- 357 tested HIV positive over a decade in the district
- Migrants from UP run a lethal risk in Mumbai
- India’s National AIDS Control’s funding has of late dried up
- Begins with fever, then rashes, severe diarrhoea and headaches, loss of appetite, blackening of skin
***
Lush farmland stretches as far as the eye can see. The sweltering sun, the monsoon humidity, the scent of earth. Fatehpur district—some 85 km from Kanpur, where the motorway shatters the peace—is a pastoral idyll set in the fertile Ganga-Yamuna doab. Lurking beneath the fetching facade, though, is an insidious epidemic: in the last 10 years, 357 people in the district have tested positive for HIV. Many more cases could have gone unnoticed or unreported. Bhitaura, on the northern side of the district, is among the 13 blocks the HIV cases have been reported from. In Udaisarai village, 52 people have died. Some families have been wiped out. On the walls someone has scrawled in paint: ‘Better Safe than Late!’ The victims are everywhere—in the thatched mud huts, in the rice paddies, near the decrepit mosque, even in the playground of the ochre-painted village school. It was last summer that a 42-year-old millet farmer found out he was infected with HIV. About 10 children too tested positive.
Grief fills the main dirt road running through the village. Fifteen minutes from sarpanch Dhanraj Lodhi’s house is a cluster of houses where three familes used to live—all wiped out by AIDS. “This is where Sachdev Yadav, his wife Sita, their two daughters and a son used to live,” says Vidya Devi, pointing to the mud house where her brother-in-law’s family used to live. “The doctor thought it was TB, it turned out to be AIDS. They all went one by one.”
Shiv Sharan, 30, Labourer, Bhitaura block
Shiv Sharan migrated to Mumbai in his teens to work as a tailor. He was making Rs 5,000 a month and would send part of it home. Lonely, he started frequenting brothels. With little awareness about protection, he contracted the disease in early 2010. “I used to get high fever, couldn’t walk or eat. The doctor said it was TB, but when medicines did not work. I came back to Fatehpur for treatment. Here, it was confirmed I have AIDS,” he recounts. He calmly tells us how a bottle of capsules keeps him going. Reports show his immunity levels are at an all-time low. His wife Savita tells us she too may be infected, perhaps the children too. But they don’t want to be tested.
Pitambar Singh speaks of the wretched end of the lives of his brother Chavan, sister-in-law Kusum and their two daughters and son. “They had periodic check-ups at the Fatehpur district hospital, then in Kanpur, Mumbai and Nagpur,” he says. “There was so much suffering in the end. We could hear them all wailing in the night.”
One common thread running through these tragedies is that many of the male members had migrated to Mumbai in search of jobs, leaving wives and children behind. Even so, village chiefs and government officials are bewildered by the sweep of cases, village after village, block after block. Sarpanch Dhanraj Lodhi stares in blank incomprehension. “We don’t know how many people are actually affected,” he says. “A health camp was held 15-20 days back. But people are scared. They don’t want to come out in the open and talk.”
Gyan Saroopa, an aanganwadi worker who has worked in the area for over 15 years, says at least 40 more cases would tumble out in certain clusters if residents agreed to testing. She says that a month ago, when a government team came to collect blood samples, the villagers ran away and hid in the forests. With the stigma attached to HIV-AIDS, people are unwilling to be tested, which only adds to the risk of it spreading.
Savitri Rai, 50, Housewife, Bhitaura
Savitri Rai is in her last stages of AIDS. Her body hides no secrets, her documents reveal what’s real. The blood test conducted in the village last week had listed her as one of two residents who were HIV-positive.
Strangely, she’s in complete denial. “I’m alright. With age, these problems occur,” she says. But the rashes on her body, the blackened skin, the high fever and severe diarrhoea are big giveaways. Savitri’s husband died of AIDS some years ago, and she probably fears social ostracism if she reveals this secret. In any case, in villages, where quacks increase the risk of infection from needles, Savitri could easily have been infected otherwise. Neighbours say her husband Sukdev was infected and he passed it on to her. He apparently used to come home only once in six months as he had another woman in the city.
The long night that is Bhitaura has swept other blocks in Fatehpur too, such as Haswa in the east, Malwa in the west, Asothar, Dhata and Vijayipur in the southeast, and Teliyani in the west of the district. Residents say it begins like a mild fever, then there are rashes, severe diarrhoea and headaches, loss of appetite, blackening of skin and overall decline in immunity levels.
It happened to Sitaram, his brother Ramlal and wife Shanti of Simor village in Bahua block, 32 km from Udaeesarai. Their thatched hut is bare; their possessions thrown away, a curse buried. But neighbours speak of the brothers contracting the disease from sex workers in Mumbai. “With money came huge temptation, and the brothers succumbed to that,” says Sheikh Ali. “The metros have become the curse of many households in our villages. But how else can we get away from the bleak existence here if not by going to Mumbai?”
In Fatehpur town, official records put those infected at 357 people. But there are grounds to believe the figure could be much higher. During a short visit, Outlook came across at least 20 cases in one village alone. Many families were unwilling to talk about HIV-AIDS. In some cases, neighbours offered details about some families.
The district authorities refuse to call it HIV-AIDS. “I don’t understand why this noise!” says Dr A.K. Singh, additional chief medical officer for Fatehpur. “There are no HIV-positive cases here. Only chronic TB is a health hazard.” And Dr P.L. Dasaria, officer of the District AIDS Control Society, says 510 TB patients were tested for HIV and only one was found HIV-positive. “There’s nothing alarming,” he says.
Sunil Pradhan, 40, Driver, Bahua block
Sunil Pradhan started working as a cab driver in Mumbai in 1993. He learnt that he had AIDS
in 2006. It was when his wife conceived that they were advised to go for a complete check-up. “We were both HIV-positive and have been on medicines since.” His wife Meenu says the medicines may keep them alive for some more years. In the village, it’s a stigma and neighbours stay away from them. “We are not worried about ourselves but for the children. We are afraid they may have got it from us,” she says. Her daughter Ruhi shows some symptoms but Sunil would like to believe the medicines will work and they’ll all get cured.
But not all doctors and AIDS awareness field workers share that view. Dr Atul Jaiswal, at the district hospital, is looking at 75 HIV-positive cases. The integrated counselling and testing centre that Dr Jaiswal runs is buzzing with patients. Nineteen-year-old Shabnam tells us she is going for the preliminary test only to eliminate the possibility of an infection. Doctors tell us she lost her first child to HIV infection and is again pregnant. Rajni, 26 years old and pregnant, was recently diagnosed with AIDS. She says she got it from her husband, who was infected at a blood donation camp in Saudi Arabia, where he works. She thinks her husband isn’t the type who could have got it from sex outside marriage. Jaiswal says the fearful hush surrounding HIV-AIDS deepens the extent of the crisis on the ground.
District magistrate Pushpa Singh agrees that AIDS is a problem in this region, but the government authorities can’t do anything without seeking the consent of the locals. “We’ll have to find a way to change their minds.” And it’s not only the men who are affected. Young women bear the greater burden, and so do the children. Neetu Yadav, a counsellor in the AIDS section of the district hospital, says that she gets about 10 queries a month. “Many women talk openly about their involvement with other men because their husbands are away in the cities for long periods. There’s very little awareness about using protection,” she says.
C.B. Singh, the general secretary of Saathii, an NGO, says people have little land, no work, few choices. “For survival, they go to the big cities and drift towards unsafe sex. AIDS is spreading like an epidemic in these parts,” he says. Rajendra Sahu, of the Nehru Yuva Sangathan, calls it a medical emergency. “The authorities need to wake up,” he says. “Because people won’t speak out openly as they fear ostracisation.”
While it’s true that HIV infection is no longer the death sentence it once was, villagers still tend to look on it as a condemnation. The mass infection in Fatehpur—and the prospect of similar pockets across the country—comes as international funds for India’s National AIDS Control Programme dry up, posing a serious threat of recurrence of new HIV cases. Donor organisations have reduced funding by a massive 90 per cent over the last three years. Some have scaled down operations in India or diverted funds to other countries. Even organisations like the UK’s Department for International Development, the Bill & Melinda Gates Foundation, the Clinton Health Access Initiative and World Vision have slashed funding to India’s programme against HIV-AIDS. Instead, many of these organisations have shifted focus to the management of other diseases (such as TB) and family planning. This has led to fears that India may again lose ground.
Ravi Kumar, 20, Labourer, Haswa block
Ravi Kumar’s father used to work at a laundry service in Mumbai. His mother was a housewife. Ravi’s mother died of AIDS in 2000, two months before her husband passed away, leaving the son alone. Ravi was diagnosed with AIDS in 2010. His body looks shrunken, his eyes vacant. “We got him checked in Kanpur, Lucknow and Allahabad. They’ve given him medicines, but the doctor says there’s little hope,” says his uncle Jairam. But Ravi wants to be like his cousins—independent and healthy. “It’s not my fault. I’m suffering for my parents’ mistake,” he says. The medicines he gets every month give some relief, but his eyes speak of a vacant future.
Dr Neeraj Dhingra, deputy director general, National AIDS Control Organisation, Delhi, says, “This is a mounting problem, and we must find ways to check the spread of AIDS.” There are ways to check it, even in places like Fatehpur, he says. It involves long-term action. People will have to be made aware of the need for proper check-ups to determine HIV status. If infected, they should be educated to regularly take medication even if they seem otherwise healthy.
There lies the problem: even in the US, it’s estimated that only 14 per cent of those infected with HIV know their status, for people are not inclined to having regular blood tests. The next big step is to find out if those who have tested positive go on treatment and take their drugs regularly.
Unprompted by any sign of their illness, their motivation could easily wane. So, in Fatehpur too, there are those living in the HIV closet, nameless and faceless. Most of the families reveal no records, no papers. The authorities are in a lull, the doctors in denial, families and neighbourhoods keep their secrets well hidden. It’s an easy march for the dreaded disease, therefore, infesting village after village.
(Names of some people in this report have been changed to protect privacy.)
By Priyadarshini Sen in Fatehpur; Photographs by Jitender Gupta
