Children forgotten part of AIDS picture

The forgotten faces of the AIDS epidemic belong to children: infected, neglected, and orphaned by a disease that ravages not only their bodies, but also their families and communities, according to a gathering of international AIDS experts Monday (Sept. 24).

Though one out of six AIDS deaths globally is a child, children are less often targeted for intervention than adults. Support for children infected or orphaned by the disease most often comes from extended family members or from organizations within their community.

UNAIDS Executive Director Peter Piot called for more money, more data, and more activism on behalf of children. According to UNAIDS statistics, 2.3 million children were living with HIV worldwide in 2006 and more than 500,000 were newly infected that year.

Piot delivered the keynote address at a daylong symposium, “Meeting Children’s Needs in a World with HIV/AIDS,” at Harvard Medical School. The event brought together activists, practitioners and officials from around the world to discuss ways to improve the lot of children whose lives have been impacted by the disease.

The event was sponsored by the Joint Learning Initiative on Children and HIV/AIDS (JLICA), a broadly based collaborative that seeks to engage scientists, policymakers, activists, and community leaders to spur new ideas and design practical solutions for the HIV/AIDS crisis. JLICA’s secretariat is hosted by the Harvard School of Public Health’s François-Xavier Bagnoud Center for Health and Human Rights.

JLICA Co-Chair Peter Bell, a senior research fellow at the Hauser Center for Nonprofit Organizations at Harvard and president emeritus of CARE, said children have been “neglected and marginalized” but that there is progress in addressing their needs.

Nongovernmental organizations, a growing number of in-country social groups, and governments of some nations are becoming increasingly engaged in the problem.

“Yet even with these encouraging signs of awakening, we have a long way to go,” Bell said.

JLICA’s work is about halfway done, Bell said, and Monday’s symposium was intended to help take stock of progress and elicit feedback. Consensus is emerging, he said, that interventions should be family-centered, community-based, and integrated with society’s broader responses to the AIDS problem.

“As we near the midpoint of the Joint Learning Initiative, we’re well beyond the point of wringing our hands over the plight of children. As important as it is to diagnose the problem, now we need to do something,” Bell said.

The symposium featured several panel discussions on topics ranging from strengthening families and communities to the link between child development and economic development. The talks also focused on the need to increase access to existing programs and the ability of poor countries to afford them. Speakers addressed several hundred attendees in the auditorium of Harvard Medical School’s New Research Building.

In his speech, Piot said that there will be no single solution to the problem, because the problem itself is complex.

Children become infected with the virus through a variety of means, each of which will require different interventions. Much attention has already focused on minimizing mother-child transmission during pregnancy, but the majority of children are infected sexually.

That will require examining the modes of sexual contact endangering children, Piot said, which includes child sex trafficking, incest, sex with older partners, and sex between consenting adolescents.

In some parts of the world, Piot said, drug use is another major mode of infection, as users share infected needles.

AIDS affects not only children infected with the disease but also those who are not. AIDS orphans will make up a significant part of the coming generation, with 15 million worldwide — 12 million in sub-Saharan Africa alone.

Research increasingly shows that these orphaned children are at great risk as they grow up, and the risks differ between children who lose both parents and even between those who lose a mother or a father.

Those at greatest risk, research shows, are girls who’ve lost their mothers to AIDS. They are at higher risk of beginning sexual activity younger and becoming infected themselves, according to Douglas Webb, of UNICEF’s Eastern and Southern Africa Regional Office, who spoke on a morning panel.

“The girl who has lost her mother is emerging as the most vulnerable child in Africa,” Webb said.

Despite the problems facing AIDS orphans, Webb said interventions shouldn’t be focused specifically on orphans, but rather on more broadly supporting the social systems that support children. Several speakers mentioned a new movement in some developing countries to begin cash payments to poorer communities hard-hit by AIDS. Despite the still-gloomy picture of the AIDS epidemic, progress has been made on some fronts, Piot said. Anti-retroviral drugs, which were once thought impossible to administer in developing nations without public health infrastructure, are now commonly used. From just 100,000 developing-world patients getting antiretroviral drugs six years ago, 2.5 million in developing countries are getting them today, he said.

The epidemic has begun to level off in some countries, he said, though nations with very high infection rates and countries at war are notable exceptions.

As a consequence, he said, a new reality is dawning. Children who are infected with HIV are living into adolescence, not remembering life without AIDS. Major efforts are needed not only to treat those infected but also to prevent new infections. The challenge, he said, is to think long term even as officials deal with the daily crisis around the world.

“We must take steps today to ensure that a girl born today doesn’t get infected and pass it on to her child,” Piot said.