Africa wrestles with AIDS stigma

Official's death stirs debate

By John Donnelly, Globe Staff, 9/28/2003

NAIROBI -- During an international AIDS conference, panelists called repeatedly for fighting the stigma associated with the incurable virus. But the appeals had a hollow ring. A senior Kenyan official had died recently; the cause was thought to be AIDS, and no one in the government was saying a word.

Many activists and officials attending the 13th International Conference on AIDS and Sexually Transmitted Infections in the Kenyan capital last week said in quiet discussions in the corridors and halls that the silence over the death had reinforced the stigma surrounding AIDS.

Many also said they feel that disclosing the cause of death is a personal decision that should be made by family members. Still, they lamented that a public official had not come forward and helped focus attention on the problem.

"After all these years, one of the main reasons behind the slow response to AIDS is the stigma and shame associated with it," Peter Piot, head of UNAIDS, said in an interview. He said that he knew of the official's death only through secondhand reports and that it seemed sadly familiar. "There are too many politicians who have HIV and hide it. But you can't out a politician."

Piot said that at an AIDS conference in Africa held four years ago in Lusaka, Zambia, an equally delicate scene unfolded. A high-ranking government official had died of AIDS-related diseases during the meeting, he said. "They buried him while we were there," he added. "And the president didn't say a word. There was no mention whatsoever."

Over the last quarter-century, numerous prominent Africans have undoubtedly died of AIDS-related illnesses because of the high rates of HIV in many countries, Piot and others here said. An estimated 30 million people in Africa are infected with the virus.

But only several infected cultural or religious leaders have disclosed their status, and still fewer political leaders have talked about the toll of AIDS on their families. Two notable exceptions are South Africa's Nelson Mandela, who said a relative had died of AIDS, and former Zambian president Kenneth Kaunda, who said his son, Masuzyo, died in 1986 of the disease.

Several AIDS behavioral studies show that the stigma surrounding the disease sets up numerous roadblocks: Many people don't get tested, seek counseling, or receive quality care because of the fear that others will learn of the infection.

Many health specialists say that until discrimination against AIDS victims is significantly reduced, huge numbers of those infected with the virus in Africa and elsewhere will continue to avoid testing, putting themselves and others at great risk and hampering the fight against the disease.

Two Kenyan newspapers, the East African Standard and the Daily Nation, reported that the senior official had been under the care of an AIDS specialist in London.

The official's family said he died of a heart attack, not AIDS. Since the beginning of the year, government spokesmen have given several reasons for the official's hospitalization, saying he had renal failure, gout, and pancreas problems. Given the absence of confirmation, the Globe has decided not to identify the official.

Nearly two weeks ago at an AIDS conference in Chicago, another London-based doctor told a gathering of mostly US physicians that many African leaders have sought treatment for AIDS in London and that a senior official from Kenya had recently died of AIDS, said Stephen H. Lewis, special adviser on AIDS in Africa for UN Secretary General Kofi Annan.

Just before the Nairobi conference, members of a planning committee discussed naming the event after the late official to highlight the breadth of the AIDS problem, according to two people who were at the meeting.

The conference chairman, D. M. Owili, angrily dismissed the idea, the two people said. Owili could not be reached for comment late last week.

Gideon S. Konchella, Kenya's assistant minister of health, said people had no business delving into the death. "I have not even bothered to find out how he died," Konchella said during a break in the conference.

Those who have declared publicly that they have AIDS say their reception has hardly been welcoming.

Achieng Odhiambo, 35, an HIV-infected mother of two children, joined three others with the virus at a demonstration last week in front of the conference hall. They were protesting Kenya's slow rollout of life-extending antiretroviral medicines; the government announced last week it would treat 6,000 people. More than 2 million people have the virus in Kenya. Odhiambo lost her husband to AIDS, and fears she will soon die because she cannot afford the medicines on her $130-a-month salary. But she said she does not regret her decision to disclose her status: "I did something. I didn't just stand by. I'm concerned not just about myself, but also for my children, and for the future of my country. People should know." John Donnelly can be reached at donnelly@globe.com