It started with an earache. But children are prone to ear infections, and at first, Ms. Bhandary (name changed) was not too worried when her eight-year-old developed a mild swelling around the ear. But the infection proved intractable. “I took my child to see several doctors. They all prescribed multiple broad-spectrum antibiotics. Nothing worked,” she says. Diagnosis remained elusive.
Not a single doctor had even considered the possibility that her child had tuberculosis (TB). After all, this is a disease that carries the stigma of poverty and reinforces class divisions. The Bhandarys did not fit the stereotype. “TB is a great leveller,” says Dr. Tanu Singhal, an infectious disease specialist from Mumbai. “It’s a myth that families from higher socio-economic status won’t get TB. That said, malnutrition and overcrowding make children susceptible to TB, which is why it is a significant problem among the poor.”
The problem with numbers TB in children is overlooked and under-reported. In a June 2016 study published in The Lancet Infectious Diseases , researchers from the University of Sheffield and Imperial College, London, estimated that in 2014, around 8,50,000 children globally had developed full-blown TB. After emphasising that their data sets are more uncertain at a country level, lead researcher Pete Dodd estimates that around 1,30,000 children were from India. “This makes India the country with the largest burden of paediatric TB,” he says.
The incidence of paediatric tuberculosis is in proportion to that of adult TB, and experts in India believe that Dr. Dodd’s figures are a tad conservative. “The number of children with tuberculosis in India could be around 2 lakh for 2015, but only 99,000 were reported that year,” says Dr. Amar Shah, national consultant for HIV/TB for the Revised National Tuberculosis Control Program (RNTCP).
TB, the great leveller The word ‘estimate’ is used liberally as a caveat. And with good reason, too: the rate of infection is higher than what is being reported. “We estimate that there were a total of 22 lakh cases of TB—both adult and children— in 2015. But only 16.67 lakh has been reported,” Dr. Shah says, adding that one reason for this disparity is the lack of notification from private hospitals and family general practitioners.
“Children who are treated in the private sector may not get notified to the government, and may not be represented in these data sets,” says Dr. Singhal.
The stigma associated with the disease is entrenched in our society. The Bhandarys struggled with this new reality.
During a phone conversation, Ms. Bhandary was wary of saying the word ‘tuberculosis’ out loud. “I have no idea how my child got it. Nobody in our family has it,” she says.
As cities get more crowded, there is a higher probability of children — especially those under five years who have low immunity levels — contracting tuberculosis. “Mumbai is the epicentre of drug-resistant tuberculosis, especially multiple drug-resistant (MDR) TB,” says Dr. Ira Shah, who specialises in paediatric infectious diseases and is editor of the online journal Pediatric Oncall . Her recent study on the geographical and demographic profile of paediatric TB in Mumbai confirmed that the disease was prevalent across socio-economic classes.
There’s another reason for the under-reporting of paediatric TB: testing of children is difficult because samples have smaller number of bacteria, or paucibacillary. “We hope to overcome this with newer and faster testing methods,” says Dr. Sunil Khaparde, Deputy Director General of RNTCP. The RNTCP is encouraging health centres to use GenExpert, a molecular test that can detect the presence of TB bacteria in two hours. Dr. Ira Shah recommends that the GenExpert test must be confirmed by culture and drug susceptibility testing.
A timely and accurate diagnosis is the key to recovery. For a month, Ms. Bhandary — a heath-care practitioner herself — was in a place no parent wants to be in. But her child has recovered. “My child is a little underweight because of the drugs, but is healthy,” she says.
anjali.thomas@thehindu.co.in
