AIDS/HIV Scenario in India

(India Today)

The Mess
By Shefalee Vasudev

Healthcare workers call G.B. Road, Delhi's notorious red-light district,
India's AIDS factory. Teeming with commercial sex workers, the area is a
giant reservoir for the deadly virus. It feeds the thick arteries that have
carried the disease across the country with frightening rapidity in recent
years.

Despite the Rs 1,000 crore being pumped every year into AIDS prevention-more
than for any other health problem in India-G.B. Road is symbolic of how
things have gone terribly wrong with the anti-AIDS campaign. Among the
easiest ways to prevent the spread of virus is to have customers use condoms,
and part of the government's drive has been to make the contraceptive freely
available in the area.

Yet Rashida, a dark, attractive 32-year-old sex worker at G.B. Road, says,
"We haven't got free condoms for two years. We buy them at Rs 30 a packet."
Parul, 24, adds, "A government official does come to distribute Nirodh Deluxe
condoms, but he charges his 'cut' of Rs 10 per packet." This when the premier
central agency, National AIDS Control Organisation (NACO), is headquartered
only 3 km from the area.

Though nine non-governmental organisations (NGOs) are working to prevent AIDS
in the area, they have achieved precious little. Last week, days before the
World AIDS Day on December 1, Oscar Fernandes, MP and convener of the
Parliamentary Committee on HIV-AIDS, visited the area for the first time
after taking charge nearly a year ago. When told that even doctors specially
assigned to the area refuse to treat sex workers, a shocked Fernandes
admitted, "A lot needs to be done."

A testimony to Fernandes' statement is three-year-old Babita, born HIV
positive and currently housed at the Chelsea Hospital in east Delhi. The
disease was passed on to Babita by her mother Bhagwati, 19. A head injury has
now left her speech-impaired. The hospital, run by a private charity
organisation, could do with more facilities in patient care. "Our testimonies
are sold like furniture by AIDS organisations to get funds," says Naveen
Kumar, who is HIV positive. President of the Delhi Network of Positive
People, a group formed two years ago to fight for the patients' rights, Kumar
says, "When it comes to our care and treatment, AIDS workers disappear."

The key to combating AIDS lies in evolving an effective preventive strategy
while simultaneously providing treatment and setting up rehabilitation
centres. With big money pouring in-Microsoft's Bill Gates added $100 million
(Rs 480 crore) last month to the burgeoning AIDS care kitty-focused and
closely monitored programmes should not be a problem. Unfortunately, however,
India's nascent AIDS strategy seems to be coming apart.

The disease that afflicts an estimated four million people in the country has
already spawned an industry of profiteers. Despite the enormous public and
private funds (see box) flowing into the AIDS work-NACO spent Rs 228 crore or
20 per cent of the Union Health Ministry's annual budget in 2001-2-the
benefits are marginal. A large component of the health budget goes to the
State AIDS Control Societies for speedy implementation of the programme. But
according to an evaluation by international experts, only one-third of
India's states are successfully enforcing the programmes. Another third fall
into the marginally acceptable category while in the remaining states the
project is in a shambles.

Besides a horde of questionable NGOs gobbling up unaccounted sums of money,
preventive strategies like creating awareness about the disease are executed
lackadaisically. Worse, treatment facilities are almost non-existent. Nowhere
is this more evident than in Manipur, India's AIDS capital and locus of
Myanmar's heroin trafficking. The Manipur AIDS Control Society has been
repeatedly hauled up by the state auditors for diverting vital AIDS funds to
other health programmes. "There is much talk about money for fighting AIDS.
But where's the money?" asks Mary Joy of the Society for HIV-AIDS Lifeline
Operation (shalom) in Manipur. With drug addiction a major problem, the
transmission of the virus is largely through infected needles and patients
are often treated inhumanly (see box). The state Government is not the only
one to blame. There are about 100-odd AIDS NGOs in the state. "Everybody from
ministers and bureaucrats to small-time drug peddlers have set up NGOs," says
Yambem Laba, member of the Manipur Human Rights Commission. But little
genuine work is done.

The story is much the same in the rest of the country. While there are about
1,800 NGOs claiming to work for AIDS prevention, nearly 80 per cent are
suspect; many are bogus and others are run by an individual or a family. The
NGO culture spawned by HIV-AIDS has brought in its wake other social wars.
"There are more people living off HIV than dying from it," says Pune-based
Dhiren Rawat, president of Act Up India, a group of people living with AIDS.
Adds Eddie Mall, executive director of Delhi-based CANA, a group representing
500 NGOs countrywide: "Without an accountable mechanism to assess
sustainability, genuine work and ownership, how can funds be allocated?"

The Union Government, which funds many such NGOs and is expected to monitor
their progress, is quick to defend itself. "While there are excellent NGOs in
the field, others need hand-holding. We must put in place mechanisms through
these public-private partnerships," says Meenakshi Datta-Ghosh, additional
secretary and project director, NACO. The fear is that by the time NACO puts
its mechanisms in place, it will be too late to undo the damage.

Take Sudhir Nautiyal, 23. Last year, the unsuspecting youth responded to a
newspaper advertisement by a Delhi-based NGO, inviting fresh graduates to
become "training officers for HIV-AIDS". In exchange for original degree
certificates, the candidates were given appointment letters and identity
cards to find donors for an upcoming AIDS hospital. "We were warned that
unless we got five members each donating Rs 250-Rs 1000, we wouldn't get our
salaries," says Nautiyal, who quit when he couldn't raise the money. However,
the real danger from such deceptions is the spread of half-baked knowledge
about HIV-AIDS. Nautiyal thinks sharing a comb can transmit HIV, a
presumption he advocated as a field executive.

According to NACO, 700 targeted intervention projects are being implemented
in states, but on a site map, Delhi, Bihar and Uttar Pradesh show no projects
having been initiated till the end of 2000. This despite all demographic
studies showing Bihar and Uttar Pradesh with the maximum number of migrant
labourers, considered a high-risk population for AIDS. While the biggest
share of AIDS money is channelised into advocacy, it doesn't seem to have
made a dent. Compared to men, women are at a greater risk of contracting HIV,
but NACO's survey reveals that rural women have the lowest levels of
awareness; even the risk of mother-to-child transmission is not recognised.

The epidemic is also gaining ground because the risk to educated classes and
youth is still not accepted. Meet Bhupen Yadav, 27, an MBA. Head hung low, he
talks about his heady encounters with a high-society call girl five years
ago. After frequent bouts of undiagnosed fever two years ago, he tested HIV
positive. "I never thought an educated guy like me could be infected. I
thought it was a poor man's disease," he says.

Much like Yadav, a large section of the Indian society takes refuge in
denial. "When I go to conduct HIV awareness workshops in corporate houses,
managers indicate that such awareness is necessary only for the labour class,
not their cadre," says Sandhya Bhalla, project director for CII's HIV
business trust.

Worse, the resistance to introduction of sex education in schools is telling.
Almost 35 per cent of all reported cases in India are in the 15-24 age group.
Young men are at high risk because many have their first sexual experience
with sex workers. Says Dr Everold Hosen, who's global communication adviser:
"India's challenge is to engage people in talking about sex beyond disease
and death. Especially youth, because sex is on their minds most of the time
and there are no comfort zones to discuss these issues."

A rare effort in this direction is, however, being initiated by Andhra
Pradesh in December this year, when an education programme aimed at creating
awareness about the threat posed by AIDS-HIV will be launched in all the
11,464 government and private high schools in the state.

International experts also believe that India grossly underestimates its HIV
positive figures, saying it is five times the official four million. One
reason for the ambiguity is NACO's method for estimating infection rates. It
has surveillance centres which cover only 384 sites nationwide to concentrate
on certain groups. These include high-risk groups (truck-drivers, sex
workers, migrant labourers), sexually transmitted disease clinics, ante-natal
clinics in rural areas, MSM (men having sex with men) groups and intravenous
drug users' clinics. Dr David Miller, country programme adviser at UNAIDS, a
UN agency that monitors the disease across the globe, questions the accuracy
and quality of the tests conducted at these sites. Besides, these exclude
figures from private testing labs which report a worrying rise in numbers.
UNAIDED VICTIMS
While who and the UN have been pressing the Indian government for mortality
figures, NACO lists only 2,524 AIDS deaths between 1986 and 2001. "The
official figures should be multiplied by 10 for a correct estimate," says Dr
V.L. Muana, director, shalom, Manipur. His hospital has recorded 166 AIDS
deaths in the past four years. Another way to crosscheck the figures is the
blood banks where an HIV test is mandatory for all donors. While NACO is only
now taking cognisance of these figures, the banks shockingly do not inform
the donors who test positive. Now, Datta-Ghosh promises NACO will commission
a study to analyse the burden of HIV-AIDS and its socio-economic
implications. "This will give us updated data to resolve the dialogue," she
says.

For the burgeoning HIV-AIDS population, discrimination and stigmatisation are
other problem areas. A study by the HIV-AIDS unit of Lawyer's Collective, a
Mumbai-based legal firm, on the nationwide litigations by HIV positive people
reveals they are at the receiving end of multiple problems-psychological,
medical, infrastructural. "There is no sustained counselling programme," says
Kumar, admitting that like many affected he often feels suicidal.

Even in treatment, where tangible work can be measured, efforts are abysmal
(see box). In government hospitals, HIV patients are sent to skin and
venereal diseases wards, which lack an empathetic environment crucial for
imparting dignity in death. Private hospices (holistic care centres) like
Sahara, Michael's Care Home and Naz Foundation in Delhi offer hope, but beds
are limited. Many patients with full-blown AIDS are easily besieged by
opportunistic infections like chronic diarrhoea and fever, tuberculosis,
pneumonia and jaundice. Death often precedes the bed's availability.

It is not just lack of empathy. Though pharmaceutical companies like Cipla
have hammered down the cost of anti-retrovirals (ARVs) which check the
progress of AIDS, they continue to be expensive-Rs 1,200 a month per
prescription for each patient. There is also the need for constant tests to
ascertain the progress of treatment. "There is a dearth of diagnostic
facilities that cost Rs 4,000 per patient and tests need to be conducted
every three months," says Dr Chinkholal Thangsing, director of Delhi-based
NGO Action India's AIDS project. With nutritional supplements each patient
would need to spend Rs 8,500 a month.

India requires at least $500 million (Rs 2,400 crore) every year just to
provide ARV treatment. But with NACO not offering monetary support, most
patients languish. The AIDS vaccine may still be a decade away, if at all.
After an agreement between the Indian Council for Medical Research and the
International AIDS Vaccine Initiative to develop an India-specific vaccine
for the C-substrain of HIV at the National AIDS Research Institute, Pune,
clinical trials on humans are yet to begin.

Such silver linings provide scant hope in a bleak scenario. There are, of
course, spiritual missions like the Ramakrishna Trust and the Aga Khan
Mission that have done good work, while industrial groups and other
government departments are also getting into the act. But what is essentially
required is a joining of hands. Since the epidemic in India is still in its
infancy, it's the right time to initiate more structured plans, say experts.
"We need a comprehensive approach involving the health sector, voluntary
sector, education system, labour organisations, the government and other
stakeholders," says Miller. Otherwise, the economic and social burden created
by AIDS will seriously affect the GDP levels and increase the national debt.

Bobby John, director, Massive Effort Campaign, Pune, says, "We need to be
effective stewards of available resources or there will be a dual
tragedy-rampant HIV and a growing national debt." For this, says Anand
Grover, director, AIDS unit of Lawyer's Collective: "Both donor agencies and
NGOs need strict monitoring in accounting, payment and spending."

According to NACO's written agenda, NGOs should be credible, have a minimum
three-year experience in community work, financial transparency and an
understanding of HIV-AIDS issues. Says Datta-Ghosh: "This is an opportunity
for us to instal a series of paradigm shifts on diverse fronts. The national
AIDS control programme will then be more vibrant, responsive and closer to
ground reality."

Union Minister for Health Shatrughan Sinha recently roared, "We have the
will, we want the money." He got it wrong. India has the money, but the
enormity of AIDS needs efforts bigger than the clout and manipulations of
business. Otherwise, many more like Babita will be born, awaiting slow,
painful deaths.

-with Suman K. Chakrabarti, Nidhi Taparia Rathi and Amarnath K. Menon