04/06/08

ILLINOIS:  For Children with HIV, Growing Up Is a New ‘Frontier’

During the late 1980s to mid-1990s, thousands of parents adopted babies with HIV/AIDS before the advent of antiretroviral drugs (ARVs) created the prospect of children surviving the disease. Before there were robust therapies, between one-quarter and one-third of HIV-infected infants died within the first two years of life, and half survived just nine years, according to CDC.

Between 1980 and 1998, US mothers who died of AIDS orphaned 20,715 HIV-positive children, according to a 2003 Journal of Acquired Immune Deficiency Syndromes study. Since the mid-1990s, several reports found that infants who began HIV treatment within the first six months of life were still living two to five years later. But there are no data on how many of the infected children are being raised by adults who are not their relatives.

"This is the frontier," said Diana Bruce, director of policy at AIDS Alliance for Children, Youth & Families in Washington. "We have never before dealt with these kids. They used to die and now they are not." "We don't know how long people with HIV will live," she continued. "There is still a lot we don't know."

In 1989, the Illinois Department of Children and Family Services struggled to find homes for about 30 "AIDS babies," said Elizabeth Monk, specialty services administrator. Between 1986 and 1996, 191 wards were HIV-infected by their mothers and more than 40 children died. In the next decade, there were 42 infected wards and 17 deaths, according to state figures.

One adoptee, Lisa Robinson-Ross, now 22, dreams of becoming a nurse who works with babies and thinks about having a family of her own some day. A couple in Chicago, both 72, who used to worry about their adopted daughters' health now are making plans for when their girls - now ages 15 and 17 - outlive them. "My chances of giving them away at a wedding might not happen," the father says. "It would be nice to see them graduate from college."

Source: Chicago Tribune:: Ofelia Casillas; Courtesy of the CDC National Center for HIV, STD, and TB Prevention