Shelter amid a health care storm
Programs join forces to house, counsel AIDS orphans
South Africa's Valley of 1,000 Hills is a broad and breathtaking natural contradiction, an enormous valley whose floor is crowded with hills large and small, as if nature wasn't quite sure what it was making.
Despite its beauty, the valley is a sorrowful place for many who live on its steep slopes. Too many of the small homes whose metal roofs shine in the sun shelter people living with HIV, the virus that causes AIDS.
Though public education and drug distribution campaigns are under way in South Africa, AIDS remains an enormous problem in this impoverished part of one of the continent's richest countries. Antiretroviral drug distribution programs that began nationwide in 2004 have been slow to reach rural areas like this valley. Harvard Medical School and Massachusetts General Hospital faculty members are involved in a partnership that aims to help the poorest and most vulnerable victims scattered in these homes: the children that AIDS has orphaned.
Recent statistics from the Joint United Nations Programme on HIV/AIDS (UNAIDS) estimate that South Africa has 1.2 million children who've lost one or both parents to AIDS. Without parents to guide them, these children face struggles both today and in the future. Meeting daily needs of food, clothing, and housing is an immediate challenge, and the children's difficulties put them at higher risk for future problems, such as early sexual activity, which would increase the danger of contracting HIV themselves.
Bisola Ojikutu, director of the Office of International Programs for Harvard Medical School's Division of AIDS and an infectious disease clinician at Harvard-affiliated Massachusetts General Hospital, founded the Umndeni Care Program two years ago to provide AIDS-related services to orphans.
The program — named for the Zulu word for "family" — is a collaboration between the Harvard Initiative for Global Health, the nonprofit Valley Trust, and Habitat for Humanity's AIDS Orphan Housing Program, which in 2005 began to build homes — 72 as of February 2008 — for families sheltering AIDS orphans. Through the Umndeni Care Program, Ojikutu and her staff of 10 regularly visit the Habitat homes with a suite of wraparound AIDS-focused services that provide information, support, and referrals to resources and programs in the community.
"Habitat deals with housing and poverty, but doesn't address AIDS directly," Ojikutu said. "The key issue is bringing care, treatment, and support into the community. Harvard is having an impact, but doing it in collaboration with people [and organizations] that are there on the ground."
Ojikutu's work, which began in 2006, is just part of an enormous and diverse health and medical enterprise at Harvard and its affiliated institutions. Researchers toil away to understand everything from the genetic code of the malaria parasite to the impact of air quality on human health, instructors impart the latest in medical knowledge to top students, and colleagues at Harvard's many affiliated institutions not only teach and conduct research of their own, they also put that knowledge into action to improve people's lives — in Boston and around the globe.
One household touched by both AIDS and the Umndeni Care Program consists of a grandmother, Anna, 76; two orphaned children of her sister-in-law whom she's taken in; her daughter, Jabu, who has AIDS; and Jabu's own two children.
The makeshift family is not unusual in South Africa's hard-hit KwaZulu Natal province, where caregivers in the prime of their lives have been killed by AIDS, leaving the elderly to rear a second generation after their own children have grown.
Anna and Jabu's household has three small buildings perched on a narrow terrace carved into a hillside. The compound consists of a mud-walled rondavel , the Zulus' traditional round home; an older, square home where Jabu and her children live; and the new stone house, built through the Habitat for Humanity AIDS Orphan Housing Program. Though small like other homes in the region, the new house has bedrooms for Anna and the children as well as a sitting room and kitchen area.
During a visit in February 2008, Anna and her Umndeni Care community worker, Noluthando Mtshali, spoke not just about AIDS-related issues, but also about topics such as when electricity would be flowing into the home, how the children were doing in school, and relations with neighbors. In response to Mtshali's questions, Anna said that she tells people that she's caring for orphans and her sick daughter, which satisfies those who wonder about the Umndeni Care visits.
Anna credited Umndeni Care with saving Jabu's life, saying the organization connected her with treatment services that started her on antiretroviral drugs.
Before her diagnosis in early 2007, Jabu said she could barely walk up the steep hills that are part of life in this region. She also suffered diarrhea, weight loss, and nonstop coughing that tests found was not caused by tuberculosis. She said she was sad when she found out she was infected with HIV, but said the counseling she received, facilitated by the Umndeni Care Program, helped.
Jabu's recovery has been noticed by those around her. A man stopped her recently and asked her how she was able to "rise again" after being so sick with HIV.
"The big thing was [Umndeni Care Program] linking Jabu to clinical care. If [they had] never came out and took action, Jabu would not be here. She'd be dead," Anna said.
At another home, built by Habitat in 2007 and regularly visited by the Umndeni Care Program, 31-year-old Thokozile has taken care of her two younger brothers since her parents died in 1996. Just 20 then, Thokozile said it was difficult to assume the family leadership, but she had no choice but to accept it. She dropped out of school and went to work and has since added a child of her own to the household. In addition to the other support, Umndeni Care provides monthly packages of food, she said.
Umndeni Care's work provides critical support for already broken families as the Valley of 1,000 Hills' communities deal with the AIDS epidemic, Mtshali said. On a personal level, Mtshali said she's glad to be able to help the people she grew up with deal with an epidemic that has touched so many lives.
"There has been a huge impact by HIV in this community; a lot of people have passed away because they didn't want to admit they were HIV positive," Mtshali said. "They keep it to themselves until they pass away."