HIV Positive Children in Zambia Increasing, Services Lacking

LUSAKA, ZAMBIA – On the days when her grandmother, Rose “Agogo” Banda, 70, is not able to sell sand, Elinate Banda, 13, takes her antiretroviral medication on an empty stomach.

Banda says she loves school, but she has never been able to attend regularly. Sometimes she cannot go when her uniform is too dirty because they have no soap. Other times, she is in the hospital.

Banda is HIV positive. Her mother, who has long been infected, transferred the disease to Banda and her twin sister in the womb. Her twin died as an infant.

Banda has three healthy older siblings, but Banda has been sickly all of her life. She takes antiretroviral medicine, a cocktail of drugs to combat her HIV infection, that she gets from the Chasanga government clinic. The medicine is free.

When Banda’s father died of complications from HIV when she was a toddler, her grandmother, Agogo, took responsibility for the girl.

Agogo, which means grandma in the local language Nyanja, lives in a three-room apartment in the Chasanga compound just north of Lusaka, the capital city. Habitat for Humanity, an international organization that builds affordable housing for people in need, built Agogo the apartment three years ago. Recently, she managed to secure a place for Banda at Shoulin Community School. Admission to a school is a rarity for HIV positive children in Zambia.

Although more than 95,000 children in Zambia are HIV positive—nearly one percent of the population—few programs exist that focus on care for children living with AIDS. Conversely, millions of dollars in government and international investments have been designated to support prevention and treatment programs for adults living with AIDS in Zambia, where one in five adults is HIV positive. For HIV positive children in Zambia, many who are AIDS orphans, a host of challenges remain. Access to education is limited and discrimination is common.

“Many children living with HIV are single or double orphans here. Most of the children living with HIV lack support from the community, NGOs and [the] government,” says Joseph Shimba of Shoulin Community School, where Banda was recently admitted.

Before Banda attended the Shoulin Community School, she went to Chasanga Basic School. But her classmates refused to sit next to her. Banda says she was taunted and laughed at for being sick.

“Instead of going to school, she would [disappear] and go somewhere. This went on for some time until I checked her books. I told the teacher about the stigma she encountered. The teacher told me he was going to punish those laughing at my daughter,” says Fidal Mbewe, 42, Banda’s mother.

When nothing was done, Agogo arranged for Banda to attend the community school closer to home. Despite the better location and the fact that Banda says she likes the school, the educational standards are significantly lower. The Shoulin School has limited facilities and does not employ any certified teachers.

“We have applied to different organizations for financial assistance, but there is no response,” says Shimba.

Despite her age, Banda says understands her health condition and the level of her family’s poverty. Everyday, she takes her yellow and white antiretroviral pills, a cocktail of lamivudine, stavudine and nevirapine. But the family often lacks food, so Banda is forced to take her medication on an empty stomach before school. “It’s Agogo who buys food for us,” she says. “If there is no food, we sleep without eating.”

“Many times Elinate has come to my office complaining about hunger,” Shimba confirms. “She tells me she is hungry and that there is no food at home, but we are just a community organization. We are not funded and we do not have funds to buy these children food.”

Banda’s mother says she was on a list to receive food from Mwezwine, a home-based care organization, but they have stopped distributing food. Triza Tembo, secretary of Mwezwine, says a lack of funding led the group to stop distributing food to people infected with and affected by HIV. “Because of this, many members of the group [have] stopped attending the meeting held once per week,” she says.

According to the Zambia AIDS Law Research and Advocacy Network, ZARAN, the neglect of infected children is a consequence of the AIDS epidemic.

“Children living with HIV [have] needs [that] have not been met,” says Kenly Sikwese of the Global Network of People Living with HIV. Sikwese says the government of Zambia has not prioritized children living with HIV and a policy focused specifically on children is needed.

According to ZARAN, many children are infected by MTCT, or mother-to-child-transmission in utero, and these children are often incorporated into the existing programs designed for their mothers. A recent ZARAN report indicated that the lack of child-specific services is due to the belief that such programming would require parental involvement, which is unlikely due to the high number of orphans and children with sick or absent parents here.

“We really need support for Elinate,” says Agogo. “I don’t want her to stop school and become like most girls who drink beer in the pubs. I want her to complete school so that she cares for herself and can acquire more information on how to live positively.”

Next year, Banda will sit for her seventh grade exams. If she makes it to the eighth grade, she says she doesn’t know how her family will send her. The local community and government schools only go up to seventh grade. Still, she says she wants to try.

“I am not good at mathematics, but I love English. I want to become a teacher or a pilot,” she says with a shy smile.