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.