When a disease spreads among people living in close quarters and poverty, the question of how hard it is hitting some of the most vulnerable people in its path seems obvious: How many children are suffering from, and dying of tuberculosis?
The answer: Nobody seems to know.
Numbers are just the tip of the iceberg of what is missing in the response to tuberculosis among children in national programs, donor responses and scientific efforts, the deficits of which are tallied in brief released by the nonprofit ACTION partnership today. Children and Tuberculosis, From Neglect to Action is ACTION’s second brief on the epidemic’s impact on children. The first, Children and Tuberculosis, Exposing a Hidden Epidemic attracted attention, and has led to responses, according to the organization, but obstacles to preventing, diagnosing and treating tuberculosis in children still loom large.
“It’s impact has been terribly underestimated,” Dr. Jeffrey Starke, a Houston-based tuberculosis specialist who contributed to both briefs, told Science Speaks. Starke now is contributing to a World Health Organization strategic plan to respond to childhood tuberculosis. So how do you build a plan to address an epidemic that has been ignored?
“To be honest, everything needs to be done, starting with an analysis of exactly what the problem is,” Starke said.
The problem begins with challenges to diagnosing the disease in children, for whom existing tests to reveal the bacteria don’t work well.
“If your basis for making a diagnosis is finding the organism, you’ll miss the vast majority of cases,” Starke said.
Even in the United States, tuberculosis diagnoses in children largely depend on linking four factors: symptoms, an abnormal chest X-ray, a positive skin or blood test that shows the presence of infection, and exposure to a person with tuberculosis.
When everything is working optimally, that’s the gold standard, Starke says. In countries grappling with tuberculosis epidemics, healthcare system gaps make assessing those factors together unlikely.
“Children literally fall through the cracks, Starke said. “The TB system is not set up for children, and the childcare system is not set up for tuberculosis. No one’s to blame, no one is at fault, but that’s what happens.”
While Starke says pediatricians, government programs and nongovernment organizations will have to work together to build children-appropriate tuberculosis responses, that’s only a small part of the answer.
“Make no mistake,” Starke said. “We need better diagnostic tests.”
Ideally, he says, that would be a test of blood or urine that could be administered at the point of care.
“No such thing exists,” he said. “That’s what we desperately need, that’s what we’re asking industry to work on.”
That, too, will reveal only a bit more of the tip of iceberg, it is clear. The brief spells out the ways inequities in opportunity, nutrition, healthcare, living conditions contribute to the impact of tuberculosis on children.
For Starke, the gathering awareness is a heartening glimpse of light.
“I’ve been involved in childhood tuberculosis for a long time, and this is the most optimistic I’ve been in a long time.”
For more on childhood tuberculosis, watch Archbishop Desmond Tutu, accepting the Stop TB Partnership Kochon Prize, on behalf of the Desmond Tutu Centre at Stellenbosch University in South Africa’s Western Cape. The award was announced today at the 43rd World Union Conference on Lung Health in Kuala Lumpur, Malaysia.