Sibulele Sibaca, a self-described daddy’s girl and sports afficionado, was inspired to become a representative of loveLife—South Africa’s national HIV prevention program for youth—because of her personal experiences as an AIDS orphan.
As a communications officer for the group, Sibaca works with young South Africans to reduce the infection rate among teens and young adults in the country and raise awareness about the risks associated with teen pregnancy and sexually transmitted diseases.
Having lost her mother in 1996 and then her father in 2000, Sibaca described the emotional toll caused by her loss at an AIDS panel discussion this month hosted by the Health Inequalities Program at Duke. “Had I been a horrible child?” she wondered. “Was there something that I was supposed to do?”
The unwillingness of other adults to reveal to her what had caused Sibaca’s parents’ deaths—probably due to the moral questionability that many people associate with HIV and AIDS—extended her suffering.
“Now I wasn’t sad,” Sibaca recalled. “I was mad—I was pissed off.” Because people knew that her parents were AIDS victims, Sibaca said she felt isolated and discriminated against in her own community.
Behind the bare statistics on AIDS lies a growing crisis: the plight of AIDS orphans, children who have lost their parents to the disease and have nowhere left to turn. As a part of an ongoing effort to raise awareness of the issue, the Health Inequalities Program at Duke recently brought leaders of grassroots organizations in developing countries to campus.
Duke stands out as one of the first universities in the U.S. to lead research in AIDS prevention. Since the mid-1990s, investigation into the disease has extended to classroom studies and student activism—efforts supporting the University’s stated goal to broaden its healthcare involvement on an international level.
As recently as August, the National Institutes of Health awarded a $4-million grant for the study of AIDS in Tanzania, where about 10 percent of the population is infected with HIV. Activist groups like Generation HIV and students in the AIDS and Other Emerging Diseases course have also worked to draw attention to the epidemic, which kills about five people every minute.
Topics at the discussion ranged from AIDS-related discrimination to the exploitation of female orphans to the struggle that local organizations face in terms of both social and economic instability.
“These are people that you would never hear from otherwise. They’re from grassroots organizations that often go without funding for years,” explained Rachel Whetten, director of the Health Inequalities Program.
Frehiwot Alebachew, executive director of the Save Lives Ethiopia Development Organization, highlighted the stigma that prevents many AIDS victims from seeking treatment, as well as a vast inadequacy of funding.
“Alone, Ethiopia cannot adequately address the human tragedy of children orphaned by HIV/AIDS,” she said. “Is this not a problem for all countries, though?”
Limited funds prevent local governments and NGOs from effectively obtaining supplies or establishing programs that help AIDS orphans. On a personal level, the responsibility for caring for orphans affected by the disease often falls on grandparents or siblings who survive on a few dollars a day at best. The financial problems often prevent potential caregivers from assuming long-term responsibility.
The stigma of AIDS is pervasive among victims as well as their children, regardless of whether or not the children suffer from the disease themselves.
Founded in 1990 by local women, Dafrosa Itemba’s KIWAKKUKI, Swahili for “Women Against AIDS in Kilamanjaro, Tanzania,” aims to accelerate women’s access to information on HIV and empower them with skills to fight HIV/AIDS in their communities. Itemba noted at the discussion that the information push is a response to the patriarchal tendencies in African culture that make it extremely difficult for women to obtain information on the disease.
The social stigma associated with AIDS increases people’s reluctancy to admit they suffer from the illness. KIWAKKUKI provides educational programs for the community and work opportunities for victims, thereby fighting discrimination and encouraging people to “go open” about their condition.
Inequality between men and women in terms of AIDS deaths and property rights is one of the most alarming aspects of the AIDS crisis, Itemba said. In some areas, up to two times as many men than women are killed by AIDS-related complications.
“Many women and children find themselves disadvantaged by an oppressive culture that doesn’t allow them to own property,” Itemba said. The situation is compounded when victims’ in-laws confiscate their land and prevent mothers from returning to their childhood homes, Itemba added.
“Together,” Itemba said, “we can give AIDS a human face, I think. Don’t you?”
Sibaca tells her story to help facilitate this goal, though her transformation from victim to AIDS prevention advocate was not the epiphany one might expect. “Why did I get involved in loveLife? Because I had nothing better to do,” she said. Hearing how her volunteer work with the organization had helped and inspired other orphans, though, convinced Sibaca to remain with loveLife. The support and encouragement she found within the organization made it possible for her to move forward with her life and help others do the same.
“I realized there was someone out there who had faith and trust in me when I didn’t have faith and trust in myself,” she said. “I’m still a statistic in my country, but it was my choice how to respond. I’m going to make it. And why? Because I can.”
Students who attended the panel were struck by the passion and dedication of the speakers.
“This is the fourth time I’ve heard them speak, but I still came tonight,” said Nissa Mohomed, a junior Health Policy Certificate candidate.
The event provided a more personal take on the AIDS crisis, as compared to the policy aspect that health students come to expect.
“This gave me a chance to put a face behind each number and see people working without the benefit of conventional resources,” junior Nazaneen Homaifar said. “I think Duke students often overlook their ability to help in these types of situations. These people have really turned their situation around.”
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