(Reporting on this article was one of the most emotional experiences of my career. I met many, many sex workers, drug addicts, activists, truck drivers and housewives who had never heard the word AIDS before they were told they were dying from it. As someone born and raised in India, I found the many individual stories heartbreaking, and the denial of the officials deeply sad and scary. This article appeared in Nature in July 2005 as part of a special package on Indian science called Nature Outlook: India. A couple of years after the article appeared, the Indian government revised its numbers drastically downward. I’m deeply skeptical of its estimates, but haven’t yet been able to dig into the truth. You can download a pdf of this article.)
Our son was born in June 1998. He was healthy but after eight months, he had diarrhoea and fever all the time. He was in the hospital many times. The sixth time, they diagnosed him with AIDS. That was when we found out that my wife and I have HIV. Our son died 12 July 2002. I also started to get sick. I didn’t take my medicines regularly; they didn’t tell me not to do that. Now my health has become worse. I haven’t worked in six months.We’ll be paupers. I don’t know what we’re going to do.
— Suresh, air-conditioning technician
Suresh is sitting in a small, dark room at an AIDS clinic in the southern Indian city of Chennai. This city is where the first cases of HIV in India were discovered in 1986 after a police sweep of sex workers. Nearly 20 years later, there are an estimated 5.1 million cases in India, a number second only to that in South Africa. The difference is that in India the epidemic has not yet peaked. According to the CIA, the number of cases in India could top 20 million by 2010.
The people hit by AIDS in India are not the ones you would expect. About 86% of cases are a result of sexual transmission, most of it heterosexual. Intravenous drug use accounts for only 2.4% of infections, except in Nagaland and Manipur, two states where HIV infection is highly prevalent. The earliest cases appeared in high-risk groups: among the country’s 3 million sex workers or the 5 million truckers who haul the virus up and down the highways. But increasingly, the people who are flooding hospitals are men like Suresh, and their wives and children.
Like many Indian men, Suresh visited sex workers before he got married. He is in his thirties, but looks at least 20 years older. He is thin, with large sores on his lips. His wife Sumithra Devi was once near death, with a T-cell count of 40; a person is said to have AIDS once their T-cell count drops below 200. Afraid to tell anyone they have AIDS — their family believes their son died of tuberculosis — they travel nine hours from Kancheepuram to Chennai to visit YRG Care, a non-profit clinic.
The clinic enrolled Sumithra first in a clinical trial and then in a Global Fund to Fight AIDS, Malaria and Tuberculosis programme that provides antiretroviral drugs. She looks healthy now, and her T-cell count has shot up to 1,000. But Suresh, who is resistant to the drugs that the programmes provide, is desperate for newer treatments — and the money to buy them. “It’s too late for me,” he says.
AIDS is a big problem in India but we have been able to keep it in place so that it doesn’t become a bigger problem. We are not going the South Africa way.
— Nirmal Kumar Ganguly, director-general, Indian Council of Medical Research
In May this year, the Indian government announced that during 2004, there were just 28,000 new cases of HIV infection, down 95% from the previous year — proof, it said, that its strategies are working. But even in the United States there are an estimated 40,000 new cases each year, says Kevin Frost, director of TREAT Asia, a network of HIV/AIDS clinics and institutions. “So do you believe that Indian number?” he asks. “Of course not, that would be ridiculous.” S. Y. Quraishi, director-general of the National AIDS Control Organization (NACO) says that the figures were collected in exactly the same way as the previous year. “Tell me, what can we do? This is the best possible estimate,” he says.
Compared with South Africa, where the prevalence of HIV is 21.5%, India’s prevalence is just 0.91%, Quraishi notes. That is less than the 1% generally considered to be the tipping point, beyond which the epidemic will escalate out of control. It took just seven years for South Africa’s prevalence to rise from 1% to 20%. “Considering that our prevalence has been kept to less than 1%, that shows that our strategies have been on the right track,” Quraishi says. “It’s not by sleeping that we’re not South Africa. Obviously we did something.”
But the statistics are sobering (see graphic). Six states in India already have a prevalence greater than 1%, and in 2004 the number of high-prevalence districts jumped from 49 to 116. Even in the low-prevalence or ‘highly vulnerable’ states, as they are now dubbed, there are pockets where more than 4% of adults are infected. “The epidemic is progressing to the tipping point, there’s no doubt about that,” says Ashok Alexander, director of Avahan, the Bill & Melinda Gates Foundation’s AIDS initiative in India.
Some experts say that the new administration, which in April 2004 replaced the previous right-leaning government, could yet turn things around. NACO’s strategy is to reach high-risk groups — particularly sex workers and truck drivers — and scale up programmes that have proved successful. Over the next five years, it plans to expand its 670 voluntary testing sites to 24,000 and increase the number of people on antiretroviral therapy from an estimated 8,000 to 188,000 (see ‘Seeking care’).
But in the world’s most populous democracy, good intentions don’t go very far. Despite doubling its AIDS budget since 2003–04, India still only spends about 29 US cents per person on AIDS. In contrast, Uganda, credited with curbing its AIDS crisis, dedicates US$1.85 per person. Already, India accounts for more than 13% of the world’s AIDS burden but with its prevalence so close to the tipping point, the stakes are high. “Overall,” says Frost, “the Indian government’s response has been pathetic and not what it needs to be for an epidemic of this size.”
I saw people with AIDS die. That’s when I started getting scared. I have been teaching other sex workers about AIDS, telling them to use condoms. Now clients also want to put on condoms. They are available at medical shops. But I know where to get them for free.
— Padma, sex worker
In Mumbai, the bustling metropolis on India’s west coast, there are nearly 100,000 sex workers. Volunteers from non-governmental organizations (NGOs) walk through the streets of Kamathipura, the red-light district, handing out condoms and leaflets.
But in the southern states, where prevalence is highest, there are no red-light districts to canvass (see ‘The epicentre’). Instead, sex workers — many of whom are married women — work out of their homes, hotels or on the highways, earning themselves the nickname ‘highway queens’. Some towns, such as Peddapuram and Amalapuram in the state of Andhra Pradesh, are “like one big red-light district”, says Ashok Babu, a programme manager for the AIDS Prevention and Control Project in the neighbouring state of Tamil Nadu. “For US$230, you can stay there for one month and be treated like a mappillai,” he says, meaning a son-in-law, who is treated like a prince by the girl’s family. In Andhra Pradesh, HIV prevalence jumped from 1.25% in 2003 to 2.25% in 2004.
Experience has shown that the best way to reach these unconventional sex workers is through their peers. At the Community Health Education Society, an NGO in Chennai, ‘peer educators’ such as Padma explain to the women how to use a condom, the difference between HIV and AIDS, and why they are more at risk of getting infected. But the message is cleverly delivered through games, songs or as a cost–benefit analysis of, for instance, the amount of money squandered on abortions and treatments for sexually transmitted diseases. “When you talk to them just about AIDS, they get bored,” says Pinagapany Manorama, a physician who runs the NGO.
In some ways, sex workers are now better informed, and more empowered, than housewives. In much of India, arranged marriages are still common, notes Rochelle D’Souza Yepthomi, information officer at YRG Care. Half of Indian women marry by the age of 18, when most are still virgins, and the majority remain faithful. “Their only risk is their husband. It’s scary,” she says.
My brother died of AIDS. When he was sick, the doctors kept telling him he had tuberculosis. When they said he had AIDS, they didn’t explain. They said there was no treatment, that he would die. We took him back to the village. Nobody there knew anything about AIDS. I found out about it in the city. I told him not to sleep with his wife, to not eat from the same plate. I didn’t see that anywhere, that you can’t eat from the same plate. He died one and half years ago. There were 1,400 people at the funeral, he was that kind of man.
— Mohan Singh, tourist-car driver
In the past year, two movies from Bollywood, India’s prolific film industry, have revolved around HIV and AIDS, and the popular television show Indian Idol featured an AIDS- related song. Film and cricket stars have been featured in adverts sponsored by the Heroes Project, an AIDS awareness scheme, launched last year by the actor Richard Gere. Since November 2003, the non-profit organization Population Services International has also run a series of adverts, on television and bill- boards, featuring the fictitious character Balbir Pasha in Mumbai and Pulli Raja in Chennai. But in a country where more than 70% of the population lives in villages, the reach of the adverts is limited.
There are 638,000 villages in India, many of them with bad roads, no running water and no medical care. The best estimates are that 59% of those infected with HIV live in rural areas, but because there is limited surveillance there, the real number is likely to be higher. Compounded by ignorance and illiteracy, myriad myths about AIDS have taken root: that eating chicken and brinjal (aubergine) is harmful, for example, or that the virus can be transmitted by mosquito bites.
Some largely rural states such as Uttar Pradesh and Bihar have all the ingredients for a massive epidemic — illiteracy, poverty, migrant labour and sex traffic — but have so far received little attention either from the government or from donor agencies. The model of success for those states is perhaps Tamil Nadu, where the epidemic spawned dozens of NGOs that conduct education programmes and provide counselling and support. As a result, it is the only state where prevalence has dropped — from 1.13% in 2001 to 0.63% at the last count.
Before marriage I used to go to those women. Now I don’t. I just drink and go to sleep. I know I shouldn’t go to women, that’s all I know. My conscience tells me I’m healthy. I can’t have any such thing as AIDS.
— Sekar, truck driver
It’s 10 p.m. on a warm night in February at a truck stop on National Highway 45, about 45 kilometres outside Chennai. Every day, more than 300 trucks stop here on their way south. At this hour, there are about 20 trucks parked, and drivers are eating dinner and preparing to sleep. At one end of the truck stop is a tent, plastered with AIDS posters, where some are watching an AIDS-themed show. In front, Anthony Selvaraj uses a penis model to show a driver how to use a condom, then convinces the man to visit the makeshift clinic next to the tent.
“The word HIV we keep quiet. If you start with HIV, they’ll run away,” Selvaraj explains. “That’s my last chance to talk to him so I should prepare to interact with him in such a way that he remembers.”
These truckers go home only once every few months. On the road, they have multiple sexual partners and often abuse drugs and alcohol. Many believe that if they don’t have sex they will build up garmi, a Hindi word meaning heat, and will go blind.
In recent years, they’ve become accustomed to being chased by volunteers with flipcharts and penis models in their pockets. Selvaraj works with the HOPE Foundation, which has counsellors and doctors at several stops along a 60-km stretch on the highway. But the message has not entirely got through. Believing that AIDS can only be transmitted by women, many truckers now have sex with ‘cleaners’, the young boys who travel with them. Homosexuality is illegal in India, so the government’s campaigns mostly neglect men who have sex with men.
These truckers have ample access to condoms, but many use the condoms to plug pipes in the trucks. According to a report by India’s comptroller and auditor-general, 75% of the 1.5 billion condoms made each year are used as sealants for leaky roofs, as lubricants in weaving gold-embroidered saris, or are mixed with concrete and tar to pave roads.
“We’re going for 100% condom promotion,” says health minister Anbumani Ramadoss. “Our job is giving them awareness. After that, if they don’t use it, what can we do?”