcontinent. These estimates need to be interpreted with caution. The data for new infections estimated for a single year, for example, are a far-from-perfect guide to the trend of an epidemic, as a test itself may come many years after an infection occurred. An increase in diagnoses might mean that HIV testing has become more easily available than in preceding years, or that the stigma associated with HIV has declined, encouraging more to get tested.
Richard Feachem, executive director of the Global Fund To Fight Aids, Tuberculosis and Malaria, has fuelled another statistical argument. Feachem enraged the Indian government by stating earlier this year that India had probably already surpassed South Africa in having the largest number of HIV/Aids sufferers. Referring to UNAids’ latest official figures, he said that although South Africa had 5.3m people with the infection against India’s 5.1m, the massive range of the estimate in the latter - 2.2m-7.6m cases among adults and children compared with 4.5m-6.2m in South Africa - left “many unknowns about the state of the pandemic”. He also admonished the Indian government for “not doing enough” to curtail the pandemic’s growth. NACO, which denies that India has overtaken South Africa, said Feachem’s comments were “loose” and “unproductive”.
continues to India: The road to ruin (2/2) - Financial Times