AIDS orphan programs strengthen communities but need improved antiretroviral treatment links

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From left to right: Sibongile Gladys Gule, Penelope Masiya, Nomthandazo Ntuli, and session moderator Richard Lui.

Three women told an audience last week how PEPFAR programs to reach the most helpless of people in the path of the AIDS epidemic changed their lives.

Sibongile Gladys Gule told how working with the PEPFAR-funded Isibindi program for orphans and vulnerable children in Kwa-Zulu Natal gave her the chance she had been waiting for, “to be part of the transformation of my community,” and to get training to meet children’s needs better.

Nomthandazo Ntuli told how after her mother died, Isibindi stepped in to link them to social services, housing, school, and also helping her and her siblings grieve, making “memory boxes.”

Penelope Masiya told how more than 15 years ago, as a mother of three, she was shattered when, diagnosed with HIV she was told she had three months to live, but that now, with four healthy children, she sees a future of unbounded promise. That was thanks to a PEPFAR-funded program in South Africa called Future Families.

But their stories came after sobering reminder at the start of the program on PEPFAR’s Orphans and Vulnerable Children Program at the Kaiser Family Foundation in Washington, DC last week, of one critical service that remains lacking for those who can’t seek help on their own — a link to medical services for children living with HIV and to life-saving antiretroviral treatment. With a goal that 90 percent of children living with HIV be receiving antiretroviral treatment, Deborah von Zinkernagel, Principal Deputy Global AIDS Coordinator in the Office of the U.S. Global AIDS Coordinator noted, most countries receiving PEPFAR support can show no more than 50 percent pediatric antiretroviral treatment coverage, and in many antiretroviral treatment reaches less than 10 percent of the children who need it. A bar chart illustrated the gaping disparity between adults’ and children’s access to antiretroviral treatment, and the even greater gap between what the World Health Organization recommends, and the reality facing HIV-infected children in need of antiretroviral treatment.

This, in turn, followed a pre-World AIDS Day update from UNAIDS showing that accelerated and sustained progress in the AIDS response has yet to begin to reach children and the “key populations” of men who have sex with men, people who inject drugs, and sex workers, at rates that can be called promising. That update showed that in countries considered “priority” recipients of AIDS responses, just three in 10 children receive HIV treatment under 2010 WHO guidelines, and that in 2012 antiretroviral treatment coverage remained half of coverage for adults under previous guidelines.

How alone some of those children are was underscored at the end of the three women’s presentation last week, when they answered what needs to happen to help the AIDS epidemic’s youngest victims through the next 10 years, and Sinbongile Gule of Isibindi said children who have become the head of their households need more help.

And Ntuli, who saw her mother die, said, “Nongovernment organizations need to work hand in hand with the medical sector to make sure orphans and vulnerable children get treatment.”

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