Information helps people with AIDS live longer

By Chris W. Green

JAKARTA (JP): All our ignorance brings us closer to death. Although this quotation goes back more than 60 years, it is surely applicable to people with AIDS (PWAs) today. Studies have shown that ill-informed PWAs die sooner than those who understand the condition and its treatments. Similarly, PWAs cared for by experienced and knowledgeable doctors live longer -- by as much as more than one year -- compared with those whose doctors know little about the condition.

But worse, ignorance is a breeding ground for discrimination. People who don't know their rights, or worse don't know that they have rights, are easy to discriminate against. We all have experience here in Indonesia of bureaucrats who exploit the public's lack of knowledge of their rights.

Often we assume there is no legal basis for what we consider should be our rights but this is by no means always correct. And it is certainly not true in regard to the rights of PWAs.

Indonesia was one of 41 countries that signed the Paris Declaration at the AIDS Summit there exactly four years ago. Among other statements, this binds the signatories to "... protect and promote the rights of individuals, in particular those living with or most vulnerable to HIV/AIDS", and to ensure equal protection for them under the law.

But international declarations are "two a penny", you may say. How does this actually affect PWAs in Indonesia? We frequently hear from journalists and others who should know better that these good words are not backed up by national legislation; that there is no Indonesian law covering discrimination against PWAs.

The well-kept secret is that rights of PWAs are clearly supported by the Indonesian National AIDS Strategy. Amazingly, this goes back to June 1994, when it was signed into law by the coordinating minister for people's welfare. (The full English text of the Indonesian National AIDS Strategy is accessible on the World Wide Web at http://www1.rad.net.id/aids/strateng.htm)

While this document is not perfect (what law is?), it does cover the main points. For example, one of its three stated objectives is to "...minimize personal suffering, as well as the social impact of HIV/AIDS throughout Indonesia". And among nine basic principles, it not only confirms the right of every person to accurate information but it also explicitly requires that PWAs be treated without discrimination.

The pity is that few PWAs -- or, indeed, organizations supporting PWAs -- are even aware of the existence of this document, let alone its contents.

Ignorance that certainly brings them closer to death ...

Of course, as we all well know, there is a vast gap between legislation and implementation. Part of the problem is that the concept of discrimination is not well understood by many people in Indonesia. This was brought home to me in a meeting several years back in which we were trying to translate the theme for the Candlelight Memorial. It referred to "discrimination", which we translated (naturally) as diskriminasi.

But one of the groups from outside Jakarta asked us what this term would mean to the average person in Indonesia. If people do not expect to have rights, how can they feel discrimination?

Of course, this problem is by no means limited to AIDS -- the feudal background makes this a widespread challenge, and those in power have little incentive to change this. But AIDS activists can make a difference. We can and must disseminate correct information -- directly or through the mass media. We can introduce concepts -- and we can defend those whose rights have been ignored.

One innovative response to this is the current weekly television series called Kupu-kupu Ungu (The Purple Butterfly, Tuesday, 9:30 p.m.) on RCTI. Produced by Nano Riantiarno and funded primarily by the Ford Foundation, each week this provides a vignette of the experience of a doctor in Indonesia specializing in AIDS. In a dramatic format, it attempts to uncover the myths associated with HIV and AIDS, and to reinforce the rights of PWAs.

Each episode is loosely based upon real events which have occurred in Indonesia -- for example the case of parents who refuse to let their children attend school with an infected child, or the case of a hospital which attempted to prohibit one of its doctors from treating PWAs.

Although soap operas in the 1990s frequently include a character with AIDS, this is a new approach, and it will be interesting to assess its success following the end of its run in December.

This program highlights the fact that, while some discrimination against PWAs is based upon moral judgments, much also stems from ignorance -- and the fear engendered by this. If nurses -- and, indeed, doctors -- do not know how AIDS is spread and how it is not spread, they will naturally be afraid and prefer to avoid treating PWAs.

In such cases, the solution is not to invoke the law; it is to provide information so that people can protect themselves, and feel comfortable in supporting people with the condition.

Several years back, I asked the matron of a hospital in Jakarta why most of the staff were so supportive of PWAs who were treated there. She told me that when the first person with AIDS was admitted, many of the staff were very concerned -- and afraid. So she started a crash education campaign, that involved not only medical staff but also cleaners, caterers and administrators. Once they were aware of the real situation, the problem all but disappeared.

And so we come full circle back to the disease of ignorance and its treatment: information. Of course, we can never force anyone to take medicine but we do need to make sure that it is accessible to all.

Information is the cheapest form of treatment and is one we can all work together to offer to those who need it.

The writer is editor of Warta AIDS news bulletin.