The prevalence of HIV infection in Indonesia is generally held to be low. Since the first case was officially identified in 1987, only 1146 people have been diagnosed with HIV, 293 of them reported as having AIDS. The latest estimate from WHO (June 1999) is that 250,000 Indonesians are infected, giving a prevalence among this 200+ million population of around 12 per 100,000 population. This figure is generally agreed to be in the correct range -- for sexual transmission of the virus. It is probable, however, that the total figure may be several times higher as a result of the sudden explosion of injecting drug use, with no surveillance and little outreach yet having been undertaken among this group.

Clearly it is essential to monitor the spread of HIV infection, to guard against complacency and identify those groups among whom HIV incidence is increasing. These actions are best achieved by serosurveillance but, unfortunately, the effectiveness of surveillance programmes has been patchy at best in Indonesia. Can case reporting make up for this?

Mandatory case reporting

Indonesia requires mandatory reporting of all AIDS cases diagnosed by doctors. Apart from the government's need to comply with WHO reporting requirements, it is difficult to identify any benefits from such reporting. Such figures add little to our knowledge of the overall course of the epidemic, since many people have AIDS -- and are dying from the disease -- without being diagnosed. Even if AIDS reporting were more effective, it is doubtful that it would add much to our response to the disease; AIDS reports come too late to allow timely planning.

Mandatory reporting of AIDS poses several drawbacks with few, if any benefits, either to public health or individuals. Although reports are supposed to be confidential, in practice this is difficult to guarantee. In addition, many public health officials hold that they have a right to know who is infected so they can take "appropriate action" to protect the community -- including requiring the positive person to report all their movements. Thus, to safeguard confidentiality and at the same time avoid the hassle of reporting, doctors may avoid reaching an AIDS diagnosis, easily done where CD4 testing to confirm a diagnosis is rare and expensive. This reluctance to report further contributes to inaccuracy in the statistics.

Notification of test results

Notification also raises challenges. The 1994 National AIDS Strategy requires that testing only be carried out in conjunction with pre- and post-test counselling and the client's informed consent. Thus, in theory, mandatory testing is outlawed for any purpose, although in practice this requirement is frequently ignored.

The legal definition of the age of consent also raises additional challenges, particularly since many of those infected are young. Below this age, it is commonly held that parents are responsible for notifying their children: parents receive the counselling and give their consent for testing. Parents are also deemed to have the right to inform their offspring -- or not. This may be appropriate for young children. But in Indonesia, the age of consent is 21 years for men and 18 years or married status (whichever comes first) for women. In practice, many doctors and officials maintain that parents are responsible for their children as long as the children are still dependent upon them. This means that, for instance, in the case of a 25-year-old man still living with his parents, and particularly if his treatment is being paid for by the parents, he will often have no say in his testing and may not even be informed of the result. In this type of situation, it is not clear who is responsible to inform him once he has reached the age of consent. In one case, an infected young man graduated from college and was already dating, but his parents had not informed him of his HIV status. In such cases, the doctors are often unwilling to force the issue and the result could be disastrous.

The explosion of injecting-drug use has brought with it a highly profitable "industry" of drug treatment centres, offering some form of detoxification and, in some cases, rehabilitation. As the threat of HIV and hepatitis C has become clearer, many centres are requiring HIV testing as a pre-requisite for acceptance. Pre-test counselling is often carried out in the form of a seminar. In addition, many of these treatment centres poorly understand the effect of the window period between infection and the presence of antibodies against HIV. Confidentiality is poorly maintained so that clients' peers immediately become aware of the results. The government does not regulate these centres and their unprofessional approaches are widely condoned. The drug users usually know no better and accept the conditions as normal.

Partner notification

Indonesia has no regulations regarding partner notification. During post-test counselling, infected people are sometimes encouraged to inform their partners, and in certain cases, to name them. Again, this is more common among the drug treatment centres, which sometimes feel they have a responsibility to notify such people. Natural indolence has, however, so far worked against such notification. With no clear understanding of the issues involved, or of the need for confidentiality, this is fortunate.

In a few cases people living with HIV/AIDS (PLWHAs) have voluntarily disclosed their status. With such small numbers of people knowing that they are HIV-positive, the general public has been little touched by the epidemic. The reactions of the few examples of communities becoming aware of PLWHAs living in their midst have varied, ranging from total support to total rejection. Not many PLWHAs are willing to take the risk of identifying themselves as infected. Thus there are few role models.

Death certificates

Regrettably, the challenges do not end with death. The death certificate is perhaps the one medical document that has wide circulation and several non-medical functions. As such, it is almost impossible to keep the death certificate confidential. The stigma associated with AIDS can also affect a family after death, at the time when they are least able to cope. Many families, therefore, request the doctor to state the cause of death as something other than AIDS; this is not difficult since the real cause is generally an opportunistic infection. In theory, the doctor should report separately through the AIDS reporting system, but having "falsified" the death certificate, s/he may be embarrassed to submit such a report. Thus, AIDS deaths are almost invariably under-reported -- even in the rare cases where they are correctly diagnosed.

There is little public debate or understanding of such matters in Indonesia. The general public is not concerned because, in a country where many live on the threshold of poverty, where few PLWHAs can afford even the basics of health care or positive living, AIDS just becomes one more problem in a life already full of problems. With such challenges in life, it is not surprising that few PLWHAs are willing to join advocacy efforts, even if they understand the issues.