In Uganda, One Group Explores Ways to Support Victims and Their Families

THE AIDS Support Group in Uganda, a unique grass-roots initiative to fight the disease, is a tribute to both the open-mindedness of the Ugandan government and to the far-sightedness of one particular family. It all started when Kampala physiotherapist Noerine Kaleeba received the news that her husband had contracted acquired immune deficiency syndrome (AIDS), from which he eventually died.

Mrs. Kaleeba recalls that although her husband's family ``clung together and gave him a lot of support,'' neighbors often ``peeped in and would whisper about it.'' Sometimes the children would come back from school in tears, after being teased about their father's condition.

Kaleeba says they felt the need to set up the group - also known as Taso - to offer support to AIDS victims outside the immediate family circle.

With the assistance of two charities in Britain - Action Aid and World in Need - Kaleeba and a medical doctor from Kampala's main Mulago hospital received basic counseling training overseas. They returned, to start recruiting a team - many of whom had the AIDS virus themselves - to counsel those afflicted with AIDS, provide emotional support, and educate the public.

Nestor Banyenzaki, the group's public relations officer, who himself has AIDS, says this would not have been possible without the open-mindedness of the Ugandan government.

The AIDS epidemic in Uganda - one of the worst in the world - comes on the heels of 20 years of civil war and disruption. But Uganda's new ruler, Yoweri Museveni, has taken the problem by the horns.

Uganda was the first country in the world to set up a national AIDS program with the WHO. And this in a nation where it costs more to administer one AIDS test than is spent per head on health annually. The government has invited participation from all quarters.

Taso is the first AIDS support network in Africa involving HIV positive patients. After living through the experience of being ejected from the house of one brother and having the other forbid his children from playing with his own, Mr. Banyenzaki feels he is uniquely placed to counsel AIDS patients.

``We get people who come here crying, threatening to commit suicide, or blaming their spouses. I am able to understand their feelings very quickly, because I've been through all those stages,'' Banyenzaki says. Working for Taso also helps to keep him from going through frequent depressions that are common. ``I have learned that it is very important to take care of myself emotionally,'' he says.

But like many of Taso's more than a dozen staff members, Banyenzaki feels that more attention needs to be paid to material matters as well. His ailment, he says, prevents him from taking on a second job - a necessity for survival in the tough economic circumstances in Uganda. He is not saving any money for his family's future. Although his wife has not taken a test, Banyenzaki worries that she might also be a carrier.

``Presently all our funds go toward counseling,'' he says. ``But the time has come when we have to start helping families care for widows, orphans, and all the others affected by the death of a breadwinner.''