HIV/AIDS in India: Narrow Focus, Inflated Projections & Poverty

[Guest guest]

HIV/AIDS in India: Narrow Focus, Inflated Projections & Poverty

by Rupa Chinai

On August 5, 2008 a young " HIV-positive " couple in Mumbai - Babu

Ishwar Thevar, 39, his wife Amothi, 33 - committed suicide after

killing their three children, sons Venkatesh and Mani, ages 10 and 8,

and daughter Mahalaxmi, 6. They had just discovered that their

youngest child too " was infected by the deadly virus. "

The stigma of AIDS has taken many lives long before the disease

itself claimed them, but the extent of such suicides, and the reasons

behind them, have rarely come to public knowledge. AIDS has a

critical link to the immune system and the factors that influence it.

Society's limited understanding of this disease is causing innocent

people to pay a terrible price.

At a time when we do not have a cure for AIDS, we cannot assume to

know its cause. Increasingly across the world, there are voices

questioning the perpetuation of a " enstein that has been blown

out of all proportion. " They question the narrow approach to a single

disease, especially the huge financing for AIDS over all else in

basic health care. Though welcome and long overdue, this debate must

now move further. Our approach to this disease needs to change for

the sake of families like that of Babu and Amothi Thevar.

Narrow Focus

In 1993, I was one of the first health correspondents in India to

serve on the staff of a leading daily English language newspaper. I

had just completed a journalist fellowship at the Harvard School of

Public Health in Boston, and came back deeply influenced by teachers

such as the late Dr. Mann, a public health expert with

renowned international experience. He believed that the discovery of

a new disease like AIDS was an opportunity to scrutinize fundamental

issues - such as the link between disease and poverty, the need to

examine the workings of the entire health system, access to

preventive health information and the means to support health in all

its physical, mental and social dimensions.

Based in Mumbai, I witnessed the unfolding of the " HIV/AIDS epidemic "

in what was dubbed the " AIDS capital of India " and extensively

reported on it over the course of a decade. At that time, the medical

community shunned treatment of this disease.

As a result, patients were in the stranglehold of a small mafia of

doctors who took every opportunity to fleece, frighten and even

conduct illegal vaccine trials on their patients. Denied any support,

the patients believed that HIV meant death. Mercifully, that

stranglehold was subsequently broken when heightened international

focus widened the circle of medical practitioners and NGOs.

One of the few but important gains of the focus on AIDS in India has

been the emergence of some genuine community-based groups for the

first time in public health. Many of them provide an interface

between marginalized groups, the wider community and public health

services. This process empowers those who were previously voiceless

and ignored, and who must continue to receive priority support.

This success however, is marginal in comparison to the enormous havoc

this narrow and ill-conceived focus on HIV/AIDS has rendered to

India's public health system. There is an urgent need to expand the

treatment to a comprehensive, primary based approach – one that takes

into account the total health needs of communities in developing

countries that cope with an already enormous burden from other killer

diseases.

Inflated Projections

Contributing to this climate of fear and myopic focus were the myths

perpetuated – in particular, AIDS fatality figures were severely

inflated. The past two decades have seen warnings about the huge

numbers of HIV/AIDS infected persons who would " die like flies. " The

projections, provided in particular by the CIA, UNAIDS and the WHO,

ranged from five to twenty million estimated cases in India alone.

Local and international groups that questioned the high numbers faced

severe criticism and marginalization.

Ultimately, the skeptics proved right. The AIDS lobby has since

backtracked on its pronouncements without acknowledging the extent to

which they have misled the public. UNAIDS has now reduced world HIV

estimates from 39.5 million to 33.3 million but still calls for

dramatically increased AIDS spending – from $9 million today to $42

billion by 2010 and $54 billion by 2015.

A report by India's National Family Health Survey (NFHS-3), tabled

with the Indian government in 2007, was the first to provide data on

what is happening at the general community level and it forced

international agencies to scale down their figures. Estimates of

India's HIV/AIDS prevalence are now 2.5 million, a significant

decrease from the earlier Indian government estimate of over five

million infected.

While HIV causes only 3.7 percent of global mortality, it receives 25

percent of all health aid. Additionally, it receives a large portion

of domestic expenditure, which often exceeds domestic health budgets,

says England, chairperson of the Health Systems Workshop, an

independent think-tank promoting comprehensive primary health systems

reform in developing countries.

It is important to analyze how these high projections came about in

the first place, and to ask how those in positions of authority

accepted these figures without asking the basic questions voiced

within the community. It is vital to know what is happening on the

ground and discover for ourselves India's true experience with this

disease.

Poverty & Malnutrition

During a 2008 media workshop with Asian and African journalists in

Geneva, the World Health Organization placed blame for the flawed

fatality projections on the home countries. " The WHO has no mechanism

for monitoring numbers and its estimates depended on the data

supplied by the Indian government, " held the WHO's team leader for

corporate communications. Policymakers in Delhi and Washington had

applied universal yardsticks without examining local geographical and

cultural traditions of health-seeking behavior in developing

countries.

India's HIV/AIDS surveillance system drew samples from the following

sources within public sector institutions: Clinics for antenatal

mothers; STD (Sexually Transmitted Diseases) treatment centers; blood

banks; and NGO groups catering to the needs of " men who have sex with

men " (MSM), commercial sex workers and their clients.

The problem with samples taken from these sources is that these

segments of society do not represent the general population - they

represent high-risk groups. While pregnant women attending antenatal

clinics in public hospitals would come from the general population,

they still represent the lower socio-economic strata of society. The

picture they show does not portray the total image with its manifold

nuances.

Typical patients who seek the services of the urban public sector in

India are migrants who come to the cities and live in stressful

conditions. They suffer from malnutrition and carry a heavy burden of

disease that has compromised their immune systems. If they were to

undergo an HIV test, it is likely that it would show a false positive

result because of a cross-reaction due to the presence of other

infections commonly found in developing countries.

Data drawn from the public sector connects with another Indian

peculiarity. Studies have revealed that 70 percent of Indians turn

first to the private sector when they suffer from a health problem.

They do so because the primary health service offered by the

government sector is neglected and in shambles. It is only when they

run out of money or suffer the consequences of wrong diagnoses that

patients turn to public sector hospitals, resulting in the over-

running of referral services by patients suffering from minor

problems.

Thus, key information missing in the HIV/AIDS surveillance systems is

comparative data drawn from the private sector services, which covers

the majority of India's population. The class of people who come here

are better nourished and healthy. HIV testing done on them may

demonstrate different results.

Such comparative data is readily available with all leading private

hospitals in Mumbai, who subject their patients to an HIV test on

admission. The administrator of one leading private hospital in the

city however revealed that the number of HIV patients found in their

hospital is, in fact, not large. He says their numbers are restricted

to a small group of patients who shop around for services in the

city's private hospitals because of stigma. Strangely, the national

surveillance system has completely left out this vital sector from

its reckoning.

Why are researchers and scientists not interested in comparing the

private and public sector data on HIV/AIDS? What makes the better

nourished, wealthier class of people less vulnerable to AIDS and

other infectious diseases, in comparison to the poorer segment of

society?

- This is the first of a three-part series focusing on the Indian

experience with AIDS.

Next week, Rupa will address the issues surrounding misdiagnosis. –

Ed.

About the Author

Rupa Chinai is an independent journalist based in Mumbai, India. She

has been writing on health and development issues for the past 25

years and her work has appeared in some of India's leading English

language daily newspapers and websites as well as foreign

publications. Her basic education was obtained in Mumbai and

opportunities for further studies and exposure came through

prestigious awards such as a journalism fellowship from the Harvard

School of Public Health in the US, amongst others. She is co-author

of a book on rural women's health issues and is currently engaged in

writing a book on northeast India, based on 20 years of travel and

work in that region.

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