Children with tuberculosis have been neglected for too long. Children tend to have paucibacillary disease and therefore are less infectious than adults, meaning they have not been prioritised by the WHO global tuberculosis control strategy. This neglect has resulted in many problems. Firstly, there has been no impetus for governments to prioritise paediatric programmes. Secondly, diagnostics and drugs have not been adapted for children. And thirdly, inadequate reporting has meant that the exact scale of the problem is largely unknown.

This year’s global tuberculosis control report shows the beginning of a decline in the global tuberculosis epidemic, but there is a stark lack of data for children. There has been some work to show the burden of tuberculosis for women (320,000 million deaths in 2010), and there are new data on the number of orphans created from the tuberculosis epidemic (10 million in 2009). This shows the devastating effect of adult tuberculosis on children worldwide, but does not highlight the direct effect of the disease in children. Why are the data on children so poor? The problem is that many countries do not have age breakdowns of notification data. Added to this, the importance placed on smear positive disease naturally excludes children from being counted as they tend to be smear negative or have extrapulmonary disease.

Without a clear estimate of the magnitude of the problem it is hard to motivate governments, researchers, and donors. One fundamental example is the lack of appropriate drug formulations for children. Two years ago, WHO changed their treatment guidelines, increasing drug dosages for treating children. While this change was welcome, it has meant that the current fixed dose combinations are no longer appropriate. Tuberculosis programmes implementing the new guidelines need to use a complex dosing schedule, combining different fixed-dose combinations and single drug pills. This causes problems in procurement and means that each child has to take multiple tablets. What is urgently needed is a new fixed dose combination with the appropriate dosages for the new guidelines.

There is a growing feeling that this neglect has got to stop. At this year’s union world conference on lung health in Lille, a full day session on “Meeting the unmet needs of women and children for tuberculosis prevention, diagnosis and care: expanding our horizons” was well attended. The lack of accurate data was addressed, with Mario Raviglione, of the WHO stop TB department, pledging to have better paediatric data available for next year’s report. There was a call for parties to sign up to the “call for action for childhood TB,” which recognises the issues in tackling childhood tuberculosis and pledges to improve current efforts.

There was some optimism when research was presented on new tools for paediatric diagnosis, including the potential for a non-sputum based test. And at least one of the new drugs on the horizon for adult tuberculosis (bedaquiline/TMC207) has a planned paediatric element to its clinical trials.

While there is a lack of information and guidance for children with drug sensitive tuberculosis, the situation is far worse for children with drug resistant disease. At a symposium arranged by Médecins Sans Frontières, the difficulties faced in diagnosing and treating this group were highlighted, and a research partnership was launched by Harvard medical school and the national institute for research in tuberculosis in Chennai, India. The Sentinel Project on paediatric drug-resistant tuberculosis aims to develop and deploy evidence based strategies to prevent child deaths from drug resistant tuberculosis.

In the past, children with tuberculosis have been ignored and many have died, even though children do well on treatment and can be cured. A recent publication by Médecins Sans Frontières, “Out of the dark: meeting the needs of children with TB” is a practical guide showing what can be done with current tools and what is most needed now. An obvious next step is to ensure appropriate data collection so the exact magnitude of the problem can be revealed. At the same time, urgent action should be taken to define a new and appropriate paediatric fixed dose drug combination. In this way, children with tuberculosis will stand a chance to come out of the dark and into a better future.

Grania Brigden is the TB advisor for the MSF campaign for access to essential medicines.