AIDS patients' confidentiality

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