Fighting AIDS requires hard work

Fighting AIDS requires hard work

By Nafsiah Mboi

JAKARTA (JP): This is an open letter to all those concerned
about the threat of the Human Immunodeficiency Virus and AIDS to
Indonesians. It is intended as a clarification of my views and,
at the same time, as a plea for complete commitment in our fight
against the disease and for support for people living with
HIV/AIDS.

I have often been quoted, misquoted, maligned and praised in
the media in relation to the issue. People ask: "Actually, what
do you think?"

I know that journalists have to meet deadlines and fight for
space. They must write what they believe to be important. I am
afraid, however, that some of my principles have been
misunderstood.

There are three fundamental concerns which must be central in
our response to AIDS in Indonesia. I think all three are equally
important and that they are mutually supportive and
complimentary. I believe we must concern ourselves with people,
with information and with teamwork.

1. People: When we are talking about people living with
HIV/AIDS we must always remember that our concern is, indeed, the
person, not the disease. Furthermore, we should focus on (i) life
and living; (ii) rights and responsibilities; and (iii)
"togetherness" -- the sharing of responsibility. All of us will
die one day but that is not the focus of our life. Indonesia has
since its independence been concerned with improving the quality
of life for all people. We want everyone to have the best
possible quality of life.

I believe that no one should be excluded from that concern
today simply because they have the misfortune to be infected with
a particular virus, HIV. Experience around the globe has
demonstrated that, for people living with HIV/AIDS as well as
their care-givers (volunteers, professionals and family members)
the positive approach is far more useful than the negative. It
promotes and helps sustain more self-reliant action by the
positive person him or herself and those in the immediate
environment. It creates a climate of opinion in which it is
easier to address the difficult problem of discrimination, a
profoundly human issue in the war against HIV/AIDS. The cry from
positive people around the world "I want help to live
productively, not years of preparing for a dignified death!" must
be heeded.

We do not yet have, in Indonesia, any positive people who
choose to make a public stand, saying "I am positive. I want to
work with others in the war against AIDS." That is, in large
measure, because we have not yet been able to create a climate in
which those infected and affected can feel safe from social
isolation or personal attack. The loss is ours. We need the help
of positive people in our HIV/AIDS education programs. We need
their input in planning for the future. We need their energy and
their knowledge about what it is like to live with HIV/AIDS if we
are to serve others effectively in the future.

2. Information: Indonesia's national AIDS strategy, based on
ministerial decree number 9/KEP/MENKO/KESRA/VI of June 16, 1994,
sets forth nine basic principles to guide us all in our response
to the AIDS epidemic in Indonesia. The strategy was drafted
through a uniquely Indonesian process of consultation both inside
government and within the NGO community. It represents a broad
spectrum of opinion. Principle number five reads: "Every person
has the right to accurate information in order to protect him or
herself and others against HIV infection."

In Indonesia, "every person" embraces many millions of people
-- rich and poor, urban and rural, educated and illiterate.

The strategy commits us to try to get accurate information to
everyone, to empower them with information so they can live a
life safe from infection and, thus, participate in the national
effort to "win the war against HIV/AIDS". Furthermore, the
strategy makes clear that we, in Indonesia, have three important
approaches, each of which has a place in our national effort and
each of which will reach some of the people: family resilience,
the message of religion, and the "public health" approach (condom
use and STD control). In my view, then, it is incumbent upon all
of us who consider ourselves AIDS activists to understand and
communicate all three approaches. We do a disservice to our
combined efforts if we discredit each other. And we prevent
people from making their own free, appropriate and responsible
choice if we provide information on only one approach or another.

3. Teamwork: Again, we will not win this war unless we combine
our efforts into one, well-coordinated team. Our national motto
is "Unity in Diversity" and I believe that this philosophy and
practice must be adhered to in our responses to HIV/AIDS. Unity
in our principles, diversity in our action. Unity in our combined
efforts, diversity in our respective activities. Government and
community groups must stay in touch with each other -- sometimes
working side-by-side in the field, sometimes reaching out to
different groups in different ways -- but understanding the
importance of the distinct effort of each.

Government can help in legitimizing the "war", recruiting and
mobilizing vast numbers of people to accept and join the national
effort. Community organizations can assure equity in the effort
by working for and supporting distinctive groups which might
otherwise be by-passed, overlooked, excluded or blamed. The issue
is not one of "good" and "bad" people. The issue is diversity,
the richness of Indonesian culture and religion; variety in
values and lifestyles. Only through a team effort can we mount
and sustain the multi-faceted effort needed to slow and
ultimately halt the spread of infection as well as care and
support -- socially, spiritually, economically, medically --
those who are infected.

There will surely be people who say this is an unrealistic
message, that the world of government and the world of the people
are too different. My experience leads me to believe that, while
it is not easy, there is no other effective way to work. I
recognize that there are good people and bad, wise people and
silly, in both the government and the community.

But only if we work together can we achieve the critical mass
necessary to slow and ultimately overcome the ravages that
HIV/AIDS will bring to Indonesia.

The struggle in which we engage now will be long and hard. I
believe that we cannot win the war if we allow ourselves to break
up into separate factions to fight alone. In the case of AIDS, we
have one enemy -- HIV, the virus which leads to AIDS -- and we
must fight one war against this common enemy. Our national
strategy provides a clear framework to guide us all.

Unfortunately, although most have not yet been identified,
tens of thousands of Indonesians have already been infected with
the virus. All of those people have friends, family, co-workers
and neighbors who will be affected as time goes on. Let us work
hard now to develop the skills, habits, attitudes, and facilities
needed to provide them with the services they will need to
maintain a productive and satisfying life as long as possible. We
have no time to waste.

Dr. Nafsiah Mboi is a prominent AIDS activist, a pediatrician
and Master of Public Health who worked for 30 years at the health
ministry before becoming a member of the House of Representatives
three years ago.

Window A: We need the help of positive people in our HIV/AIDS
education programs.

Window B: In the case of AIDS, we have one enemy -- HIV, the virus
which leads to AIDS -- and we must fight one war against this
common enemy.