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Childhood TB Advocacy Picks Up Steam

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tagline Spring 2012

by Coco Jervis

The neglected crisis of childhood tuberculosis (TB) is finally garnering some long-overdue attention. TAG hosted Forgotten But Not Gone: Childhood TB, a federal advocacy dialogue and strategy session in Washington, D.C. this January. We brought together over 50 researchers, clinicians, implementers, and global advocates from the TB, HIV, and maternal- and child-health communities to advance the discussion.

While TB remains a leading killer of children worldwide, prevention, diagnosis, and treatment of TB in children have been largely absent from the global public health agenda. It is estimated that of the nine million new cases of TB each year, one million occur in children under the age of 15. However, since many cases go undetected or unreported, the number of children with TB may in fact be vastly higher. Making matters still more urgent, the death of one in three children with AIDS is caused by TB. The reason that childhood TB remains a neglected disease goes beyond just lack of accurate numbers; it is also because of perception. There is a prevailing belief in the public-health community that children with TB are not contagious, and policy makers have been led to believe that treating adults is enough. These beliefs belie the truth that new approaches to preventing and diagnosing TB in infants and children, particularly those with HIV, are desperately needed.

One of the highlights of the January meeting was an incredibly moving personal account of hardship and struggle by a young Texas mother whose toddler son was diagnosed with drug resistant TB meningitis over a year ago. Other speakers provided engaging analysis of the need for more research on a better vaccine; pediatric dosing of new and old drugs; and more effective diagnostics and infection control. One speaker, Jeffrey Starke, a professor of pediatrics at the Baylor College of Medicine who also works at Texas Children’s Hospital lamented the fact that children with untreated latent TB often grow up to be adults with active TB. “The opportunity to intervene when they were young was missed,” said Starke, which is why “there’s probably more TB now than at any other time in the history of mankind.”

January’s federal advocacy meeting had two important outcomes. First, everyone agreed that more needs to be done to advance awareness of and action on childhood TB treatment, care, and research; meeting participants joined working groups and are taking concrete steps to deepen their engagement with these issues. Second, the WHO and the Stop TB Partnership have made the goal of zero TB deaths in children the main theme and advocacy call for this year’s World TB Day (March 24). TAG has been working with advocates on the international level to develop a roadmap for advocacy, and cohosting congressional TB briefings to highlight childhood TB advocacy. •