A primary-school student is diagnosed with tuberculosis in a leafy neighborhood outside Washington, DC. An infant with TB meningitis is transported by helicopter to a hospital in Eastern Canada. A preschool student in Smarves, France, is showing symptoms of TB a year after a classmate from the same school died from the disease.
These are just three victims of a TB epidemic that will afflict one million children this year. Among those who are fortunate enough to get the standard antibiotic treatment and have no complicating factors such as HIV, 99% will survive. And yet 90% of the children who die from TB have been deprived of treatment, and a quarter-million children will die from the disease this year alone. There are no nuances to this story: health-care authorities around the world are leaving kids with TB to fate.
If this sounds outrageous, consider the opening lines of a 2016 research paper by experts from Imperial College London, the Medical Research Council, and UNICEF. “Until recently, pediatric tuberculosis has been relatively neglected by the broader TB and the maternal and child health communities,” the authors write.
“Human rights-based approaches to children affected by TB could be powerful; however, awareness and application of such strategies is not widespread.” In other words, children with TB have been failed by the very communities meant to serve them, but few people are even aware of the problem.
Worldwide, TB kills more people than any other communicable disease. It is a serious public-health concern because the bacteria that cause it are easily spread through the air. But tackling TB in children is not the same as confronting it in adults. Because TB tests were designed for adults, they are not reliable for diagnosing children, who often present different symptoms.
This is one reason why children go untreated. But an even simpler explanation is that children are not as contagious as adults. When children cough, their weaker bodies expel fewer TB germs than adults do. And when TB afflicts children, the bacteria often attack body parts besides their lungs – such as the abdomen and the tissues surrounding the brain.
To be sure, individual health workers are not knowingly leaving children with TB to suffer and die. But health systems are. Globally, efforts to combat TB are under-resourced. And with more than ten million people contracting the disease every year, funds tend to be directed toward stopping its spread. So, even though children are one of the most vulnerable patient populations, their needs are ignored, because they are less contagious.
Owing to these system-level priorities, one million children are dying from a preventable, treatable condition every four years. That is a human-rights catastrophe.
Fortunately, practical life-saving measures to address the TB epidemic in children already exist. For example, we know that about half of all children living with a TB-infected adult will also contract the disease. Accordingly, one would expect children in households with an infected adult to be screened and given proper care. A 2017 study in The Lancet, however, finds that “household contact investigation remains severely underutilized” in countries where TB is common.
Moreover, health workers and public-health officials could catch far more cases of TB in children simply by paying closer attention to their symptoms. After the International Union Against Tuberculosis and Lung Disease started advocating this approach in Uganda, the number of diagnosed cases of pediatric TB more than doubled in areas where it was implemented. But, beyond this example, children have generally been left out of TB research, and we urgently need to develop new tools designed specifically for them.
TB in children is both a moral and a political problem. As such, governments should put human rights at the center of their TB strategies, policies, and public-health services. The Convention on the Rights of the Child – the most widely ratified treaty in the world – can serve as a guiding framework.
They should start this work immediately. In May, top health officials at the World Health Assembly in Geneva began making preparations for the High-Level Meeting on Tuberculosis at the United Nations General Assembly in September. For the first time in history, the world’s heads of state will gather to explore ways to end TB. The outcome will shape the international response to TB for years to come.
One hopes that world leaders will come to understand that the pediatric TB epidemic reflects widespread neglect of children’s fundamental rights, and could be dramatically curtailed with existing policy interventions. There is no longer any excuse for ignoring this scourge.
José Luis Castro is Executive Director of the International Union Against Tuberculosis and Lung Disease.
