AIDS : Stigma the core issue !

[Guest guest]

Aid in the time of epidemic

The Economic Times 12th February, 2002-New Delhi

Government organisation and NGOs are trying to break down the stigma associated

with AIDS but that is only the tip of the iceberg, write Sudhir Mulji and

leen Multi

This month, the Delhi State AIDS Control Society is organising a family health

awareness campaign. Medical advice and check-ups are being provided free in nine

different health centres. The government, NGOs and many international

organisations have, from time to time, published reports on AIDS awareness, yet

far too few people have really comprehended the horror of what could actually

happen and what is already happening in India as a result of the HIV virus.

Since the epidemic is at a nascent stage, the thoroughness of these reports

tends to have the effect of lulling us into the feeling that things are under

control, that wise measures are being taken and that there is no need to panic.

Those who think in terms of money are particularly prone to this attitude for

the total amount that has been allocated to deal with the problem is indeed

impressive. But we should pause and consider whether all this is having the

desired effect.

For starters, let us look beyond the paper the reports and recommendations are

written on. We should listen to those who are actually involved, to the patients

themselves and their families, and to the doctors who are treating them to those

who know the real story because they are living with it. We should parhaps

contrast what is being done here with AIDS awareness campaigns in other

countries like, for instance, the open and direct approach that has been so

effective in controlling the spread of the virus in Thailand. Or, for that

matter, what is happening in Africa where families and communities are being

decimated and livelihoods destroyed. Some people feel it is different here in

India since the central government is giving directives and governments of

states like Tamil Nadu and Maharshtra are reportedly taking serious measures.

But are the right measures being taken?

In most Africa countries, people are facing up to what is happening. The

epidemic cannot be ignored. Yet many communities, or what is left of them, are

rallying round in a remarkable way to make the best of what remains. The

catastrophe of AIDS has actually brought communities together to help victims

and to spread information about how to combat it.

In Inida, HIV is " taboo " and when talked about at all it tends to be either in a

sexually jocular way or in hushed tones. Since relatively few people of the

total population have had their blood tested, the estimates of the numbers of

those infected with HIV can be little more than guesses, and projections into

the future are even more suspect.

To what extent should we rely on the experience which international

organisations have gathered from other countries? Or again, how much planning

should be left to NGOs and to the doctors and nurses who must do their best

whatever decisions are come up with?

It may well be best for these questions to remain unanswered, as what proves

successful is often a combination of different approaches. Besides we have

become all too aware here of the pitfalls central planning can fall into.

This epidemic is like an iceberg with only its tip showing. We cannot tell what

lies below the surface. This is because it may take several years for AIDS to

become full-blown. During that time there is no way of telling whether a person

has been infected unless he or she decides to have a special blood test.

Meanwhile there is the great danger of the virus being passed on to other

individuals.

Another reason why so much of the epidemic lies hidden is the stigma it carries.

People are even more scared of it than of leprosy because they associate AIDS

with promiscuity or homosexual behaviour. Families as well as individuals

conceal the illness as long as they can out of a combination of fear and shame.

It is essential to break down this stigma, because of its consuquences for

public health and the population as whole. With AIDS it is sadly not a question

of allocating resources between prevention and cure, for there is no cure. All

medicines longer. And, for this, sympathetic care is quite as important as any

thing to happen to somebody who has contracted HIV. Health workers must shoulder

much of the burden of caring for AIDS patients and see to it that they get on

with their lives for as long as possible.

It is up to them to prevent mothers passing on the virus when they give birth

and through breast feeding, so they have to make sure that suitable milk is

available and can be afforded. CIPLA's achievement in making cheaper drugs

available is to be welcomed but at the same time it is essential for doctors to

be made aware of the dangers of using them unwisely and causing the virus which

is very liable to mutate to take new forms. Family health awareness campaigns

are important but they are a tentative approach to a problem that must be

squarely faced. It is largely a matter of communication, of making sure that as

many people as possible are informed about the danger and the precautions they

should take to protect themselves, their families and anybody they are intimate

with.

This is a big ask simply because it concerns people not only all over the

country but also with different levels of education and different customs and

mindsets. It includes schoolchildren, adolescents who are forming their ideas

about sexual norms, as well as their parents who may have prejudices. It is not

enough to concentrate on so-called " at-risk groups " such as exploited sex

workers and truck drivers.

The problem of HIV/AIDS is best not seen in isolation. Learning about the

infection should be part of health education as a whole. It is one thing to

ensure that condoms become the norm and are readily available everywhere but

people also need to understand why they are necessary.

Most NGOs have realised that AIDS awareness is best approached as part of

general health through women's groups. It is here that most of the progress is

being made, but it takes time for customs to change. Unfortunately the virus

will not wait. At the same time, there is always another slice of the population

reaching the age when they need to learn how to take necessary precautions to

prevent contracting AIDS.

The AIDS crisis is also an opportunity for improving health care standards

throughout India. The resources that have become available will surely be of

help in other areas.

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Dr.Jagdish Harsh ( jharsh@... )

Director of Administration and Operations

François-Xavier Bagnoud (INDIA) ( www.fxb.org )

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