The little girl squirms and tries to break free from the adults pinning her down, her terrified eyes as wide as saucers and her screams muffled by the tube they are trying to thread down her throat. Her mother grimaces as she tries to reassure her, but the tremble in her voice doesn’t hide her own terror at seeing her little one in such distress. The doctor and nurses turn the child on her side in case she vomits.
Zodwa Dlamini* is still in a state of shock. A week earlier she had taken Busi* to the clinic. The mother had tried to suppress the nagging voice in her head, but she knew the classic symptoms well – night sweats, weight loss, coughing – symptoms she had been confronted with herself barely two years earlier when she had been told that she had tuberculosis and which were now manifesting in her little one.
Before Dlamini, 27, had time to process it all, her child was on TB treatment, which equated to taking a handful of huge, unpalatable tablets every day.
This morning they find themselves back at their local hospital in an attempt to get sputum from Busi’s stomach.
The sputum will be tested in the hope of excluding drug-resistant TB, a diagnosis that would mean a long spell in hospital, painful injections, more drugs and no guarantee of a cure for the five-year-old girl.
Tomorrow is World TB Day and this year’s theme is “Our goal: No TB deaths for children”.
According to statistics from The International Union against TB and Lung Disease (The Union), an estimated 1 million children aged 14 years and under will need TB treatment this year – and some experts claim the number is much higher.
Two hundred children die of TB every day. Yet it costs less than 3c a day to provide therapy that will prevent children from becoming ill with TB and 50c a day to provide treatment that will cure the disease.
TB in children is typically under-detected and under-reported, reflecting its low priority on the public health agenda.
“Historically, TB control efforts have not focused on children because the majority are smear-negative and therefore not a major source of infection”, says Dr Steve Graham of the Child Lung Health Division of The Union. “With limited resources, the focus was put where it seemed most critical – on adults with smear-positive TB.”
Infants and young children are more likely to develop TB that disseminates throughout the body and TB meningitis, both of which carry a high risk of death and disability. Children who are HIV positive additionally face a twentyfold greater risk of developing TB than uninfected children.
Dr Mario Raviglione, director of the World Health Organisation’s Stop TB department, says that despite the gains in addressing the adult TB epidemic, to a large extent, children have been left behind, and childhood TB remains a hidden epidemic in most countries.
Professor Robert Gie of the department of paediatrics and child health at Stellenbosch University, agrees that TB in children has been neglected for years and that it is only relatively recently that some attention is being paid to how this disease affects children.
“Tuberculosis is politics and it’s the politics of poverty and the struggle now is to get countries to look after their children,” says Gie, who chaired a WHO sub-group for children until recently.
“This policy to only treat the adults and ignore the children had a disastrous effect.”
For years there was no research done on paediatric TB, which meant no diagnostic tests and no drugs adapted into child-friendly tablets.
“We think that only about half of children with TB are accessing care,” says Gie.
But, he says, there have been positive developments, with a drive for child-friendly diagnostics, a better understanding of the dosages needed to effectively treat children and the possibility of a lighter pill burden on the horizon.
“Children are the consequence of the epidemic. The first group that will show you whether you are controlling the TB epidemic will be the children,” Gie adds.
Despite the advancements, he is yet to see any countries, apart from the US and some in Europe, that have successfully prevented TB in children. And he has visited more than 50 countries.
“We know it boils down to contact screening and management, but nobody does it. It’s not sexy and health-care providers at clinic level don’t think it’s necessary. Basically they do the maths and know that they need to treat 100 children to prevent one case of adult TB, so they just don’t see the advantage,” says Gie.
Dr James Seddon, visiting researcher at the Desmond Tutu TB Centre, has been investigating the treatment of drug-resistant TB in children. “We are just rubbish at finding those children who have been exposed to TB and either treating them or making sure that we prevent them from developing disease.”
In terms of treating drug-resistant TB, Seddon says the options available for children are “disastrous”.
“We have nothing specifically for children, so we are really figuring out how much to give and how to break and divide the tablets to give the children the correct dosages. Even then, we are not completely sure what level of medication in the blood is needed to ensure we will kill the bugs.”
To cure drug-resistant TB, a child is mostly admitted to hospital to receive multiple drugs, including some that are given by injection. The drugs are old with severe side effects and not many clinicians have the know-how to treat these children.
“Children really need to be a priority, they deserve better. It really has been a case of dealing with everything else first and then the children,” says Seddon. – Health-e News Service
* Not their real names