European and Indian HIV activists are swapping
expertise on how best to use the media to fight HIV, writes Martin
Flynn
Photos Alex Caballero
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The
Indian HIV epidemic has grown to massive proportions, surpassing South Africa
as the country with the biggest number of HIV positive people. There are now
5.7 million in a country with over 1.2 billion inhabitants.
But like most things in this fascinating subcontinent, the Indian HIV epidemic
is very different from elsewhere in the world.
Unlike many African countries decimated by the HIV and Aids epidemic, India
has a relatively stable economy and an established political democracy. It
produces cheap generic HIV drugs that are saving lives across poor countries
of the world and boasts medical professionals second to none.
And just as India refused to rely on western aid to modernise its industry
and stave off starvation with Mrs Ghandi’s 1960s ‘Green Revolution’,
so now with HIV, India is finding home-grown solutions to a global problem.
Painful paradox
Unfortunately the Indian government will not buy the cheap drugs for its own
HIV positive population, except for a few thousand senior civil servants and
military. Most people with HIV cannot afford even the $300 a year to keep
themselves alive.
India is home to the Cipla and Ranbaxy; the first generic antiretroviral manufacturers
in the world to make drug combos at less than $300 per patient per year. Yet
only seven per cent of HIV positive people who need the drugs are actually
getting them.
India’s most powerful politician, Sonia Gandhi, admitted the country
suffered from a “painful paradox” with Indian drug companies supplying
HIV drugs everywhere but India.
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Gratitude
and stoicism
Two years ago in Mumbai, I met a beautiful young HIV positive woman who had
lost her husband and first baby to the disease.
She was incredibly grateful when she received a single dose of nevirapine
during her second pregnancy to stop her new baby becoming infected with the
virus but was not thinking of her own health at all.
She worked six days a week as a cleaner, kept an extended family but earned
only $28 a month. There was no way she could afford the cheapest generic HIV
drugs for herself. Like millions of woman around the world she put the rest
of the family’s wellbeing first and, like many mothers, her own health
was the last thing on her mind.
Shillong summit
An unlikely alliance of gay men, intravenous drug users and Christians have
scored incredible successes on treatment access and the civil rights of positive
people in the last 25 years. HIV positive Indians will have to make similar
alliances in this vast country to make inroads into the epidemic.
At the end of last year around 30 Indian HIV activists and journalists came
together with western counterparts in the rainy and hilly north-east city
of Shillong.
The aim was to share ideas about tackling the epidemic and learn how best
to use the media for education, prevention and supporting HIV positive people.
The seminar heard how India’s HIV epidemic was concentrated in rural
areas and how it was generally driven by sex but increasingly by intravenous
drug use.
UNAIDS figures show HIV infections in India are mainly occurring during unprotected
heterosexual intercourse. Some big cities have huge sex industries, a growing
gay population and a trucking industry all thought to be driving in the spread
of HIV.
In
denial
Despite India’s tradition of tolerance and respect, in some areas HIV
positive people have been attacked, driven from homes, stoned, burnt or even
murdered. Levels of discrimination against HIV positive people are high and
there are few HIV positive role models for people to identify with and learn
from. India is also ‘in denial’ about the size and impact of the
disease.
Truckers’ leader Nagendra Singh last month told Agence France Press:
“The truck drivers feel Aids is a foreign disease and they are safe...
that the disease does not affect Indians, only white people.”
Heroin
Rates of HIV infection in the states of north- east India, which share hundreds
of miles of porous borders with the heroin producing areas of Burma and Thailand,
are higher than in Mumbai or Delhi. With an estimated one million injecting
drug users in India, the extent of the emerging HIV problem is just beginning
to hit home. Activists at the seminar explained how heroin smugglers dropped
off cheap heroin in border villages to create a market for the drug among
mountain tribes.
“Good quality heroin is very cheap,” Manipur activist Chananja
Sharna told me.
“Twenty Rupees (20p) for one good dose. Ninety per cent of HIV positive
drug users are also co-infected with hepatitis C (HCV).”
“At least 7 per cent of the western and northern border regions’
adult population is infected with HIV and less than 0.5 per cent has antiretroviral
access,” said Dr Aung Kyaw Oo from Manipur.
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Prudish
“When you’ve got a billion people, and they are as disparate as
the Indians are - disparate languages, different living conditions, different
income and education levels - the education challenge and the challenge to
overcome the stigma and discrimination is breathtaking,” former US President
Bill Clinton said last month.
India’s finance minister P Chidambaram admits the epidemic has “the
most frightening potential to get out of hand”.
He said: “We must be more open about sex. The government is in denial
mode over the problem of HIV and the country has prudish attitudes towards
sex.”
HIV DIY
BBC World Service’s Andrew Whitehead called on HIV activists themselves
to take control of the media agenda to teach India to tackle the disease.
“People living with HIV have to take the media agenda into their own
hands,” Whitehead urged.
The BBC World Service is producing some remarkable HIV information including
an HIV positive detective series called Jasoos Vijay, watched by as many as
30 million people each week on national TV.
Haath se Haaath Milaa (Let us all join hands), which uses Bollywood stars
including Big Brother winner Shilpa Shetty, is seen by 7 million people a
week. Other national radio programmes with HIV prevention messages include
Aaanger Ke Paar, a weekly programme for women listeners.
Hepatitis
Harm reduction programmes using heroin substitutes like buprenorphine to wean
addicts off heroin are beginning to have some affect. Charnajar has been on
the buprenorphine for three months and is now clear of addiction.
But there are other problems. Charnajar explains: “I’m seeing
a lot of my friends dying from HCV. I’ve lost four close friends this
year.
“Hep C drugs are very expensive about 36,000 Rupees a month (approx
£360). “What’s the point of giving us information on hep
C if we cannot afford the medications?”
But it is the young people who need the most urgent help, he says, so they
do not become tempted to follow older boys into taking heroin.
Dr Jaya Shreedhar, a specialist from Chennai, said the critical need is for
consistent high quality media coverage of HIV.
“We need messaging that is informative, non judgmental and encourages
people to access HIV prevention and care services such as voluntary counselling
and testing, antiretrovitral treatment, and harm reduction services.”
Gods of cricket
Elsewhere, fantastic HIV prevention work has been undertaken by India’s
cricket stars, who have godlike status in the country.
Even the street prostitutes of Kolkata have been mobilised to spread the message
on condom use and safer sex.
Meanwhile, the gay men’s movement is slowly growing in strength and
demanding the repeal of laws outlawing homosexuality introduced under the
British Raj.
Each Indian state now has groups and coalitions of HIV positive people fighting
for local treatment access and human rights. These groups are slowly growing
in status and power.
In the world’s largest and most vibrant democracy the battle against
HIV is far from won. India’s economy is advancing at a phenomenal rate
but one in four still live in abject poverty. Despite these problems it is
not beyond the resourceful and self-reliant Indian people to solve their own
HIV crisis... with a little help from their many friends around the world.
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