LUSAKA, ZAMBIA-In Zambia, AIDS is everywhere, yet nowhere. One in four Zambians lives with the disease, but few will admit that their friends and relatives have died of AIDS. Instead, code-words like “tuberculosis,” “malaria” or “pneumonia” are whispered quietly, with a knowing look. The mission of NGOs working in Zambia is no longer just lobbying for access to treatment: to fight AIDS in Africa, they must first overcome the stigma of HIV/AIDS. At the Centre for Infectious Disease Research in Zambia, Idah Mukuka has created a community outreach department to do just that.

“Social isolation has killed many people living with AIDS in Zambia, because once they are discriminated against, they are too scared to access treatment. [As a counsellor,] I met women with black eyes who were beaten by their husbands because of their HIV status and people who were told by their churches to stop taking drugs because AIDS was a punishment from god,” said Mukuka.

At 35, Mukuka is a widowed mother of three, whose life has been shaped by HIV. “I lost my husband in 2000 and in that same year watched my brother die of AIDS. When I found out that I was HIV positive in 2003, it was very traumatic. I immediately thought of [my husband] and having seen my brother die of AIDS, I thought I would die like him.”

Rather than accept defeat, Mukuka drew inspiration from the people she met who were working to overcome the virus, including Stephen Lewis, the UN Special Envoy for HIV/AIDS in Africa. “As soon as I met Stephen Lewis in 2003, during his visit to Zambia, I knew that this man was very passionate about AIDS,” said Mukuka. Drawing on Lewis’ vision, Mukuka created the CIDRZ peer education and support group program. Each week members of the group, who come from some of Lusaka’s poorest communities, gather at clinics to share their stories of survival and of loved ones lost.

“I didn’t want to accept that I had AIDS, but after my first husband and baby died of AIDS, I knew that I was really sick” said Mable Namumba, who joined the ‘Twabalumo'(we are one) support group after testing positive for HIV 3 months ago. “I was afraid to accept my status because [the people in my community] told me it was witchcraft and Satanism which had taken my family and made me sick,” said Namumba.

Through her involvement in the support group Namumba has learned the importance of adhering to antiretroviral treatment and an active healthy life. “I am open with my status, because I know more now and I want to help other people living with the disease,” said Numumba who carries pamphlets with HIV information in her pockets, determined to share her new found knowledge with everyone in her community.

Constance Mudenda, a CIDRZ peer educator who tested positive in 2004 and has already lost three children and a sister to AIDS, recalls her own struggle to find information on the disease. “[When] my sister fell sick, I helped take care of her, she was really sick the day she died. I was told after she died it was AIDS but [at that time] I still thought AIDS just couldn’t happen. I didn’t know much about [AIDS], all I knew was that one, it was a shameful disease and two, it can kill you” said Mudenda. Since joining the CIDRZ support group, Mudenda has been committed to educating and counselling her community, and is employed by CIDRZ as a peer educator, dispelling myths about the disease.

“Just the other day there was an 85-year-old lady who tested positive at the clinic. She lost her husband 25 years ago and has never slept with anyone else. Although she has lost 5 children to HIV, it was hard for her to accept her status and take treatment because she did not believe someone like her, who has never been promiscuous, could have AIDS. After counselling [the lady] and telling her about my own experience living with HIV, she has accepted her status and is now on treatment” said Mudenda.

On World AIDS Day on Dec. 1st, the 1,566-strong CIDRZ support group take Lusaka by storm, touring the city in a van equipped with Voluntary Counselling and Testing equipment, and holding spontaneous drama performances and door-to-door campaigns to share awareness about HIV/AIDS.

Mukuka has seen the changes the outreach program has brought. “It makes me feel proud to see people who were once sick, seated next to me, brainstorming for what activity needs to be done or educational materials to use. These were people who were once in bed waiting for death.”

But World AIDS Day once a year isn’t enough, explains Mukuka. For AIDS awareness movements to be effective, she said, the West must commit unwavering attention to the AIDS crisis and invest in education campaigns at the grassroots level.

She recalls many misguided AIDS-relief programs, such as development projects that promote abstinence exclusively, despite the high rate of sex outside of marriage, or programs urging women to use condoms, even though few Zambian women have the power to negotiate sex. “It is not right for donors to drive the project, the people must drive the project because [they] can design programs that suite the needs of the people” said Mukuka.

As World AIDS Day activities gear up, Mukuka hopes the developed world’s attention will be on Africa. “[The developed world] needs to focus on AIDS if we want to overcome this disease. It is not enough to simply send money to the developing world; they need to understand how people here live,” said Mukuka.

Candice Debi, a former associate editor of The Varsity, works with the Canadian International Development Agency and the Coady International Institute in Zambia, implementing HIV/AIDS education, advocacy and outreach work. For the past four months, Debi has been living in two countries, the Zambia crippled by poverty and AIDS, and the Zambia that is rapidly developing and becoming a westernized global actor.