AIDS patients' confidentiality

Patient confidentiality is still a big problem in Indonesia. I can say this after having read Across the Archipelago on Dec. 22, 1999 about AIDS patients in Soetomo General Hospital in Surabaya. In that short news item, the name of an AIDS patient who had died was clearly mentioned. I don't know from whom the journalist got the patient's name, but I regret that it was made public.

Unlike any other disease, there is still a stigma and discrimination strongly attached to having HIV/AIDS. When people have a disease like cancer or a heart problem or even infectious hepatitis, they are warmly embrace by family and friends. But when somebody is known to be HIV positive, the consequences can be the opposite. HIV positive people around the world, including in Indonesia, have suffered from many forms of stigmatization and discrimination. They are thrown out of their home, disowned by parents, fired from their job, their belongings burned and their family isolated from the community.

That is why confidentiality has become important in HIV/AIDS cases. The ethical code of doctors instructs them to respect a patient's confidentiality even after the patient dies. Journalists have such principles, too. The National AIDS Strategy developed in 1994 clearly states that a HIV test should be done with informed consent, and its result should be confidential. However, the implementation these principles are poorly respected and monitored.

To breach the identity of an HIV positive person is very insensitive to what impact it might cause to his/her life. And more often, the HIV positive person has to face the consequences alone, without well-prepared support. One example: a couple in South Sulawesi is forced to live like nomads for almost three years because people in the community know who they are and are reluctant to rent their houses to this couple. Another couple was made to quit their jobs on the basis of bringing shame and causing fear among the other workers. All because of a breach of confidentiality.

Such violations will result in increased alienation of people with HIV/AIDS and those at risk of infection. People will not seek counseling, testing, treatment and support if it means facing discrimination and other negative consequences. The "iceberg" will grow bigger underneath, because that's where people are driven away to.

We are entering the year 2000. That means HIV has been among us, in Indonesia, for 13 years. Too many HIV positive people have suffered ethics violations, and their immune system is further reduced because of that. If we cannot provide them with the physical or mental support that they need, the best we can do is to protect them from discrimination. And by respecting confidentiality.

SUZANA MURNI

Chairperson