AIDS in India a Culture Shock (New Scientist, 25 January)

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New Scientist vol 177 issue 2379 - 25 January 2003, page 42

Culture shock

A growing HIV epidemic is forcing India to face some uncomfortable

truths about its society, says Anil Ananthaswamy

On the first floor of a crowded government hospital in Pune, India,

several young pregnant wives wait, quiet and fearful. They are

standing outside an HIV counselling centre. Inside, behind green

hospital screens, counsellors comfort sobbing women who have just

learned what it means to be infected by HIV - for them and their

unborn babies.

These women had visions of a happy, married life. Instead, they have

been handed a death sentence. It's a scenario that is beginning to

play out all over India. Ironically, marriage - not promiscuity -

puts Indian women at the greatest risk of contracting HIV. " It's a

very bold statement, " says Vinay Kulkarni, an HIV/AIDS specialist in

Pune. " But unfortunately, it's true. "

Kulkarni and others estimate that in the next 4 years more than a

million women in India will become HIV-positive, nearly 60 per cent

of them infected by their husbands. Some will be as young as 16, and

many will get this devastating news when they have a routine test

for HIV during their first pregnancy. And it appears the traditions

that subordinate a woman's role in society are to blame.

This underlines a startling facet of the crisis facing India. The

country's growing HIV epidemic is challenging age-old traditions

about a woman's place and threatening other professed moral and

cultural values by exposing the country's seamier side. It is

bringing the discrimination of marginalised segments of society into

sharp focus, raising uncomfortable questions about human rights and

healthcare, and breaking taboos about discussing sex. Uncomfortable

though they may be, changes will have to come fast if India is to

curb the spread of the virus.

At the last count, the Indian government estimated the country's HIV-

infected population at close to 4 million, and claimed the epidemic

was plateauing. But others - doctors, social workers and activists -

say the numbers are higher and rising, possibly making India the

country with the largest pool of HIV infections in the world.

But it's not all bad news. India's strengths may help avoid an

African-scale catastrophe - if it acts swiftly. A pharmaceutical

industry that is producing ever cheaper anti-retroviral drugs, a

scientific community getting ready for vaccine trials, and a strong

network of non-governmental organisations (NGOs) working on

education and intervention - all these provide hope that AIDS will

not overwhelm India as it has countries in Africa. Yet without a

major shift in the cultural attitudes and practices that play into

HIV's hands, this hope could be dashed.

The good news is that attitudes are changing, albeit slowly. In the

mid-1980s, when HIV was shaking up Europe and North America, India

believed it was safe from the virus. Ishwar Gilada, an

epidemiologist and AIDS care provider in Mumbai (formerly Bombay),

recalls returning from an HIV/AIDS workshop in Dublin, Ireland,

in1985 and starting an HIV awareness campaign amid strident

opposition. " Government officials, seniors and colleagues, all

said: `What nonsense are you talking? India has such a great

heritage and family and marriage system', " he says. The implication

was that India's chaste culture would somehow protect the country

from a virus whose transmission hinged on sexual promiscuity and

drug abuse.

Then, in 1986, the first cases of HIV were detected in a group of

prostitutes in Chennai (formerly Madras). The government reacted by

putting the entire group in prison, and the prostitutes were freed

only when an NGO went to court. Soon, however, alarming statistics

started surfacing from other cities. For instance, nearly 60 per

cent of sex workers in Mumbai's red-light district were found to be

infected. Their clients were taking the virus back to their wives in

villages, towns and cities across the country. Eventually, HIV

started showing up in monogamous, married women in some states,

including Maharashtra, Tamil Nadu, Andhra Pradesh and

Karnataka. " Which means that the epidemic has broken wide open into

the general community [in these states], " says Kulkarni.

Despite this, society in general and the government in particular

have yet to tackle sexuality head-on. Talking about sex is taboo,

and there is no explicit sexual health education in schools. " That's

the underlying difficulty in discussing HIV, " says Pradeep

Kakkattil, strategic planning officer at the New Delhi branch of

UNAIDS, the joint UN programme on HIV/AIDS. " We can't talk about sex

in public, but there are many things happening under that blanket. "

The covers will have to come off if India is to tackle the epidemic.

Commercial sex work is rampant in India: there are red-light

districts in Mumbai and Kolkata (formerly Calcutta), brothel-based

operations in the north, and unorganised sex work in the south,

particularly Bangalore, where housewives discreetly solicit

customers and then go back to their unsuspecting families. Then

there's the town of Peddapuram in Andhra Pradesh, where people from

all economic classes, including politicians and film stars, come for

sex. Women who live in middle-class homes and bungalows have agents

and can be " rented " on short-term contracts. " The contracts are so

detailed, " says Kalpana Jain, a New Delhi-based journalist who

travelled over 20,000 kilometres to research the epidemic for her

book Positive Lives (Penguin Books India, 2002). " They even work out

and deduct the time for her [menstrual] periods. " Not surprisingly,

HIV is sweeping through Peddapuram and the surrounding regions.

There's also sex along the trucking routes all over the

country. " There are these little lights that come up in small huts

built on the roadside, " says Jain. " People who travel along these

routes know it's a sex worker's place. The light indicates you can

stop by. " While a few isolated communities force their women towards

prostitution (highlighting their lowly status), it's mostly grinding

poverty that drives the trade.

The trucking routes have become the tentacles that have extended

HIV's reach, as have the migrant labourers who come to cities for

work, contract HIV from sex workers, and take it back into rural

India. But it's not just the truckers, migrant labourers and sex

workers who are at risk. " It's a lie that this is an epidemic of the

poor, " says Kulkarni. " It's affecting all sections of the society.

The more so-called conservative the community, the more badly hit it

is. " Sangamitra Iyengar of the Bangalore-based NGO Samraksha

agrees. " What HIV has shown us is that we are as full of

extramarital and premarital relationships as any other culture,

however we may have denied it, " she says.

Denial is only part of the picture. Compounding the problem is the

unequal status of women that is sewn into the society's religious

and conservative fabric. " In India, Hindu religion is related with

male chauvinism, " says Kulkarni. " A religion which is so gender-

biased would always discriminate against women. So they'll be more

vulnerable where HIV is concerned. " Many women know little about

their husbands in arranged marriages and lack control in their

marriages. While many sex workers now insist their clients use

condoms, most wives are unable to ask that of their husbands. " HIV

is going to ask us questions about our so-called holy system of

marriage, culture and conservativeness, " says Kulkarni.

But before such questions can be asked, the government has to accept

that HIV is a widespread problem. The New Delhi-based National AIDS

Control Organisation (NACO) - the nodal agency for all HIV/AIDS-

related activity in India - has set up the world's largest network

of surveillance sites around the country to monitor the epidemic,

and has mapped the country into high, medium and low prevalence

states (see Map). In states with a high prevalence of HIV, infection

rates are higher than 1 per cent in the general population. NACO

estimates that 3.97 million people were infected with HIV by 2001,

but that the number of new infections declined that year and the

epidemic is plateauing.

However, there is concern that the government is downplaying the

epidemic to protect its image. Some people see the health ministry

as a " punishment " posting and say that it behoves ministers to keep

numbers low so that they don't reflect badly on them. " The numbers

by NACO are highly underestimated, " says Kulkarni. He argues that if

NACO's claim that the epidemic is plateauing is correct, then it

means that India has controlled HIV. " And that is a lie, because we

haven't even reached people with our message. So it's not a question

of control, " he says. New Scientist invited NACO to respond, but at

the time of going to press it had not done so.

Unofficial estimates range from 4 million to 10 million currently

infected - putting India way above any other country - and the

infections are reportedly doubling every 3 to 4 years. A recent US

National Intelligence Council report estimates that between 20 and

25 million Indians will be infected by 2010 if nothing is done to

stem the epidemic. This would only be about 2 per cent of the

population (compared with over 20 per cent in some African

countries) but the sheer number of cases could still cripple India's

development.

Most worrisome is HIV's impact on tuberculosis. Nearly half of

India's adults are estimated to carry dormant TB bacilli. A healthy

person's immune system can usually keep the disease in check. But

HIV weakens the immune system, and doctors across the country are

already noticing the effects. Researchers at the National AIDS

Research Institute in Pune found that while 3 per cent of new TB

cases in 1991 were co-infected with HIV, in recent years this has

increased to 30 per cent. " TB could become the main killer in India,

if this synergy is not interrupted in the next five years, " says

, country programme adviser for UNAIDS, India.

Given such alarming prognostications, many say that the government

has done precious little to raise awareness. A survey by NACO claims

that more than 75 per cent of Indian people had heard of HIV/AIDS,

but other studies suggest otherwise. Recently, the BBC World Service

Trust found that only 5 per cent of people surveyed had ever

discussed sexual matters. And adds, " Based on analysis of

secondary sources, it has been estimated that maybe 10 per cent of

youth, 10 per cent of truckers, 15 per cent of intravenous drug

users, and 20 per cent of sex workers have been reached by HIV/AIDS-

related information and initiatives. "

More initiatives are badly needed. NACO's initial efforts at

reaching only the high-risk population, such as truckers and sex

workers, were criticised as being too narrow. Recently, health

workers have started going door-to-door publicising twice-yearly

health camps where rural people are given information about HIV and

sexually transmitted diseases. However, only about 21 per cent of

the targeted population are turning up. This month the national

television channel, Doordarshan, along with the BBC and NACO,

started running condom advertisements as part of a remarkable

infotainment drive that features detective and youth-oriented shows

whose subject matter covers sexual and reproductive health. However,

the government pulled three of the seven ads, saying they encouraged

sex.

Despite such official prudishness, some politicians are advocating

change. The chief minister of Andhra Pradesh, Chandrababu Naidu, who

floated inflated condoms in the lobby of the state legislature, and

the newest national minister of health, Shatrughan Sinha, have

demanded more HIV/AIDS education.

More such support is needed to remove the stigma and fear associated

with AIDS. And institutionalised discrimination doesn't help. While

things have improved in the past 10 years, some doctors and

hospitals still turn away patients with HIV. And the police are the

worst offenders. In Bangalore, for instance, they routinely thwart

efforts to raise AIDS awareness by harassing and intimidating sex

workers. " Two of them were taken to the police station and had chili

powder rubbed into their eyes and vaginas, " says Iyengar. " There has

been an escalation of violence against sex workers. They are the

best agents for prevention of HIV, so by beating them and harassing

them we are not getting anywhere. " The police also harass other

sexual minorities, such as gays, bisexuals and transgender people.

Homosexuality is still illegal in India, and gay men are often

driven into heterosexual marriages for the sake of appearances.

A powerful force for change may come from the grass roots. India has

a strong ethos of social and political activism, and campaigners

have been coming up with innovative awareness and intervention

programmes. A striking example is the Sonagachi AIDS Project in

Kolkata, one of the world's largest community-run intervention

projects. Through this project, sex workers have formed Asia's

largest union of its kind, worked for decriminalisation of

prostitution, for human rights, and for AIDS education. Empowered

women have been refusing unprotected sex with clients. The union

encourages regular testing, schools the children of sex workers,

runs a loan cooperative, and spreads AIDS awareness through music,

dance and street theatre. Only 9 per cent of Sonagachi's 6000 sex

workers are HIV-positive, which strongly contrasts with at least 50

per cent in Mumbai. In Tamil Nadu, another unique NGO-led project

has roped in the postal service to deliver AIDS awareness messages

and condoms. So far the response has been good.

But India's size and diversity mean that such projects remain

isolated islands of excellence in an otherwise daunting landscape.

Many Indian states are the size of large European countries, and

each has its own language, literature, cultural habits and politics.

Even the mode of HIV transmission differs from region to region. In

effect there are multiple epidemics, each progressing at a different

speed and intensity.

Nonetheless, there is cautious optimism that India will not go

Africa's way. Cheap anti-retroviral drugs made by Indian companies

could help manage the epidemic, although even they may remain beyond

the reach of the poorest people. " It's a major paradox that in the

country that produces the cheapest anti-retroviral drugs in the

world, the population is still very substantially unable to access

them, " says . He and others at UNAIDS are talking to state

governments to develop cheap health insurance schemes.

HIV will definitely force India's hand. The rising number of deaths

from AIDS and the mounting pressure from grass-roots activists,

Indian women's rights groups and international organisations will

make the government address issues of development such as

healthcare, human rights, education and even transport. Some say

that religious leaders should get involved. While Hinduism, India's

majority religion, doesn't have any one titular head, there are many

spiritual and religious organisations that could spread awareness. A

senior Muslim imam in the Kashmir valley already does this, and in

many mosques in the valley HIV is discussed after Friday prayers.

But the most significant change could be cultural. " This Indian

community cannot sleep for ever. We'll have to address issues of

religion, culture, marriage, sexual education, talking to children

and to each other about sexuality and safe sex in our behaviours, "

says Kulkarni. " And that would be a revolution. "