AIDS in India: Disaster in the Making. EPW Perspectives, May 8, 2004

[Guest guest]

AIDS in India.: Disaster in the Making

EPW Perspectives. May 8, 2004.

While TB and malaria are currently the number one killers in India,

inaction could make AIDS the leading cause of death. A decade after

setting up the National AIDS Control Organisation, the nation is

still debating the accuracy of HIV/AIDS statistics. Are current

responses adequate to stem the spread of the disease?

By

Suneetha Kadiyala, Tony Barnett

AIDS teaches us lessons that go beyond Africa and the west. These

lessons enlarge our understanding of the significance of socio-

economic, cultural and political influence on the spread of

infectious diseases. HIV/AIDS is the first epidemic in the latest era

of globalisation. It spreads rapidly because of the acceleration in

communication, the rapidity with which desire is reconstructed and

marketed globally; and the flagrant inequalities that exist between

and within societies. In this context, the epidemic pointedly

confronts us with the question of how `we' value other human beings.

HIV/AIDS is different. It is a lentivirus and a retrovirus. These two

features make it particularly significant for economies and

societies. A lentivirus is very slow acting – those infected are

infectious over a long period and in fairly good health. They may

thus inadvertently infect many others. It is a retrovirus, it has to

convert its core genetic material (RNA) to DNA by inserting itself

into a host's cell which then become a factory for many millions of

new viral particles.

In the case of HIV, slow `incubation', a high reproduction rate of

infection and mainly sexual transmission (sex of any kind – not just

particular kinds) means that it affects active adults in large

numbers. Thus it has social and economic effects as it makes sick and

dependent and finally kills, those who should be the most productive,

caring and thrusting in their societies. There is no cure, although

anti-retrovirals radically slow down the progression of disease.

There is no vaccine – and the virus mutates rapidly and often. Large

population is no protection from the effects of the virus – it is

population structure rather than size which matters. This disease

changes the ratio of dependents to producers. Caste, class and wealth

are no protection, and nor is marriage (at least for women) – all are

at risk who ever have unprotected sex with another person.

Stigma is everywhere – this is a sexually transmitted disease and sex

can be made to carry so many of the prejudices of gender, religion,

ethnicity and caste. Prevention is the best route, but we do not

really know how to persuade people to change sexual behaviours and so

much of what needs changing is not subject to our more rational side.

While TB and malaria are currently the number one killers in India,

inaction could make AIDS the leading cause of death.

In some states and cities, it already looms very large. We know

little of what is happening in rural areas where levels of seasonal

and annual migration are high. We do know that labour migration is a

major component of epidemic spread elsewhere.

As the first cases of AIDS were reported in 1981 in the US, India

stood by and watched the epidemic unfold. When AIDS was first

detected in Chennai and Mumbai in 1986, some observers instantly

played the blame game shifting the burden of the epidemic to Sri

Lankan militants, `promiscuous' African students and the west for

trying to conspire selling condoms to India.

For another five years people watched the epidemic grow, this time

blaming `bad women', injecting drug users and homosexuals for

spreading the virus. Even after 20 years of the epidemic, many

continue to scapegoat these so-called `high risk groups' and

the `vectors of the disease' with a rhetoric of middle class moral

code, patriarchy and closely controlled female sexuality.

This shortsightedness, an increasing disregard for civic rights and

responsibilities, and a self-righteous prejudice formed out of

insubstantial and ill-informed opinion is resulting in an

unacceptable level of apathy towards the epidemic. Kalpana Jain, in

her recent book Positive Lives: the Story of Ashok and Others, gives

a disturbing account of such attitudes and taboos in relation to

HIV/AIDS in India [Jain 2002].

Today, the need is urgent to confront and act to control this

disease. Without a proper response, India's HIV/AIDS will not remain

at the current prevalence rates of `only' 0.8 per cent or even

confined (if it is so confined) to a few sections of the population.

It will explode beyond control as in other parts of the world. (For

example, the prevalence rates in South Africa were around 1 per cent

in 1991 but have now increased to 25 per cent).

Those who are responsible in India must accept the hard reality that

responses are trailing behind the virus and if corrective steps are

not taken, the disease will run amok.

Why Are Numbers Important?

Even a decade after the setting up of National AIDS Control

Organisation (NACO), the nation is still grappling with the HIV/AIDS

statistics. A formal epidemiological tracking and projection system

for HIV /AIDS was set up by NACO only in 1998. The current estimated

number of people living with HIV/AIDS is at least four million in

India [NACO 2001] and probably rather more – with a national

prevalence level of 0.8 per cent.

The epidemic is considered to be generalised in at least six states

with prevalence levels surpassing 1 per cent in Andhra Pradesh,

Karnataka, Maharashtra, Manipur, Nagaland and Tamil Nadu. Remember

that zeroprevalence rates show future burdens of illness and death –

and that future is about seven years ahead. Long enough to deny, but

not for too long.

The NGOs, media and the doctors generally regard the figure of four

million people HIV positive to be an underestimate. Jain gives a

detailed account of the ineffective surveillance system that

consistently fails to adhere to scientific survey techniques and

laboratory protocols. For example, the designated centres in Bihar,

failed to collect the requisite number of samples to estimate HIV

prevalence levels in 2002.

Little wonder that Bihar is reported to have low prevalence rates! In

many parts of the country, the numbers from the individual

laboratories, doctors and NGOs point in radically opposite direction.

Siddharth Dubey, in his riveting book Sex, Lies and AIDS, estimates

that 1,400 people are infected every day [Dube 2000]. This would be

half a million new infections every year.

Projections of the HIV/AIDS epidemic vary wildly as well. The NACO

projects that HIV prevalence will reduce to negligent levels within a

few years – but with the caveat of `effective programming' – one

might ask where other than Senegal, Uganda and Thailand have there

been such effective programmes and what has helped all of those

countries most? The magic ingredient has been top-level political

engagement and open dialogue over a long period. This is singularly

lacking in India.

And it should be remembered that Thailand and Uganda have substantial

epidemics even so! A recent report by the United States' National

Intelligence Council (NIC) states that India will have as many as 20

million infected people by 2010 [NIC 2002], five times the current

levels. Feachem, the head of the UN Global Fund for AIDS, TB

and Malaria, notes that while the numbers quoted by the NIC could be

a slight overestimate, conceded that there is an increasing trend

[Anon 2002].

The Indian minister of health and NACO officials have hotly contested

these projections by pandering to the discourse that over projected

numbers cause AIDS `scare' – the surest way to spread the virus is to

dismiss the projections as mere panic buttons, because that way

people neither alter their perceptions nor their behaviour.

Accurate statistics are important because they represent aspects of

human realities, shape public perceptions and form a scientific basis

for government policies. A reliable surveillance system and realistic

estimates allow us to understand the prevalence, magnitude,

distribution and mode of spread of a disease.

These data are critical prerequisites for designing effective

preventive, support and mitigation strategies. They can also stem the

current culture of denial and scapegoating and encourage politicians

and the Indian public to accept that there is a problem, which

requires their attention.

Rechannelling the Discourse

The western and the African experience tells us that AIDS festers on

the fault lines of societies throwing into sharp relief the flagrant

inequalities between the rich and the poor; men and women; urban and

rural; and the educated and the uneducated. It provides evidence that

the origins of the epidemic are historical and structural and its

effects appear over a very long period of time. Poverty, inequality,

urbanisation, gender discrimination and social cohesion have been

shown to increase the susceptibility of individuals to the virus

[barnett and Whiteside 2002].

What does susceptibility mean? Susceptibility refers to any set of

factors determining the rate at which an epidemic is propagated. In

epidemiology, the concept of risk is used in a strictly statistical

sense. A risk group is defined as all those individuals belonging to

a set with the characteristic that is associated with increased

relative risk. For example, if a study shows that sex workers, lorry

drivers and those that have a high level of education and travel a

lot have markedly have high levels of infection than a general

population, these may be described statistically as `high-risk

groups'.

However, the popular perception of the notion of risk presents

problems, which is being all too easily translated to less precise

vernacular use of the term. Thus the risk in this case is no longer

used to just describe the odds of getting affected but rather the

risk `they' pose to `us', unabashedly ignoring that the riskiness of

the behaviour is a characteristic of the environment rather than of

individuals or particular practices.

Let us see how India fares on the variables that have driven the

epidemic in Africa. India is a poor country with 44.2 per cent of its

population living below the international poverty line ($1 a day) and

is categorised as a low-income food deficit country by FAO, based on

the per capita calorie intake (per cent below recommended dietary

allowances (RDA)).

In fact, India ranks 127 out of the 175 countries in the Human

Development Index (HDI), which is a measure of country's achievements

in terms of life expectancy, educational attainment and adjusted real

incomes. South Africa ranks 111 and Botswana ranks 125 – two

countries with high HIV prevalence rates. India is rapidly urbanising

with 28 per cent of the population living in urban areas in 1999 with

the projected proportion increasing to more than 1/3rd of the

population by 2010 [uNDP 2003].

Most of these are migrant workers with families in rural areas. A

study of migrant workers in Mumbai (where 46 per cent of workers are

migrants) and Delhi (where 65 per cent of workers are migrants) found

that men living with family were half as likely to report visiting

commercial sex workers as those not staying with families. This means

that the virus not only flourishes in urban areas, but that it would

also travel to rural areas and other states [Hira S et al 1998; also

Bhattacharjee et al 2000].

With India's deeper insertion into the new globalisation and the

market reaching into ever more remote parts of the country, the

pressures to migrate, the opportunities to seek work and the social

and economic niches in which the virus may lodge continue to

increase.

As far as gender discrimination is concerned, no Indian needs

introduction to the Indian preference for sons over daughters. The

most outrageous manifestation of such a preference can be seen in the

overall ratio of men to women (1000:933 according to 2001 Census),

higher rates of illiteracy and under nutrition in girls than boys.

Such differential and inferior treatment of girls contributes to

inferior access to economic opportunities and resources for women

leading to their economic vulnerability. Economic dependency makes it

less likely that women will succeed in negotiating protection, and

less likely that they will leave a relationship that they perceive to

be risky.

Some would argue that Indians' complacency regarding their uniqueness

in resistance to the epidemic comes from some perceived superiority

of sexual norms and adherence to monogamous marriage institutions. If

this is so, then an understanding of how female and male sexuality

can potentially fuel the epidemic, requires questioning just those

norms – a painful process in a deeply conservative society.

Studies in India and Africa by Washington, DC, based International

Centre for Research on Women (ICRW), identify such critical gender-

and sexuality-related factors. Gupta (2000) from ICRW summarises

these factors as follows. First, the culture of silence that

surrounds sex that dictates that `good` women are expected to be

ignorant about sex and be passive, makes it difficult for women to be

informed about risk reduction or, even when informed, makes it

difficult for them to be proactive negotiating safer sex. Second, the

traditional norm of virginity for unmarried girls may paradoxically

increases young women's risk of infection because it prevents them

from seeking information regarding protection out of fear that they

will be thought to be sexually active. Third, because of the culture

of silence that surrounds sex, accessing treatment and services for

sexually transmitted diseases can be highly stigmatising for

adolescent and adult women.

Given such norms, it is not surprising, that studies reveal

surprisingly few women have heard of AIDS [Chatterjee 1999; NACO

2001]. A survey of 30,000 married women in 13 states (including the

high HIV prevalence states) showed that only one in six women heard

of AIDS and even then with a very poor knowledge of its transmission

and prevention [balk and Lahiri 1997]. Fourth, domestic violence and

threat of abandonment act as significant barriers for women who have

to negotiate condom use, discuss fidelity or leave relationships that

they perceive to be risky. The ICRW study showed that a staggering 40

per cent of women in monogamous marriages face domestic violence with

about 65 per cent of them reporting psychological abuse as well.

Studies also show that men that engage in extra martial relationships

to be 6.2 times more likely to abuse their wives physically [Gupta

2000].

The Indian norms for masculinity condone experimentation, having

extramarital affairs and sexual domination over women, thereby

increasing their own risk as well as the risk to their partners.

Studies in India reveal a large proportion of women in monogamous

marriages are increasingly susceptible to HIV [Hawkes and Santhya

2002; Newmann et al 2000 Redkar and Redkar 1999 and Gangakhedar et al

1997].

The African experience tells us that conflict and lack of social

cohesion can determine the susceptibility of individuals, communities

and societies. Indians could take comfort in India's social cohesion

and strong kinship system. However, Indian cultures seem to have a

substantial capability to disregard and stigmatise those whom they do

not perceive as `us', doing this in everyday life with homosexuals,

prostitutes, lepers, people belonging to the `lower' caste, `barren

women', women that can't bear sons, and now those living with

HIV/AIDS.

Despite the long and strong Indian liberal tradition among many of

India's educated elite, it seems that these prejudices are now more

likely to be fed in the era of market and religious fundamentalism.

Engagement (or failure to engage) with the HIV/AIDS epidemic takes

place in this cultural and political environment.

Current Response and Gaps

The print media and the NGO community (human rights activists and

lawyers in particular) played a pivotal role in bringing HIV/AIDS-

related issues to the forefront. The television and radio largely

ignored the issue. Senior policy-makers, academics, politicians and

the medical community at large remained indifferent to the social-

economic underpinnings of the epidemic even as the experience from

around the world has been becoming apparent. In an epidemic that is

difficult to see and hard to measure, both the number of people

affected and its impacts in the long-term, the response was at best

glacial. The eventual actions characterised by a predominant concern

with clinical-medical issues and with individual behaviour change

ignores three particular issues:

– The well known and continuing link between poverty, inequality (in

wealth and gender) and disease.

– Recognition that while immediate focus on prevention is correct and

conventional response, it is short term; we have to recognise the

existing structural inequalities that have historic roots fuel the

epidemic.

– Failure to recognise that a lentivirus, with long incubation

periods, that would have a long-term social and economic effects.

– Attempts by women (and other socially disempowered individuals) to

change individual behaviour, like insisting on condom use, can be

dangerous if norms are not addressed.

There is an inherent contradiction in the continued denial of the

epidemic and its magnitude and the urgent actions instituted with an

intimate certainty that there is no time to waste. In a firefighting

mode, the government with its medical staff, paramedical workers,

social workers and the NGOs launched into prevention projects without

a deeper understanding of the circumstances liable to prevent people

from changing their behaviour.

The basic social unit, to which the strategies are addressed to, is

once again, the individual, rather than the couple, the family or the

community, which shape the norms. Initially the target was a

homosexual man, a man injecting drugs, truck driver or a woman sex

worker. Such interventions blatantly ignore that societies are not

mere agglomerations of individuals, but dynamic entities with rules

and norms transcending individuals.

Therefore, it is not surprising that the latest results of the

behavioural surveillance surveys by NACO reveal the ineffectiveness

of such conventional prevention efforts. The study showed that

awareness and knowledge of HIV remain low in rural areas and among

women. Even in states where the awareness is high women reported low

condom use, an indication that they may not be able to negotiate safe

sex with their partners [NACO 2001].

An example of disregard for such enabling environments, a

prerequisite for sustained behaviour changes, is the lack coherent

and constructive capacity building of the medical workers. The

medical community has been one of the worst offenders routinely

violating confidentiality, stigmatising and refusing to treat those

tested HIV positive [bharat et al 2001; Kashyap 2002].

Their inadequate training on issues related to HIV/AIDS has only

added fuel to the fire, feeding into mass hysteria. Research findings

reveal that the nursing students and senior nurses feel uncomfortable

talking, shaking hands or being in the same room with an HIV positive

person [Kumar A et al 1999; Datta et al 1997]. These studies reported

not only inadequate knowledge regarding prophylaxis against HIV but

also discriminatory attitudes among about 1/3rd of even the senior

nurses surveyed. About a quarter were unwilling to provide care to a

person with HIV. Another recent study of anesthetists and surgical

residents in a Mumbai hospital by Chongle et al (2002) reveals

surprisingly poor knowledge of post-exposure prophylaxis against HIV.

The second phase of National AIDS Control Programme (NACP) is

planning to provide one-day training to the heads of medical colleges

in HIV/AIDS preventions and management [NACO 2001].

The police too have been on the forefront of violating the rights of

those they are supposed to protect [Human Rights Watch 2002]. Meena

Seshu, a human rights activist working in Sangli, Maharashtra says

that the aid workers working with men having sex with men or

commercial sex workers are accused of promoting prostitution.

The continued abuse of sex workers and those working on the issues of

HIV/AIDS vouches for the ineffectiveness of the `sensitisation and

training programmes' and the utter lack of commitment by the

government to promote human rights.

Research studies, albeit few in India are mostly based on public

health model and are largely related to clinical and medical issues,

issues of prevention, access and treatment. Even the very few studies

outside the bio-medical sphere have mostly been limited to

description of socio-demographic and to some extent clinical profile

of the individuals; and their knowledge and attitudes (very few on

practices) of population sub-groups such as sex workers, students,

teachers, nurses and so on [for example, Ambati et al 1997; Agarwal

et al 1999; Bhattacharjee 2000; Lal 2000; et al 2002].

While these findings are important for informing responses, they

provide only fragments of information and are not adequate to inform

comprehensive and cogent action intended to change the status quo.

For example, what are the needs, constraints and capacities of

various population groups, say migrant workers, homosexuals or

housewives or commercial sex workers? What is the evidence base for

current interventions?

What is the political economy of policy formulation and execution?

It is not possible to overstate the serious lack of involvement of

Indian scientists in an interdisciplinary inquiry into the epidemic.

This could and should inform action based on sound understanding of

socio, economic, cultural and political underpinnings that drive the

epidemic. In a country with a rich intellectual and academic

infrastructure, this relative absence is disturbing.1

Prakash (2000), in her excellent review of India's HIV/AIDS epidemic,

states that the paucity of research from India may due to

(1) governments denial that that India has an indigenously generated

HIV/AIDS problem.

(2) discouragement of foreign researchers working on these issues.

(3) enormous population and cultural variations that pose special

problems in representative sampling and hence, generalisations.

While there is some research in India, regarding the factors that

lead to increased susceptibility there is little on the evidence on

its impacts.

Just as not all people or communities are susceptible to HIV

infection, not all will be affected by the epidemic in the same way

or to the same degree. Vulnerability describes those features of a

society, social and economic institutions or processes that make it

more or less likely that excess morbidity and mortality associated

with the disease will have negative impacts.

The impacts are not neutral. The social and economic and cultural

environment determines the nature and severity of impact and how

people respond to such impacts. The varying impacts are felt over

different periods of time.

The socio-economic impact can be felt at household, sectoral and

macro levels. There is mounting evidence from around the world to

indicate that individuals and households are economically affected

and poor households are more vulnerable to the impacts than

economically stable households. The evidence also points to women

being not only more susceptible to HIV, but also more vulnerable to

its impacts than men. To date, only a handful of studies in India

examine the socio-economic well-being of the households affected by

HIV/AIDS [basu et al 1997; Gupta 1998; Bharat and Aggleton 1999].

These studies show severe constraints faced by the affected

households mainly due to reduced income and increased health

expenditures. Bloom and Mahal (1997) predict that economic costs of

AIDS will be felt not by nations, but rather by communities and

households. Basu et al in fact report that private health expenditure

of households is four to five times higher than the state

expenditure. They also reported reduced consumption of milk, meat and

eggs as a result of increased health care expenditures. Gupta (1998)

shows that between 10 to 30 per cent of the annual income of an

individual may be spent on treatment of illness. These few studies

were in urban areas and we still know next to nothing about the

epidemic in the rural areas. We need to know more about such

household response mechanisms in diverse settings to respond with

effective mitigation strategies. For example, how do families deal

with an adult death? What are the consequences of multiple deaths?

What are the implications of adult sickness and death for children in

the household? What is the nature and magnitude of gender

differential of the epidemic? What are the implications of HIV/AIDS

for social cohesion? Can orphans and other potential orphans expect

to rely on our highly valued kinship system? These basic questions

remain unanswered.

It is expected that household level impacts then translate to

sectoral level impacts. Indeed evidence from Africa shows HIV/AIDS to

affect the agriculture, health, and education sectors negatively.

African businesses have reported loss of competitiveness due to

labour loss, reduced labour productivity and increased cost of

production.

Studies of industrial labour conducted in mid-1990s in Madras, Delhi

and Mumbai and of transportation workers in Bengal and in Indian

railways confirm the 20-25 per cent of workers indulge in multi-

partner sex with less than 5 per cent of them reporting condom use

[Hira et al 1998]. These studies also found that it is not just the

cheaper labour force that engages in risky behaviour but also those

earning higher incomes, indicating potential labour productivity

losses. There is clearly a potential for severe impact on both public

and private sectors in India. Once again, data regarding such impacts

is sparse to non-existent.

International corporates and economists looking at India's

performance from the outside warn that the spread of the epidemic

could be a stumbling block in the country's economic growth

projections. Sachs stresses the need for health to be

factored into calculations that industries make when they chart out

their growth plans. In a 1996 study of seven Indian companies in

Mumbai, [Hira et al 1998] observed that none of the companies had any

written policies or guidelines regarding employees with HIV/AIDS.

None of the companies admitted altering their hiring, promotion or

firing policies on the basis of their concerns about HIV/AIDS

workforce and felt that they would potentially get more involved if

many more of their employees get infected with AIDS adopting a `wait

and see' attitude.

A more recent UNAIDS study shows that proactive intervention by the

business sector is still rare. HIV positive workers did not disclose

their HIV/AIDS status for the fearing of discrimination, job loss and

loss of benefits in the absence of a clearly defined corporate policy

on AIDS. Most companies in the study reported not having any written

HIV/AIDS policies as no HIV/AIDS cases were reported [bharat et al

2001].

Multinationals in India and a few large Indian cooperates such as

Tata Group, Reliance Industries and others have recently started

instituting HIV/AIDS related work place policies. Corporates are

forming coalitions at the national and international levels to tackle

the issue. Such initiatives have long been overdue. Considering that

the most susceptible and vulnerable population works in the small-

scale and informal and unorganised sectors, much more remains to be

done. Finally, these household and sectoral level impacts translate

to macro-effects on the economy, affecting GDP growth rate. Studies

indicate high costs to the economy associated with increased medical

costs and loss of labour productivity [Pandav et al 1997 and Anand et

al 1999]. Anand et al indicate that these costs could be as much as 1

per cent of GDP.

While it is easy to shift the burden of action or inaction to the

governments, and researchers, the locus of change has to be

individual, the couple, the society, and the people of a nation.

People are not passive members of the society, but active

contributors to its norms and values. We do so by either passively

accepting its norms or actively and constructively questioning and

reshaping them. Within the bounds of their unequal access to

education, rights, material and cultural goods, people must be active

agents of change, reflecting on lived realities. All Indians are

potentially affected by this `looming epidemic'.2

To be active agents of change requires a capacity to talk things

over, for example, couples to discuss about issues of power; parents

to discuss issues relating to sexuality, ethics and human rights with

their children; families and communities to discuss about their

values and norms; work places to talk about protection and support.

It requires an igniting and unprejudiced mind prepared to introspect,

listen and constructively question to seek solutions.

However, not all Indians are in a position to respond. As long as a

large portion of the population is not in a position to defend their

rights (for example, freedom from sexual abuse and abuse by the

police, discrimination from doctors) and to restore their dignity

(women able to control their sexuality) any individual action will be

counterproductive at best and dangerous at worst. Politicians, civil

servants, the educated, business and community leaders need to take

responsibility to promote the rights of the vulnerable and lead the

fight against HIV/AIDS.

As the world's largest democracy, it is reasonable to expect that

India should show the way forward in Asia's response to this epidemic

based on sound framework of ethics, human and legal rights and not

lag behind others.

In a country mushrooming with universities, graduates and a growing

middle class, an indifferent lifestyle based on `sub kuch chalta hai'

(everything goes) will not do. Indifference to the problem of

HIV/AIDS will alter the course of India's history.

Address for correspondence:

s.kadiyala@...

Notes

[The views expressed in this paper are those of the authors and do

not necessarily reflect the views of their host institutions.]

1 Although there are some notable and honourable exceptions, for

instance, work by Indrani Gupta and Ajay Mahal has been important

beyond India.

2 The title of a prescient book published in the 1990s – Godwin, P,

The Looming Epidemic: The Impact of HIV/AIDS in India, Mosaic Books,

New Delhi, 1998.

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