In one of the most memorable moments in Victor Hugo's novel Les Misérables, Fantine gasps and begs with her last breath for the safety and protection of her young daughter Cosette. Fantine subsequently succumbs to consumption -- the disease now better known as tuberculosis (TB).
Many believe TB is the stuff of old novels -- a disease of the past. However, TB remains a global public health threat that kills nearly two million people every year. The WHO estimates 9 million people become sick with TB each year. Worse, 10-15 percent are children under 15. The real numbers of childhood TB are likely higher, because it is particularly difficult to effectively diagnose TB in children with existing diagnostics. When a child is living with HIV, diagnosis is next to impossible.
ACTION's new report, Children and Tuberculosis: Exposing a Hidden Epidemic, exposes the link between TB and orphaned and vulnerable children, malnourished children or children living with HIV. This research builds on a recently released ACTION report which calls for prevention and treatment to not only save lives now, but also to stop more deadly drug resistant strains of the virus. The spread of Multidrug-resistant TB in Europe outlined in TB Voices and the World Health Organization's (WHO) subsequent plan to fight MDR TB recently received worldwide attention, but immediate action from world leaders is still urgently needed.
New rapid diagnostic tools like the DNA-based Xpert may be useful in diagnosing TB in children, but more research is needed so that Xpert can be approved for this. Instead we rely on poor diagnostics and antiquated treatment. Doctors are forced to estimate doses for children that are diagnosed by cutting adult doses of pills into halves and quarters. Children who end up with multiple drug resistant TB will have to take a thousand pills over the course of treatment and will have a 1 in 4 chance of going deaf. The vaccine to prevent TB hardly works and can actually harm a child with HIV.
The WHO has proposed one pill with child specific dosing called a 'Fixed Dose Combination' (FDC), to eliminate the risks of improper dosing, however although this FDC is said to be a top research priority for addressing childhood TB - there is no funding.
According to Dr. Jeffrey Starke, a leading TB specialist at Texas Children's Hospital, childhood TB 'is a fundamentally different disease from adult tuberculosis. Its proper diagnosis, treatment, and prevention require specific planning and resources.'
Dr. Stark is right. So where do we start?
We start with good news: TB is treatable and preventable. The bad news: the only existing tuberculosis vaccine was created before World War II and isn't very effective, and the most widely-used TB diagnostic tool predates the automobile. To save lives, we must begin acknowledging that TB is not a disease of the past and get serious about universal prevention and treatment.
If we continue to neglect the burden of TB, it will needlessly take more children's lives. The stories of Anthony in Texas and Abhijat and Abhishakt in India included in Exposing a Hidden Epidemic remind us that TB can go undiagnosed or misdiagnosed anywhere - with great risk to children. Even in state of the art facilities in Texas.
Through our eye-opening report, ACTION partners around the world urge immediate and decisive action from world leaders to stop ignoring tuberculosis as a pandemic and instead work to increase funding for TB research and treatment to save all lives - including the most neglected children and continue to fully fund The Global Fund to Fight AIDS, TB and Malaria.
Kolleen Bouchane is the director of ACTION (Advocacy to Control TB Internationally), an international partnership of civil society advocates working to mobilize resources to treat and prevent the spread of tuberculosis (TB), a global disease that kills one person every 20 seconds.